How not to buy a wheelchair:

[mariness]

How not to get a wheelchair:

1. Admit, after significant badgering from family and friends, and after a very bad fall, that you need one.*

2. Head to wheelchair convention and try out some lightweight manual wheelchairs designed for shorter people. Cheer up and realize that maybe a wheelchair isn't so bad. Receive assurances from many very hot women and men that wheelchairs are actually very hot and sexy and you will look just fine in one and a lot better than you will look with a broken knee.

3. Easily get a script from the doctor. Feel reassured, knowing that central Florida's large elderly and disabled population means that a large selection of wheelchairs are readily available at a number of excellent and helpful medical supply centers, with trained staff willing and able to assist you in measuring you and working with you to provide the best wheelchair for your needs.

4. Call Cigna, an entity that terms itself a health insurance organization, and receive specific confirmation that yes, yes, they do cover supplies from Colonial Medical Supplies, based in downtown Orlando, as long as a prescription is provided.

5. Fuel up with French food. (Yay Sweet Traditions Bakery in downtown Winter Garden!)

6. Head to Colonial Medical Supplies. Because, to repeat the point, you have been assured by no less of an authority than Cigna that products purchased with a prescription at Colonial Medical Supplies will be covered by Cigna.

7. Be informed, kindly and regretfully, by a sales agent at Colonial Medical Supplies that in point of fact, they do not have an account with Cigna and that products, including wheelchairs, purchased at Colonial Medical Supplies, with or without a prescription, will not be covered by Cigna, and that in actual fact Cigna has never paid for any supplies purchased at Colonial Medical Supplies. "They keep sending people to us," the agent says. "I don't know why."

8. Call Cigna's 800 number and spend a few happy moments chatting with a computer.

9. Confirm with Cigna's agent that although just last week they claimed they did, indeed, work with Colonial Medical Supplies, in actual fact they do no such thing and never have. Receive names of two other companies in Orange County that absolutely, positively are durable medical supply companies that absolutely, positively will have wheelchairs available and that absolutely, positively work with Cigna.

10. Contact first company named. Number has been disconnected. Contact second company. Number has also been disconnected.

11. Contact AT&T Directory Assistance. Confirm that the second company does not in point of fact exist anyplace in Florida. AT&T is slightly more dubious about the first company, giving three potential companies with similar names. AT&T directory assistance person confides that this is why she no longer works for health insurance companies. "You wouldn't believe it but honestly having people shout at me here is so much less stressful."

12. Two of the companies named by AT&T do not sell wheelchairs. The third terminated its relationship with Cigna last year.

13. Call Cigna's 800 number and spend a few happy moments chatting with a computer.

14. Reach Cigna agent, who initially checks my address and notes that Cigna apparently does not cover any wheelchair suppliers in my zip code, Winter Garden. Announce that I am quite happy to go anywhere in Orange or Seminole Counties for the wheelchair, and that given that I am physically located in downtown Orlando, not in Winter Garden, at this moment, because Cigna sent me there, the Winter Garden address is irrelevant, even if a Winter Garden zip code is attached to the account. Agent cheers up and says chirpily that Cigna covers several wheelchair supply stores and she'll conference call me in.

15. Spend the next forty-five minutes listening to Cigna agent dial various companies listed in their database as customized wheelchair suppliers. These include: an emergency walk in clinic, a supplier of post-mastectomy supplies and breast reconstruction services, "the number you have reached is not in service...", two physical therapy rehab centers, two more companies that refuse to work with Cigna, and a drug addiction treatment center. Begin to question the quality of the Cigna database of customized wheelchair suppliers.

16. Reach a company that may possibly have customized wheelchairs. When the name "Cigna" is mentioned, there is a distinct hesitation on the other side of the phone.

17. Sympathize deeply with this hesitation. Realize, at the same time, that you have in no way consumed enough alcohol to deal with this.

18. Company reluctantly admits to working with Cigna, but is unsure what wheelchairs might be available, and asks for my location.

19. "She lives in Winter Park." "Garden!" "Oh, Winter – what was that?" "NEVER MIND. I can get to to Winter Park." [For non locals, they're about a half hour to forty-five minutes apart, but by that time I really didn't care.]

20. Company even more reluctantly agrees that they do, in fact, have a location in Altamonte Springs, but they are not sure about the wheelchair availability. (The person we were speaking to was in Atlanta.) I give my height, weight and medical condition. Altamonte Springs location is called.

21. Several minutes later, Altamonte Springs location confirms that it does not have wheelchairs.

22. Still cheery Cigna agent announces that we still have one more company on the list! The next company, she assures me, is a national supplier of wheelchairs without a local Orlando location that can come directly to your door.

23. Point out to Cigna agent that this wheelchair is not a temporary thing and the general idea, agreed upon by Cigna originally, was that I would be able to go and try out different models to ensure that I found one that met my needs so that I don't have to buy any more wheelchairs in the future, and that no, I do not just want a random wheelchair shipped to my door. Cigna agent assures me that Cigna wants the same thing. She calls the national supplier of wheelchairs.

24. National supplier of wheelchairs no longer works with Cigna. They provide another company, who, interestingly enough, is not in the Cigna database. Next company is called.

25. AT&T drops the Cigna call.

26. Realize yet again that wheelchair shopping should not be done without the assistance of hard liquor. Purse is regrettably free of hard liquor.

27. Start calling next company; during that call, Cigna agent calls, resulting in some confusion. Cigna agent explains that this particular company does work with Cigna. Nearly fall over in shock. The bad news is that they do not accept calls from patients. My doctor needs to call them, explain my needs, and then they will send a wheelchair right to my door. If it needs to be adjusted for my height and weight, they can do that then.

28. Explain, again, that this is a long term wheelchair and that Cigna had agreed that I could be properly measured for a wheelchair that would be the right size (I have difficulty with standard sized wheelchairs because I'm short) and that I would be allowed to try out different wheelchairs to ensure I was in one that met my needs. "Well, you can call them and explain that, and you can have your doctor explain what you need."

29. "A. Wheelchair."

30. Clarify that what this means is that despite my policy that includes customized wheelchairs, Cigna has no actual way of letting me purchase, with my health insurance, a customized wheelchair fitted for my height and weight in central Florida, even though I will be paying 30% of the price.

31. Imagine what things might have been like if I'd been trying to buy a power chair.

32. Think just how many people – me, my parents, two different Cigna agents, AT&T, various receptionists, sales agents, and so on – had to waste significant time on this because of Cigna's inability to keep their computer database updated.

(In all fairness, it is possible that the Cigna agent misunderstood and that this final company can provide customized wheelchairs – I was too exhausted to call them again once I got home, but I will be following up on this.)

33. Ah, migraine. How nice to realize that for once, you have arrived with a genuine and completely explicable cause.

34. On the bright side, this means that I entirely missed the whole boy not in a balloon story.

********

According to Forbes, Cigna CEO H. Edward Hanway earned $12,236,740 in 2008; here's some more fun stuff about Cigna's revenue and profit in 2nd quarter 2009.

*********

* I have been using a standard issue wheelchair, but it's too heavy for me to use without assistance and is designed for taller people. The idea is to get an ultralight wheelchair designed for petite women – which do exist and are readily available, if perhaps not through Cigna – to increase my independence and have my friends stop worrying about me when I'm walking.

Comments

[synecdochic]

Linked via cofax7, and oh let me tell you, honey, I hear your pain. (I bought mine OOP, instead of through the insurance company, for this very reason.)

The best thing to do at this point, IMO, is to go to an online provider. If you shop carefully, and get one that's adjustable, you can get a decent one without fitting, and good wheelchairs (ie, the long-term ones) can be adjusted surprisingly much post-market.

I am a short fat chick, and I use the Quickie Revolution, in hot pink, mind you, which is a very awesome folding(!) ultralight with great stability -- the only flaw is that the scissor-lock brakes suck donkey nads; I haven't tried the swingaway ones, but they can't possibly be worse. It folds like a lawn chair and stows in the trunk of the car. (I have heard rumor that it even fits in an airplane overhead bin; I've not found a flight attendant who will let me try yet, alas.) It is 24lb. Did I mention the hot pink?

You can get a very good price at Sportaid, which is where I got mine, or order direct from mfr. I would get it in writing from the dogfuckers Cigna that they will reimburse you.

In measuring: You want the seat depth to be at least 1" less than you think you do. You do not want armrests. (It makes it very hard to push yourself, which is what you are going to want to do most of the time.) You want at least 4 degrees of camber; I wish I'd gone for 8, and will be swapping out the camber tube soon. (More camber = better mechanical advantage. Makes your profile a little wider, but not horribly so.)

I will happily talk your ear off about the process of ordering mine, and what I wish I'd gotten and not gotten, if you decide to go that route.

[mariness]

Much, much thanks for the recommendations. 24 lbs???? That would be awesome! I'll look into those.

My COBRA insurance expires in December, so I'll be paying out of pocket at that point anyway (since on disability I earn too much money for Medicaid and I'm not eligible for Medicare, and with two pre-existing conditions, one linked with cancer, we can forget the idea of regular insurance.) I just wanted to get Cigna to help pay for this one (I'm paying part of the cost anyway) since - I'll shock you - I'm not independently wealthy.

The problem is that my policy (I looked it up) specifically states that durable medical equipment has to be provided through a Cigna-approved provider (unlike out of network doctors that are just covered at a lower rate). Some tests do as well (this is why we are still arguing over the billing for a CT scan performed at the Mayo Clinic - apparently there was another Cigna approved CT scan place in Jacksonville, but Mayo wanted that done at Mayo and to be honest I never even thought of checking for other CT places).

I'm off to check out your links now!!!

[synecdochic]

Ah, yeah. Insurance policies are fun like that, aren't they?

Having done this song and dance myself (I'm self-employed, with Ehlers-Danlos Syndrome, one of those fun disorders that come comorbid with everything else under the sun), I discovered my state has a medical insurance program that isn't for high-risk patients, just people who don't have any other option, that nobody knows about. I did some Googling, and it looks like Florida has a similar program: Cover Florida. They must take you if you're converting your COBRA (HIPAA makes that necessary anyway) and the pre-existing condition blackout is only a year.

It looks like, with your location, you could get coverage through Blue Cross or UHC, neither of which are Cigna. (I've had some good luck with BCBS, which is who MD's state plan is through.) The monthly rates are really cheap, but that's because they don't cover everything that a private plan might -- but being underinsured is better than being uninsured, right?

(Apologies if you were already aware of all this; I've found that most people don't know about their state options for health insurance that aren't the high-risk pool, which often costs thousands of dollars a month. I pay $250/month for my insurance through the MHIP program, which is a). cheaper than the COBRA was and b). so fucking much cheaper than an individual policy would be (I was quoted stuff in the four figures monthly.)

[mariness]

:: nods :: I'd already planned to join CoverFlorida (since I don't qualify for Florida's Medicaid and I can't get on Medicare for at least two more years) although my understanding was that I apply for this when COBRA ends on December 14 but that it doesn't kick in for six months. I'm hoping I'm wrong here. It's basically only slightly better than catastrophic coverage, but as you said, better than nothing until Medicare. The other negative is that it won't cover neurological or cardiac problems.

But it's not like my private plan is covering everything now anyway!

[synecdochic]

Nope, they can't do that to you -- the six month period is only for people who aren't covered right now. If you pay your COBRA straight through to the end, and you run out your coverage, you can convert it directly to another policy and they have to cover you immediately, although they can decline to cover pre-existing conditions for up to a year.

What you do is, three weeks before your COBRA runs out or when you write your last payment check, whichever comes first, ask your COBRA administrator for a certificate of continuous coverage (stating that you've been covered for the full 18 months provided by law). Fill out the app for CoverFlorida at that point, putting Dec 14 (or whatever your end-of-COBRA date is) for the start date, and provide the certificate of coverage (photocopied, of course; never send your originals), along with the check for your first premium (the application should tell you how much that will be). This should all be done about 3 weeks before your COBRA end date; if you do, you are covered by them the minute they cash your premium check, and if the application is received before 14 Dec, there won't be any gap in your coverage. (Even if it's received after, as long as it's received within 30 days -- 60, in some jurisdictions -- it's still considered to be continuous coverage.)

(Disclaimer: while I was once a licensed health insurance broker, that was fifteen years ago; my knowledge now is just from researching things for myself. This is all HIPAA, though, and that's plain as day.)

[mariness]

Thanks!

So all I'd have to cover is cardiac, neurological and orthopedic problems for one year and then I'd probably be ok.

(geesh.)

[synecdochic]

Exactly! Plus, if you don't have a gap in coverage, many plans will drop the pre-existing conditions waiting period -- HIPAA has some provisions about that, and a lot of companies try to find every loophole, but if you're firm with them they might stop trying to wiggle free.

(And yeah, "geesh" about covers it. But, you know. HEALTH CARE FOR EVERYONE WOULD BE SOCIALIST. CAN'T HAVE THAT.)

[mariness]

You know, I wouldn't object to the whole "OH NOES SOCIALISM" argument if we - and by we, I mean, actual health consumers/employees - worked with a genuine capitalist system where health insurance companies actively competed for our dollars and thus had to provide decent service. But that's not what actually happens. In real life, at my last job, my employer only offered the option of Cigna. Had any other option been provided I would have happily taken it, but it wasn't. I hate the assumption that this is at all similar to car insurance, where if I'm unhappy with Allstate I can switch to State Farm and vice versa. And of course, the other huge difference is that in many areas I can choose not to have a car, so I don't have to have car insurance. (Heck, I don't have a car now, so, no car insurance). Same with homeowner's insurance - I can choose to rent and pay renter's insurance instead. But with health insurance I don't have an option - and I didn't even get to choose the company!

This is what annoys me about the whole socialism argument. And while I suppose you can argue that you can choose your employer (to a degree, depending upon your job skills and other issues) and take the health insurance company into consideration, if you choose to work with Company X because they offer health insurance Y, and they change health insurance companies/plans after you've been there for one year (which has also happened to me) then what do you do?

Wow. I didn't think I'd be ranting that much.

[synecdochic]

And I'm just sitting here and nodding along, especially since I've never quite seen that argument put in that exact fashion before. Advocates of the free-market argument say that the competition happens in the business-to-business stage, where the employers will negotiate with them, but -- I mean, that's even assuming you can find more than one company that will cover your region.

But yeah. "Free market" implies free choice -- and we don't have it. I've never seen an employer offer a choice of more than two companies, and it's pretty rare even for that; mostly it's one company and that's it, if you don't like it you're fucked.

[mariness]

And that's also assuming that the employer - especially with one with fewer than 50 employees - can find any company at all. I worked for one internet start-up company that (among other issues) literally could not find a health insurance company willing to take them on - even though the 20 or so employees were for the most part young and healthy. (The key is "...for the most part" but the exceptions to the rule were employees we really, really needed.) Which in turn made recruiting workers difficult.

And on a related note, that's also assuming that the employer's primary interest is in employee health, and not, geesh, in order to recruit people, I have to offer health insurance, but to keep the company's bottom line going, I can't spend too much on it. I did work for two organizations - non-profits - that did focus on employee health and did focus on finding health insurance plans that benefited employees, but that's not always the case. Which is why I also knew two university employees who stayed there not out of love for the job but because they had sick kids and needed the insurance - and I expect there were others I didn't know about.

I'm honestly not against a free market - I'm all about capitalism - but that's not the system we're working with and I wish we'd stop pretending we were and squeaking "OH NOES SOCIALISM WE'LL LOSE OUR FREEDOM!" And the truth is not everything does work with the free market system - there's a reason government handles highways, for instance.

And - another issue with calling this a free market system - car and home insurers can make pretty good guesses about the risk of any given driver/home owner based on location, age, the car or house and other factors. But health is a lot trickier. And it's a lot harder to determine the "worth" or "cost" of a person as compared to, "Hey, the blue book value of your car was $5000. Deal."

[cesy]

Yeah. From what I can see, the current American system has the worst of both worlds - neither the actual choice you'd get from a genuine free market system, nor the security of a genuine government system.

[mariness]

Quick question about the Quickie Revolution: have you tried the back with the push handle style? Do you know how much that adds to the weight? I do get major fatigue without warning :(

[synecdochic]

I don't have push handles on mine, no -- I hate being pushed (hate hate hate hate HATE, with a PASSION. my FEET are NOT wherre you THINK THEY ARE omg -- my girlfriend is the only one I'll trust to push me ever, and i even twitch a bit at that) but sarah does push me even without the push handles sometimes, and she seems to do well enough with it. I'll send her over to opine on how easy it is to push without the handles!

(I should also add, the reason I originally got the chair without the push handles were all the reports of random strangers walking by and grabbing your chair to move you without so much as saying hello, either to 'help' or to get you out of their way. It still happens without the push handles, but it happens much less often, and I can then just run over their feet.)

[mariness]

Oooh. I haven't had any random strangers pushing my chair, although that might be because I usually have someone standing behind it pushing me.

I don't like getting pushed either, but unfortunately, fatigue and tachycardia might make that necessary (and these can hit when I'm not doing anything, let alone pushing a wheelchair) - when that happens with the trike I just put my feet up and use the motor, but the wheelchair is a bit worrying in that respect.

[synecdochic]

Yeah, it's very easy to get tired out -- I've been using mine for about 9 months, on and off, and you wouldn't believe how much bicep/tricep definition I've gotten in that time. It can certainly be a hell of a workout.

OTOH, with a trusted friend alternating pushing with you pushing yourself, you can easily switch off before you get too tired. I usually make sarah do hills and inclines, for instance, and then take over from her on downhills -- that kind of thing. You get a nice verbal shorthand going after a while -- "me?" "yup" "got it" "yo", etc.

Oh, another suggestion: get a nice pair of leather fingerless gloves to wear. (I got mine at the Harley-Davidson store.) The handrims on most wheels are pretty useless and most people wind up pushing themselves on the tires; you'll friction-burn the palms of your hands pretty easily.

(I bet you did not expect all this advice when you posted your rant of woe! *g*)

[mariness]

:: grins :: I have the gloves for the trike already - although I had to stop using them in the summer because of the heat. They're great and help keep down the hand swelling. They sell them at bike stores.

I'm usually only up to doing about five minutes of exercise - a bit more on the trike or in the swimming pool - before starting to have issues, but the idea is that I'd be using the wheelchair for things where I would only need to push it for a few minutes before stopping (hanging out at friends' houses and around the house on my medium days and so on.)

The advice is awesome and much appreciated. Although yes, I was originally just trying to blow off steam about health insurance companies that can't update their stupid computer databases.

[synecdochic]

I can't help it! My method of coping with my own disability is to become angrily helpful to others. *G*

At any rate, I really do wish you luck, and if you've got any questions at all, just holler. I'm happy to give anybody a hand with this crap, since it sucks rabid weasel balls and sometimes just having someone else who's familiar with the shit can help.

[sarah]

Hello! *waves* I'm Synecdochic's significant other and the One Who Pushes when she's wiped.

Even without push handles, it's not terribly difficult to manage her wheelchair. I grip thee two main posts on the sides of the back panel. Steering isn't a problem and I don't have trouble maintaining a grip on the fabric of the seat back, nor does it take much force to push the chair. It's so well-designed that it's less effort than a maneuvering a grocery cart around the supermarket.

There are a couple downsides to the lack of handles, including the need to walk more closely to the chair. In order to get enough force to push uphill, I have to bend over somewhat awkwardly and shorten my stride (I'm 5'11" and have a long natural stride). On a recent trip to Walt Disney World, where we averaged 6-7 miles each day and I did a significant amount of pushing, having to shorten my stride made my knees ache in the evenings.

The lack of handles also makes it next to impossible to exert downward force on the chair, which means I can't pop a wheelie for her and get those front casters over a gap or a rough curb. She handles that herself and then I go back to pushing once she's on a smooth surface.

To sum up: handles would be nice, but aren't absolutely necessary. If you share her hatred for the out-of-control feeling of having someone else pushing you, the lack of handles does seem to cut down on the number of times strangers will try to move her around.

[ysobel]

The lack of handles also makes it next to impossible to exert downward force on the chair, which means I can't pop a wheelie for her and get those front casters over a gap or a rough curb.

Pfft -- just get creative! Pulling back on the top of the chair back, while kicking forward at the base of the chair, might get a wheelie effect if you get the force vectors right.

Of course, there is the minor detail that she would run you over multiple times in retaliation, with pointy objects glued to her wheel for extra fun, but ...

;)

[exor674]

I think the fact that you use words like "force vectors" in normal conversations makes you awesome... either that or my physics class is eating my brain. >_

[mariness]

Thanks for this.

The curbs may be a problem; when I'm wiped I'm not sure if I'd be able to handle those. (on the other hand, the inability to do wheelies would act as a great preventative measure against a certain younger brother.) I think the other problem might be that I'll have different people pushing - a few trusted friends, the above mentioned brother and my parents.

And yeah, I hate, but hate, getting pushed, which is why I've been using my electric trike to get around. Unfortunately the trike, although wonderful, can't go into a car :(

[synecdochic]

Even when I'm totally wiped, arms are limp spaghetti, I-can't-even-think-of-pushing-myself, it's really not all that much trouble for me to pop a wheelie myself and then hand it back to whoever's pushing. I can see there being issues depending on your upper-body strength, for sure, but I've found that the chair's so well-balanced that a little bit of practice has lowered the amount of force I need to use to nearly nothing -- certainly less effort than doing a pushup, for instance.

The worst problems I have, honestly? Carpet. Fucking carpet. I hate trying to push myself on fucking carpet.

[mariness]

The problem there is that when I'm tired I'm also lightheaded to dizzy and have some problems telling where things actually are, thus making tilting a real issue. But I at least want the ability to TRY it, you know?

[badgerbag]

I got a pink, reasonably light (but not ultra lightweight) quickie x-frame off ebay for about $300. I'm 5'3 and was about 130 lbs and a 14-inch chair, about the smallest considered and adult size, was okay for me. My new chair, rigid frame and under 20 lbs, is 15 inches in seat width and has been better. Lose the armrests and skirt protector things. Lots of camber in the wheels is good, but the more camber, the wider the bottom of your wheels will be when you go through a door. I think I'm 24" wide in my chair. It might be 22.

I agree with synecdochic about seat depth. Less seat depth means you aren't scooching forward and backwards all the time or leaning forward to push.

Spingery Spox wheels are about 1 lb less (each) than regular bike wheels. They're also way more expensive - $700 a pair rather than maybe $200. The insurance may still pay for it (and should because the lighter the chair the less chance you'll mess your shoulders up.)

Leather palmed fingerless gloves are useful.

Despite any advice and measuring people always say your first wheelchair will never be quite right and it takes a while to figure out what works best for you.

[mariness]

Thanks for this!

The problem with a rigid frame is that I have to be able to get the wheelchair into different cars - I don't have just one person driving me. Which is why I was looking for an ultralight that folds up. For getting around locally I'll stick to using my trike, which has been awesome and also ensures that I get some movement in my lower legs which is critical for me. I love the leather fingerless gloves which I use for a trike - those have been wonderful (side effect for anyone with POTS reading this - they also help control the hand/finger swelling from exercise. They're amazing.)

:: takes notes about Spingery Spox wheels ::

I expect in the end I'll end up with two chairs - a power chair for medium days and a manual for good days. (On bad days I can't sit up or use a chair at all.)