Fighting Through The Paperwork Mountain
0 comment Friday, October 10, 2014 |
It's been that kind of week....
The thing I've discovered about disability is that it seems to require loads of papers for some reason; the process for my son's Statement revision has taken eight months of reviews, assessments, documentation, advice, reports and discussions. There is so much turnover in the civil servant offices that nearly everyone who was originally involved has "moved on" or retired, so I've invariably had to teach these people from square one about my son, and his situation. I have literally made my condition worse fighting for my boy, documenting everything at home so no one could try and pull a fast one on me, attending every meeting, fielding every phone call, and putting various departments in touch with each other.
The end result has been another bit of definitive paper...and it's complete rubbish. It's the "best I can get" from the council education group, and it's nowhere near adequate. More to the point, because of its inadequacy it means I do not qualify for many of the programmes which are designed for autistic children because my son does not meet the critera due to the wording on the Statement - and that means having to appeal to each of those individually.
Exhausted isn't the word.
When I opened up the paperwork on Monday morning, I couldn't believe it - eight months of wearing myself down to the point walking and short term memory is a struggle, for this. I was appalled. So was the school and my new social worker for my son, as apparently without me having to prompt them, they got in touch with one another and immediately started to discuss how to find ways to quietly, unofficially "supplement" the plan. That's good to know. Also, the social worker is going to put forth the appeals for me for my son to be able to access things like funding for after school activities and so forth. So that's something more.
But of course it means more paperwork, and more daily phonecalls to try and push for this, and try to chase up that, and attempt to sort out the other.
The one perk for working for attorneys for so long was learning the golden rule: Document Everything. My filing system is full of paperwork. I've kept every single report, review, letter and email with regard to my son's progress and his early statement and diagnosis since we first began to get him assessed nearly four years ago now. I have thrown nothing out. And while it's now nearly filling a cardboard box, I have needed the stuff; needed to pull it out at a moment's notice to remind the system what it promised, and to show them they haven't come even remotely close enough. It's necessary, and has come in use more than once.
Now I'm adding my own paperwork to the pile with fighting toward getting my own needs dealt with, and that is going to be yet another mound of my life broken down into words of black on white which has absolutely no relation to what it means to live as I do day by day. Words on a page don't even come close. But if it's all I've got to help me fight against a bureaucracy which seems to have stopped making sense even to itself, then so be it.
Hand me a few more reams, then. We haven't even started yet.