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KathyM

PIP experiences for HFA/speaking for someone

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Hi everyone
Sorry for yet another plea for help/information! You've all been so great.
Right. Dan is 16 and was diagnosed in December - standard use of "ASD" in the letter of diagnosis, but specified as autism itself rather than Asperger's because of his language delay. He also has sensory problems which he has just been assessed for, and anxiety, reactive depression and quite bad dyslexia.
We've held off applying for DLA and now it's bloomin' PIP. The reason we held off was originally for diagnosis, and since diagnosis Dan's been worried that because my husband and I already get DLA for our own problems, he would be seen as a fraud case or red flag on the system for applying as well. He also absolutely refuses to do a medical, although he has started to change his mind on that.
We've been advised to try and encourage him to apply. Obviously now it's PIP and as such I have no experience. My big sister is a welfare rights worker but I don't want to ask for specific advice/help.
Dan has said that if it went to a medical he would not talk to them, and would want me to talk for him. This is an issue that is in his diagnosis, that he prefers me to speak for him. I know if he spoke with them that he would easily get led into having his words twisted, but I'm not sure they'd even get that far with him if he gets too anxious to even speak. When that happens he's more likely to grunt yes and no and even say he doesn't need help (one of the obsessive trails of thought he has is over whether people see him as "weak", and when he had an EP review a while ago he said he had no problems and didn't need any help). If they managed to get him to talk, I'm very worried he would end up saying he can do anything they suggest he can, even when he can't. Have others applied for this and been able to have someone answer questions for them? It's not like he's physically incapable of speech, but he does "shut down" when faced with anxiety or new people. It took him weeks to start talking to CAMHS.
I was wondering what experiences of PIP others have, particularly whether it went to a medical? I'd also be interested to hear what other high functioning people have been awarded - not expecting any personal information unless you feel comfy sharing. It's just that if it's common for them only to be awarded a tiny amount, it's worth weighing up whether it's even worth applying - save him the stress, etc. I appreciate everyone has different care/mobility needs so will weigh that into consideration. When I've gone through the list of descriptors, in my eyes he would score quite highly in care and lower in mobility (when I added up what was fair it came to the high rate in care and standard rate mobility) - but what I think and what they will give are two very different things.
Thanks
Kathy
xx

 

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We had the same problem with T's ESA medical - I wrote loads of extra notes to go with the claim form, and explained that he would need an assessor who had a good understanding of ASD and that he would need careful questioning in order for them to get an accurate picture of his needs. I am his appointee and and I explained that T had problems talking to strangers, that he did not like talking about his problems and woudl underestimate them. At the medical T answered a few simple questions and then I answered the rest.

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