PIP decision and aphasia — Scope | Disability forum
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PIP decision and aphasia

LaCala Member Posts: 2 Listener
Hi. My husband had strokes several years ago in his 20s. He has aphasia whuch has affected his ability to say what he means, understand others correctly, read and write.
I have been going to appointments with him for this reason for the past 18 years. Makibg sure he is giving and receiving the right information and chipping in when needed. 
He cannot read so cannot manage our household budget or bills.
Following his assessment for PIP (where I was present and through the assessment at several times I explained to him what was being asked or clarified the information he was giving) he was given the enhanced care rate but the points he got were primarily for physical issues. He got 0 points for communication and 0 points for budget and only 2 points for reading (implies he just needs me to read something out to him and does not take intonconsideration that I have to simplify and rephrase in several ways)
He got 0 points for planning and following a journey which I cannot understand either ... he cannot plan an unfamiliar journey, he does not have the reading skills to manage a map or a bus timetable. The only journey he takes alone on a bus is to his dad a 10 min journey away and I take him to the bus stop. Also got 0 points for getting around which we were expecting because the threshold for this is so high.
I feel so insulted by their decision. As a young man he would love to be able to plan an outing and get on the right bus at the right time without my help.
I dont really know what to do next. He cannot read or understand all the advice on these pages himself and I cannot simplify it enough to make sure he understands the challenges and risks  of appealing.
I am so frustrated that he scored points for using the toilet ( the only reason I can think of is because he pits his hand on the basin but we did not say he needed help or that it was a difficulty for him) but nothing for his communication when he has aphasia and we are completely socially isolated because of the impact of his aphasia.


  • poppy123456
    poppy123456 Member Posts: 31,073 Disability Gamechanger

    I realise you're not happy with the points he scored for the descriptors for the daily living part but he's been awarded Enhanced daily living anyway and this is the highest award you can be given, there's nothing to challenge here, at least not for the daily living part.

    What you should be looking at is the mobility part for following and planning a journey and the moving around part, if he has physical disability too. They do look at the whole award again but my advice is not to question the daily living part of the award.

    You need to put the request in writing stating where you think he should have scored those points and your reasons why. Adding 2-3 real life examples of what happened the last time he attempted that activity for each descriptor that applies to him. So for the mobility part tell them what would happen if he went out alone, what would happen if he was left alone outside? would he be able to find his way home? Is he safe on the roads alone?

    Face to face advice is needed here and this link will help you find what's available to you. Welfare rights or a law centre are good places to look for. https://advicelocal.uk/

  • LaCala
    LaCala Member Posts: 2 Listener
    Thank you. Yes I will seek face to face advice and thank you for the link.
    I understand that he is already on the highest possible rate for daily living but it worries me that there is no recorded recognition of his disability ito communication and understanding of reading and finances as this may affect other benefits like ESA or even PIP when he applies again. His abilities with regards aphasia have remained the same over the years since his strokes. Sadly it is even difficult to explain these complexities to him for him to make his own informed choice because of the language difficulties.
  • poppy123456
    poppy123456 Member Posts: 31,073 Disability Gamechanger
    I totally understand the worries with future PIP re-assessments but you really do need to think very carefully here about disputing anything with the daily living award because he does have Enhanced already and it doesn't matter how many points he scores he won't receive a higher award.


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