My best friend has a 9 year old ds with DS, autism, profound deafness and epilepsy that's only partially controlled. He's almost completely non-verbal, in pull-ups and loves nothing more than rampaging through the house much like a 12-18 month old toddler would - but with the size and strength of a 9 year old. He goes to a pmld special school.
He's a happy, friendly lad who obviously faces a lot of challenges.
Today she found out that the DLA people will not give her higher rate DLA because apparently his nighttime needs (smearing, seizures, up for hours almost every night) are quite similar to those of a typical 9 year old and could be sorted with protective bedding and 'suitable adaptions' made to the house . They also suggested regular 'lifting' throughout the night to solve the toilet issues - this is a child who is on melatonin and can easily start the day at 2am.
It's now going to go to tribunal, and she says she just can't face attending - she's not very confident in those kind of situations and says she'll just break down in tears. I have offered to come along (and I know I could really kick their arses) but she says she just can't do it
So they'll no doubt get away with keeping him on the middle rate, the barstewards
Thanks if you've read this far - I just need to get this off my chest. I'm so very very with them.
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[angry] need to vent re. friend's DLA issue [angry]
10 replies
geekgirl · 31/07/2008 19:38
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Tclanger ·
31/07/2008 20:32
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LeonieD ·
01/08/2008 11:20
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