[angry] need to vent re. friend's DLA issue [angry]

[geekgirl]

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.

OK one thing she needs to know. If she gets up in the night it is not counted as being up unless she is up for 20 minutes in any one go. If on her form it looks as if she gets up 15 times for 10 minutes at a time it won't be counted. So she has to make it very clear that she is up for more than 20 minutes in any one slot.

Of course she should get higher rate. If he attends an SLD/PMLD school they are taking the piss with middle rate.

Tell her to hang in there.

Middle rate is ridiculous ! I get middle rate DLA and I said on the form that I never get up at night ! She must contest this silly decision. Their 'arguments' about lifting etc are nonsense. I know it's hard but encourage her to keep going.

I am so f*cking shocked and dismayed that they do this to someone who obviously has a lot on their plate
He has a long list of medications he takes several times a day, too.
God I would love the chance to kick their arses.

I mean FGS, we get the higher rate for dd2 who is a complete and utter walk in the park to live with (apart from the getting up at night stuff), no meds, mainstreamed etc.

My sneaky suspicion is that they sussed she wouldn't fight back because her written English isn't that good.

Whats the matter with the DLA people! Do they love appeals! Shocked too. Hope your friend accepts your offer of help.

Just read through this thread and feel like a complete novice!! My DD3 sounds very much like your friend's son in some aspects of her behaviour. I am regularly up at night with her, I've had the (thankfully occasional) night with no sleep at all. We only get middle rate for care, I never even assumed we could get higher rate. I'm currently waiting for our latest award to come through, so lets see if its changed

I have heard of a lot of people being awarded less recently. I think currently they do love appeals.

The reader comment on my website about mobility is worth reading

This is totally appalling. Can she also get a health professional to back her case in writing?

We get higher rate for mobility and care for dd1. Your friend should be awarded it to.

Please tell her to hang on in there.

has your friend got anyone at the school, or other organisation that can help with the appeal? I am shocked that she has so much to deal with and the middle rate seems almost insulting.

I don't know enough about all this, but when I was applying for dla for my ds, having someone who knew how to word the dla form really helped me. (an early years support teacher came to my house for at least 2.5 hrs, to help me)

I hope your friend finds the strength to fight - her ds clearly deserves more imo.