PIP for autism refused

lainad

Hi everyone

I recently applied for PIP for the first time (for autism) and it was a disaster. I knew it was going to go badly from how condescending and fake nice the nurse was on the phone during the assessment. She basically kept telling me I had no problems and was fine because I manage to work and live alone, even though I detailed my struggles in the application. I have not been able to hold down a job most of my life, I can only work now because I applied with the Blue Tick scheme and have loads of adjustments. I am good at my job but really struggle with the social aspect. I haven't been to the office in over a year and miss every office party and all staff event because I can't cope, which obviously is having an impact on my career and chance of progression. I feel alienated and left out. I need to sleep 2-3 hours almost every evening after work because I'm so exhausted from it and I have no social life. 

I had a somewhat normal life when with my ex, but he left me, saying he couldn't cope with my autism and that he felt like a carer. All my relationships have ended this way. Now I am really struggling on my own and have been in autistic burnout most of the year. I rarely leave the house and have no real friends except online. The nurse tried to trip me up by asking if I ever went on holiday. I was honest and said I do occasionally visit family abroad, but that I need support to do so (family checks ticket and makes sure I've done the booking correctly and so on, family organises travel insurance, special assistance at airport), and she just used it against me and said if I can do that, then I'm fine. 

Is there even any point in appealing? I am still going through autistic burnout. I don't think I can cope with any more stress. The PIP money would be a godsend because I could pay for therapy and other things I desperately need, but I feel like they're saying I don't deserve it and don't need it and made me feel stupid for even asking. 

SaintB

I'm in a similar situation to you right now, autistic -and other stuff but still- and been in burnout for honestly... like 4+ years now, it really is a struggle isn't it? It seems really common this happens at the assessment phase and it's much higher percentage for those with mental health/neurodiversity related issues if the stats I read were accurate -and I remember them rightly. 

They really do make you feel stupid for asking, therapy was what I want to use mine for too as I really improved with therapy in the past and fell apart the moment it ended. You aren't stupid for asking, you deserve it, it's not fair they make us struggle the way we do. 

Depending on where you live there are a lot of charities out there that help with filling the forms in for the MR and with the appeal process afterwards if your MR fails. Which statistically is likely, the most recent report seems to be 11%-23% of MRs change the reward -percentage difference based on first quarter of this year vs the second. However the appeal has a much higher success rate of around 68% which in my opinion seems worth it.  

chiarieds

Hi @lainad - I'm sorry, I presume your decision letter, wasn't great. There is a point in appealing as you mentioned at the end, & that it would help for therapy, & anything else that would help you. It hopefully shouldn't cause too much more stress; the worst part, your assessment, is over.

I'm going to be completely honest with you.....the success rate with the first stage of appealing, a Mandatory Reconsideration, where another decision maker looks at everything again, isn't great, at about 23%. However, if that fails, you can appeal to a tribunal (you can ask for these to be by phone/video call), & the success rate of these is currently 68%, so a big difference.

If you decide to do a Mandatory Reconsideration, please don't ring up to start this, rather put it in writing.

It's not that you likely don't 'deserve' PIP, & even way less likely that you were stupid for asking, it's more about having an understanding of the PIP activities/descriptors, & how to get across the difficulties you have.

Have a think, & please let us know if you decide to do a Mandatory Reconsideration. We have members who can give advice about how best to do this; you're not alone now.

poppy123456

I think "deserve" is the wrong word because no one deserves to be awarded, myself included. We are awarded because we are entitled to it.

There's a lot of information that i gave on another thread here that may help you. Please scroll down to my last 2 comments here. https://forum.scope.org.uk/discussion/110790/pip-assessment-tomorrow-would-love-advice#latest

lainad

SaintB said:

I'm in a similar situation to you right now, autistic -and other stuff but still- and been in burnout for honestly... like 4+ years now, it really is a struggle isn't it? It seems really common this happens at the assessment phase and it's much higher percentage for those with mental health/neurodiversity related issues if the stats I read were accurate -and I remember them rightly. 

They really do make you feel stupid for asking, therapy was what I want to use mine for too as I really improved with therapy in the past and fell apart the moment it ended. You aren't stupid for asking, you deserve it, it's not fair they make us struggle the way we do. 

Depending on where you live there are a lot of charities out there that help with filling the forms in for the MR and with the appeal process afterwards if your MR fails. Which statistically is likely, the most recent report seems to be 11%-23% of MRs change the reward -percentage difference based on first quarter of this year vs the second. However the appeal has a much higher success rate of around 68% which in my opinion seems worth it.  

Thank you. Do you know of a charity who would actually look over my MR application or help me fill it in? I feel very overwhelmed.

lainad

chiarieds said:

Hi @lainad - I'm sorry, I presume your decision letter, wasn't great. There is a point in appealing as you mentioned at the end, & that it would help for therapy, & anything else that would help you. It hopefully shouldn't cause too much more stress; the worst part, your assessment, is over.

I'm going to be completely honest with you.....the success rate with the first stage of appealing, a Mandatory Reconsideration, where another decision maker looks at everything again, isn't great, at about 23%. However, if that fails, you can appeal to a tribunal (you can ask for these to be by phone/video call), & the success rate of these is currently 68%, so a big difference.

If you decide to do a Mandatory Reconsideration, please don't ring up to start this, rather put it in writing.

It's not that you likely don't 'deserve' PIP, & even way less likely that you were stupid for asking, it's more about having an understanding of the PIP activities/descriptors, & how to get across the difficulties you have.

Have a think, & please let us know if you decide to do a Mandatory Reconsideration. We have members who can give advice about how best to do this; you're not alone now.

Thank you. I would like to do a MR so if you could let me know who might be able to give advice, that would be great. I have just downloaded the form and started to fill in the information digitally. 

Do you know what the success rate is of phone/video appeal vs in person? I am worried they will use it against me that I can get through the long assessment like they did with the first one. Yes, I managed to do it but only with extensive prep and loads of notes and having someone else help me prepare. I can't be at that level of functioning all the time. 

poppy123456

This link will tell you what advice agency is local to you. https://advicelocal.uk/welfare-benefits I’d advise looking for either Welfare Rights or a law centre.

Telephone/video or in person hearings all have the same success rate at 68%. Paper based hearings have a much less success rate of between 5-8%. 

A Tribunal hearing isn’t another assessment. They are impartial to DWP and the health assessment providers. They will be there to listen to you and apply the law correctly. 

For the MR you can’t  do this digitally, it can either be through a form downloaded online and printed off or a written letter. You then need to send it to DWP by post. You can see the form here https://www.gov.uk/government/publications/challenge-a-decision-made-by-the-department-for-work-and-pensions-dwp

Only the Tribunal request can be done digitally. 

chiarieds

Remember PIP is not about any diagnosis, but rather how your disability affects certain activities of daily living &/mobility the majority of the time. Have a look again at the activities/descriptors that are looked at: https://www.mentalhealthandmoneyadvice.org/en/welfare-benefits/pip-mental-health-guide/help-with-your-pip-claim/what-are-the-pip-descriptors/

With your MR you should say where you think you should have got points, & why giving a couple of recent, detailed examples as to the difficulty you face for each applicable descriptor, i.e. when did it happen, where, what happened, did anyone see this, & were there any consequences to attempting/doing an activity? Say where you need support, supervision, prompting, etc. Remember it's about the help you need even if you don't get that help.

Say if you can't do an activity 'reliably,' i.e. safely, to an acceptable standard, repeat as often as one would reasonably expect, or if it takes you much longer than someone without a disability.

Put your name & National Insurance number on each page. Keep a copy, & get a free Certificate of Posting from your Post Office when sending it off.

Read the section on 'Reliability' here:

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/918328/pip-assessment-

lainad

I've read the guide for assessors and it seems so ridiculously weighted towards physical disabilities! I have major issues using public transport because I can't cope with crowds, so I often end up walking long distances or taking 3 quiet buses instead of one busy train, so it takes me ages to get anywhere (so meeting the criteria of not being able to do the activity reliably and in a timely manner), but there doesn't seem to be a way to apply that to get points? They do mention mental health conditions, but it's so subjective. Where's the line between "anxious and worried" (score 0) and "cannot undertake a journey without being overwhelmed?" (score 4) I talked about how I often have meltdowns on trains, have to get off if they get busy, most of the time decide not to do social activities because I can't manage the journey, and I got a 0. 

The same for the verbal communication and face-to-face engagement part, it seems totally focused on whether you can physically talk and listen rather than the mental stress caused by things like masking and the fact you need to gear yourself up for it mentally and spend hours recovering from it. How does anyone manage to get points for autism with this? 

poppy123456

You have definitely misunderstood the guide that you read. There’s 10 daily living activities and at least 8 of them can apply to someone with mental health/Autism, learning disabilities etc. Also 1 mobility activity. Only about half of them apply to someone with physical disabilities. 

My daughter has Autism, learning disability and social anxiety and she claims Enhanced for both parts. We have many members with Autism that also claim PIP. 

I’d advise you to take some time to have another read to fully understand the criteria. 

lainad

poppy123456 said:

You have definitely misunderstood the guide that you read. There’s 10 daily living activities and at least 8 of them can apply to someone with mental health/Autism, learning disabilities etc. Also 1 mobility activity. Only about half of them apply to someone with physical disabilities. 

My daughter has Autism, learning disability and social anxiety and she claims Enhanced for both parts. We have many members with Autism that also claim PIP. 

I’d advise you to take some time to have another read to fully understand the criteria. 

I don't think I've misunderstood. I think the assessor is using the criteria as an excuse to say I don't meet the criteria. 

As I asked, where's the line between "anxious and worried" and "severe psychological distress"? The assessor said I can make journeys but get anxious and worried, even though I told her I can't do it most of the time and often have meltdowns when I try, which I personally would say is severe psychological distress. So she's basically just minimising my issues and it's her word against mine.

Likewise, I explained all about how I struggle with face-to-face interaction, that I need to prepare a script beforehand, that I struggle if it goes off script, that I often have meltdowns afterwards in the safety of my home from all the masking I had to do. The assessor just basically said "you get a bit anxious in social situations but you can do it when you have to" even though I told her that I don't leave the house on the majority of days and that even in my very best weeks, I can only manage a few hours of social interaction. if you look at the assessor criteria for this descriptor, it's ALL physical disabilities as examples. There's absolutely no room to score someone who physically CAN speak and listen and understand but who has to mask heavily to do so, causing extreme distress that isn't always outwardly visible. 

How do people get around that? 

Adrian_Scope

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