Need-Based Humiliation Bureaucracies

6 months into 2013, and I am still writing 2012. Can’t deny there’s an exceptional disdain for this year. Maybe I should start writing “2014,” so then I can feel like I have a head start on the good times. Cursed odd numbered years. 9/11/11, the Revolutionary War, Civil War and WWII began and ended in odd numbered years. Nothing good ever happens (for me) in odd numbered years. I was born in an odd numbered year. Surely that had to be painful. That’s a joke. Laugh, damnit.

In the beginning it was strange reading reports about me. Especially when I was a child.

It was strange writing in the third person when I started the new wheelchair ordeal. I’m becoming well versed with writing prognosis reports about myself in the third person to justify my disabilities as bureaucrats review my case history, and my lifestyle while expecting me to put my life on hold. “How come you can’t use a walker instead of a wheelchair?” Maybe I AM using a walker while your bureaucratic processes piss away over 2 years of MY abbreviated livelihood, wasting tax dollars for things spent my 20s being independent from BECAUSE I have to resort to using a walker. Here I am, writing thesis, documentation full of nice sounding buzzwords, helping medical professionals establish medical need on my behalf in the stupid reports with ICD9s, HCPCs, and K codes about how I try to live my life (MRADLs) and do things like chase my walker at the gym, almost fall as I chase and if I was half a second slower or had lost my balance… my walker would have been in a 10 foot swimming pool AND I’d have a concussion making it hard for me to write in the third person. If I talk in the third person, someone seek help for me. Maybe by then someone can add mentally unstable to the list and someone else can do this advocacy thing for me.

I really want to unleash a string of profanity. As this goes on I am increasingly tempted to explore the options to file lawsuit for prolonged indifference and malicious intent and abuse/neglect of process. I have no idea who I would file a claim against since there are so many incompetencies from so many involved. Over 2 years, I could have had 2 kids by now. I could be half finished with school. I could have lost weight, or gained weight, or I my medical needs could have changed by now making the wheelchair totally wrong for my needs by now.

I’m honestly describing in a page, the hardship of opening a door, another about how every time I cross the street I have anxiety attacks for fear of being hit because I might trip in the cross walk, and then not have enough time to continue to the other side before the light changes… about how I am easily jostled and causes me to lose my balance in public, how I have the smallest walker I could possibly find and it still does not fit to take it down the new-ish versions of the 1960’s-inspired-style buses with seats that face forward. Good luck if the bus is filled with people in those seats. Should I share the embarrassment I’m subject to at needing to descend the bus backwards because I can’t lift the walker high enough for long enough over the gap between the bus and the sidewalk curb? These bureaucracies for social institutions are designed to humiliate those needing help under a guise of processes for need-based programs. Need-to-humiliate-before-willing-to-consider-helping-you bureaucracies. Regular people don’t have files about how they open doors, take a piss, shower, feed/eat. What gives bureaucracies the right to strip people of dignity and self-respect? How is that NOT being treated like a second-rate person? I beseech, why does the U.N. want to adopt a People with Disabilities Treaty/Convention to apply to their own creed/treaty for so many nations to legally treat people with disabilities in such revolting fashion? Why is the Republican party not flattered that the U.N. wants to model a treaty based on what the U.S.A has? We could speculate the reason being fear the U.N. would see past the dog and pony show.

What private details of my life do they NOT want? Should I just write a biography of every activity I do? Thoreau-style? What a terrible bore. I’m sure Civil Disobedience is worthwhile if he didn’t spew about it in such a dry fashion.  I’ve been boring myself assembling it all. And then to even think of the slightest possibility it could be misused and then turned into some required college or high school reading after I cease to exist, and there’s no reader autonomy.

Can’t tell you how much I really want a cigarette right now. Breathe deep. Baaaagh, just reminded me of how good I felt to take a big drag when stressed. No, no, no. I have been doing good. Don’t surrender to weakness.

ADMC stage to fight for a new manual wheelchair

In case I failed to previously outright say (crazy I want to be thought of as a person first and not the other mularky), the “condition” I live with is long term, from birth, not contagious, not hereditary, not terminal, not degenerative, and not autism. So now that I defined what is naught which is a lot easier and shorter than defining what Cerebral Palsy is, I’m just going to skip the “awareness and tolerance for those without disabilities” and grant you the ability to do an internet search on your own. I’m sure I’ll put up a post at some point where I’ve done this for you and unearth a mountain of decent internet resources to be clickity clicked.

Right now I am supposed to be getting my condo put back together after Hairy moved out, and after I re-arranged, and before I serve dinner. I checked my email hoping to get a response from some transfer advisor about that 504 accommodation request.  Nothing there. I did see a reply from the vendor who is doing the ordering for my new manual wheelchair. Which this has been going on for well over a year. I’ll skip the long winded backstory as much as possible.

√ Assessment of wheelchair, wheelchair determined to be worth less than the cost of repair

√ Dr. writes prescription, sends to vendor

√ Physical therapist does a wheelchair evaluation which is sent to vendor and Dr who wrote prescription

√ Dr. is supposed to agree or disagree in writing with the evaluation from the PT and inform the vendor

√ Vendor takes measurements, writes quote.

√ Patient or necessary people review the specs of the chair on the order

√ Vendor corrects the sloppy order written

√ Letter of Medical Necessity written by the DR or PT is passed to vendor and submitted

√ Vendor gets pre-approval from Medicare or Voc Rehab or other funding sources.

     ADMC stage

      Dispute or further justification of ADMC: why Ultralight wheelchair (coded as K0005) is needed instead of a Lightweight wheelchair (coded as K0004)

Why you can not use a K0004 manual wheelchair instead of the K0005 manual wheelchair.
They want to know what your ROM in your upper extremities is.
What is your strength in your upper extremities?
What is the patient history with neck. Shoulder, and arms?
They want to know why you can’t use a cane or a walker?

I understand this is to prevent Medical Suppliers from doing crappy work, or making false or padded claims, or prevent them and patients from trying to take advantage of the Medicare program. It’s crazy the amount of stuff I have to do and the things I am doing to get my DRs and PTs to provide documentation. I wrote the majority of the Letter of Medical Necessity and had the PT fill in the PT jargon he knew he had to include. Basically it’s me writing stuff to prove my need and getting the people with the degrees to re-write it on their official letterhead and harassing their staff to fax it and work with the vendor. I harass the vendor the most because the vendor has proven the most incompetent, and the PT and DR. are about equal in their incompetencies or neglect, imho.

… Maybe it is looking more like the end of 2013 before I see a new wheelchair. I had thought it would be Fall 2013 and maybe I was just doing the 504 Accommodation request for my school as what hopefully proved to be unnecessary, and now looks like I’ll have to change my tactic to how many semesters do I need to deal with requesting accommodations from the school while still waiting for my new wheelchair. I’ll save my sarcasm and jokes for another time. I was fooling myself when I thought the easy part of getting the vendor to make their order correct was the hard part. Not out of the woods just yet.  I hope it doesn’t turn into a situation where I will take bets between which will happen first: Graduate or Have a new wheelchair?

If you have input or insight of the process and time frame it takes to get a new custom, manual wheelchair and live in another state or another country, please leave a comment as I am  sure it would be interesting to compare the differences.