PIP applications for non physical disabilities


Dear members,

I am in the position of having 2 pip applications at one time- one each for twins. Same diagnosis, different impacts in different ways but essentially the same overall impediment to daily life.

Up until this month I have had nothing to do with PIP. The only reason I do at this point is my children have turned 16 and that's an automatic PIP migration.
Scare stories in the media - I had the same determination approaching PIP as I always have for DLA.
Firstly from the point of view of no matter they may attempt to award, I know not only what I'm stating is true and every day life, but also I would have an expectation that (at some point) the awards would have to reflect honestly the impact on the kids.
Most DLA awards have resulted in face to face tribunals from initially lowballing the awards. All of them have resulted in eventually higher rate care and mobility for each of the kids. 
And I have had the overarching view point both of pessimism and belief that no matter the DLA did or claimed truth would out and it would be made right.
Irrespective of scare stories all over the media for a long time now regarding PIP - I suppose partly because I had to manage my stress levels so apportioned out and controlled what I would give any thought to, but also because  had over a decade of two kids worth of DLA applications, mandatory recons and tribunals giving me a feeling of expect the same again to come.
Signed up to work and benefits as a member- accessed their PIP guide to claiming. Spent more hours than I care to mention filling in forms and providing in one application 50 A4 sides of paper in additional words from me and n another 32 pages of the same.
My hands are still not right after spending the hours I did completing the forms.
I assembled evidence sent it all in. Perhaps those with the horror stories from PIP are the ones who didn't go that extra mile in completing the application? All I can do is get as much evidence as I can and send it in.
A matter of a few days after one child's PIP application was received and I have doubts anyone read through the 50mpages, documented evidence and the actual application submitted- I get an out of the blue phone call.
Its some sort of state registered nurse they say designated PIP application staff to assess one of my children's PIP applications.
Brief chat arranged the call to be the following day which took place and was odd. 
There was something unusual about it and I couldn't put my finger on the motive but there was an agenda. The question being asked was repeated about mobility. I answered it. The assessor clearly wanted me to say my child can walk and nothing else. It was abundantly clear that was what was being sought.
I would not say this because that is not the whole truth, supervision is necessary. As the premise behind the application is Autism and learning disabilities the application must be viewed from that premise. So there is no such things as a simple statement with anyone who has severe autism as a simple statement of physical ability without it also being acknowledged that Autism actually impacts and affects that physical ability in every way.
Assessor was having none of it.
I got upset when he said if he couldn't get a satisfactory answer for him it would have to go to an assessment centre or face to face assessment.
*Only* because I was unprepared for the reality that the Government requires someone to be put at risk of harm to themselves for a PIP application.
We arranged to call the following day- today, Wednesday.
I had all the descriptors in front of me, got him to clarify it was the moving around question he was referring to but then he was not happy about being specific. He was about being non specific about hat he was querying. I gave him or attempted to give him the typical brushing of teeth scenario for my child. That's day to day, involves  moving about to the bathroom. He cut me off saying that was no good too many variables.
As anyone will understand Autism is nothing else but variables controlled and affected very much by the environment and what is in it.
Made no sense. He then changed tack veered off to a wholly unconnected topic and had the tone and wording of someone who was expecting some sort of big reveal or taa daa! moment. o
He raised a point about 2 education healthcare plans I had included. Both from 2017.
I know my evidence, he did not. He veers off onto these things while I'm thinking hang about - you've been so insistent over this mobility issue why are you not wanting to hear about the mobility of my son...
But like probably most people in this situation, I go with the flow, he is in the assessor so I'm there to give the responses. 
The ehcp's I provided were submitted by me not because of their content but purely to evidence that my child was acknowledged by the local authority as requiring them to provide one.
The reason why they were both 2017 is because the first one produced in 2017 was a crock of utter nonsense I refused to sign my agreement to and resulted in my complaining and a new ehcp officer taking over and taking on producing *amended* ehc plans and the second ehcp also dated 2017 that I sent in had the word DRAFT on every page because it was that replacement ehcp officers first attempt at writing an amended plan to the first one in 217 that I refused to sign because it wasn't accurate.
This is why when I sent them in it was from my point of view that the content meant nothing because it was bogus- but what was of merit was the evidence that my kids had ehcp's.
As it happens I also have emails between myself and the replacement ehcp officer where I am chasing up and chasing up his (lack of) reports. He never actually produced a single one- not ever.
The ATOS assessor (they've now rebranded to something that isn't ATOS, but really it is) segwayed into ehcp details. There's a discrepancy between the content in the plan and your responses on the PIP form.
That's correct. I sent those in not for the content but to evidence the fact that the local authority acknowledges the kids need and merit the plan entitlement.
Que reading from one of the documents something about my sons claimed ability to talk in sentences and in what was a gotcha! smug tone down the phone.
At that point I then understood what it was all about. This was someone with the agenda and was trying to "catch me out".
It doesn't work when you're not lying though. Ad I simply explained the facts and truth. I also asked which report he was referring to , he fudged that saying it was in one of them.
I had to point out both plans were dated the same date. I had to point out each plan was authored by two completely different people. I had to then point out one of them had the word in 10cm high dark grey letters "DRAFT" on every single page.
I stopped short of pointing out that anything marked "draft" is not an actual document. That is why I was happy sending it - because the content could not ever be referred to as fact- but the fact that it existed could.
None of that mattered and as I explained it he got testy. Segwayed on to when was the last time you were out. I'm caught off guard again. I say to him I'm not sure I could refer to my diary if I can find it- because I want to be accurate. He says no need for that just when was the last time you were out with child.
Last week. Going purely from memory and being put on the spot and more than a little confused at this stage to this bizarre form of questioning.
Mc D's drive thru I believe. Going out as in leaving the front door of the house.
End of the conversation was he had really tried al he could to avoid it having to be sent to a face to face assessment but I wasn't answering his questions so he could prevent a face to face happening.
Im having none of that attempted guilt trip- point out if my answering questions honestly isn't what he wants to hear that's a matter for him not me and we end the conversation.
The point of me writing this down is I would have appreciated having the chance to read this, in advance of my PIP application. 
There are How to guides all over the place on PIP as well as horror stories.
Nothing I came across was specifically about non physical disabilities which is partly why I did not refer to them s applicable to my kids.
What I am getting at is I (hoped) both kids PIP applications would get through the process without it being a wrangling push pull who blinks first stand off. That isn't the case and that is in spite of my being completely open honest and not manufacturing answers to suit when prompted.
For this assessor it wasn't "personal" in so far as he didn't know me or my son. He had an agenda tried with coercion then went for threat of face 2 face assessment if I didn't give him what he was looking for and was even intent on shoving the knife in after this by attempting to claim it was my fault the application was going to face2 face assessor.
Irrespective of whatever his mindset was, that's a nasty little flourish designed to mentally kick you in the stomach and blame you for whatever comes next.
That is an indicator that the approach has nothing to do with truth, nothing to do with facts, but everything to do with trying to bend both to fit a pre conceived view point or decision which in this case was attempting to use me to down grade my sons entitlement to less than it has been.
when I refused to bow under that pressure, tack was changed to some sort of half baked interrogation clearly aimed at catching me out in a lie that doesn't exist. By failing to show myself up as a liar (because I wasn't) I ticked him off further and his parting shot was face 2 face assessor and its all my fault that this will now ultimately result in a deviation of routine for my son and what comes from that in his behaviour is all on me.
I am wrting this because it is a first hand experience and something I wasn't prepared for because I actually gave ATOS more credit. I did not conceive ATOS would attempt to use documents which were marked DRAFT as being actual tangible evidence. I did not conceive ATOS would stoop to picking and choosing evidence they were going to believe- as I pointed out that in the documentation bundle was also a report from a speech and language therapist who did not claim my son could speak in full sentences and also an education psychologists assessment that stipulates he is in the bottom 0.1 percentile for ability in everything - another indicator that full sentences aren't there. And that the evidence he was referring to was not only the subject of a complaint but was produced by someone who was neither an expert or even a passing authority upon speech or language and neither of them had ever so much as clapped eyes upon my son.
Knowing what I do now, I wanted to articulate to try to help anyone else be aware that what can happen is you can be the subject of this kind of pick and mix evidence mentality where the facts are ignored and definitely are discounted when they do not fit an agenda and to be prepared for someone trying to abrogate responsibility for their ( non fact based) decisions and try to tell you that whatever harm comes as a result is your fault.
That last one is as important as anything else because I know it can be a fragile state f mind especially if its been a very trying day and having it capped off by someone who doesn't live the life and doesn't have to live with the consequences of the power they're wielding tossing out their own version of nastiness- can affect you deeply.
If it is known that this could happen, maybe someone will not be hurt as badly as they otherwise will. Maybe by relating the experience I have had, it might help with decision making on evidence supplied.
I do know the experience I had is dangerous to carers who by virtue of what their daily lives comprise of, do not need another experience of another person kicking them when they're coping with what they have to and after spending a few hours effectively seething under my breath over the whole thing, my next feeling was I have a responsibility to tell this and if it gets passed on it can only serve to help by anyone who could read it being aware such situations as this do exist and can happen.