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PIP experiences

KathyM

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

Parents

  • I don't have experience of PIP, but I can tell you that myself and both my children get DLA for ASC.  It would not be seen as a fraud and you have the evidence anyway.  Both my children are high functioning and get middle rate care and low rate mobility.

    Regarding you speaking for him, I totally understand as my eldest is very much like this.  I don't think you would have too much problem over this as I believe they encourage the individual to bring a supporter if they have trouble.  In exceptional circumstances you also may be able to get them to visit him at home for the interview.  I think the fact that he would clearly have such trouble speaking up would go in his favour as having a disability that impacts him.  You could also ask as a reasonable adjustment that he answers by typing into a device instead?  According to the Health & Social Care Act 2008 and the Equality Act 2010 this would be perfectly reasonable to ask for as a reasonable adjustment.

    I understand that PIP forms are meant to be more user-friendly and appropriate for autism than the DLA forms.

    Good luck.

Reply

  • I don't have experience of PIP, but I can tell you that myself and both my children get DLA for ASC.  It would not be seen as a fraud and you have the evidence anyway.  Both my children are high functioning and get middle rate care and low rate mobility.

    Regarding you speaking for him, I totally understand as my eldest is very much like this.  I don't think you would have too much problem over this as I believe they encourage the individual to bring a supporter if they have trouble.  In exceptional circumstances you also may be able to get them to visit him at home for the interview.  I think the fact that he would clearly have such trouble speaking up would go in his favour as having a disability that impacts him.  You could also ask as a reasonable adjustment that he answers by typing into a device instead?  According to the Health & Social Care Act 2008 and the Equality Act 2010 this would be perfectly reasonable to ask for as a reasonable adjustment.

    I understand that PIP forms are meant to be more user-friendly and appropriate for autism than the DLA forms.

    Good luck.

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