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.

I would contact a benefits advisor at citizens advice to appeal. There are ways of filling out the form and using words to describe his difficulties and the level of support he needs that you may not have used. These people are familiar with filling in the forms. There may aslso be advice online in U tube and Tik Tok. There's also a subscriber service called Benefits and Work which is invaluable for these kinds of appeals in using the correct terminology.

I’m an assessor.

It’s impossible to say whether an appeal is worthwhile, without more info (that would probably be too outing).

Where he works, what support it is he has, what he’s doing at university, his demeanour throughout the assessment, hobbies, coping strategies etc will all have been considered.

Pets, children, driving licence all considered too.

RE the communication section - he won’t score there unless he has issues such as a need for hearing aids, a significant speech impediment, mutism etc. Anxiety or social issues aren’t considered in that section.

Previous award is pretty irrelevant here too; the DWP consider age, maturity and learned coping techniques to apply to ASD as someone ages and becomes more independent. They look at the here and now.

It’s possible that the assessor (I assume he had an assessment and wasn’t done on a paper based review) recommended he receives an award, but this was overruled by the case manager.

It’s hard to be of specific help, without lots more detail, but I completely understand why that can’t be provided on a public forum.

My dd lost it at 21, whilst it was somewhat annoying in that she needed help she certainly didn’t qualify for 8 points on the care section or enough for mobility. It may be restrictive but only go into supermarkets when it is quiet isn’t the same as someone unable to shop for themselves. You can appeal but before spending time on it look carefully at the categories and see where you think the points should be awarded, I personally couldn’t find enough (my dd got 4 points which still isn’t enough)

FWIW, don’t place too much weight on YouTube and Tik Tok “experts” advising people to write or say certain things. If it’s not accurate, it’ll get picked apart and used against you. It throws the whole claim into disrepute.

Does he live away from home for university? If he does and he has a part time job then he is doing really well and not needing too much support.

Thank you. He didn't have a face to face assessment. He had a telephone assessment but I did that as I am his appointee. He works at a fast food place within walking distance of home, mostly cleaning, tidying up etc. He has a list and works through it. He does a very good job as he is very focussed and doesn't stand around chatting etc like some of the younger workers do. He has a zero hours contract and it's really flexible so he works the hours he wants to and he can have space and time to decompress when needed.

He lives away in halls at university but we arranged for him to be in private halls where there is more support. He lives next to a massive building that can be seen for miles so he can't possibly get lost. He is studying his special interest so that really calms him as well. He gets support from DSA (which he has said he couldn't manage without) and he also messages me regularly for advice. He can cook really simple stuff like putting a pizza in the oven, ready meals or pasta with sauce from a jar. He struggles with social skills and doesn't really speak with his housemates but he met another autistic student near the beginning and he will sometimes talk to people on his course. He has strategies to cope that I have taught him. He has a lot of dvd's of a tv programme aimed at under 5's that he watches a lot when he feels overwhelmed.

He is fairly hopeless with money and will prioritise fun over essentials. We have said his student loan is for food, laundry etc and his wages is for fun stuff. We still end up with an inevitable phone call saying he has run out of money and can we send him some.

Always appeal. You have nothing to lose. My sons autism PIP came back as zero points but after appeal, he was awarded the standard living component. My daughters application came back as zero points and I am currently appealing that.

The assessor in her case tried to link autism to intelligence (she is going to uni herself) but as you know, it more a difficulty in navigating social situations.

Look up PIP descriptors www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system and re-word each answer to highlight which situation is closest to your sons condition.

Good luck.

Does it cost to appeal.

I think the 'problem' is PIP is awarded for a very specific set of care, communication and mobility needs.

I do understand the idea of pip legitimising / acknowledging a disability because organisations do use being in receipt of pip claim in order to access thier services.

So the fact someone might need a huge amounts of support not coverred by the form is true but there are other protection for disability like the equalities act.

All your appeal could really do is focus your mind on the criteria and think was he wrongly assessed against those criteria and do you have a bit more evidence to go with it?

Thank you. It doesn't cost anything to appeal. I've talked to ds (who as usual was more interested in talking about trains than anything else) and he wants to appeal so we are going to give it a try. He has emailed his boss to get his adjustments at work in writing and he is going to talk to his tutor at university too.

So the money management side is probably the only thing he would qualify for as he can cook and navigate the world without support. He is completing so quite complex tasks successfully - living in his own, getting a job. It might not always be the case as the working world full time might present some difficulties

He sounds as though he’s navigating life quite successfully atm. What does he need financial support with?

Thank you. His PIP goes into a separate account and is mainly used on transport at the moment as he insists he can't cope without a number of bulky items relating to his special interest either at home or at university, even when he was just home for the weekend. So he can't easily get the train so DH has to take unpaid time off work to go and pick him up and take him back again. Also he needs us to come up and visit him more often than most students. But it's mainly time, rather than money. Like yesterday he needed someone to listen to him talk about trains for over an hour. Which usually happens a couple of times a week.

So he’s paying you the money? Sorry I don’t understand how any of that costs him more money? Talking to you and getting picked up by dad is surely free bar, maybe, petrol?

How does he work and attend uni (I'm guessing he lives away from home?) and need the level of support needed to qualify for pip? He'd need a lot of evidence

You need to ask for reconsideration before appeal?

My DD’s was turned down when we first applied. Like your ds my dd went to uni but needed a lot of support to do so, she went to the nearest uni but lived in halls, she didn’t cope well so o would have to often drive to her, help her creep her room clean, do her washing and help her with shopping, she wasn’t able to travel anywhere other than from halls to uni during her first 2 years. We went to reconsideration and managed to get it awarded without appeal.

Yes definitely, we went to tribunal when my ds got 0 on renewal and 0 on first appeal. Tribunal gave him a higher five year award

Whilst a student away at uni can be eligible for PIP, you haven't described anything that sounds particularly like they would meet the criteria, it sounds like it's hard work for you being an unpaid carer & being one myself, i totally get that, particularly when you are doing it from a distance, its exhausting.

The amount of phone calls I have to juggle whilst I'm trying to work, talking my uni aged child through every day tasks/ heightened anxiety/ emergency trips to a&e/ exam prep is exhausting buy that doesn't use PIP money.

What does is

1. An extremely limited diet with very few safe brands, all above a typical student budget

1. Not having the communication or social skills to even be in a private hall so having to find private self contained accommodation

1. Not coping with food shopping 99% of the time, so having to pay for food deliveries, including expensive uber eats when it turns out they have forgotten to eat for 3 days straight again.

1. Needing specialist equipment to help with sleep regulation, sensory regulation & managing medication

1. Money for travel to hospital because they can't navigate public transport so have to rely on taxis

1. Expensive clothing because very few textures are safe

And the list goes on.

So if things like that apply, that's what needs to be clear. The level of impact, the number of adaptations needed to manage & the cost implications of those things. We have to travel far more frequently but that doesn't get factored in, it doesn't get factored in when I have to sleep on a air bed for a week just to make sure they make it to every exam or the amount of days leave I have to use in order to help them keep going at uni, it's frustrating but unfortunately not part of the criteria.

Yes, appeal. Ask for a copy of the assessor's report, where you can see how your answers were interpreted.

My asd daughter got 4 points after a really bizarre f2f interview. She had gone to a specialist needs school and I had 23 separate reports on her, but the assessor basically thought that as she was pretty and made good eye contact, she must be fine.

I wouldn't have believed it if I hadn't seen his report.

Assessor was a physiotherapist who had no idea about asd. Or young people. For example he asked her "do you chat to your friends in the evening on your phone?" She said yes, but she didn't have any friends, just people who she knew at school - they basically sent each other emojis. He of course imagined giggly phone conversations.

It was overturned - she got 12 points.

You have nothing to lose by appealing, but from what you say, it doesn't sound like he should be qualifying for PIP. He is at Uni, living independently, and has a part time job. It sounds like he has been dependent on the money, and wants the PIP for the extra money, rather than it being that 'he needs it' IYSWIM.

The Government are trying to bring the benefits bill down, and under 25s are going to be one of the first to get benefits axed. Not being funny, but it's untenable for people still in their teens to be on PIP or other benefits for the rest of their life until retirement. So any sign that a young person can possibly come off this benefit, and the government are taking it, and stopping their PIP.

I don't mean to sound harsh, but you (and your son) can't really realistically expect him to get PIP for the next 50 years. The earlier/younger he gets used to not having it, the more independent he can be, and the more of an adult he can be.

Your son will adapt, and I said, it doesn't sound like he really needs PIP. (From what you have said.)

How does any of that cost him anything? Do you mean you use his PIP to pay his father to collect him, as so many families do? What have the phone calls got to do with anything? Sounds more like you want/need it than he does.

Definitely subscribe to the Benefits and Work guide to PIP. It's a lot better than randoms on the internet giving you advice.

For example, your DC can't cook to.the necessary standard to score 0 points based on what you said. You need to write about his ability to cook.a simple meal (meat and veg) from scratch in a reliable, repeatable and safe way. Boiling pasta and opening a jar doesn't count as cooking a meal.

Communication issues do need to be quite severe, but if he only talks to a few well known people, that might suggest serious communication problems. My DS has situational mutism, so he can't even talk to the assessor, or ask directions, or order food... But you'd never know if you see him online playing Minecraft that he struggles to talk.

There are loads of other examples. But also remember that as he grows up and gains skills he may well age out of PIP. My DS' next assessment is at age 21 and he's working towards life skills that would move him down from higher rate to standard rate care with the idea that it's actually quite a good checklist of skills to try to learn.

He’s not living independently if op and her dh have to keep going to help him out? Living in halls isn’t exactly independent, he maybe getting help from uni and DSA? My dd loved in a flat with other disabled students during year one, one had a love in support, others had mentors and there was always someone on the front desk in halls to help if any students need it. It costs money for OP’s dh to take time off work to drive to and from DS, it costs them money to support him as it’s time where they could be earning money? OP’s ds may have issues around food? He may struggle to cook in a communal kitchen? So he may need to spend more money on pre prepared food or take aways? He may struggle with public transport and need to pay for taxi’s?

PIP is there to help people be more independent? By paying for things like taxis and support?

Many people on PIP work.,many live alone with support.

PIP money goes into an account controlled by me, as I am his appointee. We have a little car that can fit 4 of us in but not much else and a big van that can fit all the dc and their various stuff. When ds was on dla, the money went into the family pot but since he's been on PIP we are careful to only use the money for things for him that he wouldn't need if he wasn't autistic. So if he wasn't autistic he could be transported to and from university in the little car which is cheaper to fill up so we used his PIP for the extra cost of using the van. He has a phone with a tracking device just in case (for his privacy we would only use it if he was uncontactable, not to be nosy. We haven't needed to use it so far but it gives me peace of mind to know it's there). He is in private halls of residence which cost more but there is more support and closer to the university.

Work are aware of his autism and he is allowed to pick his hours to suit him. It's also only 15 minutes walk away. He can't cope with buses (he can mostly manage trains) so he is limited to where he can work. His boss always gives him plenty of notice of any changes at work.

A lot of it is recognition for DS. He felt like by giving him 0 points it was like the DWP were telling him they didn't believe he was autistic which really upset him, even though I told him it didn't work like that. He didn't get much support at school, which really bothered him and when he had the assessment for DSA he thanked them for listening to him and helping him because he hadn't had that at school. I found that quite sad really and it made me want to fight for ds to make sure he gets all the help he can but also to show him that I am on his side and doing the best I can for him. I was diagnosed with dyslexia aged 20 so I know what it's like to struggle along, wondering why your brain won't let you do stuff other people can.

DWP aren't saying they believe he isn't Autistic. They're saying he doesn't meet the threshold for an award

What professionals supported the application?
Nothing you’ve mentioned appears above and beyond normal parenting.
I have a son at uni and he gets dropped off and collected as most do these days. Young adults are just not as independent as years ago. My son can’t work but he doesn’t have pip either as he’s at uni so it’s fine maybe when he finishes uni it’ll be different.
My DD has pip but it was well supported by lots of professionals. CAMHS, social care, education etc