PIP, DLA and AA
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Autistic son turned down PIP

jenny1974jenny1974 Member Posts: 9 Listener
edited November 2018 in PIP, DLA and AA
Hello all I am so angry and confused my 23 year old Autistic son who also has ADHD, ODD has just been turned down PIP with 0 points. He has had DLA since the age of 7, he has always had extreme behaviours from the age of 2 1/2 began getting worse when he was in nursery when he cracked another child's head ope, cut a girls pony tail off, stabbed another with a pencil I could go on, things got worse when he went up, he even began self harming, teacher had to evacuate class rooms to keep other children safe, we had to take him to school 5 minutes after other children had already got settled within 20 minutes had a phone call to pick him up as he was badly aggressive it used to take 5 of use to restrain him to get him to the car this went on for about 3 years of him only spending 20 minutes at school even with a 1 to 1 teacher by the time he was 10 I pulled him out of school to fight to get him into a special school which took a further 2 years.once at a autistic school he changed become calmer with less outbursts he even passed all his exams when he was tested for autism at the age of 7 he had a visual IQ of 140 very clever, then he turned 16 time to leave, we inrolled him into a collage and he had 6 weeks of travel training before starting he managed to do about 3 months when I received a call from his teacher saying she advised me to get my son to leave the collage before they kick him out as he would not be able to go to another collage if kicked out. Since the age of 16 1/2 my son stays in his room comes down for food and to use the bathroom and that's it he never leaves the house he said it's to scary and makes him feel nervous. Yet they have stopped all his money expecting him to leave the house and sign on or get a job what can I do. 

Replies

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    edited November 2018
    Hello Jenny @jenny1974 and a warm welcome to the community.

    Not much help to you I know, but I cannot express how sad your post makes me feel. I am amazed that you have fought so hard and come so far, but then we parents are not given much of a choice, are we?

    My own related experience is that I used to work as a Learning Support Assistant in a school's ASD unit, so I have handled troubled kids and met many struggling parents. I believed my school's provision to be little short of awful, and that too often appears to be the case. There is little I personally can do to help, though if you'd like to chat I would be very glad to hear from you. Aside from that I would recommend that you have a look at our Ask An ASD Advisor thread, and look at some of the discussions there (which should bring you into contact with others in similar or related situations). I am tagging @Jack_W into this post as I think he's the person who might most be able to assist you.

    Please don't hesitate to be in touch or to ask us anything. We will look for the answers and we are here for you. You are among friends now.

    Warmest best wishes to you and to your son,

    @JennysDad
      

  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Hi jenny as a mother of three young adults on the spectrum I understand how difficult it can be did you ask for a MR  you have 28 days to do so and go through the descriptors and see which ones your son fits I've learned a lot from this site pip unlike dla is about how they function rather than diagnosis. 
  • jenny1974jenny1974 Member Posts: 9 Listener
    Hello and thank you for replying yes most of the questions they ask are physical I said to the interviewer ther is nothing physically wrong with him, he just doesn't like people he doesn't even talk much to me or his dad, and will not leave the house he will ask for something from the shop but would rather go without than even come with me and noise is a big thing if he cannot control it, and what is MR .
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Mandatory reconcideration to look. At his claim again but you need to give reasons like for instance can he cook a meal. On his own if not then why not. Give a couple of examples of why he can't do certain things unaided go through each question and if they apply to him then give the examples of why he can't do them. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    PIP isn't just about a physical condition. People that don't have a physical condition claim it too. My daughter claim Enhanced for both and doesn't have any physical problems at all.

    You need to look at the PIP descriptors again to try to get some understanding of what it's all about because this will help.

    Does he need prompting to dress? Does he need prompting to wash/bathe? If so then why does he need prompting?

    Can he prepare and cook a simple meal from fresh ingredients? If not then why can't he do this? Does he need assistance in the kitchen while he's doing this? Is he safe around a hob or the hot pans etc? If he isn't then you need to explain why he's not safe in the kitchen and what would happen if he did attempt to do this alone.

    All this needs to be done for the MR request and send evidence to prove how his conditions affect him.

    I would do a search of your area to see what's available for advice. Either welfare rights or law centre and they will help and support you through the MR and Tribunal, if it gets that far and most do.
    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.
  • TardisTardis Member Posts: 214 Pioneering
    Another thing to bear in mind is the language you use to describe his issues.  Doesn't like, will not, etc could be taken to imply that he is making a choice not to do things.  Can not (because XYZ..) is much clearer.
  • jenny1974jenny1974 Member Posts: 9 Listener
    I think that's were I went wrong and he doesn't explain how he feels so it makes it difficult I think I might make him a appointment with a phycolagist again will that help to get there insight.
  • YadnadYadnad Posts: 2,856 Member
    jenny1974 said:
    I think that's were I went wrong and he doesn't explain how he feels so it makes it difficult I think I might make him a appointment with a phycolagist again will that help to get there insight.
    Of course you can if you think that would benefit him.

    But don't expect the psychologist to understand how PIP is awarded. It's not a question of what he can't do or won't do it's all about the impact on his life caused by the condition and that the impact has to match enough descriptors so as to score enough points.

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    PIP is all about satisfying the descriptors to score the points for an award. You can have a disability but still not fit the descriptors, therefore no points are awarded. Not everyone will fit the descriptors unfortunately.
    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.
  • YadnadYadnad Posts: 2,856 Member
    PIP is all about satisfying the descriptors to score the points for an award. You can have a disability but still not fit the descriptors, therefore no points are awarded. Not everyone will fit the descriptors unfortunately.
    In fact many disabled people, some seriously will not be able to fit enough descriptors to get an award. Yet someone with the likes of arthritis and anxiety are able to get the enhanced rates for both elements.

    Not fair in my opinion but there we have it.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I wasn't the one that made the criteria for PIP, i was purely stating what the PIP descriptors were about.
    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.
  • jenny1974jenny1974 Member Posts: 9 Listener
    edited November 2018
    It's just so difficult to put into words how my son feels about things as you only get short blunt answers like I asked why don't you like leaving the house he will just say it scary or frightening, or I'll say I'll buy u a new pair of trainers he comes back and says don't need them, he has had his trainers since he was 14, I really wish he would express how things make him feel it would f made this PIP interview easier.
  • TardisTardis Member Posts: 214 Pioneering
    You don't need to interpret your son's feelings.  Just describe what you actually see and hear happening when you try to get him to do the various PIP activities.  Not being able to express how he feels is part of his disability.  If he could do it easily you probably wouldn't be applying for PIP for him!
  • willswills Member Posts: 1 Listener
    Don't give up whatever you do. We have fought this battle for the last 17 months for our son who is 27 years old. He was initially awarded DLA when he was 14. He has Autism, extreme OCD, Anxiety etc. Initially he was awarded 0 points. However, when he was assessed for ESA he breezed through the whole process. He has been treated, since 14, by Psychologists, Psychiatrists which he still sees along with many other professionals. We were offered 8 points after initial appeal but continued to fight and last week we won our sons appeal and he was awarded 20 points. Many times we felt like giving up but didn't and it was the principal of it all in the end that kept us going. So just keep going and get some advice. Good luck x 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    You keep talking about him not wanting to go out. What about the 10 daily living descriptors?
    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.
  • jenny1974jenny1974 Member Posts: 9 Listener
    He just need me to remind him to do things like change his cloths, bathing, brush his teeth when he looks like god I have to make him shave and I cut his hair as want go to a hair dressers, he cooked cheese on toast once and we had a little grill fire he got distracted. Some foods he can't touch he doesn't like the feel of it. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Based on that at the moment, he won't score the points need for a daily living award. What about the other daily living descriptors? Have you had a look at all of them? I really think you do need to get some help, if you don't then he may struggle with an award. You need to have some understanding of what it's all about and it seems like you don't understand it.

    Please contact welfare rights or your law centre for help. It's extremely difficult to advise on an internet forum because no one knows how his conditions affect him.
    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.
  • jenny1974jenny1974 Member Posts: 9 Listener
    Thank you I don't understand it with DLA it was simple this isn't 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    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.
  • jenny1974jenny1974 Member Posts: 9 Listener
  • Jack_WJack_W Member Posts: 19 Courageous
    Hi @jenny1974,

    Sorry I'm a bit late in responding here. There has already been some good advice by some of the other community members, including mandatory reconsideration, which would be the best option to take in order to avoid restarting the application again. Perhaps you might want to keep a diary record of your son's activities and what he struggles with most in order to gather evidence, which will be needed to have a greater chance of success to overturn the DWP assessor's decision.

    You might find some of this information here quite helpful:
    Take care,
    Jack
  • jenny1974jenny1974 Member Posts: 9 Listener
    Thank you that's what I will be doing 
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