Employment and Support Allowance (ESA)
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My son's 16, changed from DLA to PIP, scored zero points

JenniferUJenniferU Member Posts: 124 Courageous
nigsy74 on Twitter says:

My son is 16 changed from DLA to PIP scored zero points so been taken off and i've lost carers. Anyone else had this problem?


  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    edited September 2016
    We've heard from a number of parents going through the same. If you would like some information about appealing the PIP decision or you would like us to help you find a local service which can assist you with a challenge, get in touch with us at the helpline or via the online community.
    I hope that things are resolved soon.

    Best wishes
  • SnusieSnusie Member Posts: 5 Connected
    Hi, my son has just had his PIP refused with zero points in all categories. I will also lose Carer's Allowance, even thugh we have been referred by the local Mental Health Team for a Crer's Assessment and extra help. He has ADHD, Dyspraxia and ASD. He was diagnosed at the age of 5 and attended a Special Educational needs school. He had a Statement of SEN, but now he is 18 we are still trying to get it upgraded to an EHC. The assessment report says he has no problems in any areas and can look after himself adequately. He cuts himself, threatens suicide, has massive meltdowns and cannot look after himself in any way. He could not fill the form in himself because it would have been illegible. He smashes holes in all the walls and doors and was still struggling to do up the buttons on his shirt in their waiting room an hour after we left home for the bus journey. He cannot engage with other people because he is insular and solitary, and his social skills are non-existent. Having been entitled to DLA for years, he is suddenly cured and not in need of any help, and I lose my Carer's Allowance and the extra Housing Benefit allowance as well. I cannot work as I have Aortic Stenosis and will need valve replacement soon, (no date yet, heart scan this month), I'm not on sick benefit myself because there is no point even applying. And I can't get my pension for another 8 years. There is no future for us now, I feel completely defeated, I just have no fight left in me. So no, Debbie Voakes, you are not alone xx
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hi Snusie,

    This is awful, really awful. I'm so sorry that you and your son are going through this. It's not just the loss of the PIP but the devastating consequences when all the passported benefits stop too. 

    I know you have no fight left in you but it's important that you challenge this and I can try and help you find some support with an appeal. Have you been through the mandatory reconsideration process yet? If you have and the decision was unchanged you can proceed to appeal at tribunal. I know that this is difficult but it's the only way you can get justice. You've already got so much on your plate and I know that you're in a bad place right now. We're talking to people every day who have been affected like you and your son.

    We have to keep challenging and we have to keep fighting. There are some wonderful people on this community who have been through really difficult times challenging benefits decisions and I can assure you, you have the backing of us all and we will do whatever we can to support you through this.

    Please let me know where in the country you live so that I can start looking for some local advice agencies to support you with the appeal. If the PIP appeal is successful everything will be backdated including the Carers Allowance and Housing Benefit.

    If you want to talk some more but don't want to do it in public, drop me a line at the helpline either phone 0808 800 3333 or email [email protected] and mark it for me.

  • rosemarierosemarie Member Posts: 1
    Your details about your son is like mine who has aitism. I am told that when he is 16 his DLA  will stop and the PIP questions are not worded in a way that will allow me to explain his needs. I am unsure what we will do if we no.longer have DLA to pay for him to attend music clubs to socialise. He is concerned as he knows he will get depressed if unable to do his music. He himself is concerned that he will revert back to being introvert.
    You are not alone.
  • SnusieSnusie Member Posts: 5 Connected
    DebbieVoakes thank you for your reply, I've only just seen it! I have today sent off the request for Mandatory Reconsideration but I don't hold out any hope as it is their word against mine. I have enclosed his Statement, letters dated August 2016 referring him to the Adult Mental Health Team, an email from the Council Special Needs Team detailing his urgent need for transition to an EHCCP and confirming that he self-harms and threatens suicide, so you never know. rosemarie you are not alone either, it's just awful.
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    edited March 2017
    Hi @Snusie,

    I'm glad you saw my reply and that you've gone ahead with the mandatory reconsideration. Don't lose hope, it sounds like you have provided plenty of evidence to support the appeal. If you need some advice about the EHCP process BethSlade is really good at this and depending on where you live we have Independent Support Services which can assist too.

    @rosemarie how old is your son now? The best thing you can do in preparation for the change to PIP is to learn all about PIP and start thinking about how he meets the PIP criteria. There's no harm either in thinking about what evidence you can use or gather to support the claim when the times comes. If you ever need to talk about this, please feel free to get in touch.

    Thanks to both of you for supporting each other and sharing your experiences.
  • [Deleted User][Deleted User] Posts: 128 Listener

    Hello! gosh this is all a lot to be happening at the same time, awful luck that they all land simultaneously.  

    Lots of MR's don't have the outcome they are looking for, but if your MR is unsuccessful try to stay positive - we know that people have a 6/10 chance of a more positive decision at appeal so just focus on that when things seem bleak.  Appeals are decided  by a panel: a judge, a doctor, and a third independent professional (rather than just a DWP decision maker) so that's something.  People also say to us that they 'feel listened to at last' at tribunal - which is very telling. 

    It might help to look at the PIP descriptors - this is the points scoring criteria that is used to make decisions.  the National Autistic Society has a document I recommend to lots of people because it's so well explained (click that link and it will download - it's a PDF, I hope that's okay for you) ( @rosemarie you may also find this handy)

    Knowing how they are scoring and what they are looking for is half the battle sometimes.   They are a bit different from DLA and some people are struggling to meet the descriptors points threshold - but, I think it wouldn't be fair for me to omit - for some people it's working better than DLA and they are getting help they weren't before.

    It doesn't mean people aren't fighting for it though.    Given what you've already said about your son, for starters I'd be looking at Activity 9 - Engaging with people face to face - which scores 8 points on its own (enough for standard rate daily living) if you "Cannot engage with other people due to such engagement causing either – (i) overwhelming psychological distress to the claimant; or (ii) the claimant to exhibit behaviour which would result in a substantial risk of harm to the claimant or another person." 

    If you go through the whole PIP descriptors document and work out where you think he'd score, this puts you in a good place for deciding what evidence is going to be useful at demonstrating where his needs are.  

    On the EHCP front; you can get an Independent Supporter to help! 
    Independent Support (which I will now refer to as IS) is a government-funded scheme that has been set up to help disabled children and young people (and families of, obviously!) either transition from a statement, or get their first EHCP.   The process of getting an EHCP has several stages and can take 20 weeks.  

    There are also SENDIASS services (SENDIASS is Special Educational Needs and Disabilities Information Advice and Support Service) which are often former Parent Partnerships.  They can be great for local info, but they are also affiliated to local authorities.  

    With IS there is no school or LA bias; their only loyalty is to you.  They are specially trained by the Council for Disabled Children, and are there to help you to understand the process, support you to express views and wishes, contribute to the plan, and challenge things when necessary.  As Debbie mentioned, Scope does this - we have the contract to deliver IS in six areas of the country - but where we aren't the provider, someone else will be.  I cannot stress enough - IS is free, impartial and really useful - so make sure you get hold of yours!
    You can find your provider on the Council for Disabled Children website.  

    I hope this is useful.  Good luck!

  • SnusieSnusie Member Posts: 5 Connected
    BethSlade Wow! Thank you so much for all of this! I've had such an awful day. First I had another Echocardiogram because I have a dodgy heart valve so all this stress is not helping. Then I met up with my older son who is 27 and loves me to bits and recognises that his younger brother has horrendous anger issues and autistic traits (older son's girlfriend is a special needs teacher and recognised it as soon as she met my youngest). And now I am at home listening to younger son shouting abuse at his computer game because he isn't winning. He's 18, it's not normal, he's not normal, and I hate to say that but all this PIP procedure has made it all so much more obvious. Things you don't want to face and try to deal with get dragged up and slapped in your face. He's in denial which makes it so hard. He cannot recognise anything wrong in himself, and PIP assessment doesn't take this aspect into account. But right now my nerves are shattered and if I say anything to him he will smash the place up for starters so I just sit here stressed and terrified about our future with no money. 
    I'm going to go through all the great info and help you have given me - thank you so much. The lady at the council who dealt with his SEN advise me to contact Scope and I'm so glad she did.
  • [Deleted User][Deleted User] Posts: 128 Listener
    @Snusie you are so welcome, it's great to be able to pipe up with the occasional useful idea! Although ...I feel obliged to 'fess up and admit that I regularly yell at my computer when I'm not winning....

    ...but I get what you're saying.  A lack of insight makes this stuff so much harder.  

    The point you mention about PIP dragging up stuff you'd rather not face is definitely a thing.  It's difficult (for someone with insight) to go through that process.  As humans we have this tendency to 'please' - to be helpful, say yes, affirm, to focus on the positives.  But with PIP, to pass this test, you need to fail it, and that's very counter-intuitive.  Add in the fact that you're in a room with a stranger who represents an organisation and a system we've learned not to trust; and you have to lay yourself pretty bare to this stranger and talk about the most personal, intimate parts of your life - that leaves anyone feeling exposed and vulnerable.    As his mum I guess to a degree you're experiencing all this vicariously.  

    As far as I know you are correct - there isn't any part of PIP that takes account of when people don't have insight into their condition and so unfortunately, it falls to the people around them, and the professionals submitting evidence, to make this clear.  

    Interestingly (and something to remember if the time comes) ESA, (which is a benefit for disabled people who can't work due to illness or impairment), has a little-known rule built into it that basically safeguards against people who have no insight into how their condition is affecting them.   Regulation 29.  It says they can still be found to have a limited capability for work (and therefore get ESA) even if they don't score enough points on the test, when there would be a substantial risk of harm if they were found not to have a limited capability for work (read: if they are found fit for work). 

    You sometimes have to fight to get considered under R29, but for those who aren't capable of meeting the commitments of JSA it's invaluable.  

     I'm really sorry you're going through this and I hope things get back to normal for you all soon.  We are here to help and listen when we can :)

     -B x
  • SnusieSnusie Member Posts: 5 Connected
    edited March 2017
    BethSlade Just realised how to hash tag someone doh! I was thinking that I should start recording his behaviour on my phone. It seem so wrong and I'm dead against it, and it would literally destroy him if he knew, but it will be the only way they will believe me. We went to college today to see the young people's mentor lady as he was supposed to start a new course this week but he had refused to go. My daughter took us there but it was so embarrassing, I wish he'd done this in the PIP Assessment, we would have probably won it. He wore a coat and hoody even though it was hot today, was sullen and refused to speak, wouldn't answer any of her questions and made me want to slither out of the door. This is what he's like and why he always went to special school. The lady was really kind and patient and said she would make sure he got his EHCP sorted out as she could see what mental issues he has got. Eventually he agreed to speak up and said he would go if he could go in at 11am, and she said ok! If he does this we will get child tax credit and child benefit, but he has lost the disability component, not to be sniffed at £60 a week. I was at my wits end earlier because next door had the police round and I overheard her talking about him and how she's had enough of his shouting and slamming doors. They didn't come and talk to us but I was frantic, petrified as she's done it before and threatened to have us evicted. 
    Thank you for being such a great support. xx
  • SnusieSnusie Member Posts: 5 Connected
    @DebbieVoakes You might be able to help me with some of the posts I've made above. I've had such an awful couple of days. x
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hi @Snusie

    I'm so sorry to hear what a rough few days you've had. The last thing you need right now is the worry that your neighbours are contacting the Police and the fear of eviction on top of everything else that is going on.
    I'd really like to give you a call this week to talk through all of this and offer a shoulder. Would you be interested in speaking to me over the phone? If so could you send me an email at [email protected] with your contact details and a good time to get in touch and we'll set something up.

    Look forward to hearing from you.

  • sgscopesgscope Member Posts: 2 Listener
    My autistic 21 year old son scored zero points for both pip and wca it has been a very bad experience after a reconsideration the decision remained the same. We lost middle rate DLA and carers allowance but not only that all the extra little benefits like a carer getting free entry and a Railcard etc. Life has become financially very difficult. I just gave up after the reconsideration it was all too depressing, we managed to get him £250 a month universal credit.  
    I would be interested to know the figures of how many autistic people have lost their financial help?
  • wilkowilko Member Posts: 2,396 Disability Gamechanger
    Hello previous posters, as you must know DLA was awarded on yours or child’s illness, disability or diagnosis but once you we they move over to PIP the criteria for assessment changes to your abilities to preform the PIP descriptors safely, repeatedly and in a timely manner . Going Into your assessment hoping expecting to get an award because you had DLA and not taking a self test of the descriptors to see how you would may score and where you need evidence to support your pip claim considering the difference in the assessment criteria is a bit foolish and the award that is given reflects your abilities in relation to the pip descriptors. 
  • sgscopesgscope Member Posts: 2 Listener
    Unfortunately the 'criteria' does not cover a lot of people's ability to cope with everyday life and now we are in no man's land with no access to activities, outings visits that were available and financially more accessible previously. Isolation is a huge factor with most people with even the mildest forms of autism. Some recognition and even just a to be able to get some help in every day life i.e. being able to access concessions or take a carer in with them, which helps enormously with getting out and about.

  • poppy123456poppy123456 Member Posts: 22,910 Disability Gamechanger

    As PIP and the work capability assessment are not about a diagnosis, then you really can't compare 2 people because all conditions affect people differently.

    The WCA is about the work you can do and not the work you can't do. If he was found fit for work for the WCA then you won't be able to start the LCW process again with the same conditions he previously claimed for unless it's a significantly worsening of condition. He can of course start the process again with a different condition.

    As only 18% of MR decisions change then had you taken it to Tribunal and your son appeared in person then this increases to 71% success rate.

    Having some understanding of what PIP is about, what the descriptors mean would have helped. Previously claiming DLA doesn't mean you're automatically entitled to PIP.

    My advice it, regardless of how long and tiring the process is, taking it all the way to Tribunal is the only way.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
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