Move from DLA to PIP

we had to fill in the dreadful form to move from indefinite DLA to PIP.

I filled in the form with my son present. He signed it.

Assessment date son refused to go, as he works (he knows the route to work as did that route from home to uni everyday for years, and its 1 stop more) a home visit was arranged, he refused to be home or let anyone into the house that day !  

I have spoken to PIP but they want to speak to my son, they got his number and called him, he screamed down phone speak to my mum, got him very agitated! 

Now a letter saying he needs to speak to someone to apply for PIP or his DLA stops in a months time 2 weeks have already passed and he refuses to speak to anyone. I am worried now as his lifetime award will stop ! Its so unfair xxx

Blossom I hope all went well for you, did you get any answers from the government minister?  I would love to hear how you got on...  My son was successful with PIP... [this time] however his ESA is soon up for renewal.. Here we go again!!!

Just thought I would update you on PIP assessment, well on the face of it, it appears to have gone quite well; the lady interviewer was pleasant, I wasn't expecting that to be honest.. have we been lulled into a false sense of security?  'tell me about yourself' one of the first questions to my son ... err.. long pause ... My son will find that particular question quite difficult to answer... he is on the Autistic spectrum... this you see is the problem with this silly assessment.  Most of the otther questions were just a repeat of the form itself.. Why then the need and cost dare I say of a face to face interview?

He now has a long pause before knowing the result of this dreaded assessment....just awful...

Cancelled sons appt. for this weeks assessment due to inconsistencies between GP surgery and ATOS, ATOS says they have asked for further information from his GP and Surgery says they have not received a request for information.  Since the face to face assessment was made due to insufficient evidence, my son will be at a disadvantage before he sets a foot in the door.  Apparently the GP can refuse to give information to ATOS!  Until this is resolved my son wont be attending the assessment.  Atos have made another appt. for end June and say they will chase up response form GP.   My son is now beginning to show signs of anxiety due to this process, Unacceptable simply unacceptable.

Blossom for Prime Minister!!!  What a shame IDS didn't go the same way as Esther McVey, actually I think you will find the 'powers that be ' are probably all in it together.. none of them seem too keen to put their heads above the parapet on our behalf.  It's the cumulative effect of these welfare cuts that is so concerning and the scrapping of legal aid I feel we really are 'up the creek without a paddle'.   I had a Carers assessment a few years back just for the sheer hell of it - knowing that they had nothing to offer its the principle you see I just love filling in the forms I cant get enough of it.. they did have nothing to offer, but its the sincerity that counts.  

You are exactly right moonriver. This government is seeking to redefine disability on a non medical basis. Never before have we had a situation where the opinions and diagnoses of the medical profession can be overuled by a government sponsored agency and I pray that the UN are, in fact, investigating what IDS has done, backed by our prime mininister on the grounds that the human rights of disabled people are being breached in modern Europe!! 

Thankyou Blossom for your kind words I really appreciate your message, I have done the rounds so to speak with MP's many years ago now fighting like you and outraged by the injustice, I too have the standard letters of reply. 

Is it possible that we are going backwards in protecting the vulnerable?

The 'goalposts' are being moved under the guise of 'protecting' the MOST vulnerable.

I dont want to be told that my son is not vulnerable enough to be protected - by a tick box assessment, this is just ludicrous. 

Assessment next week and I will fight to the very end..

Hi moonriver,

My heart goes out to you. If its any consolation at all, the amount of evidence you are able to submit doesnt seem to make any difference in the decision to interview or not. The parents of a young family member of ours have a wealth of evidence  and a child who  is non verbal to everyone except close friends and family and yet she has to attend an interview!! Its a national scandal and the only reason there has been no national outcry is because the disabled cant cry out and their carers are too tired and stressed to take on the battle. 

This really is intolerable, another battle - more worry and uncertainty - filled the PIP form in for my [adult] son who is then called in for assessment [reason lack of evidence]

what evidence?  It can't be medical evidence since he has written evidence confirming his diagnosis. Therefore they want evidence proving he has difficulty doing the things I've said he cant do, and that he has given his signature to.  Presumably when he goes for his assessment I will have to repeat again the things he has difficulty doing and he will have to confirm that he has difficulty doing the things he cant do. The same evidence thats been given to DLA, and ESA [both a battle]..

He hasn't got a Social Worker.. doesn't meet the criteria. Therefore no evidence.

He hasn't had Physiotherapy for his Dyspraxia since his diagnosis as a child .. no Physio post 16 .. actually in his case none since 6 years old. Therefore minimal evidence.

He hasn't got an Educational statement thats worth the paper its written on. Therefore minimal evidence.

He didn't even get a transition report child/adult reason given he meets educational standards.

I have however hundreds and yes I do mean hundreds of pieces of paper that these people have filled in.  Why then do I have insufficient evidence to give to PIP.

Hi longman.

I absolutely agree with what you say but after all these years of battling for our grandson's needs to be met, there is something in me that wont allow me to give up the fight! More and more these days I need people to look me in the eye and talk to me. Most of my dealings with MPs have been as you say, fruitless. I get an email to tell me that they have passed on my concerns to the department who deals with it and then several weeks afterwards I will get a set response from that department just highlighting the government policy.

When I complained that a minister had completely ignored the question I was asking, it was pointed out to me by my Conservative MP that the chap was actually a liberal democrat!!!! I have even been advised to get a solicitor to fight our grandson's cause by a politician who was so far removed from real life and the financial constraints that full time carers are under, that it would have been laughable if it weren't so tragic.

I wont allow our grandson to be just another name in their complaints log book. So nowadays, I will keep going and force them to face me and answer my questions.

Thanks for your thoughts Zem. My second point, and actually the one that worries the most, is that although the government will constantly claim that PIP will meet the cost of the disability and not the income issues, there is actually nothing to stop them from downgrading their DLA assessment, and therefore not needing the higher rate or indeed any rate of benefit. If somebody is the unfortunate position of losing their PIP then surely they will be forced to try and work and to have to undergo constant stressful job interviews just to maintain an income. And I believe it is already happening.

I completely agree with you that the starting point in order to receive base rate is is set too high for daily living and that many people wiith autism and similar conditions will be likely to fall through the gaping hole.

 Our grandson has been assessed as high functioning, academically able and fluent but at the same time, severely socially disabled, exhibiting damaging and violent behaviours and suffering crippling anxiety levels under the DLA system by his pschiatrist, social worker, special needs school and paediatrician. His rigid and obsessive behaviours have led to him being severely limited when it comes to taking part in society and consequently has limited our lives as well. We love him dearly and are doing everything we can to bring him up in a loving and supportive environment.

Our fear is that the PIP system will score him low because the questions do not explore the depth of his issues. For instance if he is asked how he manages with the bathroom he will report that he, of course, recognises the need to use the bathroom, can do what ever neccessary and then leave. His sense of 'self' however is nothing like ours and he doesn't see the need for most of the routines that the rest of have in order to take care of ourselves. So once he has left the bathroom we will invariably spend time clearing up the smearing, pools of urine, put the shower back together, fish the toilet roll out of the unflushed toilet etc. All this while trying to tempt a seriously cross and verging on violent young man to go back to the bathroom to clean himself up properly and to wash his hands.

If asked if he can negotiate a trip out on his own he will undoubtedly tell you that he is old enough to go out on his own and doesn't see why Grandma and Grandad are always on his case about it. Under normal circumstances he would be able to manage a familiar route and can cross the road safely. The problem is though, that anything out of the ordinary can upset and frighten him and he is liable to try to run home in a blind panic ignoring the roads completely. So we don't allow him to go out unaccompanied which can mean that when he gets upset he will turn on us in the street and then if he does run at least we can attempt to keep him in sight although its becoming harder as we get older.

I fail to see how a set of 'catch all ' questions are going to be able to assess this complexity fully, particularly as the assessor doesn't even need to be an expert in the field or even a doctor!

Blossom59 said:

Has any account been taken of the massive stress that an autistic person will be under during any assessment...

...If a 16 year old with autism loses their right to PIP following assessment what are they supposed to do for income as the school leaving age is shortly to be raised to 18. They, therefore, one assumes cant even sign on as unemployed. (Not that our grandson could cope with job interviews either).

I think that the first of these is crucial: I have recently been applying for PIP and it was very stressful.  Yes, it's not going to be easy for anybody but if you are autistic and very prone to anxiety (and have to get everything exactly right) it is overwhelming.

I'm a bit confused about the second, as my understanding has always been that DLA/PIP are meant to be about meeting the costs of a disability and not "income" as such.  So I don't quite understand where not being able to sign on as unemployed/start work comes into it.

A very big issue to me is that there is nothing between the base rate (£53) and nothing for daily living, and you have to get too many points to get to that.  The result is likely to be that people who would still face very significant expenses associated with their disability will not get anything because they are half-way to the base rate.  E.g. Needing social support to be able to mix with other people gets you four points or needing support to "express or understand complex verbal information" gets you four points.  Or needing assistance to manage toilet needs gets you four points.  Each of these is very significant even on their own but only get you half way to getting any financial support.  Even half of the base rate is £26.50 per week, or £1,378 per year!  That's far from a trivial amount, even ignoring whether it is adequate to cover the above needs.  Are people with this level of need supposed to just find that money themselves?

I've not looked into the mobility component so much but the threshold to get anything for a physical problem with walking is very low: 200 meters!  My life would be turned upside-down if I couldn't walk ten times that.  I wonder if the people writing the forms just assumed that everybody has a car anyway.

I think at the crux of it is, that they seem to think that although autism is lifelong, people have varying levels of what they can cope with, with it being a spectrum and that coping abilities can be variable.  But as we all know, coping abilities depend on many variables and can become permanently reduced when forced to endure adverse environment for any length of time.  They seem to think that if someone seems OK at the time, they will stay that way and that affects their benefits.  The trouble is, that once the pressure is piled on, the clock is ticking until everything breaks down again and can cause autistic regression.  They also need to understand that masking can hide a lot of huge difficulties.

I know NAS has presented most of these questions to the Government.

I've been trying to get answers to many things, partly direct with DWP and partly through my MP. Even when I haven't asked such questions, I get the answers, because it seems to be something on their minds.

The tragedy of our time is that the Government response is just so much hot air (let's call it Cameron's wind). It quickly passes and has absolutely no promise or permanence.

We are sadly in the hands of a little cabinet clique of Eton public school boys (a school that boasts that it has few pupils with any kind of learning disability, and whose disability access entry on the website is for visitors only). They only represent privilege.

All you'll get from your MP is assurance that all this is being done as he speaks. No it isn't. You wont get anything from you MP on this that amounts to anything beneficial.

I wish NAS Campaigns would wake up to this.