The Set Up

I’ve been putting off getting a new electric power wheelchair for well over a year. Okay, so it’s closer to 2/3-ish years.
 
I know, you’re thinking, ‘But isn’t your chair like, important?’ Extremely. My wheelchair operates like my legs. If I need to get something from the store, I use my wheelchair. When I need to go to the doctors office, I use my wheelchair. Gotta roll to the bathroom and brush my teeth? You got it – I use my wheelchair.
 
The current wheelchair that I have now is leaning heavily on being 11 years old. That’s right, I’ve had it since 2007. Over the years I’ve had to replace the two motors ($900×2), the controller ($700), the main ‘brain box’ ($1400), the batteries once so far ($300+$200 labor and delivery) and countless treads and bearings for my tires ($500 every 1.5 yrs for 10 yrs.) Not to mention the various small repairs of replacing missing screws and general upkeep. With the exception of the batteries and the treads up until 2 years ago (Thank You MDA of South Florida), I’ve spent 3k of my own funds to keep me road worthy.
 
3k over 10 years doesn’t seem like a lot. But those expenses occurred over the last three years. So yes, 3k is a lot for someone on public assistance who freelances around my being sick, a lot. Not to mention I still have my ‘regular’ bills to maintain (mortgage, lights, water, etc…). Most months see me trying to make ends meet that have no chance in hell of meeting. But I do what I can, where I can, as I can.
 
My current chair? The treads are bald, my cushion is held together by fairy dust and wishes, my bearings are shot and make a bone-on-bone crunching sound every time I roll. Lastly, there is a rusted out hole the size of a deck of playing cards on my seat-plate. Which means if is gets much bigger, I have a real chance of falling through. So to date, I give my current chair a good 6-8 more months before it calls it quits.
 

I Haz Questions

‘So Sandra? If things are so awful with this chair and it’s such a bank drain, why don’t you just stop putting off getting a new one and just ask the government/public assistance for help?’
 
The rest of this piece is dedicated to the folks who think that question above is as easy to make happen as it was to write it:
 
Realizing that I could no longer put off getting a new chair, I began my quest to begin the process of getting one back in
MARCH. I was told I needed to make an appointment with my Primary doc. So I did, amongst the plethora of appointments I’ve been to this year because: sick.
 
I explained to Doc what I was told I needed to request: two scripts, written on a script pad. The first was to request specifically a CUSTOMIZED electric power wheelchair AND a CUSTOMIZED cushion.
 
Why?! The first because I am short and curvy, so a standard chair won’t fit me and because my muscles are so weak that I need a controller with a sensitive response. These require customization. The second is because I need a cushion that can support proper posture and to keep my skin from getting sores, since I basically am sitting for 12+ hours a day. All this adds up to $$$$$$. And we already know how the government feels about services to help low-income, disabled or elderly folks: they would rather we go off and die. But I digress a moment.
 

Rolling My Sleeves Up

So I request these two important things. The next step was for my doctor’s office to submit these two scripts on a script pad, to my patchwork quilt of insurance coverage. You’d think that there would be one clear road with this seeing how this is dealing with public assistance. No, no there is not. The strategem with getting my new chair is to essentially keep knocking until someone (meaning insurance) caves.
 
So my Doc’s office submitted the scripts to their vendor who handles durable medical equipment (DMEs), the vendor is supposed to put the scripts with their paperwork and submit to Insurance1. If Insurance1 decides I fit their criteria (no other chair/chair repair/large DME purchase provided by them within the last five years), then yay! They can authorize the vendor to make the purchase and the vendor can coordinate the secondary parts (physical therapist evaluation and measurement for me to get the chair, ordering the chair, secondary fitting for the chair, delivery of the chair).
 
If Insurance1 decides that this would be too big of an expenditure for them on my behalf, then they will decline and I have to go knocking on another door.
 
The vendor, knowing the habits of Insurance1, pre-emptively decides that Insurance1 will decline as Insurance1 doesn’t generally cover customized DMEs. But I tell my Doc’s office to push it through anyway because I can take the decline letter from Insurance1 and put it together with the scripts and whatever else and submit it to the Insurance2.
 
I’m thinking, long game. Even if the decline comes through, I have one other option in Insurance2 before I need to re-group and come up with another plan. Cue me sitting and waiting (getting sick, getting better, getting sick again and better again) and still nothing is moving. Cue me getting my Insurance3 (you read that right) Case Manager (CM) involved cause sick and tired of this bullshit, plus I been sick. I figure she could chase that ball for me while I work on not dying.
 
Finally I am better enough to grab the bull by the horns. By this time we’re in early/mid AUGUST. I rope my CM in and we begin working this stalled request cause I let her know the dire state of my current chair. She physically goes into my Doc’s office to seek out this decline letter… Surprise! The vendor can’t produce it.
 
I’ve been working since then, with the Doc’s office and the CM to hunt down this letter, so we can continue the process of submitting to Insurance2 (which will be another waiting game) and *finally* today, the Doc’s office worker decides, she too has had enough of their vendor and made the Executive Decision to resubmit the wheelchair request to Insurance1 in hopes of getting an actual decline letter that we can then re-submit to Insurance2 with CMs help.
 

My ENTIRE Ass

And THIS is why I’ve been dragging my ass about getting a new chair. THIS PROCESS IS INSANE. I haven’t even gotten to the part where I need to meet with a physical therapist to be ‘evaluated’ for a new chair yet, much less that waiting game nor are we even near them ordering the chair and putting it together and bringing me out for my second fitting of it. I’m still trying to get the thing APPROVED.
 
Meanwhile, my 6-8 months are ticking and I need to figure out what I’m gonna do should a) this takes them longer than 6-8 months to authorize or b) everything falls through.
 
This is part of what it means to be low income and disabled in this country, where you are demonized in the press and through politics for being unable and are therefore considered a burden on ‘society’. ‘Burden’ in this country means financial and what people do to burdens is alleviate them. The ‘burden’ is dealt with here by creating obstacles to what is needed, where the hoops to get ESSENTIAL durable medical equipment are so egregious, most give up until there is no other choice but to put yourself through it in the hopes that ‘maybe’ you’d get what you need in the end or to just do without.
 
So for all those who think it’s so ‘easy’ to get assistance in this country, this meme is for You:
 

Disabled Chronicles, No.7 - www.SandraJeanPierre.com
Disabled Chronicles, No.7 – www.SandraJeanPierre.com
#DisabledChronicles #MyENTIREAss #SorryNotSorry