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I Got Turned Down in Paper Based Assesment

Oceanlabyrinth

Hi all, I'm a newbie but been reading most people's comments for a couple of months.

I was hoping my paper based assesment was an indication it was going to be successful. Alas no. I scored 0 in everything. And reading the comments at the end of the letter shows the assessor has no clue how autism affects people at all.

For example, in the daily living part I explained how my condition affected me. This form is supposed to show our worst days, right?

1) Preparing Food/Eating & Drinking:
I said my problem is I either use timed appliances (toasters, microwaves) to make food because I easily forget leaving them on (cookers and chip fat fryers are a no-no), buy from the shop or order online. When I'm in an autistic shutdown I forget to eat or drink at all. BUT APPARENTLY I AM FINE

2) Washing & Bathing/Dressing & Undressing
When I'm in an autistic shutdown I don't bathe for weeks and don't get dressed. BUT APPARENTLY I'M FINE

3) Communicating
Information has to be step by step and super clear or I can't take it in. BUT APPARENTLY I AM FINE

4) Reading
Because I can read (heaven forbid really, otherwise I wouldn't be able to fill in their sodding form, would I?! 🙄). But on my worst days I shut down and don't stimulate myself with such stuff. BUT APPARENTLY I AM FINE

5) Mixing with other people
This is my biggest set back with my autism. I avoid people as much as I can. I work only very few hours a week with some days in between off to regulate. I've only just started work after nearly 11 years unemployed. My social anxiety has destroyed friendships and relationships and ruined my life. BUT APPARENTLY I AM FINE

6) Making Budget Decisions
I have had money problems before and even been in trouble for it running into thousands pounds of debt. BUT APPARENTLY I AM FINE

The mobility section:
1) Planning & Following a Journey
I have to have routine and know exactly where I am going and it to fit an exact time frame, otherwise I can have extreme anxiety when things change. BUT APPARENTLY I AM FINE

I didn't fill in the questions that didn't affect me

In the comments left at the end, it basically stated because I can hold down a PT job, use public transport (I go into town really early to avoid the busy period about two hours before my shift), eat, drink, dress, budget, have a degree showing I can understand complex information, attended school without help, and spoke to her on the phone for about 90 seconds, I AM PERFECTLY FINE and will not get PIP.

Excuse me, but this person clearly has zero clue how autism affects people. Do autistic people not get degrees or phd's? Do they not hold jobs down when they can? Do they all go through school with a person assigned to helping them? I wasn't diagnosed until my 40's.

My brother also has autism and ADHD, and is one of the most successful managers in his profession, is on £70k a year, drives all over the country, etc BUT he was awarded enhanced daily. My autism affects me far worse and I got turned down completely. I'm convinced some assessors are bonused to turn a percentage of people straight down.

I can't do anything until Wednesday when I see my housing friend who helps with PIP info. But she said most of her client are awarded straight away. She was happy with my form before I sent it off.

I really feel at the end of my rope. This assessors view of autism is a vegetable who needs physical help in everything they do. Basically, the stereotype most people have of an autistic person. Their comments show they have no autism experience whatsoever yet are being hired to make such decisions. I'm so depressed right now.

Has anybody else found they have had the same problem and did it get resolved later?

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Comments

Albus_Alumni

Heya @Oceanlabyrinth and welcome to the community.

THe PIP forms are there to show how conditions affect you the majority of the time. So if something is hard for you to do 51% of the time and you couldn't do it safely, reliably, repeatedly or in a reasonable time, then you're classed as unable to do it in the eyes of the PIP assessor. So you need to fill in the forms with real world examples of the issues you've faced and make sure you use actual figures, not just saying "often" or "sometimes" The DWP really do like the forms filled in in a very specific way, but they tend not to let you know that bit.

I was diagnosed ASD 18 months ago and have had to go to tribunals for PIP twice so far after scoring 0 points, so I understand the frustration completely. But there is hope. I recommend putting in for a mandatory reconsideration in writing, as doing it by phone can end up with the operator writing things down wrong. There's a low success rate for MRs still, most of the action happens at the tribunal, with a 70% success rate. But the tribunals are worlds apart from assessments, they sound a lot scarier than they actually are.

Oceanlabyrinth

Hi Albus,

Thanks for replying. Did you have to attend the tribunal yourself or did someone do it for you? I ask because my housing friend said she's had to do those for her clients on occasion which she doesn't enjoy. I'm thinking she literally attended for her client maybe?

I did actually give her real world examples in every section I filled in about how my autism affected me.

Also, in the section about 'Mixing with People' I clearly stated it affects every area of my life and has destroyed it and how it's affected connecting with people, friendships and relationships alike. And yet she scored me 0? Not even a point was scored solely in that area. That shows me she's not even reading it because she's already made her decision further up earlier in the form, in my opinion.

I also stated in my form I can't handle phone calls well especially if I don't know who they are. She rang three times and I didn't pick up. She then left a message to explain she'd ring later. She rang and I picked up because I knew it was her. Yet in this refusal letter she said I was fine with speaking on the phone. All 90-120 seconds of conversation where she spoke mostly. I swear to god these people are the worst with bending the truth and it has to be because there is an incentive to turn people down.

When preparing for a MR, do I have to state in the letter exactly how my condition affects me every day and just expand on my form more?

I was told to fill it in as if it was my worst days. So, being autistic, I literally took their advice. Obviously, my autism affects me every day like others here but I was told to explain as if my life hit a brick wall not just the usual slog of the every day mundane but hard existence of being autistic

Oceanlabyrinth

By the way, snap Albus, I was diagnosed 18 months ago myself

poppy123456

Noooo please do not ever fill out any forms based on your worst days, that's not what anyone should do at all. If you did that and an assessment was needed, if it was one of your better days then they could think "well you can't be as affected as you said you were"

As Albus has advised, PIP is about how you are on the majority of the days. A diagnosis doesn't automatically entitle anyone to PIP. Unless you're applying through end of life with 12 months or less left to live, no one is automatically entitled to it.

It's very rare to be refused with a paper based assessment but it does happen.

The assessors do not make decisions, they make recommendations only. They do not need to have any knowledge about any medical conditions because PIP isn't about that.

For the MR you need to put the request in writing stating where and why you think you should have scored those points. It's fine to mention a couple of obvious errors in the report and the decision letter but then put both of them to one side and forget about them. Concentrating on both will not get you a PIP award.

When you filled out the form if you didn't give a couple of real world examples of exactly what happened the last time you attempted each descriptor that applies then you should do that now. Also include detailed information such as where you were, what exactly happened, did anyone see it and what the consequences were.

It would also help to have a little more understanding of the descriptors and what they mean, this will help with that.https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

Albus_Alumni

Congratulations on your diagnosis then haha.

I went to the tribunal with my mum both times. I had to take medication to get me there and I was a big mess the whole time. But they were very patient with me and I was awarded PIP both times. I even got an apology from them for the DWPs treatment of my case. So it's definitely worth going to yourself if you can. My assessor said I had no problems mixing with people because I could use Facebook.

When it comes to the MR, yes I'd focus on the descriptors that do affect you regularly. If the assessor twisted things a bit, it's best not to focus on that, as that's in the past now.

Oceanlabyrinth

Thanks Poppy.

I literally took the advice of two people who are telling those who have autism and deal with them to 'show your worst days - the assessor's like it when you are honest about that.' I even think I wrote that in my form 'On my worst days' 😩 Why am I taking advice from these neurotypicals? I didn't know.

Can I explain this in my letter too what I was told? Or has this destroyed my chances? I'm so annoyed right now.

poppy123456

There are no incentives to refusing people, that's just a myth. The assessors don't make decisions anyway, only a decision maker from DWP can do that.

Who ever it was that told you to fill the form out as if it was your worst day should never ever advise people to do that.

It hasn't ruined your chances, just don't focus purely on those days going forward. You said you gave real world examples in the form but were they really real world? Did you fully explain exactly what happened the last time you attempted each descriptor? Just telling them you can't do something because of an autistic meltdown is not enough, you have to explain in detail.

If it gets to Tribunal and likely it will because most MR decisions remain the same then you can request a telephone hearing. I know you said you don't like telephones but if that's a better option than appearing in person then choose that. Whether it's phone or in person you can have someone with you.

Please have a read of that link I posted above.

Amaya_Ringo

I had an in person assessment, but otherwise I can relate almost entirely.

Like you I had areas which I didn't give evidence for because why claim for what you don't need, right?
But like you, I had an assessor and then a first decision and a MR where they clearly didn't understand autism at all.

My first stage decision said I didn't have treatment for anxiety or an anxiety worker so I didn't need support. I didn't have an anxiety diagnosis, though...I had an autism one, and an autism mentor. Apparently that didn't matter. I had zero points for everything despite my claim being a shift from a lifelong DLA award and initiated by the DWP, not by a change in my circumstances (because obv. autism doesn't go away.)

So I was at university at the time all this happened.

I went to MR, and the guy basically said you're too bright to be autistic. Not his exact words but he said something about clearly not having an intellectual disability and pulled 2 words from my disability advisor's statement to support this. He ignored her subsequent list of support and adjustments I had at university to complete my studies. He also ignored testimony from my support mentors and previous assessors, and told me his opinion/evidence was the most recent and best available.

This sounds horrible, I know, But the lack of training in the DWP for autism apparently hasn't improved in the last several years. It disproves the claim that ND people are just able to get PIP like *that*.

So the better news. I had to go to tribunal. But I did win there. I think it was the first time my evidence was all considered properly.

I only got a copy of my full assessment report when we went to tribunal, and there were numerous examples where it said "Amaya reported x as a difficulty, but I think she can do it fine".

It's frustrating. It's especially hard going for us because autistic brains hyperfocus and are easily triggered with stress and confrontation, which is entirely what this process is. I would go for Mandatory Reconsideration, and, if you have to, and can, go to the tribunal yourself. It won't be nice, but I feel that it's better if they see how not nice it is for you in real life. The tribunal is not associated with the DWP, they are independent. DWP may send a representative/lawyer but in my case they didn't participate and their being there meant they didn't need to file for appeal.

I also relate to not using the phone. This is just me personally, but given that's an unfriendly medium for you, I would not choose it for any future hearing or tribunal. I know they're all stressful, but it is actually more helpful I think. This may be only my experience, but I can mask and I tend to detach and compensate in stressful situations because I had to do that growing up a lot. So how I present and how I'm feeling aren't the same, and I think that made my assessment go worse. If they can only hear your voice, they might not pick up on all your distress - remember a lot of people still don't understand how autistic emotions work, or that we have them at all.

If you go to tribunal, my advice is to prepare a statement as well. I wasn't sure if I'd be able to communicate fully in my tribunal so I sat down with the whole of my record and wrote a report with all the inaccuracies, compared to my evidence, explaining evidence about autism, how they had mistaken my claim, and so on. It got the judge's attention, and I think it helped me get my case across better than if I had just gone and answered on the spot. If you send a representative instead, still send a statement in your own words.

Good luck - I'm sorry you have to go through this as I know exactly how you feel right now.

poppy123456

Amaya_Ringo said:

If you send a representative instead, still send a statement in your own words.

If appearing in person then the claimant will need to attend their self. Same as a telephone hearing, the claimant needs to be there. Having a rep doesn't mean you can send them.

Telephone/video or in person all have the same success rate at about 70%. Paper based hearings are considerably less successful at only about 5-8%.

Amaya_Ringo

When I had mine, we were told that a tribunal could be held with a candidate in absentia. But they might have been giving us wrong information or it may have changed since then. They did give us a number of incorrect assurances, so I'm not totally certain. It may just be that they can process the appeal forms as a paper based tribunal instead.

Either way what I said stands. It's a good idea to write a statement of things you want to convey in case it's a challenge to answer on the spot.

Oceanlabyrinth

Thanks for the replies everyone.

Yes, if it goes to an MR and then a Tribunal, I will attend in person, terrifying as it will be.

Is there anyway I can get a copy of my form to see how they marked it? I never thought about making a photocopy before I posted. However, I'm interested in their box ticking.

I'm still reeling from their decision even though I explained myself well and my thought processes that prevents me from doing certain things or makes it super difficult, and them literally scoring me 0 right across the board.

It makes me feel like I'm being called a liar and a piece of scum for having the audacity to apply for assistance. I'm sure many others have felt this way too.

I have until May 29-30 to reply back and I'm waiting for a lady at my autism group to help me with applying for MR. I'm hoping she'll get back to me tomorrow or Friday

poppy123456

They do not mark the form in the way you're thinking. There will have been an assessment report written and returned to DWP. A decision maker should have then looked at that as well as all other information and evidence you provided and then come to a decision.

You can contact PIP and ask them to send you the report BUT please do not focus on that report itself because that's not going to get you a PIP award. It's fine to mention a couple of obvious errors but then put it to one side and forget about it.

Please also note that you will receive a copy of that and everything else you sent to support your claim at Tribunal stage in what's known as the "bundle"

Oceanlabyrinth said:

I have until May 29-30 to reply back

No, you don't. You have 13 months to request the MR. If you're outside of that 1 month then you must give a reason why you didn't request it within that time. If they refuse, you just proceed to Tribunal.

Please do not ring to request it.

Oceanlabyrinth

Thanks Poppy,

They told me in the letter why I was turned down for daily and mobility. That will just be more or less what's written in their assessment, won't it? Shall I not bother requesting a report?

'Please also note that you will receive a copy of that and everything else you sent to support your claim at Tribunal stage in what's known as the "bundle"
- I'm a bit confused here. When I contact PIP am I asking them to send me a form to open up an MR and they will send out everything I sent to them prior?

Or am I just writing a letter to expand on my autistic limitations and how it affects my life and then just posting back to them with my details so it can be considered for an MR?

Thanks for your help 🙂

poppy123456

Tribunal comes after the MR. There’s a form here you can download and print https://www.gov.uk/government/publications/challenge-a-decision-made-by-the-department-for-work-and-pensions-dwp
or you can just write a letter.

Please do not ring to request it because when you do that the time starts ticking and a decision can be made anytime. They do not have to wait for any forms,
letters or extra evidence from you.

The assessment report goes into more detail than the decision letter. It’s your decision whether you request it or not but as I advised it does cause a distraction.

Achyshakeypains

Oceanlabyrinth said:

Hi all, I'm a newbie but been reading most people's comments for a couple of months.

I was hoping my paper based assesment was an indication it was going to be successful. Alas no. I scored 0 in everything. And reading the comments at the end of the letter shows the assessor has no clue how autism affects people at all.

For example, in the daily living part I explained how my condition affected me. This form is supposed to show our worst days, right?

1) Preparing Food/Eating & Drinking:
I said my problem is I either use timed appliances (toasters, microwaves) to make food because I easily forget leaving them on (cookers and chip fat fryers are a no-no), buy from the shop or order online. When I'm in an autistic shutdown I forget to eat or drink at all. BUT APPARENTLY I AM FINE

2) Washing & Bathing/Dressing & Undressing
When I'm in an autistic shutdown I don't bathe for weeks and don't get dressed. BUT APPARENTLY I'M FINE

3) Communicating
Information has to be step by step and super clear or I can't take it in. BUT APPARENTLY I AM FINE

4) Reading
Because I can read (heaven forbid really, otherwise I wouldn't be able to fill in their sodding form, would I?! 🙄). But on my worst days I shut down and don't stimulate myself with such stuff. BUT APPARENTLY I AM FINE

5) Mixing with other people
This is my biggest set back with my autism. I avoid people as much as I can. I work only very few hours a week with some days in between off to regulate. I've only just started work after nearly 11 years unemployed. My social anxiety has destroyed friendships and relationships and ruined my life. BUT APPARENTLY I AM FINE

6) Making Budget Decisions
I have had money problems before and even been in trouble for it running into thousands pounds of debt. BUT APPARENTLY I AM FINE

The mobility section:
1) Planning & Following a Journey
I have to have routine and know exactly where I am going and it to fit an exact time frame, otherwise I can have extreme anxiety when things change. BUT APPARENTLY I AM FINE

I didn't fill in the questions that didn't affect me

In the comments left at the end, it basically stated because I can hold down a PT job, use public transport (I go into town really early to avoid the busy period about two hours before my shift), eat, drink, dress, budget, have a degree showing I can understand complex information, attended school without help, and spoke to her on the phone for about 90 seconds, I AM PERFECTLY FINE and will not get PIP.

Excuse me, but this person clearly has zero clue how autism affects people. Do autistic people not get degrees or phd's? Do they not hold jobs down when they can? Do they all go through school with a person assigned to helping them? I wasn't diagnosed until my 40's.

My brother also has autism and ADHD, and is one of the most successful managers in his profession, is on £70k a year, drives all over the country, etc BUT he was awarded enhanced daily. My autism affects me far worse and I got turned down completely. I'm convinced some assessors are bonused to turn a percentage of people straight down.

I can't do anything until Wednesday when I see my housing friend who helps with PIP info. But she said most of her client are awarded straight away. She was happy with my form before I sent it off.

I really feel at the end of my rope. This assessors view of autism is a vegetable who needs physical help in everything they do. Basically, the stereotype most people have of an autistic person. Their comments show they have no autism experience whatsoever yet are being hired to make such decisions. I'm so depressed right now.

Has anybody else found they have had the same problem and did it get resolved later?

Im not sure you fully understand how pip works and how it is scored ect look here

https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

Preparing Food- as You can use a microwave and can eat, you can stand and chop food " Im assuming"
regardless if you dont "cook" you wouldnt get any points for this.

Washing & Bathing/ You can wash unaided so dont need help getting in and out of the shower when u do wash ect, but you could earn 2 points if you do need prompting by someone, not washing for weeks then having a wash wouldnt score u points.

Reading, Can you understand basic signs and words if so your not gonna score any points or less u need aids to help you

9. Engaging with other people face to face.

You work and if it is with people then you gonna struggle to get any points with this section cause you can cleary do it, Might be a struggle at times but you can most of time.

6) Making Budget Decisions

Do you have own bank do you pay your own bills can you "budget" or do you need someone to help you.

1) Planning & Following a Journey

Having to know a route and prepare in a extact time frame Im not sure would score you any points,

I think you need to understand with pip its about how your medical condetions affect you. so just cause you have a autism it does not mean nothing on its own, Someone can have autist and have enhanced for both mobilty and dailying living and someone else like your self can score 0 in all. cause everyone is differnt.

I do think you could be entilted to a few points but I find it very hard to beleive you would score enough to get any payment based on what you said.

For example washing and bathing not washing on its own isnt going to score you points.

If you had said My partner my mom my friend who ever has to keep on to me to wash as I wont then you could score some points under

Needs supervision or prompting to be able to wash or bathe. 2 points.

also you "might" have a chance here for dressing if you stated you need to be told to get dressed but just saying u dont get dressed on its own isnt going to score you points

Needs either -

prompting to be able to dress, undress or determine appropriate circumstances for remaining clothed; or
prompting or assistance to be able to select appropriate clothing. 2 points.

Please read in the scoring more so you can understand it before you appeal

https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

Oceanlabyrinth

@Achyshakypains,

That sounds like the entire form IS set up for people with physical disabilities and not for people who struggle with the psychological side that collapses ones life, which supports the belief that the form isn't thought of with neuro divergent people in mind

Also, everything you pointed out goes against what my brother was awarded. He also has autism, yet holds down a super successful, highly paid, regional job, drives all over the country, does presentations to groups of people, and does way better socially and relationship/friend-wise, and yet he was awarded enhanced daily. I do a whole lot worse and have hit a brick wall. So, why are people that successful getting PIP but my situation is a huge NO? Sounds to me like a case of, 'if your face fits, you'll get lucky.'

Why did the NHS therapists who diagnosed me say, "I strongly advise you apply for PIP?" I'm genuinely confused. What is the purpose of putting me through any of this stressful process if I'm physically not impacted but my mental health impacts me?

This is seriously putting me off. It's like the health professionals tell me I should apply and then other people think I've no business doing so. And like the reasons you stated, it confuses me how people seemingly successful at life but have a little more struggle than the average person can get awarded. But those struggling to keep their mental health from slipping into regular suicide thoughts which impact ones entire life that it can come to a standstill still, just need to go away and get real and grow up. How bad does mental health have to be before it's taken seriously? It's very different from physical disabilities.

poppy123456

Oceanlabyrinth said:

@Achyshakypains,

That sounds like the entire form IS set up for people with physical disabilities and not for people who struggle with the psychological side that collapses ones life, which supports the belief that the form isn't thought of with neuro divergent people in mind

To me this sounds like you do not understand the descriptors and what they mean. PIP is definitely not set up for just physical conditions. There's many descriptors that can apply to neuro divergent people. Off the top of my head there's at least 7 for daily living and 1 for mobility.

What you need to do to start with is forget about your brother and what he claims because everyone is affected differently and you will never get 2 people the same. Especially those with ASD because it's a spectrum, as you will know.

Have you read the links that were posted above? Especially the 2nd one? If not then please do take sometime to have a good read as that will be the place to start.

I disagree about the advice given above about working with people and struggle to score points for engaging with others. I'm fairly certain there's caselaw about this but it's late and don't have time to find that now. Working with people that you know and are used to working with doesn't mean you will not be entitled to points in this activity.

You should not be put off by anyone to not continuing to challenge the decision not to award you PIP. I don't think it's right for anyone to say that based on what you said here that you would struggle to get an award. It's very difficult to explain in a few short comments how you are affected.

Based on what I understand about ASD (my daughter has this, as well as a learning disability and social anxiety) I would say the opposite. I would be very surprised if you weren't awarded going forward. Now the chances at MR stage are very low but more chance at Tribunal stage.

You need to move away from explaining what ASD is and concentrate on how it affects YOU. It's not about anyone understanding Autism, it's about you explaining your struggles and the help and support you need.

Do I think you were treated fairly? No, I do not and I think it's wrong that you were refused even without the chance of an assessment. It's actually quite rare to be refused on a paper based assessment. I've been advising for several years and can only recall this happening a few times in all those years.

If it was me then I would make a complaint to the assessors that you weren't given an actual assessment so that you could have your chance to explain. I know the forms are your chance to explain but that's not the point I'm trying to make here. The point is that you DIDN'T have an assessment.

Oceanlabyrinth

Thanks for explaining in-depth, Poppy 🙂

I did say in the form how my mind often stops me doing the simple things asked of in most sections, which can end up becoming mountains, and how difficult it is to live with, and I thought I explained myself well to the PIP folk in how my condition affects me personally. I'm going to have to really explain it well if I request an MR.

I still haven't got round to it as the woman who was helping me with my PIP forms via my autism group I go to has just ignored me completely for the past month. So I'm knocked for six and really down at the moment.

Weirdly though, I got turned down with zero scores in early May, but I got a call from my doctor this week who have said I need a double appointment later this month to fill in my PIP form. I never requested that. Is this normal?

I told the lady on the phone I'd been turned down and asked why I'd be needing a double appointment when the decision has already been made. She couldn't answer but said the appointment is booked for the end of the month with the doctor. Is this to cover the DWP's back for their lack of giving me an assesment? I feel I'm being played right now 🥺

poppy123456

If it was me I would forget about the person that helped you with the forms and either write the letter yourself or speak to an advice agency near you.

It's rare for them to contact anyone for any evidence. The form that was sent to your GP could well have been sent quite sometime ago and they are only now getting round to contacting you.

If you are outside of the 1 month since the decision was made you will need to make sure you give a reason why you didn't request it within the first month. If they refuse you can just proceed to Tribunal.