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Child DLA to zero points PIP

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est1980
est1980 Community member Posts: 18 Listener
Hi, hope every one is well.
I have recently had to switch my son from DLA to pip. He got high rate care low mobility, for 10 years, now his pip has come back as zero points. I have put in for the mandatory reconsideration but am pretty sure it won't change anything, so looking for some advise so I can prepare for my appeal. Also, as a result of his DLA ending, I will no longer ger carers allowance, and am worried I may have to switch to universal credit as I qualified for income support as a carer. However, I am on receipt of PIP myself and receive the sever disability element with it. I'm so confused !🤦🏽‍♀️ Please help?




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  • est1980
    est1980 Community member Posts: 18 Listener
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    Hi, thanks for your quick reply. My son's diagnosis are Autism spectrum disorder, AdHD, dyspraxia, anxiety, generalised hypermobility syndrome. As a bit of background, He was reawarded DLA at high care low mobility 2 days before his 16th birthday, which they then promptly took away as he turned 16. 

    Mostly he comes under 'needs supervision,prompting, encouragement' for the daily living activities, and troubles engaging with others and planning and following a route. 
  • Tiredmum42
    Tiredmum42 Community member Posts: 29 Connected
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    Did you see a copy of the report? What evidence did you send? Seems extreme to go from DLA to zero PIP with those conditions 
  • est1980
    est1980 Community member Posts: 18 Listener
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    That's what I thought, I've only seen the remarks on the decision letter, can I ask for the actual report? Because he had just been awarded his DLA literally 2 days before, there wasn't any other evidence I had to send that they didn't already have,and they asked me if I wanted them to use the same evidence and I said yes. 

     For the purposes of Autism and ADHD it is difficulty to provided medical evidence on how their condition affects them, other than a doctor's letter of diagnosis,there isn't much else they can provide. The doctors can only say what his has, I'm the only one who can say how it affects him, but he has been awarded high rate care and low rate mobility DLA 3 times, with the exact same evidence. It's almost as if at age 15 and 364 days they agreed he had problems with certain things,but the next day he had no issues whatsoever, not 1 single point was awarded.
    I did note that in the decision letter there was no mention of his diagnosis of ADHD, which seemed odd,especially as it's the main factor in his issues. They seemed to put a lot if weight on the fact that he went to mainstream school and did his exams-i never claimed he was stupid,and also inferred he doesn't have communication difficulties or trouble engaging with others because he speaks with his family every day-i think that would go against his diagnosis of asd altogether! The whole thing basically said they agree  he has autism and anxiety but it doesn't affect him in any way. So if I could see the actual report that was made that might be an interesting read. How would I go about getting that?
  • MarkM88
    MarkM88 Community member Posts: 3,127 Connected
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    Did you ensure that you provided at least 2 real world examples of what happened the last time each activity was attempted in the descriptors that apply? 

    When I say examples, I also mean detailed examples of what happened and the outcome, not just stating why each activity can’t be done. 

    Medical evidence is not needed, many people claim successfully with minimum actual evidence from anyone else. 
  • poppy123456
    poppy123456 Community member Posts: 57,105 Disability Gamechanger
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    The report is not needed to request the MR. All is does is cause a distraction of what's really needed, concentrating on the report will not get a PIP award. PIP and DLA are different benefits with different criteria. Being awarded one, doesn't mean they qualify for another.

    PIP is not about a diagnosis, it's how those conditions affect you against the 12 activities. Having said that, some health conditions point to decriptors where points ought to have been scored. I would expect someone with ASD to at least score points for communicating verbally, engaging with others, dressing/undressing and potentially preparing food. Following and planning a journey for mobility.

    What should be done for the MR is to clearly state where and why you think points should have been scored then add a couple of recent real world examples of what happened the last time that activity was atempted. Including detailed information such as where you were, what exactly happened, did anyone see it and what the consequences were. When you filled out the form did you do this?

    One of my daughters conditions is ASD and she scored points in all the above, including washing/bathing and budgeting.


    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.
  • est1980
    est1980 Community member Posts: 18 Listener
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    Hi,thanks for your response, yes I did all of that, mostly it's a case of saying what would happen, rather than what did happen, because for example, he is never left unattended In the kitchen with the gas fire on. But you are correct in that he should have scored point on the descriptors you mentioned. Yes pip and DLA are different, buy actually, with regards to things like washing and bathing, communicating with others etc is pretty much covered the same way in both. The biggest difference I think is with regards to nightime 
    Care needed, and the point it was measured against a child of the same age. But needing supervision whilst preparing food,needing much prompting and reminding to get dressed/ washed, there's only so many ways you can put that. Im very well versed in the way to fill out the forms, I often help other people with theirs and so I am totally I'm shock that he didn't even score a single point.

    I've already put in the MR, but I really just repeated what I put in the form and said in the telephone consultation because there was really nothing else I could say.

    The only reason I mentioned his ADHD not being mentioned, is because the decision maker mentioned all his other diagnosis.  How do you take the view that someone will get washed and dress appropriately WITHOUT needing assistance/encouragement /reminding? Without considering the fact that person has ADHD and asd What evidence can I show to 'prove' that. This is where I'm confused,as I have no clue how they came to this descsion,or how I will go about an appeal?
  • poppy123456
    poppy123456 Community member Posts: 57,105 Disability Gamechanger
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    Rather than tell them what “would” happen, you need to tell them what “did” happen. They are 2 completely different things. Did you say things like he can’t do X because of Y? This is an assertion, not anecdotal evidence. 
    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.
  • est1980
    est1980 Community member Posts: 18 Listener
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    est1980 said:
    mostly it's a case of saying what would happen, rather than what did happen, because for example, he is never left unattended In the kitchen with the gas fire on. descriptors you mentioned. Yes pip and DLA are different… The biggest difference I think is with regards to nightime 
    The problem you have is with providing real world examples. If you don’t leave him unattended because you worry then you leave it open to DWP to infer that you’re a worrier and that the risk is actually minimal. What you need to describe are the specific incidents which led you to the point you could not leave him unattended.

    There is no concept of night time in PIP so they don’t ask. You have to read each question as talking about day and night and if the needs differ between them you need to explain in what way; why and again give detailed real world examples.
    The only reason I mentioned his ADHD not being mentioned, is because the decision maker mentioned all his other diagnosis.  How do you take the view that someone will get washed and dress appropriately WITHOUT needing assistance/encouragement /reminding? Without considering the fact that person has ADHD and asd What evidence can I show to 'prove' that. This is where I'm confused,as I have no clue how they came to this descsion,or how I will go about an appeal?
    You take the view because PIP is not about a diagnosis. It’s about the consequences and everyone is different. Two people with ADHD will have entirely different experiences of it. How would the DWP know which end of that spectrum your son lies? They can’t go “oh ADHD so therefore…”. You have to tell them. Again, real world detailed examples. Should be plenty of recent ones around dressing and undressing. 

  • est1980
    est1980 Community member Posts: 18 Listener
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    No, I don't take the view that because he has ADHD he can or can't do xyz, but the diagnoses must be taken into account.  what I meant was, in all the dms comments he specifically referred to all his individual diagnoses  when making particular points, except his ADHD. My real world examples are things like  what I have to do/say /prevent in any given situation.  So for example, he left a tea towel so close to the cooker that it's about to catch fire, (which is one of the examples i used) obviously I will tell him to move it, . The reason he does this is his lack of focus,poor organisational skills and forgetfulness, which are symptoms of his ADHD, and nothing to do with his hypermobility for example.. If the DM does not refer to the diagnosis of ADHD, nothing I've said makes sense. There is no other reason for these behviours...so it cannot simply be ignored. I don't need to wait for it to actually catch fire to know that it would- so I can confidently say what 'would' happen, as the only reason it didn't is because I interviened. That's not being a 'worrier'and I don't see how that could be construed as such. And I would suggest that an incedent like that is reason enough to say going forward,  he always needs  supervision in the kitchen. 

    Other things are a bit more difficult because, for example, he won't get dressed unless I repeatedly prompt/ remind, then the real world example is, if I don't remind/prompt,he doesn't do it. -these no other way to say that, there's also nothing other than my word to support it.
    (I know there is no concept of day and night in pip, that's what I said regarding the main differences between pip and DLA, I think you might have mis read my point in that regard.)

    A person with ASD has by definition troubles with communication/ engaging with others, so in the section about those activities, I would not expect the DM to refer to his hypermobility, or his dispraxia-as these problems are a direct result of his asd.
    So yes, I understand that the diagnosis itself is not a reason for an award, but it has to be considered in relation to the difficulties I am describing. Which is why I say, i found it odd that ADHD was not referred to one single time in the entire report. 
    The form was filled in well, this is  nothing but a very poor decision, that essentially inferred I lied.
    Even so, I am not expecting any change in award for the MR because it's extremely rare. So I'm looking forward and trying to get some info with regards to the appeal process I will undoubtedly have to file. I have filled in or helped to fill in about 20 claim forms over the past 8 or so years, this is the first time I've ever had a refusal, so the appeal process is all new to me. 
  • est1980
    est1980 Community member Posts: 18 Listener
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    Hi, I appreciate what you're saying, but as  I can't retype my entire claim form on here, so have just simplified things. Asd is diagnosed on a triad of traits-one of which is difficulty in communication....that's not an assumption it's fact, but not one I relied on in my form, but it was just an example to a point I was making. im not actually convinced that it was taken into consideration or may have been missed altogether, as there was also a diagnosis referred to more than once that he doesn't have, which was concerning. A tea towel next to an open flame will catch fire-i don't see how that's hard to understand?? (Again maybe my simplification gave to wrong impression of when I actually wrote) Who would watch that happen ? at what point is it reasonable to step in? When it catches fire?  When he burns himself? When the fire spreads to the hallway?  I could have said at that point that I had to put the fire out or the house would have burned down, you could still say 'how did you know the house would burn down?  You could go on in circles like that all day. But anyway, my claim form Is already  done, plus a 2 hour phone consultation which covered in excruciating detail the reasons certain help is required. To the point where I was getting questions like

    So if there was a totally empty Town with no noise and no people and he had to get on an empty bus, with  detailed written instructions on where to go when he got off the bus, such as get off at the first bus stop walk to the the end of the road, turn left then sit on a bench, could he do it un aided? My inner voice said he wouldn't go anywhere because there was no-one to drive the bus- I'm assuming this was to accertain his ability to plan and follow a route- I mean I never stated he couldn't read- so is it classed as planning a route if someone writes you instructions? Is it classed as unaided if someone else told you how to follow the route?  (And inner voice again, has the end of the world arrived and if so why is he the only human left on earth) I kid you not, this actually happened- the point is, it was extremely detailed as to the how's, why's, when's and where's, and the MR has been submitted. I just want to be prepared for the appeal.

    So when you say 'concentrate on where your evidenced is weak'  what do you mean exactly?  Do I go back through my form with a fine toothed comb and re  write or expand on what I put on the original form and present that at tribunal? What actually happens at tribunal? Are you supposed to present new evidence? Are you directly asked questions?I really have no clue
  • est1980
    est1980 Community member Posts: 18 Listener
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    MarkM88 said:
    Did you ensure that you provided at least 2 real world examples of what happened the last time each activity was attempted in the descriptors that apply? 

    When I say examples, I also mean detailed examples of what happened and the outcome, not just stating why each activity can’t be done. 

    Medical evidence is not needed, many people claim successfully with minimum actual evidence from anyone else. 
    est1980 said:
    Hi, hope every one is well.
    I have recently had to switch my son from DLA to pip. He got high rate care low mobility, for 10 years, now his pip has come back as zero points. I have put in for the mandatory reconsideration but am pretty sure it won't change anything, so looking for some advise so I can prepare for my appeal. Also, as a result of his DLA ending, I will no longer ger carers allowance, and am worried I may have to switch to universal credit as I qualified for income support as a carer. However, I am on receipt of PIP myself and receive the sever disability element with it. I'm so confused !🤦🏽‍♀️ Please help?

    est1980 said:
    Hi, I appreciate what you're saying, but as  I can't retype my entire claim form on here, so have just simplified things. Asd is diagnosed on a triad of traits-one of which is difficulty in communication....that's not an assumption it's fact, but not one I relied on in my form, but it was just an example to a point I was making. im not actually convinced that it was taken into consideration or may have been missed altogether, as there was also a diagnosis referred to more than once that he doesn't have, which was concerning. A tea towel next to an open flame will catch fire-i don't see how that's hard to understand?? (Again maybe my simplification gave to wrong impression of when I actually wrote) Who would watch that happen ? at what point is it reasonable to step in? When it catches fire?  When he burns himself? When the fire spreads to the hallway?  I could have said at that point that I had to put the fire out or the house would have burned down, you could still say 'how did you know the house would burn down?  You could go on in circles like that all day. But anyway, my claim form Is already  done, plus a 2 hour phone consultation which covered in excruciating detail the reasons certain help is required. To the point where I was getting questions like

    So if there was a totally empty Town with no noise and no people and he had to get on an empty bus, with  detailed written instructions on where to go when he got off the bus, such as get off at the first bus stop walk to the the end of the road, turn left then sit on a bench, could he do it un aided? My inner voice said he wouldn't go anywhere because there was no-one to drive the bus- I'm assuming this was to accertain his ability to plan and follow a route- I mean I never stated he couldn't read- so is it classed as planning a route if someone writes you instructions? Is it classed as unaided if someone else told you how to follow the route?  (And inner voice again, has the end of the world arrived and if so why is he the only human left on earth) I kid you not, this actually happened- the point is, it was extremely detailed as to the how's, why's, when's and where's, and the MR has been submitted. I just want to be prepared for the appeal.

    So when you say 'concentrate on where your evidenced is weak'  what do you mean exactly?  Do I go back through my form with a fine toothed comb and re  write or expand on what I put on the original form and present that at tribunal? What actually happens at tribunal? Are you supposed to present new evidence? Are you directly asked questions?I really have no clue




  • est1980
    est1980 Community member Posts: 18 Listener
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    UPDATE! Appeal won without even going to tribunal, 0points to 26 points, enhanced care, enhanced mobility. No extra information or evidence sent in. Just a phone call from Dwp changing their (appealing) descision and obviously agreeing there was enough information in my form and enough evidence given on the telephone assessment. Thanks all
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,561 Disability Gamechanger
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    That's great to hear @est1980 thanks for sharing your update with the community :)
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  • Ikonik
    Ikonik Community member Posts: 61 Connected
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    est1980 said:
    UPDATE! Appeal won without even going to tribunal, 0points to 26 points, enhanced care, enhanced mobility. No extra information or evidence sent in. Just a phone call from Dwp changing their (appealing) descision and obviously agreeing there was enough information in my form and enough evidence given on the telephone assessment. Thanks all
    This shows how truly awful our benefit system is. Their disability doesn't change overnight at age 16. You should be compensated for the stress this has caused. How incompetent are DWP! 
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