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.

They do ask about working at the face to face assessment

You can work or study but your job or the course you do can't contradict why you're claiming

Ah ok. Sorry I don't remember them doing so.

Yeah I get that obviously it could be tricky.
If you say you struggle to go places and follow directions but you go college on your own each day for example.

I think if they're saying zero points for everything then unless he was pretending to be a lot more capable than he actually is, the outcome of appeal would be the same if he answers in the same way?
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The op did the assessment, not him.

Just to address a couple of things - none of the descriptors are about working, but you’ll definitely be asked about your current and previous employment as well as studying and volunteering. It goes into a section called Social and Occupational History.

Regarding case law - those can be applied at tribunal stage, but they’re not applied at first line assessment. There are many, many things that aren’t considered. I could probably give you 50 examples of things that people think are, but are disregarded immediately.
As I said before we’re looking at the whole person. Absolutely, engaging goes beyond doing it at work, but someone who can do it at work or university (where it involves the public, new colleagues etc) is unlikely to be so affected by their condition that they cannot do it on other settings. There are always exceptions, but that’s rare.

Regarding case law - those can be applied at tribunal stage, but they’re not applied at first line assessment.

Case law absolutely should be considered at the application/review stage. It is incorrect to say it shouldn’t or can’t be. It is not only for Tribunal state. Not at all.

someone who can do it at work or university (where it involves the public, new colleagues etc) is unlikely to be so affected by their condition that they cannot do it on other settings. There are always exceptions, but that’s rare.

It really isn’t ‘rare’.

Thank you. There are a few things that he can do for a short while but he finds the effort exhausting. At work one of his reasonable adjustments is that he only ever works out the front where it's fairly calm and predictable, never in the kitchen where it gets really busy and chaotic.

I find the van very useful for separating the dc too.

I find with him it's like he is living somewhere where he doesn't speak the language or understand the culture. And he can manage a bit but it's hard for him, like just living is a struggle. The whole set up at home is very ASD friendly so almost nothing happens without careful planning, visual timetables are everywhere. We have a rule that no visitors go upstairs at home so that he knows if his siblings have a friend round ds can avoid them by being upstairs.

My life pretty much revolves around the dc and their needs. Ds needs are less than his siblings but still considerably more than the average 19 year old I think.

We would still do everything to support ds, whether the PIP was there or not. But we would struggle financially. And also I have always thought that at some point in the future, ds could pay someone to do what me and dh currently do out of his PIP.

Ok but presumably saying the things that he would've said himself? The answers should be the same whether it's the person or their representative answering it? Unless they're not communicating with each other sufficiently about exactly what it is he can and can't do.

You can certainly apoeal, as it costs nothing. But as he scored nil, you may well not succeed. 🤷‍♀️

I totally understand this but people on the outside don’t seem to understand how much time and money (loss of earnings) it takes to support an autistic child/young adult. If your spending x amount of hours supporting him then that’s x amount of hours you are not eating a living, on top of fuel costs.

My dd is working one day a week, she was lucky to get a job in industry mainly made up of autistic people, they are all really excepting and they understand she may get overwhelmed by certain things and she may need extra breaks, she doesn’t have to deal with the public…just numbers. Just working that one day mentally exhausts her, she is looking for more (similar work) but whilst she can’t drive and there’s no public transport now she’s living at home makes it hard to find work.

PIP has helped her a lot and as made it possible for me to be there to support her as much as possible. As you say….one day they may need to employ carers or cleaners to help them live independently and that is what PIP is for?

My dd is doing well and will likely get her PIP reduced, which is great, she’s becoming more independent but getting her through uni was hard.

I'd give it a try but try to take the emotion out of it. Barely any autistic people receive PIP but then I have a friend with heart failure and out of control diabetes and he was also refused PIP (if anyone has seen I Danel Blake this situation is horribly similar). There's no safety net in this country anymore but no-one realises until they become seriously ill and then they're too ill to protest.

Getting down off my soapbox, my DS also lost his PIP once he stared university. And I can't drive anymore (autism and nervous breakdown but no PIP for me either!) so I have to pay over £500 a term for a taxi.

I’m nit sure what the op said is its preventing them earning a living. But money is tight and they need the pip

op,I think you need to assume it’s gone, sadly, and work out how to adjust. I would appeal but it is vanishingly unlikely it will be allocated, so as you appeal I’d consider this is it and focus also on how to manage.

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Appeal by all means, you have nothing to lose. But he should take it as a compliment that he has done so well, there is no such thing as benefits for being autistic.

My kids get dla and I very much hope that at least one won't qualify for pip. His brilliant special school are great at life skills lessons. I am also disabled and wouldn't qualify as there is not enough impact on what I need help with.

@elliejjtiny you coudl try fighback. No idea re PIP, I have applied as appointee for DD (on DLA currently). Who knows but I have found them helpful.https://www.fightback4justice.co.uk/

Does he not get extra funding from the uni as he has additional needs?

consider asking the hardship fund for grants for his travel

He might get a few points for struggling with handling money. You say he can cook a basic meal, navigate his way around uni and has a part time job so he must have managed to pass an interview. Can he shower and dress himself? I'm wondering where he'd scored points on current system apart from not good at managing his money. I don't think he'd get more than 2 points and I think he needs 8 to get a payment.

OP said her dh often has to take time off work to go to DS? So he’s losing earnings?

But PIP is not about a parents loss of earnings and is not awarded to compensate that ?

Thsts not how pip works though and taking time off work doesn’t always result in loss of earnings.

I think it was a typo in pp post so you have missed the earning potential being lower due to disability. The applicant works a zero hour contract to accommodate his symptoms.

To reduce some of the inequality & disadvantage that disabled people face. Disabled people are still overwhelmingly more likely to be living in poverty.

It costs nothing to appeal….but I don’t reckon you have much chance of gaining points for a man who works and lives away from home to go to uni where he is to manage a uni course

Does it cost to go to tribunal? That's the next step for a family member and I need to start getting my head around it to help them.

There is no financial cost to the applicant, to go to the tribunal, no.

No it’s about the support the disabled person needs. The point is if their parents weren’t taking time off work to support them they very likely would not be able to stay at uni or in a job. They need support so they are entitled to PIP, regardless of who is actually providing the support and being paid for it or not.