dirty hands

Personal Independence Payment Reasons for Saying No to Asperger’s Syndrome

Personal Independence Payment the ironic process where people with Asperger’s Syndrome need to be able to communicate their difficulties with communication. I am sure this new disability benefit has affected so many people in so many ways. If you have been following the journey so far then you will know that my son with Asperger’s Syndrome was asked to switch from DLA to PIP; that he has already had the PIP Face-to-Face Consultation and been told that he does not qualify for Personal Independence Payment.  I have since sent in a request for a mandatory reconsideration and had asked for the request copies of the evidence that they used to make the decision. I have now received that evidence and have a further 2 weeks to add anything else or I can ask them to just go ahead and make a decision. This is what I have gleaned from the evidence that they made their decision on.

To represent the Personal Independence Interview around computer with two people sitting opposite one other
Photo by Štefan Štefančík on Unsplash

The Decision for not Granting Personal Independence Payment for my son with Asperger’s Syndrome

The first thing I would say is not to wait until you receive the decision but to ask for the notes straight away (I was advised over this but naively felt confident that he would be awarded standard rate). Secondly personally I feel that I am fighting a losing battle as the assessors clearly have no knowledge of Autistic Spectrum Condition and are basically applying that most young people don’t eat/wash/deal with finances etc – and I am just a parent that is worried and will not let go!

How to turn up to a personal independence interview ragged clothes and a walking stick
Photo by Chelsea Aaron on Unsplash

The physical seems to be a tick box too – he can physically talk, walk, wash, cook etc – anything mentally seems to be ignored: This is because it means it is deemed not significant enough: Examples are that he is not taking any medication to help with his mental health or anxiety; and does not have a guide person with him 24:7 helping him with social, communication and interaction – and never has.

The decision is made on their own assumptions: In fact the report basically says that because there is no-one helping him it suggests that the majority of the time he is indeed having no problems with social and communication. The fact that the food is not fresh/nutritious is “not considered within the scope of this activity.” Basically that cognitively he is capable of cooking. Basically they have decided on their answer and then just copied and pasted this for each section – with some having a little more twist towards the question but not all.

Evidence for Personal Independence Payment

Basically it boils down to proving it by the looks of things. No matter what it says about whether you need help but don’t get it or not that’s rubbish. My son was not awarded it based on not having hard evidence: The only evidence they used was from the PIP Questionnaire.  Unlike Disability Living Allowance they did not attempt to contact anyone to confirm my son’s difficulties from a professional point. This whole thing has adjusted my view on whether people should fight and now my answer is always yes – as you never know what is around the corner. Unsure about needing a diagnosis? Fight for one anyway. Do not think they can get an EHCP (Education Health Plan)? Fight for one anyway. NEVER let it go, because whilst you/your child may be coping right now it will be used as evidence against you later on if you didn’t try to get it!

man and woman talking over a computer screen
Photo by rawpixel.com on Unsplash

As he was unable to communicate his daily struggles and how often affects him, it went against him – but not enough to suggest that he has difficulty talking to others and expressing himself! Anything I added as his appointee was belittled and I was only referred to as his “mum.” We were not asked about the variability, triggers or treatment during the face to face consultant but they were all put as none – obviously when asked at the start you need to make these clear!

Tips for a Face to Face Consultancy Meeting for Personal Independence Plan for Autistic Spectrum Disorder

  • Make it clear not only what the symptoms are of the condition but what is the variability, the triggers and any treatments.
    • Make sure this is communicated well, whilst not being seen to be able to communicate.
  • Do not have your mother as an appointee as she will just be referred to as Mum – and we know how fussy they are!
  • Take tablets.
  • Don’t follow instructions to where you need to go.
  • Be underweight.
  • Be unclean.
  • Be ungroomed.
  • Give no eye contact.
  • Struggle to breath.
  • Be badly dressed.
  • Struggle to walk – it has no relevance to your Autistic Spectrum Condition but it is mentioned so many times on the form so MUST be important.

    dirty hands
    Photo by Ian Espinosa on Unsplash

All joking aside, I tried not to judge the guy who came in who did smell, “struggled” with his cane etc – and it was hard not to think why isn’t someone really looking after this person if things are really this bad?! He had someone with him too so not like he was just alone.

On the other hand this process has made me feel like a fraud. A scrounger trying to get money for a young man who it appears to be more than capable of living independently when there are so many others out there who aren’t. It makes me feel like he just has to try – that we are obviously doing something wrong. That I am just neurotic worrying, and fighting for support to ensure he eats, washes and has help with communication. I am not even sure it is worth trying to fight any more – never mind putting him through a tribunal.

I would be interested to know what kinds of support people who have been successful at Tribunal do receive/need to Gage whether it is worth the fight.

Thankfully Student Finance England do not agree with this decision and have awarded him his Disability Support Assist and so IS able to access help he needs to live more independently.

This Guide may be of use to anyone going through the process too: http://www.advicenow.org.uk/guides/how-win-pip-appeal

 

4 thoughts on “Personal Independence Payment Reasons for Saying No to Asperger’s Syndrome

  1. My son’s weight was used against him during his interview, I know this because they mentioned he did not look malnourished several times on the form. Never mind the fact that he was fed well, by me and if left to himself would probably live on crisps and biscuits. And the reason he is a little overweight is because he doesn’t go out anywhere. If, on a rare occasion he does go out it has to be with me. I took everything they said on the form, wrote it down and put my version of it. Then I sent it off to for a paper tribunal because my son refused to attend. He got the standard rate of PIP in the end, although I had no hope sending off the form and was advised greatly against a paper tribunal. Your list may have been in humour but it’s so true. I was turned down for PIP myself even though I turned up in a wheelchair and was unable to anything she asked. Because I can reach the microwave, put my own knickers on and have a shower (in my adapted shower) I was not awarded it. When I appealed I won simply because of the amount of drugs I have to take. The letter stated that someone prescribed that amount of drugs must surely be seriously unwell. The system is a joke, yes they may catch out a few that might be trying to get it for nothing, but for the genuine ones they’ve created a nightmare process of stress and distress. Sorry for my rant, but please don’t give up x

    1. Thank you for your support again. I am sorry you and your son have been put through this too. They really have made me feel that I am just swinging the lead for things. I was so angry when we received the original form but from this one I can really see where they have jumped to their conclusions. Thank you also for the hope. I guess I have fought this long I just have to keep on going.

  2. i haVE haD the pip interview AND PASSED how ever what you are NOT told is that

    you LOOSE money A LOT like we have LOST, ninety pounds A MONTH

    should be against the law .it is ROBBERY of Disability

Leave a Reply

Your email address will not be published. Required fields are marked *