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Neurodiverse Mumsnetters

Use this forum to discuss neurodiverse parenting.

Advice on claiming PIP

11 replies

Flump9 · 01/05/2022 01:30

Hi hope I can ask advice about my 18 Year old DD with Autism. After spending hours and hours on a PIP application for her in December she has been given the standard daily living amount. I know a lot of people don't get awarded anything so feel we should probably just be happy with that but really they haven't given her the points she should have and the form says she can plan a journey which she cannot and she can't follow an unfamiliar journey which it doesn't mention at all. Have any of you managed to get the mobility part of PIP? I don't know whether to fight for more or not. They could override the decision and not give her any at all. I don't believe I have Autism myself though I do have some traits and the whole application process is so stressful and i'm not sure I can face fighting for any more. I've had a sense of dread since finding out at the thought of more form filling and waiting.

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Onceuponatimethen · 01/05/2022 02:35

Op I’m just about to start this process for my ds who is much younger.

I have no real advice but wanted to say two things. First of all you sound like an amazing mum hanging on in there so far when all this form filling is so tough.

Second of all, is it worth calling the charity Contact? They have really helped my sil with applying for benefits. They support families with disabled children including ASD until they turn 25. Their general helpline is good for benefit advice. They also have an amazing Listening Ear helpline where you can get a supportive 1:1 one hour phone call just to get emotional support. I have used this and found it really really helpful.

contact.org.uk/help-for-families/faqs/

Onceuponatimethen · 01/05/2022 02:38

I also wanted to post to say I totally get the stress involved. My op has asd traits and I almost certainly have ADHD. Trying to push for help for ds causes us so much stress. I hear you and just want to send you an un MN hug if that would help. If you aren’t into hugs then I’m sending a big cup of Brew and some Cake in case that does Flowers

Sortilege · 01/05/2022 02:42

Tribunal is actually very civilised and relaxing compared to dealing with DWP. I can’t remember the exact process but isn’t it something like ask for a mandatory reconsideration and if you’re not happy proceed to appeal, giving your reasons? You’ve done the worst but.

BlankTimes · 01/05/2022 04:24

I'd advise you to join Benefits and Work for their Guides which are very detailed and helpful.
www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-appeals
it's a one off payment for about £20 and their guides give detailed descriptions of how to word your appeals. It's not so much what you put on the forms as the way you explain things which can lead to success or failure for MR or Tribunal.

Or CAB are free
www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/appeals/apply-to-tribunal/

Good Luck!

Flump9 · 02/05/2022 02:02

I'm trying to tell myself the worst bit has been done but still the feeling of doom. We spent 2 hours on the phone Thurs/Fri trying to get through and asking for the assessors report as I wanted to read that before deciding whether to go for the MR so hopefully that will come quickly. I say we were on the phone she has to be with me but doesn't speak only to confirm she is there and I can talk for her.

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Libertybear80 · 02/05/2022 02:50

I got the full PIP mobility element for my daughter (now 16). Plus some of the daily living element. Complete the full detail written section giving her worst day and how that feels for her. I found them very understanding and they dealt with her very gently.

LilyRed · 02/05/2022 12:31

I can only say, be tenacious and write the daily routine as if it is a really bad day, not "well, sometimes I / they are a bit like this" I found the PIP office were much more reticent to award than the old DLA, but if you get a refusal at first, please appeal, most people get awarded second time around.

BlankTimes · 02/05/2022 14:30

Please consider the wording on the forms you submit very carefully.

Saying every day is like her worst day when that's not true is wrong. It's also very unlikely for anyone to have a neurodiverse condition that doesn't fluctuate day to day. The DWP and Tribunal are unlikely to believe a case where someone has the exact same presentation every day.

Once more, the Benefits and Work guides go through everything and deal with this as well. They are very good at showing you how to write your true information in a way that DWP/Tribunal can understand how difficult things are for your DD.

Does the PIP form suggest you submit a diary, so you can show how often good days and bad days occur? If not, do that, in accordance with B+W's suggested wording and back up every statement you can with reference to assessments, medical reports etc.

If she can do something, can she do that alone reliably, repeatedly, safely and in a timely manner? When you live with someone it's so difficult to explain their challenges, but you need to be able to do that to get a good result. For every question, assume the DWP know nothing about your DD and detail the difficulties she has with a task so they can see how and why she has difficulties completing (or even starting) it.

Despite my DD having indefinite DLA and asking for that to be taken into account and being fairly sure PIP would just carry on from that point, we were really put through the mill with PIP.
The Tribunal panel all agreed independently that DD should have been awarded the enhanced rate of both components of PIP on the paper submissions alone. She was awarded that with 'it is inappropriate to set a term' for the review, meaning it will have a light review 10 years later.

Some people seem to sail through a PIP assessment with hardly a blip and others have a dreadful time, all I can say is hang on in there and do your best Flowers

StationaryMagpie · 05/05/2022 16:26

i'm in this position now, i will have to switch DS to PiP.

I have ADHD and awful anxiety myself, the whole thing is terrifying me because i get carers allowance and enchanced Tax Credits, and if he loses PiP i'm going to lose most of my income and have to face working when he NEEDS full time care, he can't look after himself at all >.<

WithASpider · 05/05/2022 16:55

DD1 (18) has Autism, anxiety and OCD. She cannot plan a journey, has a very restricted diet, needs medication reminders and struggles to understand anything more than basic written english. She got a measly 2 points on both her initial application and her reconsideration. The report was a load of lies and assumptions, claimed a hot meal was a sandwich (she doesn't eat bread) and used the fact that she wants to go to University against her.

Thankfully it's a year next month since the initial application so we can do it all again with additional info since she's now been granted DSA.

I hate PIP.

Flump9 · 11/05/2022 14:43

I've been avoiding this post as thinking about it is doing my head in but i'm running out of time so I just filled the MR form in but I feel i've worded it badly and not put the points across well at all. It's mainly the planning a journey and following unfamiliar route that I disagree with but how can you prove that they can't do that. Obviously I say that she can't. The decision letter said that the distress and severe anxiety wasn't apparent or something but how can you prove that doing something would cause distress? We try and keep her life low stress by not making her do things that cause her stress so right now she manages. I feel I can't put any more energy into this. I will send this off and see but not holding my breath. For others applying for PIP with Autism I found this guide very helpful, i'm not sure if the link works as its a wayback one as the page has gone now. web.archive.org/web/20201112232729/www.awp.nhs.uk/media/825665/w__social-care_benefits_guide-to-pip-15-october-2019.pdf

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