17 yr Autistic daughter just refused PIP

I am a 30 year old ASD suffer, didnt know i had it till last year.

I had gone for PIP back in March 2015, it took them 2 month to send me forms out as that i couldnt talk to them, i had to get promission to get my mate to contact them. When i got the forms i filled them in with support from my mate and got them sent back as soon as i could. After a few months of waiting i had a phone from the DWP asking me why i didnt attened a appointment with the medical team ATOS, when i past the phone on to my mate he told them i didnt get any form of letter and will be requiring a new appointment. 

After only two weeks i had one more phone call from ATOS nurse, to ask me questions she wouldnt talk to my mate about the claim and said if i didnt talk to her she would stop the claim, so i tryed my best to talk to the person as well as panicing at the same time. She was pushing for answers what i had to answer one way. I was on the phone for about 45 mins and the person said this taking to long right i think i got plenty here to do your claim but with the answers you gave me i am going to tell you now that you will not be getting PIP. 

I went for testing back in Oct 2015 to see if i had ASD, when i finsihed with team who was asscesing me they told i had ASD, they sent out the report what i then sent to the PIP team the nurse sent me a letter saying that she will not be taking the report as edviance and i sould stop the claim right away, i gone through all the right process and now going for my appieal. 

the report i got sent to me matches everything on the form i filled in with help, and still carnt go out with someone there with me, or even planning in the rute ect this takes me and my mate five weeks to do. I am like a prissoner in my own home. 

With the ASD i do suffer with Dipression and epilepsy witch i take meds for. It just seems that i am having to fight for the benefits i know that i can get, it as now taken nearly one year to get to this point, i can only just about talk to my mate and family without stressing and getting upset, i try to live a life but i still find it hard. 

When i sent them a letter to reconcider my claim they moved it from being no points to only just 4 points due to the report from the nurse, who i think and other people think hasnt got no idea of what it is like or got any clue to what ASD is. 

If any person who as got PIP due to ASD then please let me know i do have appointment where i got my mate, and my career with one other person atteneding to ensure that i am safe and that i dont stress to much. on the 23rd March 2016. 

Thanks all

Hi that is very difficult to deal with as it was for us. u16, My son only received low mobility DLA and nil care. Information submitted for PIP was almost identical to that submitted for DLA appeal, which was refused. It was very confusing, however the things I found that worked for us was to read the PIP regs  & points system on the gov.uk website and use the Disability Rights handbook to help shape my appeal documentation. It may also be helpful to contact the nearest community legal advice centre to get their support also.

Thank you for your reply, I really appreciate it. I read your post about your Tribunal day experience and am praying for something similar! The Cerebra and Citizens Advice advisers I've spoken to are at a loss as to how our claim has been rejected despite all the evidence provided. We're fighting zero points for care and mobility (daughter was on middle rate care, low rate mobility on DLA) so we have nothing to lose! 

Hi, as you are the appointee, you are there in place of your daughter as I was for my son. He could not have coped with a tribunal, due to anxiety and likely to have had a meltdown or got very angry with them. They should not be expecting your daughter to be present, the fact you are her appointtee means that the DWP have already accepted that she is not able to deal with her own claim.

May I ask if anyone has a different opinion on whether your child should attend the Tribunal? My 16 1/2 year old daughter's is at the end of this month and I just don't know how she'd cope with it. I've asked representatives of Cerebra and Citizens Advice, and they've both said she doesn't need to be there as I'm her Appointee. It wasn't going to be an issue as she's in her GCSE year at school so I wasn't going to take her out for a day, but the Tribunal date has been set for the Easter holidays! Any advice appreciated.

So glad to hear that other people are winning. We are now going through the process of applying for ESA. Just waiting to hear if my daughter needs a face to face assessment, which I am sure she will. I have found the ESA process slightly less stressful, so far, and our doctor was very understanding and happy to give out the sick notes. I would say again that the appeal process for PIP is worth it in the end. I am prepared to repeat the process as often as necessary. It is just wrong that this is what it takes though.

Rather bears out a long standing view of the benefits system.

Back at the end of the 70s after leaving university I took two temporary jobs, before going on to full time work. Before the temporary jobs I had signed on for a week or so.

I found out later that in those days I was entitled to a bridging pay out, which no-one mentioned to me at the time. Apparently students were entitled to money to help them over the gap between the grant and the first job. Bet that doesn't happen nowadays.

Someone showed me a booklet in circulation at the time "How to beat the benefits system". It was, contrary to appearances, quite a legitimate guide to internal procedures for the vulnerable and unaware public. I wonder if something like it exists today.

I asked to have the bridging payment back paid - they refused. On the advice of the booklet I asked to go to Appeal. They offered me half the payment if I backed down, but encouraged by the booklet I hung on. They then gave me all the payment. The booklet said they are very reluctant to go to appeal because it gets them into trouble.

My own view of the benefits system is that DHSS/DWP seems to be staffed by disillusioned frumps whose only entertainment is stopping people from getting their entitlements out of spite.

I suspect the benefits culture that Cameron is so obsessed about has grown up around having to "cheat" just in order to get what people are entitled to. If the system wasn't so polarised (ie if it was properly and responsibly managed) the country would be a lot better off.

Your experience seems to bear this out. They make up ridiculous reasons for not paying people what they are entitled to, hoping they are too scared to take it as far as appeal. As you've found the DWP had been needlessly obstructive and had wasted the court's time.

If the DHSS/DWP was honestly managed, perhaps a lot less money would be wasted.

So just to update, yesterday had a tribunal regarding my son's PIP. The clerk came in and said that and the panel had determined the appeal without a hearing, in our favour. The Judge said to me that they ( 3 panel members) only meet on the morning of their hearings and so can only discuss the cases when they get together. She told me that it was unnanimous decision & that, all 3 members could not understand what the DWP had been " playing at",  as it was clear cut, 100% consistent with the evidence and the DWP's OWN decision re awarding enhanced daily living award, ie that my son needs support for undertaking both known and unknown journeys. I was both shocked and stunned to put it mildly!

So what I say to anyone who is thinking is an appeal worth it, yes, keep going, be repetive in your submission, submit evidence in detail about the impacts that the disability has, and get advice from wherever you can.

My son who is 16 has just been transitioned from DLA to PIP. He was only diagnosed with ASD in March 2014, but we had already been awarded DLA low mobility but no care in JUly 2013, due to impacts caused by social anxiety and other physical impairments. The decision to award no care was appealed but due to the backlog was only heard in late October 2014, and the statement of reasons was only provided to me in January 2015 by the Judge, after I complained to my MP. I then consulted the community legal centre and they have appealed my son's case to the Upper Tribunal since they considered the lower tribunal had made a mistake in applying the law. Outcome not expected for many months yet.

In January this year my son was 16 and prior to that we were sent a letter re appointeeship, I applied and they lost the letter. The second time I applied and nothing happened for weeks until I contacted them, and hey presto an appointment was arranged at home. That was fine and I was made our son's appointee. I was then sent the PIP conversion letter and filled in the forms along with 15 pages of extra information about the impact that our son's condition has on his daily living and mobility. I have to emphasise that I spent a lot of time preparing this, and working in the phrasing and wording to match that in the DWP decision makers guide ( on gov.uk website). I also found the Disability Rights Handbook very helpful also.

The result of this was that the form was sent off at the end of March and having heard nothing after 4 weeks, I rang up the DWP to be told that a medical assessment had been completed ( without a face to face meeting) and the decision was expected shortly. A couple of weeks later I received a notice to say that our son had been assessed as meeting the requirements for Enhanced Daily Living ( scored 21 points) but only 4 points for mobility needs! but awarded for 10 years

Of course we had mixed views about this as our son is a high functioning autistic person. One of the major impacts is getting out and about by himself- he can't do that without it causing a great deal of axniety and stress etc so he doesn't unless we take him everywhere. He cannot go on public transport etc. He can't even walk to the local shops which are 6 mins walk from our house, yet he can play rugby for 2 hrs

Anyway, I considered this carefully and decided to ask for a mandatory reconsideration, so I rang up on the deadline day, and then sent in a written confirmation of my request along with a reason why I thought they had got it wrong on the mobility side.

15/6, I received a further decision letter dated 11/6 advising that they had re-considered their decision and the Enhanced Daily Living was still 21 points, but that they now evaluated my son's mobility meeds as scoring 10 points = standard mobility.This is the "you need assistance to follow the route of an unfamiliar journey" descriptor- totally frustrating since my son cannot travel anywhere either familiar or unfamiliar without someone else- which of course I had told them that.

Oh and they decided to knock it down to a 6 year award period and change the payment dates for good measure- like he is going to get better???

Anway, now I have contacted the Community Legal Service again and apppointment this week to go through with them as to whether we appeal to a tribunal -

The real difficulty all the way along has been to get an engagement with the social services teams, in the main because our son respects the rules at school and is a high attaining pupil GCSE's A's and B's, he is not a 'problem kid' so no one is seeing the bigger picture, like the fact that he has only 2 or 3 close 'friend's  or that he cannot mobilise himself to get out and about without being supported  and so forth. It really is an invisible disbability. Transitions process as school is a joke for much the same reasons, yet only yesterday our son had multiple melt-downs about what he is going to do come September. Very tiring and stressful for all including his younger sibling.

The PIP form seems more like a lottery some win and others lose all with ASD some with co-morbid conditions.  It seems to me that those who live with parents or are children are likely to lose out because it is impossible to see the real affect of ASD unless the claimant lives Independently.  Which will cost much more.  So its a circular argument many cant live independently because there is not suitable accommodation or support or for a myriad of other reasons, but dont have a professional to assess them for Independent living because the disability is being shielded by the home environment.  Saving money.  Is there then method in the madness, dont give the Milder end of the spectrum enough support [equals less likelyhood of independence] not enough evidence for benefits, outcome [;living at home hidden].

Hi, my son is 19 and has been going through the assessment stage since he was 16. He has had to deal with the transition from adolescent services to adult services which has caused lots of delays. I was advised to apply for PIP and I went along with him to his assessment. At that time he had still not had any formal diagnosis which I feel went against him. 1 week later he was diagnosed with Aspergers and then received his letter to say he didnt qualify for PIP. I read your post with interest as your daughter sounds very similar to my son. He is due to finish his 6th form course this month and the future is a big worry. He sees a Phsycologist for his social anxities and he and another phsychiatrist who assessed him have both said he could not cope with going into the working world yet as like your daughter he never leaves his room or engages even with us his family very much. I agree to look at him he is physically fine and I feel this is what they based the PIP assessment on.  We now have the diagnosis report and I am about to write the letter asking to be reconsidered, but I am almost sure that they will still tell him he doesnt meet the criteria. If you have a 'disability' that affects your everyday life and inhibits your ability to engage and interact with others then why isnt that enough? I feel so helpless keep watching him having to go through all these assessments knowing how much torture it is for him to sit there and be questioned and have to face people in an unknown place only to be told 'you dont meet the criteria'.  I will take on board the advise on here and contact my local welfare rights advisor as I am trying to help him on my own and feel like I'm drowning under the pressure of it all. It is good to see that you got the right result in the end. It shouldnt take that long and you shouldnt have to fight so hard for it.  I thought getting a dignosis would make life easier for him, but now I'm not so sure. 

I am 29 and was diagnosed with Aspergers Syndrome a couple of years ago. I applied for PIP in October 2013 and waited until July for a face-to-face appointment with a healthcare professional. The healthcare professional was a physiotherapist and was rude and dismissive from the start. He refused to take anything my mother had said into account despite the fact that we had previously been told that someone was welcome to come with me to help with the assessment.

It got to the point where the healthcare professional bullied me into giving the answers that he wanted. I was in tears through a large part of the assessment and after two hours it was over. It led to a meltdown after we had left the room.

I was turned down for PIP about six weeks later and after asking for a reconsideration, at which I supplied additional information, I was turned down again. I could not face an appeal by this point and, defeated, I gave up.

PIP is a complete joke and it's clear that they're using it to cut the welfare bill.

Hi 

I can sympathise with you - the process takes so long -its a joke. Go with the appeal and arm yourself with as many back up and support letters from others to back up your daughters diagnosis and the way it affects her. Keep at them and if the appeal fails go higher !!! Dont give up!! Threaten to sue the department if they dont take you seriously!! Your daughter is entitled to this money - ask for another medical appointment too with a different person. I fought tooth and nail for my boy who wouldnt leave the house due to crippling social anxiety. It was only when he became suicidal that they listened and helped. Keep going!! Hang on in there!! x

Hi DogLady,

I was so pleased to read your message. Its just so cruel that she will have it all to do again next year!!

I have never seen myself as a particularly political person but my dealings with MPS and government Ministers over PIP have forced me to engage with politics. I am devasted that the goverment now has another 5 years to continue unchecked with the awful PIP system which even if it were fit for purpose is so back logged because it was launched before the infrastructure to support it was properly in place and tested. I cannot understand why in a democratic country like this, there hasn't been a national outcry on behalf of the disabled and their carers. I guess its because they themselves find it so hard to cry out. 

I assume DogLady that Atos disagreed with the diagnosis of your daughter's medical team, GP or whoever helped you with your evidence. Where else in this country can a non medical body overrule the opinions of medical specialists. I am flabbergasted. 

We won our appeal for Pip this week. It was very stressful taking my daughter to the tribunal but the judge thanked me for doing so afterwards and said it helped us win her case. I would advise anyone who is going through the pip process as appointee for their child to make sure they are present at face to face assessments and appeals. It took us a year but it is a huge relief to win. Although the award is only for two years so we will be doing it all again next year!

How do we explain all that to an assessor intent on proving otherwise????

Our grandson's major challenges come because he can't see consequence, can't prioritize and therefore can't make choices or organise himself. Load on top of that problems with empathy, enough of a coping strategy to make people think that you can interact with others in a way that they would understand and high intelligence and both he and we were in for a rough ride. Far more is expected of him by society than he is able to give at this stage in his life.

If you can't look back and analyse your behaviour, if you can't look forward and imagine what might happen and if you can't put yourself in somebody else's shoes ie 'how would I feel if somebody stole my money' or ' what would it feel like if my parents punched me in the face' it must be incredibly hard to understand how to behave. We are all shaped by the world around us and our understanding of it so if you see the world differently its not surprising that you would find life confusing and frightening. Our grandson believes that the world should work for him...because it rarely does he is frequently confused, enraged and disappointed with it.

I doubt if this will be resolved until health professional and other authorities including NAS stop using the diagnostic Triad of Impairments to define everyday living.

It means ATOS and other assessors are guided by a strategy which deploys questions in different contexts to ascertain a difficulty supposedly common to people with autism. These questions are thought up to "trick" people into admitting they don't have an autism trait, assuming there are people feigning autism traits to avoid work. But whether or not you have a recognisable trait, extracted by such ridiculous means, misses the point.

A lot of problems living with autism are consequences of not having good social interchange. Social interchange allows non autistic people to qualify their perceptions and experiences by knowledge of what other people do.

People on the autistic spectrum don't get this social referencing so have to think through situations on their own. The difficulties aggravate ability to cope with the non-autistic world.

Until NAS and others research the problems of social referencing, we will never be able to help people on the spectrum properly.

The Triad of Impairments is designed so that psychologists can distinguish autism from other conditions. That is not the same as explaining everyday living on the spectrum.

I keep trying to fight this. It is an uphill struggle. NAS never listens.

Thank you DogLady.

I am startled to hear that they are asked questions other than the set ones. I didnt know that happened! I dont understand why those answers would be given more credence than the big pile of evidence we will be providing. Other questions shouldnt be asked unless by an expert who can interpet the answers. I am shocked.

Our lives are hard enough as it is....just getting to bedtime every day is a challenge. Shame on them for what they done. Its a national disgrace.

Hi,

Just an update. I am currently going through the appeals process as my local Welfare Rights officer says we have a good case and that they will represent my daughter in court, so that is a relief as I was going to give up.