0 comment Friday, September 5, 2014 | admin
This week the solicitor is filing the appeal for my son's case. The hearings have a three month backlog, but that just means there's more time to gather independent evidence. Child will probably need to go through another battery of tests, all of which will need to be done by professionals independent of the LEA, which I'm rather wibbly about; I have been hearing a lot of "think positive" from the LEA for the past two years, even to the point they were reluctant to call him disabled due to "labelling" or "epidemic" issues. Mostly I think they wanted to keep the numbers of autism diagnosis down, even if it meant not diagnosing children who were actually autistic. It took a completely differently authority giving him a high-functioning diagnosis, and my son's paediatrician actually giggling when he read this and saying "No, he's autistic" before anyone would even say the word.
So now I am having to prepare myself to hear what I have suspected, but that the LEA can't or won't say directly: that my son's autism is more severe than anyone has admitted to yet; that his chances at living an independent life at his current state of learning and awareness is rather limited; that he is a candidate to be put into care if I have one more major blow to my health as his father refuses to take over his care. These are things I know to be true but like just about every other parent-carer out there I just try not to think about it.
Yesterday was the Hardest Hit march - a march which wasn't even televised on BBC; up to 10,000 disabled people took part and try as we might, we couldn't get the major news channels to give even so much as a look in. It didn't make the front page - it barely even made the back pages. And while I was womaning the twitter feeds and trying to get interest, writing articles for various groups and adding input in comments, I was once again hit head on by what appears to be the majority consensus that it's just too bad the disabled are suffering, but since most of us are fakers anyway, we should just go and find jobs. And, of course the inevitable "If you can march, you can work" rhetoric as if most of the people who were marching were just scrounging unemployed, rather than employed people who are terrified they're going to lose their jobs once the help to actually access those jobs is cut. One of the best pieces I've read about the march can be found here: "The Downsides of Dignity"
...a glance back at Millbank and I felt the sensation of being on a precipice before falling. I stopped and looked for a moment. These thousands of people were representing themselves and those who couldn�t make it and who can�t speak up. And their lives- our lives- are being thrown into the pits. This is not hyperbole. People are going to die because of what the government is allowing to happen. People are not going to pass the WCA, people are going to find it too stressful to even go to the assessment, people are going to fall into financial hardship, people are going to be stripped of their Disability Living Allowance and lose the privileges that comes with it (as it is a, "passport benefit", and indeed, without it, I would not be on my part time course and I would not have had the privacy of a one bedroom flat to be ill in). People are going to be left housebound and what dignity that have- that word again- is going to be taken away. People are going to have to rely on their partners to support them when they can�t. This is not hysterical. This is real, and it is happening to people. Not just now. In the future, this is it.
I'm sure people would call this "emotive" or "scaremongering". I'm not really sure how people who live this life and are terrified are supposed to communicate. Obviously the showing mere numbers of 10,000 marching people isn't enough. Maybe "emotive" is all that is left now, and that can be rather dangerous stuff.
For our reality, my son needs a special school. Of course if he does that, bang goes his DLA payments, including his mobility component. The assumption seems to be if he's attending a residential school I no longer have to buy clothes for him, or take him on outings, or trips to the doctor or dentist if he gets ill, or attend meetings about his care or education, or make appointments for him to attend assessments. I'm not quite sure how they figure this one but that's the way the cuts are going. If by some completely idiotic process of assessment someone assumes when they see my son on a good day that he isn't worthy of High Rate Care (and you'd have to blatantly ignore every single piece of evidence to the contrary) I would not only lose his DLA but carer's allowance and the disabled element of child tax credit. That's nearly half of what we live on right now - without that I'd have to move into council housing (basically, right onto the dole I've managed to avoid till now), and probably into something completely unsuitable for either of our needs; sticking My Son, the Walking Target to Bullies on a sink estate would be a disaster, and me having to navigate anything with stairs would put me right back to housebound again.
I can't think of any other words to explain this. I can't think of acceptable statistics for it. I can only say what is happening to myself and my son. It doesn't appear to be enough - after all, I'm not an economist, or a statistician. I just live it, and therefore it's merely whingeing. Or something.
So now I am having to prepare myself to hear what I have suspected, but that the LEA can't or won't say directly: that my son's autism is more severe than anyone has admitted to yet; that his chances at living an independent life at his current state of learning and awareness is rather limited; that he is a candidate to be put into care if I have one more major blow to my health as his father refuses to take over his care. These are things I know to be true but like just about every other parent-carer out there I just try not to think about it.
Yesterday was the Hardest Hit march - a march which wasn't even televised on BBC; up to 10,000 disabled people took part and try as we might, we couldn't get the major news channels to give even so much as a look in. It didn't make the front page - it barely even made the back pages. And while I was womaning the twitter feeds and trying to get interest, writing articles for various groups and adding input in comments, I was once again hit head on by what appears to be the majority consensus that it's just too bad the disabled are suffering, but since most of us are fakers anyway, we should just go and find jobs. And, of course the inevitable "If you can march, you can work" rhetoric as if most of the people who were marching were just scrounging unemployed, rather than employed people who are terrified they're going to lose their jobs once the help to actually access those jobs is cut. One of the best pieces I've read about the march can be found here: "The Downsides of Dignity"
...a glance back at Millbank and I felt the sensation of being on a precipice before falling. I stopped and looked for a moment. These thousands of people were representing themselves and those who couldn�t make it and who can�t speak up. And their lives- our lives- are being thrown into the pits. This is not hyperbole. People are going to die because of what the government is allowing to happen. People are not going to pass the WCA, people are going to find it too stressful to even go to the assessment, people are going to fall into financial hardship, people are going to be stripped of their Disability Living Allowance and lose the privileges that comes with it (as it is a, "passport benefit", and indeed, without it, I would not be on my part time course and I would not have had the privacy of a one bedroom flat to be ill in). People are going to be left housebound and what dignity that have- that word again- is going to be taken away. People are going to have to rely on their partners to support them when they can�t. This is not hysterical. This is real, and it is happening to people. Not just now. In the future, this is it.
I'm sure people would call this "emotive" or "scaremongering". I'm not really sure how people who live this life and are terrified are supposed to communicate. Obviously the showing mere numbers of 10,000 marching people isn't enough. Maybe "emotive" is all that is left now, and that can be rather dangerous stuff.
For our reality, my son needs a special school. Of course if he does that, bang goes his DLA payments, including his mobility component. The assumption seems to be if he's attending a residential school I no longer have to buy clothes for him, or take him on outings, or trips to the doctor or dentist if he gets ill, or attend meetings about his care or education, or make appointments for him to attend assessments. I'm not quite sure how they figure this one but that's the way the cuts are going. If by some completely idiotic process of assessment someone assumes when they see my son on a good day that he isn't worthy of High Rate Care (and you'd have to blatantly ignore every single piece of evidence to the contrary) I would not only lose his DLA but carer's allowance and the disabled element of child tax credit. That's nearly half of what we live on right now - without that I'd have to move into council housing (basically, right onto the dole I've managed to avoid till now), and probably into something completely unsuitable for either of our needs; sticking My Son, the Walking Target to Bullies on a sink estate would be a disaster, and me having to navigate anything with stairs would put me right back to housebound again.
I can't think of any other words to explain this. I can't think of acceptable statistics for it. I can only say what is happening to myself and my son. It doesn't appear to be enough - after all, I'm not an economist, or a statistician. I just live it, and therefore it's merely whingeing. Or something.
Labels: Advocacy