0 points for PIP, should I appeal?

[elliejjtiny]

Ds is 19, has autism and has been on DLA/PIP since he was 9. He was turned down at renewal with 0 points because he has a part time job and because he goes to university.

He has a lot of support to do his job and at university. His life is restricted because of his autism, eg he can only go to the supermarket when it's quiet.

I do a lot for him, much of which isn't covered on the form. i am also his appointee. I still think he should have got points in the communication section and the money section. Also the planning a journey section as well.

It's not just about the money. I feel like when he was on PIP, his disability was recognised and my support for him was acknowledged. I am always being told that he hasn't got "proper autism" because he hasn't got learning disabilities as well. I voiced my concerns when he was 8 months old and he didn't get a diagnosis until he was 9 so that was really hard. At least before I could say to myself that the dwp have acknowledged his disability but now it feels like we have gone backwards.

How do you know? You aren't living his life.

You still haven’t convinced me why, unless a person is incurring an actual extra cost of being disabled - they need to be paid a sum of money as some sort of compensation or “acknowledgement”, as you put it.

Why does you talking to him on the phone mean he needs government assistance? Genuine question.

Pip doesnt really look at whether the support costs money though.

Whilst the aim might be to help with extra living costs if you have a disability that impacts on doing tasks or getting around, the assessment doesnt look at the costs. Its just a proxy. If you have these care / mobility needs you can have money.

It asks if you need prompting to do stuff. Not whether you pay someone to prompt you. It asks if you can make a meal, not whether you cant but mum paid for catered halls so its not an issue.

I have no idea what support needs the ops son has and if they are relevant to pip as they dont sohnd specific to pip, but people are attempting to add an extra 'do you morally need the money' criteria which isnt in the system.

I guess people are just answering her question saying she shouldn't appeal because he doesn't need the money from a morality view rather than a would it be succesful perspective.

I have just applied for PIP for my autistic 16yo. I will be very happy if she doesn't need it at 19, I really hope she won't. I have said this to her as well. But we did the points calculator online and she scored herself something like 11 and 12. Have you done this with your son? What did you think he should have been scored?

What would your son do if the van wasn't available? I have a big van too, partly because one of my autistic children needs the personal space around her. There were meltdowns and one instance of physical violence with a smaller vehicle. 'Severe distress' would be the term I would use for a PIP application.

I wouldn’t think he would qualify for Financial help based on what you have said. He lives daily life fine with general assistance as and when needed.
Almost all 19 year old are terrible with money and parents spend a lot of time reassuring them via phone and driving around collecting them

I would say may people need adjustments in life. But they don’t get financial help for it. My dh is terrible at reading, probably dyslexic. But he works in something maths based to get around it and uses spell check on everything. He also hates crowds.

My Ds has a medical issue. He doesn’t need any help day to day really bar monitoring. But we spend around 3 days every single month at the hospital. We have to just adjust life for that, but we don’t get money for that, even though that’s 3 weekdays I can’t work. We also spend a lot on different food due to allergies but again, that’s just life.

I think owning an extra van is your choice. You could choose to just transport stuff over two trips in Normal car, or courier or he adapts and takes less, or buy two of some items. Or just pay from own funds if your find it worth it. But it’s isn’t an essential

Let’s just hope you’re never in a position where you end up disabled; you will be fully convinced of the need and yet get absolutely no where need the support required.

I’d say definitely appeal. 0 points doesn’t sound right from what you’ve described

OP I think you should definitely appeal. Having a job or studying should not stop him receiving PIP. It should be based on his needs. Does he have an EHCP, or could you have a private OT assessment who can record/recommend accommodations and support he needs. You could get advice from Citizens Advice or a disabled charity such as Contact on what further evidence/information should be provided. Essentially he/you need to ensure it’s clear anything he cannot do independently and what the consequences would be. You can provide a statement as additional information where you can include every single thing you have to do, maybe keep a diary for a couple of weeks to help you cover everything.

I thought the same thing. I would have expected him to have scored some points, from what the OP has described. They may not be enough for an award, but 0 points, seemed odd imo.

Some of us are disabled. We know how difficult pip is to get. We also know it's based on needs and not diagnosis

I’m not going to advise on PIP, as others with experience have given a view. you’ve nothing to lose by appealing, so it’s absolutely worth doing - particularly in tandem with, as another poster suggested, sitting down with DS and looking at the PIP award criteria and asking him to score himself in each area and then explain why he’s scored himself that way, which provides useful detail you can include for the appeal.

But you’ve mentioned DS’s lack of confidence and his feelings that a) he’s being told he isn’t autistic by being denied PIP and b) that he struggles with social skills, and those are things which reassurance would really help with. That PIP is about compensating for the additional costs associated with being disabled, and that whilst the DWP agree he is disabled, that’s separate from a financial award. And also reassurance that many students, more than you and he might think, don’t live heady social lives and make large numbers of best friends, or socialise with their dorm-mates, or bond with people on their course just because they all share an interest in the same subject. He’s become friendly with another person at university; he chats to people on his course; he goes along to some social events and enjoys them; he gets on with his colleagues. Whilst he might be imagining that he’s the odd one out because he sees some other students having wild and extraverted times, he really won’t be. Is he happy with his level of social interaction? If he’d like more, would he consider approaching the student union social committee and setting up a society or club of his own for his special interest or another interest he has? Is there a society or club for disabled students or autistic students he’d feel comfortable checking out?

I get PIP for MH issues. I’m also autistic although I don’t think I’ve ever mentioned that in my claim.,I’ve never had an interview either in person or on the phone thankfully but I provide loads of evidence - prescriptions, psych reports, appointment letters, hospital discharge statements etc. have you included all that?

Your DS had a job, studies and lives independently?
Im sorry but I’m surprised you’ve applied for benefits on this basis. I’m really sympathetic to your challenges as a carer as I am one too and I know how tough and neverending the support we need to give is but benefits aren’t compensation, they’re there to help if we need it. Your DS is incredibly capable despite his challenges and you must be very proud of him.

We don’t know exactly how much @elliejjtiny needs to do to support and facilitate her ds doing all these things ? So to say he works/studies so can’t be meeting PIP criteria is not fair at all.

I would look at what points are awarded for see where you think DS should have scored. It will also help you to read some of the case law surrounding PIP so you know what should/shouldn’t be considered. Sadly, not all assessors are aware of this or ignore it. For example, there is case law stating activity 9 should consider more than someone’s ability to engage as part of their employment. There is much more to be considered.

Nobody needs to 'convince you'.

Who do you think you are?

But none of the questions ask about jobs or university? You can work/study and claim PIP?

He will have lost points if he needs little or no support for cooking/feeding himself, bathing/toileting, managing finances, going out and following a route, understanding and communicating with others.

Well, the tribunal appear to be of the same mind, so… 🤷🏻‍♀️

You don't have to incur extra costs. My elder daughter gets it because she can't work. She has a lot of different conditions including epilepsy and a moderate learning disability. She does not have extra costs as such but she has no money. PIP is how people like her are partly funded.

My younger daughter gets it even though she works. She does have additional costs. But the assessment doesnt take these into account as such - it is about her difficulties doing a range of life activities and the Gov then accepts that someone with that level of need probably needs some help.

They came up with the scheme. It replaced DLA for adults - they looked lastvyear at bringing in vouchers, but it was abandoned for several good reasons.

How do you know? OP hasn’t been to Tribunal yet.

I can't see any mention of it going to tribunal. Thats the next step after the appeal, if that should fail and, if she words the appeal correctly, she will be awarded PIP.

Ask me how I know.

I don't know what your intention is with a post like this but it's hardly going to persuade people that the PIP process is robust and not open to manipulation. You might think the stats around PIP awards upon appeal etc are some kind of gotcha but instead they simply highlight that the whole process needs to be reformed and this will include people like OP's son not getting an award just because they 'word things correctly'.

Most people on this thread sympathise with OP but don't think PIP is necessary on this occasion either to meet OP's son's needs (he doesn't seem to have any obvious additional costs that arise from his disability) or to validate his feelings. It matters because we live in a democracy and an election is a few years away. There are parties that can and will reform the system so that it is more sustainable. It does nobody any favours by trying to pretend that the general population's opinion on this doesn't matter. It will be the ultimate decider in a few years when major changes are implemented.

The criteria for PIP is very high and it may be worth telling DS that the vast majority of ND people are not eligible for PIP. It sounds like, whilst DS has some difficulties, they are all things that he has learned to deal with in order to live a fairly normal life.

PIP is now only for people who require a very high level of support to do the basics of taking care of themselves.

It seems very unlikely that you're going to go from 0 points to 8 on appeal.

Could he have told them the pip money is used by you to pay for your trips to him? I think a lot of whay you posted is very common of many 19 year olds, in fact he is doing fantastically well, but with your emotional support.

is it leaving you financially struggling without it?