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My son has been turned down for PIP - can you help me?

Perriann Member Posts: 1 Listener
edited June 2017 in PIP, DLA, and AA
I have a son who has Autism and have been reading your posts with interest, Especially the ones regarding the changeover from DLA & carers allowance to PIP.
My son has been turned down for PIP as he did not score any points at all after having a meeting with a woman from the Government run company of ATOS.  He attended 2 special needs schools after self harming at 5 & being unable to cope with the noise & large scale of mainstream schools & always wore headphones everywhere to block out the noise & used to stim to calm himself down by waving his hands about & spinning in circles on his own.  He also hates to make eye contact, even with me sometimes & I am his Mum. He used to hide under the table at school & climb in the wardrobe where it was safe & dark at home. He also has sensory issues & does not like being touched or held. He was fully supported at his last special needs school & the helped brilliantly in his transition from secondary to College with taster days & getting him used to being in the building. Now 3 years down the line, he is nearing his final exams in IT - he is a computer whizz & loves anything technical & has gained good grades as it is his obsession in computer graphics, but he chose to be unsupported at college, as he wanted to prove he could manage his course & this has also gone against him regarding PIP. He has also been getting very angry with me lately, deciding that he does not want to be defined by his Autism, so he does tell people he has it & hates me talking about it. I wish I had seen the criteria for what happens during the meetings for the deciding factors for PIP as on the day I took him in a taxi, to keep him calm as he hates the noise of public transport, the bells, the noise of people talking & has never been on a bus on his own as he would not be able to ask the driver for his fare or know when or how to get off without being accompanied. He cannot understand signs, despite being a computer boffin & only interacts with people online, apart from the people on his college course. He has no social life outside our house as he hates what he calls ' small talk ' & as soon as he gets in he strips off as he hates wearing outside clothes & prefers his comfy PJ's with no scratchy labels. During our PIP meeting the woman kept telling my son he was just like a normal teenager & he was very happy being told this. She asked if he could cook, he said he can put hot water in a pot noodle & on his form, she wrote he can prepare food & cook a full nourishing meal. He has never cut any food up & cannot use the cooker or microwave, despite me trying to encourage him. Everything he answered her was taken out of context. He kept his duffel coat on as he did not feel he wanted to take it off in her company. He is very thin as he only eats certain foods & his hair is very long as he hates being touched by the hairdresser. She stated he was not underweight & well groomed & excellent at managing money - she asked him a couple of infant maths sums & he read a couple of letters on an eye chart. She totally patronised him & wrote a totally fake report on his abilities. I have appealed twice on his behalf,but they are taking my word over hers, despite me being his main carer since he was born & Doctors reports & evidence of his meltdowns from school reports & statement of Educational needs which he has always had each year in his schools. He thinks he can walk into any job he wants, but has never had an interview or been in a work setting with people he does not know. He may have the academic abilities, but he has not got good social skills & gets very anxious, always wanting to come home all the time if we do go out anywhere. We no longer get carers allowance or DLA & they have also taken away my tax credits as he was turned down for PIP. I suffer with Osteoarthritis & anxiety & other Autoimmune conditions & also work 2 jobs now to support us, I do not know what will happen when I can no longer work due to ill health & feel very let down by the services. when I am no longer around to take care of him I dread to think who will be there for him & it makes me very anxious for his future welfare.


  • Liam_Alumni
    Liam_Alumni Scope alumni Posts: 1,105 Pioneering
    Hi @Perriann,

    Welcome to Scope's online community! It's great to have you on board.

    I'm sorry to hear about the difficulties you've been having with PIP, it sounds like a very stressful time for you. In terms of those two appeals, are those the mandatory reconsideration and tribunal? We have more advice about appealing a DWP benefits decision on our website.

    I hope this helps. I have also moved this post to our Ask A Benefits advisor category, where @BenefitsTrainingCo may be able to advise.

    If you have any other questions, please do get in touch!
  • BenefitsTrainingCo
    BenefitsTrainingCo Member Posts: 2,628 Pioneering
    Hi @Perriann

    I'm so sorry that you have been having difficulties with the transfer from DLA to PIP and the loss of additional benefits because of this.
    I echo the information inserted above by Liam about appealing a benefits decision - these pages will help if you are in this process. 
    If you have already appealed and by turned down by a tribunal then submitting another claim may be your best hope of trying to get PIP for your son.
    It might help to look at the PIP descriptors and talk these through with your son before submitting another claim. You can look at the PIP descriptors here.http://https//
    Let us know which stage you are up to and we will be more than happy to provide you with more information,

    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
  • wildlife
    wildlife Member Posts: 1,308 Pioneering
    edited August 2017
    @Perriann When did your son have his assessment? ATOS are not government run. They are a Private company. Therefore they have their own complaint's procedure. I don't know if there is a timescale for making a complaint but strongly advise you to do so. I did this for my own claim and although ATOS still are not replying they are investigating it and you can then use the fact that you have complained to convince DWP you are not happy with your son's assessment or the report done as a result of it. As mentioned by Laura it would be useful to know what stage you're at but if you do complain in writing to ATOS make sure DWP are told about this when you take his claim to the next stage. If you have finished with the claim you're describing it will also help with a new claim. I have a son with learning difficulties and possible asberge's/autism but he's never had a proper diagnosis. He scored 0 in an ESA assessment in 2011 but after a Tribunal for which I submitted evidence of past behaviour he came out with 48 points. He then got PIP higher rate for Daily Living and lower rate for mobility without even having to have a face to face assessment. Your son sounds much worse than mine so there is hope for him to get PIP at some stage. My son also will not accept he has any mental health issues and says he can do things he cannot do in assessments. As he is an adult and we have a problem in this country with parents being able to answer for grown children it makes claiming benefits very difficult. You could also keep a diary or a written record of all your son's problems and use it for future claims. Not sure if you are your son's official appointee for DWP benefits. If not ask to be made this and that will also help. Good Luck..
  • 1zzyskint
    1zzyskint Member Posts: 2 Listener
    People having trouble with the assessments and PIP in general, is rife. 
    My wife recently had an assessment by Capita and the decision maker turned the claim down. After reading what the assessor had wrote down, I'm not surprised. I've never seen such a load of rubbish in my life, some of the things he said my wife said, was actually said by me. We said she has 12 siezures a month, the assessor said we said she has 5 siezures a month. 
    The assesor said my wife had no cognitive issues, when I was helping her to fill the gaps in her sentences (as we have become used to) and she was having speech and word finding difficulties (which we have become used to) when talking to the assesor, the Capita guy said she spoke fine !
    very disappointed and of course we are appealing the incorrect decision. 
  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,384 Disability Gamechanger
    @Perriann welcome to the community.

    I have a daughter with Asperger's and she too hates telling people about it. She is not as bad as your son, but has accepted that there are certain people she needs to tell, others it is down to her discretion. 

    You have already been given good advice regards PIP. The sad truth is the system is set up to get as many people as possible off these benefits, at Mandatory review around 80% of the reports are rubber stamped and they count on people not going to tribunal where the success rate is between 60 and 70% depending where you are.

    There is not a lot you can really do about how the interviews are conducted, but you can do a lot to understand what the different descriptors mean, and how they apply.

    Regarding your son starting work have you heard about Mencap's Learning Difficulty Work Experience Week? While this week is generally in November, I think, the office I work in has been involved with this for four years offering work experience from 1 to 3 weeks outside of this period. Certainly where I work all the staff in the office are very supportive of those people we have on this scheme. The feedback has been that most have gone on to full time jobs.

    If you and your son are interested you can find out more at

    Do check out the list of employers who were involved in the actual week itself.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • wildlife
    wildlife Member Posts: 1,308 Pioneering
    edited June 2017
    @Geoark I'd be interested in your opinion of when someone with LD's is offered full time work they cannot do this and continue to receive benefits especially at the higher rate. My son is now 33 and has only ever worked for us in a family business which went into liquidation. After that fell through he remained unemployed during which time I was his appointee and I helped him to get ESA (support group) and PIP higher rate DL and lower rate mobility. He eventually got a little job as an early morning cleaner but gave it up after a year as he had no support and his job centre advisor told him if he carried on he would lose his ESA. That was in 2013 and he's done nothing since. I know from experience that although the ruling has changed regarding the year cut off that you're allowed to work under 16 hrs a week he would almost definitely lose most if not all his benefit if he managed to get a full time job. He doesn't need the level of income he would have if he worked and got benefit but from the point of view of him being able to work and sticking to it for any length of time the risk is too great of changing over from benefit to full time work. If it didn't last it would mean having to start again claiming PIP and ESA with no guarantee of getting either if he's just been working. Voluntary work is a no no as he won't do anything unless he's paid. I think there is something wrong with a benefit system that doesn't look at quality of life for disabled people so that they can be occupied but still have a basic amount of money to live on in case it falls through. Would love to hear your thoughts on this. 
  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,384 Disability Gamechanger

    You are talking about two different benefits, so to deal with the easier one first PIP is not related to being unemployed, so your son would still receive this.

    ESA on the other hand is an out of work benefit. 

    For anyone moving from benefits to full time work I would always suggest getting benefit check to see how much better or worse of you will be in taking a job. Returning or starting work after being on benefits for a long time can be concerning. 

    I know at one point if you took a job and it fell through before a set time you were fast tracked back onto benefits, but really do not know the situation regarding this now.

    My own view is that for there to be equality there must be equality of opportunity and if your son was to start a full time job he would be financially a lot better off and better off in other ways as well. But as you say there are risks if the job does not work out. For this reason I would say the assurance of being fast tracked back to the benefits he is currently on should be an option for a set time. I'm not sure what that set time should be but without much thought I would say between 6 and 12 months. Reason for this is it should take him past any probationary period, plus an opportunity to see how sustainable the job is over reasonable period. For example, travelling to work in summer can be very different to travelling to work mid winter.

    My concern for your son would be if he was  to sustain a job long  term and something went wrong is if they would then use the fact that he had been working to deny him ESA in the support group and put him in WRAG or even JSA initially. Keeping in mind that the support group is for those where it is reasonable to expect they are not capable of work. After all the key features for him getting into the support group are unlikely to change. But as I said he should get a proper assessment, and advice on the current rules. There could be additional benefits your son may be entitled to while in work.

    While I appreciate your son's view point regarding work and pay I would say that volunteering helped me to develop new skills and improve those I had so that when the opportunity came I was able to grasp it and get back to work. But the keyword is 'volunteer' and it is an individual choice. 

    I do get frustrated and annoyed though when people are constantly seen fit to do work experience, and often do a good job but the employers rarely offer to take them on. 

    The other aspect you mentioned is quality of life, and this applies to a range of people and not just disabled. I am a strong believer that we need a  grown up conversation on what as a society are the minimum expectations for a good quality of life, and how much we choose to support that quality of life for those who are out of work, or cannot work. When ever any government talks about capping benefits it should be remembered what they are saying is 'We accept you need £x amount to live on, but we are only going to give you £y' or 'we do not believe you deserve the same quality of life as others, or even what would be seen as a minimum quality of life.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • wildlife
    wildlife Member Posts: 1,308 Pioneering
     @Geoark Thank-you for your reply. I really appreciate you taking the time to do this. I didn't know about the fast track back on to benefits if a job falls through. This sounds OK in theory but I can't see it working in practice with all the problems people are experiencing with PIP. My son managed to get onto ESA and PIP when it was easier to get. That's not to say he isn't genuinely eligible for it but I doubt he would get the level of benefit he has now if he had worked in between. What we really need before MOH gets too old to care for him is a proper diagnosis but getting him to accept he needs this is very difficult. This also should be on a new thread so I'll leave it at that for now. Thanks again..
  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,384 Disability Gamechanger
    You're welcome @wildlife
    My experience was with JSA and before the changes kicked in. As I said though PIP is not subject to being unemployed and he should keep it if he starts work. At least up until he is reassessed and then there is little guarantee if he is working or not.

    I hope you find some solutions for your son.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!


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