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The million dollar man .... errr ... chair (m)

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  • The million dollar man .... errr ... chair (m)


    We just ordered a $42,000 wheelchair for Chad to replace the hunk of junk he's been driving for the last 6.5 years. It is a state of the art Permobil (strike this: chairman 2K was his old chair) C500 stander ( with every single feature available - e.g. standing, tilt in space, chin control, stand, make dinner, etc. They are "discounting" it to $32K. And the best part is that I had to sign a promisary note saying that we would pay for it all in 120 days. This means with or without reimbursement from our insurance company. And given our CRAPPY insurance that will not reveal how much, if any, that they will reimburse of this essential new mobility device , we are more or less hanging wayyyyyyyyyy out there with our personal finances COMPLETELY on the line. The new chair should arrive in 2 weeks. And we are now 4 days into our 120 day deadline.

    This thread probably belongs in equipment or something, but this is my "home" board, so I thought I'd post it here.


    p.s. Everyone do a rain dance / prayer / voo doo chant / healing ceremony in an attempt to get the insurance company to pay ANYTHING and ASAP!!!!!!!!!!!!!!!!!!!!!!!!!!!

    p.p.s The old chair was named Bessie - well, I named her Bessie when I came along about 3 years ago because "she" was/is a lumbering hulking presence. The new one should be sleek, fast and slick. Any ideas for a name? I'll post photos once it arrives for visual inspiration.
    Last edited by zillazangel; 07-22-2006, 11:47 PM.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  • #2
    Disgusting how expensive essential equipment is, and equally disgusting are insurance companies.

    It sounds like it will be a wonderful chair (as wonderful as chairs go) for Chad. Good luck with getting it covered.

    How is Chad feeling? Last I heard I think you said he was having a hard time, and spending lots of time in bed.


    • #3
      Hi Ami,

      What necessitated the urgency of getting Chad an expensive new chair to the point of dangerously exposing your family to such a severe degree of financial risk?

      If old Bessie is in such bad shape couldn't you have rented a chair similar to a Permobil Chairman 2K and informed the insurance company of what you needed to do? While perhaps hinting that they may be held responsible for the rental fee thereby "encouraging" them to speed things along.

      Is your crappy insurance company aware that you signed a promisary note that in effect is evidence that you can afford it on your own? It may slow them down even more since their inaction or slowpoking won't be putting Chad's well-being at risk leaving them open to a potential health related lawsuit.

      The love you have for Chad never ceases to amaze me. I hope all goes well and your insurance company steps up to the plate way before the ninth inning so you won't need to worry about yet another problem. SCI never seems to stop giving and giving and taking and taking.

      I'll reserve naming Chad's new Permobil Chairman 2K until after your insurance company signs their name on the check to your DME.

      Best wishes.
      "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria


      • #4
        Hiya, all good questions Bob ... all with bad answers, lol! But answers nonetheless. The insurance company will not even consider a new chair until the current chair is 6 years old. The doctor he sees will not write an Rx for a new chair until the old chair is 6 years old. So at 6 years and 1 day (practically) we had him write the Rx for the new chair. No, he actually wrote an Rx to be evaluated for a new chair. To get an appointment in the wheelchair evaluation clinic at UNC (the only place we can go) took 5 months. We went there in mid May, and as expected, they were completely appalled at the state of his chair. So in their letter of medical necessity they said things like "dangerous", "completely beyond repair or rehabilitation", etc. That was submitted to the insurance company who approved a new chair. Just a new chair. No specifics, not a word of even whether they would fund a power chair, lol! (chad can't move from the shoulders down ... my guess is they'll pay for a manual chair knowing them ). So, after numerous phone calls to the insurance company who insisted they would not - COULD not - tell us what would be reimbursed (we would just have to purchase it, submit it for reimbursement and hope for the best .... this is an actual quote) - we ordered the chair. We could not rent one because his chair is so incredibly specialized (one example is his very specific chin control mechanism), plus chairs like Chad's aren't just sitting around waiting to be rented, ya know? So that avenue was not open to us. THEN, the DME supplier would not order the chair unless we signed something saying we'd pay for it .... one way or another. They don't care if we get reimbursed, that ain't their problem basically. And they would not order it without a promisary note. And we cannot order it without a DME vendor. And the permobil vendor here is XXX.

        So .......... that's why we did what we did. I consult for a living so I'm just hoping to god that I get a great big giant contract. Because we still have to eat and say... pay the mortgage!! And, it is ordered and arriving in two weeks, so I'll have pictures to post soon, finances be damned. LOL (if you have a choice of laughing or crying, I'll go for a good laugh ....!).

        And Shelley, thanks for asking. Chad's health had been steadily improving for a few months, basically since after the rally and after he increased his dosage of Cymbalta (an antidepressant) his mood improved dramatically. So we were starting to head in the right direction and we were getting back our usual life - we even went to a movie a few nights ago. But then 3 days ago, we walked my son to school - about 3/4 mile each way I'd say, and it was a very hot morning. When we got back, he stayed in his chair (not wise in retrospect) and then that night when I put him in back, I found that he had developed in the course of less than 12 hours the most godawful macerating ugly yeast infection I have EVER seen (and trust me, that is saying something - we have beaten back some badass yeast in our past). So he has been down in bed the last 3 days and has been in alot of pain. He's had to take alot of percocet on top of his other pain meds, and valium to quell the pain related spasms. We are battling this thing with everything we've got but at 3 days in, things look worse not better. So I am going to take him to a dermatology at UNC where perhaps they might actually know what they are doing (as opposed to the dorks we've seen in our smaller, nearby town). Send good thoughts! And thanks so much for asking.


        p.s. Among other things I do in pharma consulting is fight with insurance companies on coverage Company X's drug or device. So have a dowloaded file of EVERY pending, current and possibly coming HCPCS code from the CMS website, which is considered the bible of the state health plans generlly (what we fall under through Chad's job at the state). So hear me ROAR - I am ready to battle till the death (of them) or i get my MONEY!!!

        Originally posted by bob clark
        Hi Ami,

        What necessitated the urgency of getting Chad an expensive new chair to the point of dangerously exposing your family to such a severe degree of financial risk?

        < rest of post snipped>
        Last edited by zillazangel; 07-23-2006, 12:13 AM.
        Wife of Chad (C4/5 since 1988), mom of a great teenager


        • #5
          Ami, best of luck to you in your new w/c woes. I can certainly relate to your stance and actions, sometimes it will never get done unless you take action. Hopefully the insurance will pay and if they refuse, and only as a last resort, you might have to pay for the stand feature. I'm sure you have back-up documentation from his physician and seating professionals stating need. Take a deep breath, gather your patience and be prepared to hear no the first time. Then keep at them with a level, practical voice, as it's always important to not burn bridges in this game we have to play. Jim is going on 6 years in his chair, I have a bowl of parts that have fallen off occassionally that we can't find where they originated! I will be very interested to know how you guys like the stand feature, please give us a review after ya'll get acclimated to the chair. Sorry to hear about the yeast, you seem to have enough going on without that! Deb


          • #6
            Hi Deb! his old chair, Chairman 2K had the standing feature and we LOVED it. He stood 4x a day for 15 mins (at a minimum, sometimes longer and more times per day) to reduce osteroporosis risk. I'm sure we'll need a BMD scan to back up the need even though approved it last time.

            Worst case, his stepfather is a lawyer. A firm, but polite, letter from a law firm (from a law firm partner whose name is part of the firm's name .... and is not the same last name as Chad) has worked wonders in the past when all polite avenues fail. We have lots of tricks up our sleeves, but I am aware it's going to be a long, hard fight that will take a toll on me.

            Chad tends to be very passive and just say "oh, ok" and accept no as an answer. I, however, keep asking until I get the answer I need. So I will be handling this all = handling all the stress! I already had a HUGE fistfight with the owner of the DME company who wanted us to pay 100% in 30 days from order date. NFW!!! So getting to at least 120 days and the discount helped (but of course we expected the discount).
            Wife of Chad (C4/5 since 1988), mom of a great teenager


            • #7
              sorry Ami, is his old chair broke?


              • #8
                Hi Ami,

                How many times have we heard from our politicians (mainly Republicans) and the public relations representatives for the private insurance companies/multi-national corporations that we (the US) have the best healthcare system in the world?

                Lately it's hard to differentiate between the politicians and the representatives of the private insurance companies/corporations.... they're one and the same so it seems. When the Republicans, under orders from Speaker Hastert to hold open a 15 minute vote for 3 hours to give the Republican leadership enough time to armtwist and bribe a few holdout Republicans in the House of Representatives during the wee hours of the morning in order to pass Bush's Medicare Prescription Drug Plan (Part D), that was written by and for Big Pharma, this became very clear. The main ingredients being insisted upon by Big Pharma was "no reimportation of drugs from Canada or Mexico" and "no HHS/Medicare negotiating over drug costs". Like the VA (Veteran's Administration) does and who gets their drugs at a 50% discount! What a huge windfall for Big Pharma that Part D bill is. Just days before the vote was to be held there were 2 Big Pharma lobbyists for each representative tripping over themselves to make contact with the 435 representatives. 870 special interest lobbyists doing the "people's" bidding in the "people's house. Yeah right. What a sad state of affairs "our" republic and/or democracy has become. I wonder when you or I can make an appointment to talk with our representative in his or her office in Washington D.C.?

                Medicare Part D costs me money each year.... doesn't save me a penny!

                And the private insurance companies hold the same sway in Congress when it comes to writing up their rules and regulations. The individual States have their own rules and regulations too so the old "State's Rights" debate confuses things even more. A comma or period here or there and a partial sentence inserted just perfectly here or there during the now imfamous "mark up sessions" and bingo, another few billion dollars here and there for these greedy corporate bastards. All at the expense of a policy holder like Chad who needs a medical durable good like a wheelchair and you're put through the equivalent of the Spanish Inquisition.... but in triplicate.

                With Medicare you only need to wait 5 years between chairs... your insurance company really does suck. Fuentes says he only needs to wait 2 years between chairs but can talk his way down to one every 18 or so months. What a labyrinth of bullshit we need to navigate through in order to get a damn wheelchair or cushion or whatever. You'd think that Chad was trying to defraud them of a Lexus instead of acquiring a necessarily specialized wheelchair. Wheelchairs are and being a SCI is so much fun that they don't want us to overdo the belly laughs and hurt ourselves.

                Originally posted by Ami
                The doctor he sees will not write an Rx for a new chair until the old chair is 6 years old.
                What business is it of the doctor how long your insurance policy says Chad must wait to get a medically necessary durable good such as a wheelchair? Is he a wheelchair mechanic/technician too? I thought it was the doctor's job to assess and diagnose Chad's medical condition and prescribe for his need, not for an arbitrary number chosen by a certain insurance company. Or are doctors now just like automobile accident appraisers looking out for the interest of the automobile insurer?

                I'll never forget watching Senator Ted Kennedy (D-MA) on C-SPAN taking out his insurance card from his wallet on the Senate Floor and waving it around saying that ALL US citizens should have the same coverage. I bet that policy wouldn't make Chad wait 6 years for a wheelchair if he needed one in 3! And we need to have public financing of elections. Put the special interest lobbyists outta business and the cost of elections will be dirt cheap! They'll actually pay for themselves if Congress spends its time working for the people who elect them and not the money brokers who finance their campaigns.

                This country needs a single payer plan like Canada has but with the same coverage that our elected politicians (the people's servants) have. And force the AMA to increase the number of doctors they permit each year to graduate so we can do away with packed waiting rooms and asembly line healthcare and month long waits to get a freakin' appointment. If we can "find" $250,000,000.00 each and every day to spend/waste to kill people over in Iraq and elsewhere we can afford good healthcare here in the US. And not have to guess, hope and pray that a necessary piece of medical equipment will be covered and acquired in due time.

                Chad needs a special form that you and he sit down with the doctor and/or PT with and thoroughly list every item he medically needs on the chair. There is no one standardized form but the one I used was called "Functional Mobility Evaluation". I linked to an agency in Idaho who has a similar one online that you can download and print out. I wrote about it HERE.

                You need to find a doctor, physiatrist or PT that no matter their expertise or lack thereof in their field of medicine, knows how to expertly fill out the damn paperwork!

                Good luck.
                "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria


                • #9
                  Ami, thanks for talking about the stander/chair. Jim has extremely low B/P and it has always been difficult to get him up in the EasyStand, takes rolls of ace wraps on legs, antihistamine, lots of fluid, binder--and then he passes out. So, I don't know if it would work for him. Would have to be easier than me lifting him into the easystander though! I do remember seeing a picture you sent in and wondering what it was in front of his knees--now I get it. Remembr, when you play the insurance game that they get a score when we lose our cool so be cool. And yeah, I have to do it all too, and doesn't something else always crop up to make it harder? Like yeast or ingrown, etc. Oy evay!

                  Medicare no longer automatically replaces chairs every 5 years, the old chair has to be beyond service.


                  • #10
                    Originally posted by Lizbv
                    sorry Ami, is his old chair broke?
                    Yuppers. Since we last saw you, just in May, his backrest is lurched out of position regularly due to a loose/stripped bolt that no on can seem to fix for more than a few days, then if lurches back again. It puts his left shoulders put about 4 inches too far back while is right shoulder stays where it should. Meaning, he can't reach his chin control. Meaning he is randomly stuck wherever he happens to be when this occurs. Meaning he cannot go anywhere without me (as no one else in our lives want to moonlight as a wheelchair repair mechanic, a job I've become quite good at). Also, the stander 100% croaked out. Well, to be accurate, it will stand him up partially, about 20% of the way up then stop. If you wait a few mins, you can get it to go most of the way up. That's when the swaying starts. If you have the balls to go all the way up 100%, the chair creaks and dangerously tips from back to front, side to side. The absolutely FORBID us at UNC from ever using that "feature" again until he had a new chair. The battery is dead, it's acting like yours was! (was that ever resolved?) It will only hold a charge for a few hours, IF he goes slowly (not a trait of his ). The only good part is that the cushion is relatively new and so that can come with us to the new chair. Oh yeah, but backrest cushion is hosed, totally messed up. Buying a new one is stupid at this point, so we muddle through. Ours will be the same as yours but black with that metallic sparkle to it. Swwwwweeeeeeeeeeett! As you might guess, Little Boy wanted YOUR chair colors exactly because Miss Betsy had it and it was really super cool. You are still adored from afar.

                    Lilsister - a good new feature in the C500 is that you can start from a tilt in space position and slowly, slowly, slowly rise up into a standing position. Imagine tilting back and having the chair gently go up and push out slighty as you go up. The advantage is that you can stop anywhere along the way and be tilted back, feeling safer (and better for BP) and go very slowly so it's not a sudden drop in BP like it is in a stander. Chad's current one (used to) just stand him straight up from sitting. You could pause it, but then you were left half standing straight, which did nothing to alleviate blood pressure, it was just a resting place if he felt a little out of alignment or something.

                    Wife of Chad (C4/5 since 1988), mom of a great teenager


                    • #11
                      Originally posted by zillazangel
                      The battery is dead, it's acting like yours was! (was that ever resolved?) It will only hold a charge for a few hours, IF he goes slowly (not a trait of his ).

                      Ours will be the same as yours but black with that metallic sparkle to it. Swwwwweeeeeeeeeeett! As you might guess, Little Boy wanted YOUR chair colors exactly because Miss Betsy had it and it was really super cool. You are still adored from afar.
                      Sounds like a lot is going haywire? Not good. Don't want to get stuck, the feeling is more than aweful.

                      Got the battery issue resolved, thx. The place I got it from didn't understand it required MKIV batteries. The Permobil rep (a very nice guy) met me at the place I got the chair from to "reccomend" the MKIV type batteries be used as the electronics require it. The ones I had in were dry cell (very good car batteries BTW) BUt not even gell cell, which is best for airline travel too. The place doesnt generally deal with Permobils so I guess thats why they messed up. Plus, do you think they would listen to a woman? hehe. Actually, I've done a lot of business in past w them w my van, like them a lot so I can joke. Then, after taking the old batteries out, only one was being charged I found out. I think the problem was the type of battery not coinciding with the Permobil electronics. Now, can go forever!

                      Also, apparently there is a "gyroscope" of some sort which helps balance the chair to drive straight, located under the front somewhere. I guess my EZ-lock bracket was positioned on it accidentally so that may have been an issue to. dunno

                      In the end, I'm real glad I had requested a case manager to work thru as a liason with my insurance on getting a chair. After she realized our disabilities require more than the usual pre approved powerchair, it felt like it wasnt so much a struggle. And even tho the case may not be open, I feel like I can call her about issues may have about getting things covered.

                      Maybe Chad will have his new "million dollar baby" by the time I see you guys and we can race our Permobils. I should get a checker flag for Little Boy, ha! Or, he can pick whos lap he wants to race in. ha!

                      Lilsister, there is something that is called a "PCA control box" that can be mounted anywhere on the chair so someone else can run the options on the chair. This might be helpful for you with Jim. I hope you guys end up getting one, it was really worth the struggle. Please tell him I said HI!


                      • #12
                        Hey Betsy, glad to hear that you are well--so much has happened with you--new chair and apt! When reading your last post you mentioned a case worker that helped with getting your chair, how does that happen? Jim has worker's comp, which in essence is an insurance company and they have assigned a liason officer for us--would that be what you had? She has no particular experience with SCI, but mysteriously appears at his physiatrist appt once a year. I also insisted she come to the house so she could verify use of accomadations we had put in and absense of torture paraphernalia. Jim also extends greetings, and a petting to Trooper.


                        • #13
                          Hi Deb
                          Yea a lot of changes this year. About the case manager, I just requested one through calling my insurance. Figured w the issues of the chair, needed some sort of "one to one" to try to understand more also to keep timeline of things nessesary to getting chair, i.e therapist eval, vendor info etc. My big thing was finding in network vendor that had my policy, and worked w these chairs. If I needed help facilitating the process, going out of network, etc. I guess similar to your case manager you describe? But kinda wierd they showed up at his appts? Trooper is doing pretty good. Have u guys got a dog yet?


                          • #14
                            No dog yet......exploring options and figuring out the fencing. And I'm having doubts about the cat letting a dog in her realm.....she's been the Princess for a long time and not showing signs of abdicating or sharing. It's going to have to be a big dog me thinks!


                            • #15
                              My greyhound peed on the carpetting again. I swear, the wet spot was in the shape of the country Italy. Sicily was also included. Not only is she is a bad pee-pee dog but she's an artist too!

                              If you adopt a retired greyhound you need to introduce them slowly to a cat. They are trained to chase after "cat and rabbit-like" objects around the track. The greyhound will definitely catch the cat but will probably get it's ass whooped by it after it does. They're trained to "try" and catch them but have no idea what to do once they catch them. A cat tore my first greyhound up when she got off the leash and caught it. She almost had to go to the vet!

                              But she just started this bad peeing behavior a few months ago. I don't what it is but since she sneakily does it while I'm sleeping there's not much I can do about it. Although yesterday, I was pushing my old wheelchair into the backroom to get it outta the way and as I turned around to leave I heard her peeing in there. I yelled NO! as loud as I could and slapped her behind as she ran past me. Maybe she thought the wheelchair was another person (since I'm always in one) and was marking her territory?? I gave her another swat as I put her out the back door. Then the silent treatment and no eye contact with her for the rest of the day. What else could I do? I'm no Cesar Milan.

                              I have insomnia so it isn't as though she doesn't get put outside/outback often enough. Maybe she wants to go out even more often to get another Milk-Bone.... the bitch!

                              I guess I'll have to have the whole house tiled or linoleumed and buy a huge mop and bucket. I don't want to put her in a kennel/crate every night. She's my third greyhound in 17 years and the only one that has done this. I go through quite a bit of Oxy-Clean and Febreze but that only works so well. Maybe it's because she's the youngest (I got her when she was 4, she's now 6) greyhound I've "owned" and needs more attention and exercise.

                              If she pees a likeness of Jesus I'll put it up for sale on eBay!
                              "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria