So, apparently I'm supposed to pay $96 a month out of the $812 I get to live on to pay for the privilege of being able to eat, drink, use the bathroom and wear clothing. My care provider's check is now being docked $96 a month that I, somehow, am supposed to be paying her as my 'share of cost'.
In other words, we're fucked.
I know $96 dollars sounds like a small amount to most, but to us it's huge. My care provider lives with my wife and I, and we pool our resources to survive, and we're still below the poverty level. Now I'm supposed to be paying a portion of her paycheck - a paycheck I rely on as much as she does - out of my SS money that she relies on as much as I do. This is after they cut nearly a third of her hours for my range-of-motion and exercise assistance as 'not being required for minimal life support'.
Yes. I am only to receive what is considered necessary for 'minimal life support'. Keeping my condition from deteriorating and keeping me in shape so that being a sedentary quad doesn't result in the myriad of health complications that quads get is apparently NOT minimally life supporting.
Welcome to being disabled in America.
I was born with a birth defect, have been severely disabled since birth, and this has basically been my life for 33 years, now. I received nothing until the age of eighteen, because apparently my parents were just supposed to decide which of them would stop working full-time to care for me 24/7 because they had the nerve to have a child with a birth defect.
Upon turning eighteen, I got SSI in the amount of $457 a month. That was what it was estimated was required for a disabled person to live. Over the years I've managed to occasionally hold down a job (poorly) and am now on SSDI instead of SSI, so now I get $950 a month. Except that outstanding Student Loans are being garnished from that, so I only get $812 a month, though all of my services - like my care provider and foodstamps (I get $42 a month! Woo!) are determined by the higher amount.
My wife, if you're wondering, is Canadian and gets no benefits, and was diagnosed with Lupus in 1999. She's now housebound due to her illness.
Our care provider is a good friend who agreed to live with us and do this, and she gets paid less than $1000 a month, now, after they deduct the 'share of cost' that I magically can afford to pay her. She is, essentially, agreeing to live in poverty to care for us, because it's the only way we can survive.
THIS is the face of people on disability and government services. Not the mythical Welfare Queen, not the legendary Lazy Bastard.
Me.
I am who gets fucked by budget cuts. I am who needs the services that Conservatives want to kill. Basically, they want - though they might not realize it - to kill me.
After today's notice that we just lost another $100 a month, they got one step closer.
UPDATE: I'm wondering if I blogged daily, Monday-Friday, on disability issues, news, events, etc., if there would be enough interest to do donation drives like Bill in Portland does for Cheers and Jeers? I'm just trying to think of SOME way to make additional money from home so I can actually have a decent life. Maybe I'm out of line for even asking or suggesting it. I just don't know what to do anymore.