Autism with ADHD PIP nightmare — Scope | Disability forum
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Autism with ADHD PIP nightmare

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PBB
PBB Community member Posts: 5 Listener
I’ve had a nightmare with the whole process of claiming personal independence payment(PIP)and feel I haven’t been able to represent myself due to the lack of DWP understanding of my ASD and ADHD,i had a universal credit capability to work assessment a month before my PIP assessment and it was used in the tribunal against me.I believe that during those assessments I was in no mental state to answer the assessors questions as I believe I was in burnout and suffered shutdowns in the two assessments mentioned and the 2 hour long tribunal I’ve just been traumatised with,there’s mention that I have no issues because I gained A levels 33 years ago,I drive a car and can walk my dogs around my estate,I also feel I didn’t have the professional help I needed from citizens advice including the representative I was given,I just don’t know what to do,the application for PIP started 24th October 2022 and I had the tribunal on the 31st January 2024,where I felt like I was on trial and interagated as if I was a suspect in a crime with know consideration for my disabilities.I 
just want advice on how to have legal representation to set aside the tribunals decision please,I really feel that the tribunal was not fairly carried out,I was told that we only discuss matters relating to the time of my PIP assessment yet the judge interagates me about a DWP work capability assessment carried out a month before aswell as using what I said to my GP in a consultation again before the PIP assessment I felt she was on a mission to try and discredit me.Now I suffer with ASD,ADHD as well as chronic depression,anxiety,as well as poor memory recollection which deteriorates when under extreme stress and anxiety,I feel the judge,GP and the disability representative should have gave me prior notice if they felt that my credibility was in question so I could look back with the help of my wife to try and remember back almost 2 years.Instead I was immediately put under an even further increased state and I physically and mentally shut down,even if I was asked if I was ok,I was not in a position to decide that and would have answered yes as my default,I’m appalled actually and I’m still ruminating over it now.Any feedback particularly from a legal standpoint would be much appreciated,thankyou.

Comments

  • bookrabbit
    bookrabbit Community member Posts: 196 Pioneering
    edited March 2
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    I am so sorry to hear this. I also am on the spectrum and have enormous difficulties with the entire process. So much so that I have done without benefits rather than face being disbelieved. I first got DLA in 2013 after my Asperger's diagnosis. I couldn't do it myself and my mother did it for me. But by the time it came to swap to PIP she had had a stroke and couldn't do it so I let it lapse rather than face the assessment. In 2022 I tried to get PIP again after not having left the house in 4 years but I couldn't even get hold of a paper form when the online system wouldn't accept my basic details. They actually went to assessment without a completed form as it was approaching the 6 month time limit!! Then I got so stressed during the assessment that the assessor wanted to call an ambulance and yet the decision said I don't suffer unbearable psychological distress!! I scored 6 points for daily living and nothing for not being able to leave the house because I didn't have any treatment for sensory difficulties. I don't think there are any treatments!! And how was I supposed to access them if there were. I was so traumatised by the process that I couldn't face appealing it.
    In October this year with the prospect of homelessness hanging over me I was offered help from a friend who has an autistic daughter to try again. This time I was awarded standard mobility but again got 6 points on daily living. Only a different 6 points!! The two lots of points combined would have given me enhanced!! My friend fortunately submitted the MR herself on my behalf or I would have let it go again. She was scandalised. They wouldn't let her help me answer the questions even though I was so stressed again that they threatened not to continue. Then I shut down instead of stopping the same way I did the first time because I just wanted it over with and not hanging over me anymore. They should have let her answer when she saw I wasn't able to. The trick questions were bad too. The assessor asked how much I sleep during the day and used that to dismiss my fatigue when fatigue and sleep are two different things. I have to lie down after short bursts of activity because I am too exhausted to move but I can't sleep because I am too restless and anxious.
    The system really is stacked against us with the assessment in its current form.
    I then had a WCA last week with a much more knowledgeable person doing the assessment who recognised my fatigue as the problem it is and my difficulties gaining evidence when I can't access medical care because of the difficulties my severe social anxiety causes and seemed to be saying that I would be awarded LCWRA as she said there wasn't any point going into further details about how my autism affects me because I already scored the maximum on mobility. Of course she wasn't the decision maker so that could still be a failure. But it went much better because she allowed my friend to answer when I struggled.

    I think the key is to find someone else to support you during the assessment. Alone we don't stand much chance of being taken seriously. Of course that isn't easy. I knew my friend at the time of the previous attempt but couldn't bring myself to ask her for help as I felt I would be a burden to her. I still feel dreadful about how many demands I am making on her but having been made homeless I haven't had any choice about asking for help. But I should have done it sooner.
  • poppy123456
    poppy123456 Community member Posts: 54,146 Disability Gamechanger
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    You can’t appeal a Tribunal decision just because you disagree with it. First you need to request the Statement of Reasons and Record of Proceedings and you have 1 month from the date of the decision to request those.

    Once you receive them you need to find someone to take a look to see if they can find the error in law. If they can’t then you won’t be able to proceed any further with that claim.

    If the error is found then it can be an extremely long process too. 

    You can also start a new claim but doing so using the same evidence you previously used could see another refusal.

    PIP isn’t awarded based on any diagnosis and it’s your responsibility to prove you qualify by telling them exactly how those conditions affect you.

    I note that you had help from Citizens Advice, sadly I have heard that they do often give poor advice. 

    This link will help you find a different advice agency near you. https://advicelocal.uk/welfare-benefits
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Rosie_Scope
    Rosie_Scope Posts: 2,213 Scope online community team
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    Hi @PBB, welcome to the community. Sorry all this has happened to you at your PIP tribunal, it sounds really distressing. I'm afraid I can't offer any legal standpoint myself, but I hope our members can continue to share their advice and experiences and I just wanted to say hello and offer some support.

    The link to advice local that poppy posted above might be a good start, there's also Citizens Advice who might be able to point you in the right direction for some legal support. I hope the community offers some useful suggestions and things start getting easier for you soon  :)
    Rosie (she/her)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
    Want to give us feedback? Complete our feedback form now.
  • poppy123456
    poppy123456 Community member Posts: 54,146 Disability Gamechanger
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    Rosie_Scope said:
    there's also Citizens Advice who might be able to point you in the right direction for some legal support. I hope the community offers some useful suggestions and things start getting easier for you soon  :)
    PBB has already said that Citizens Advice helped them but they didn’t feel it helped at all. This is one reason why I don’t usually advise people to use them. 
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Rosie_Scope
    Rosie_Scope Posts: 2,213 Scope online community team
    edited March 2
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    Thanks Poppy, I'd missed that part of your post. I'll bear that in mind for the future :) 
    Rosie (she/her)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
    Want to give us feedback? Complete our feedback form now.
  • PBB
    PBB Community member Posts: 5 Listener
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    I am so sorry to hear this. I also am on the spectrum and have enormous difficulties with the entire process. So much so that I have done without benefits rather than face being disbelieved. I first got DLA in 2013 after my Asperger's diagnosis. I couldn't do it myself and my mother did it for me. But by the time it came to swap to PIP she had had a stroke and couldn't do it so I let it lapse rather than face the assessment. In 2022 I tried to get PIP again after not having left the house in 4 years but I couldn't even get hold of a paper form when the online system wouldn't accept my basic details. They actually went to assessment without a completed form as it was approaching the 6 month time limit!! Then I got so stressed during the assessment that the assessor wanted to call an ambulance and yet the decision said I don't suffer unbearable psychological distress!! I scored 6 points for daily living and nothing for not being able to leave the house because I didn't have any treatment for sensory difficulties. I don't think there are any treatments!! And how was I supposed to access them if there were. I was so traumatised by the process that I couldn't face appealing it.
    In October this year with the prospect of homelessness hanging over me I was offered help from a friend who has an autistic daughter to try again. This time I was awarded standard mobility but again got 6 points on daily living. Only a different 6 points!! The two lots of points combined would have given me enhanced!! My friend fortunately submitted the MR herself on my behalf or I would have let it go again. She was scandalised. They wouldn't let her help me answer the questions even though I was so stressed again that they threatened not to continue. Then I shut down instead of stopping the same way I did the first time because I just wanted it over with and not hanging over me anymore. They should have let her answer when she saw I wasn't able to. The trick questions were bad too. The assessor asked how much I sleep during the day and used that to dismiss my fatigue when fatigue and sleep are two different things. I have to lie down after short bursts of activity because I am too exhausted to move but I can't sleep because I am too restless and anxious.
    The system really is stacked against us with the assessment in its current form.
    I then had a WCA last week with a much more knowledgeable person doing the assessment who recognised my fatigue as the problem it is and my difficulties gaining evidence when I can't access medical care because of the difficulties my severe social anxiety causes and seemed to be saying that I would be awarded LCWRA as she said there wasn't any point going into further details about how my autism affects me because I already scored the maximum on mobility. Of course she wasn't the decision maker so that could still be a failure. But it went much better because she allowed my friend to answer when I struggled.

    I think the key is to find someone else to support you during the assessment. Alone we don't stand much chance of being taken seriously. Of course that isn't easy. I knew my friend at the time of the previous attempt but couldn't bring myself to ask her for help as I felt I would be a burden to her. I still feel dreadful about how many demands I am making on her but having been made homeless I haven't had any choice about asking for help. But I should have done it sooner.
    Thankyou for your advice and sharing your experience,I’m still waiting for the statement of reasons and record of proceedings from the first tribunal and then hopefully I can find someone legal minded to review it and take it from there,I’ll keep the post updated so it can hopefully help other people.

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