success!!!
Today the state people came to our house.
They performed their maneuvers.
We were able to convey to them
the nature of our concerns and
more of the complexity of our daughters disability.
This resulted in an assessment
by their computer
that our daughter needs more hours of care
than was previously established.
A computer! An algorithm!
What a load!
My daughters life needs are determined by a computer!
I guess I'm glad that
the computer has been programmed with enough complexity
to compute a need level that is consistent with
our understanding of her needs.
Now we are going to drop the
"Fair Hearing".
Or
"Unfair Hearing" as the case may be.
Malone was nearly giddy with delight
that she would not have to gather her
exhibits for the hearing on next Monday.
I suspect that she was just as put out
by the judge moving the hearing up a month
with only 10 days notice
as we were.
Stupid fucking system!
It's not a system at all!
It's a collection of agencies
and individuals interpreting the policies and laws
without regard for each other or
the family effected by their actions.
It's a jumbled sticky network of spider webs
meant to trap scammers
rather than to help families solve problems!
Next is the Social Security system.
The people meant to help us with that
are more trouble than help.
We are helping them learn the meaning of their jobs!
"Oh, we've never helped someone with a disability like this before!"
We'll chew them up and spit them out too!
There a few exceptions to this and they know who they are.
We tell them they are the exceptions!
They are aware they are the exceptions.
I had better go to sleep now.
Don't ever have a child with a disability!
It sucks and then
it's fucked and then
it tries to suck you dry of all life force
like some sort of bureaucratic incubus
that takes on a life of it's own
from the swirling misdirected energy
of all the various half formed creatures
behind desks in offices
of multitudinous agencies
showered with budgets
to pay people to figure out how fucked you are.
mykl
posted by mykl jon @ 9:43 PM
6 Comments:
Glad to see you fighting the power and winning. I'm also sorry to hear about your daughter. I had a brother who suffered from spina bifida, so I understand special needs. Why is it that the 'professionals' don't fucking get it?
The "professionals" are a bunch of do-gooders that think they are helping those that can't help themselves. But they get sucked into the notion that if they follow the rules of the agency they will be able to help the most people. They will also be able to keep their job if they kiss the bosses ass. That becomes what they are about.
Then they family becomes an annoyance because they don't fit the "formula". They forget that NOBODY fits the "formula". The formula should be bent to fit the family.
I was reading something that you wrote (I think)
"...the last time I saw my father cry..."
Your brother with SB is gone? Sounds like difficult times for your father and for you. How old were you then? Some things you never get over. I still cry about different aspects of my daughters life. The emotions are right there on the surface. It doesn't take much for the tears to break through. I'm mopping up tears right now.
It's ok though. I'm not afraid of them or ashamed.
I'm kinda like Lisa the Bored Housewife, "Fuck you if you don't like it." Anyway, it's a big part of me but I don't let it define me. I love my daughter but her life sucks.
mykl
Wow. That sums it up nicely. And sadly.
Yes, I wrote that, and yes, my brother is gone. He died when I was 14. He was almost 17. His life and death was like a rogue star passing through, pulling all the members of my family out of their orbits. I never was given a chance to properly mourn, so it comes out randomly to this day.
I'm glad that you have the ability to cry without needing to cover it up. I'm sad that you have such a reason to cry.
I hope that your family can find the help your daughter needs.
Zijin: Your uncle sounds like a remarkable man.
Zijin and Nancy, There is a saying that I heard a few years ago. My wife got a sticker for our car window that says this. "Disability is natural." We are so afraid of our people with disabilities. But they are us. There are 3 leaf clover, 4 leaf clover and 2 leaf clover. They are all clover and the cow is just as happy to eat them all.
Zijin, I agree with Nancy. Your Uncle the sculpter sounds like a very special person in your life. I know that you are a very thoughtful person and having him in your life must have given you much to think about. A family member with a disability is still a family member and is loved just the same.
Nancy, I can tell that your brother has been a significant part of your life. You know the tears that I cry. You have cried them also.
Thank you both for your kind words and wishes. Our stars have crossed and our lives are forever intertwined. I feel lucky.
mykl
Hi Mykl,
Just wanted to say I am so sorry you have to deal with that endless stream of morons, but thrilled you've had some success at long last.
I so wish I could whisk you and yours to the UK. While it does have it share of problems, when it comes to disabilty it puts the "land of the so-called free" to shame. You would receive a finanical benefit for her, probably a very affordable new car every three years should she have mobility problems and at least have some support network available. Add to that utterly free and good healthcare...well you can see the appeal.
Dealing with professional morons isn't easy. In fact it isn't flipping close to easy. I'm just glad you've been able to stand your ground and win. Good going!!
Melbamae
Zijin, how right you are! Difficulties come in many forms and sizes. There are many sources of help for the variety of aspects that any one situation may contain. The more able to seek and ask for help a person is, the more successful they will be at dealing with the problem. As a result, they in turn have more resources and capacity to help someone else that may come to them for help.
Melbamae, How nice to have you drop by and leave a note. It sounds like the UK helps support the citizens that are least able to help themselves. We have worked hard at getting our daughter into the position where she could potentially have a job. Now, she has TWO. However, there are some funding issues for the person that is her job coach. That person is supposed to help her learn a job and then fade away over time leaving her independent. We are sorting that out but it has been a very confusing time since the end of October.
Today is her birthday!! She's 23! YIKES!
mykl
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