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.

@IMissTheLittleBluePackets no it doesn’t cost anything. For us when he got zero points it was like a slap in the face almost saying he was pretending to be autistic.
The second appeal also had zero points and that just made me angry. If they had reviewed and given him some points but not enough to qualify we would have left it. But zero was just ridiculous, like they hadn’t even bothered to read it.

So we went to court, nothing to pay so nothing to lose. We had no more supporting evidence as he was out of Camhs and other services, so it was just really what I had said on the paperwork as his mum.
But we took ds to court and they talked to him, I hardly spoke and I think they just saw in person how much support he needed. So they awarded higher and for five years.
However, it’s not quick, it took over a year and that meant no pip and no carers allowance for me for 16 months, we really struggled without that money as obviously his needs still needed supporting and we had to fund without assistance. It was back paid which helped but it was so stressful at the time.

DD is at university in private halls. She has a room that's en suite, it's almost £10,000. She couldn't cope in the cheaper accommodation and shared bathrooms.
I regularly do an eight hour round trip so she can have two nights at home. That's at least 16 hours of driving for barely two days.
DD doesn't work, she couldn't manage it. I spend long hours talking her down daily when she gets anxious.
She eats the same few bland foods, and rarely cooks, maybe some plain boiled rice. Everything else 'cooked' has to be able to go in the air fryer. The most complicated would be to cook ready cut/prepared chicken breast. She couldn't touch it with her hands. She eats it dry in a wrap with raw carrot sticks, spinach and cucumber.
Yesterday I talked her round Sainsbury's, the whole shop. It took more than an hour.. Trying to encourage her to buy food.
All of the time I was explaining what to buy, coaxing her to get some wholemeal rolls, ice cream (for extra calories) and even milk and cereal and making sure she bought kale, spinach and other healthy stuff I know she'll eat. I hate food waste but tell her it's ok if she can't eat the whole bag (they are large), almost begging her to buy so it's in her fridge when she decides to eat.
I know DD needs extra support, but it never crossed my mind to apply for PIP. I don't believe she would score enough points (I have a life limiting condition and receive enhanced on care and mobility and have been through the process several times).
I wouldn't let DD to pay to come home. I drop everything when she needs me to go there or those hours of calls. I don't view it as much more support than I offer my other DC. From what you describe, the level of care he requires now wouldn't reach the threshold for care or mobility.
They are getting stricter. The examples you give of preparing a simple meal and moving around/planning a jorney. You think he can't do this, then go on to explain that by their definition he can. He does cook basic meals. I was told if you can make a sandwhich and a ready-meal, it's enough. He gets on a train and walks to a job on top of living away from home and being at university.
His condition can still be recognised, but the state can't continue to pay this benefit to everyone that applies.

I understand what you're saying about validation of his difficulties and your carer role, but I do think there is something wrong with the system if your son qualifies and we have to find a way of getting/keeping the welfare budget down.

He is in receipt of DSA for specific things related to uni which is great.
Other things you describe don't seem to have a huge financial impact on him.

He sounds like he is doing fantastically and you should be proud of how he is navigating life.

At least a quarter of people are considered disabled and I suspect it would actually be far more if we were better at diagnosing people. 10% of people are dyslexic and up to 14% screen positive for ADHD alone. Add in everyone that has diagnosed/ undiagnosed ASD, dyspraxia, Down Syndrome, chronic health conditions and other neurological differences and you can easily understand how disability is nowhere near as rare as many people assume. By the age of 85 the majority of us will be disabled.

Disability can undoubtedly be expensive and a driver of poverty but this isn't always the case. Remember that the richest man in the world is also disabled. The world isn't black and white.

In this context, we need to be sensible about allocating what money and resources we do have to make sure that those in most need get the support they need. OP's son is doing great. Lots of students struggle to get a job, can't cook well and are crap with money. They also struggle to make friends and integrate. I know quite a few young people living a far more restricted life than OP's son and needing more parental support than aren't recognised as being disabled. I think OP is comparing her son to the best case scenario of a fully independent, thriving 19 year old but statistics show that lots of young people aren't living like that and still rely heavily on parents and have major struggles. We simply can't afford to pay her son extra money because she has got used to it and they want validation for his condition.

He’s living a normal life- job in a busy environment, uni, socialising.

My dd receives PIP.
We applied when she was 16, and newly diagnosed with autism (and probably ADHD)
I work part time so that I am home to support her emotionally. But my (hours and hours) of support doesn't count in terms of PIP assessment.

I had to fill in the PIP form and sign to say I had done it, she couldn't. I had to have the phone conversation with her sitting beside me, she wouldn't talk to the assessor on the phone. At the time she was doing GCSE. She is now doing A levels.

What we put down was:

• on a bad day, she would not eat unless I took her food and put it in front of her.
• when preparing food if somehting goes wrong, she panics and abandons the food and doesn't eat (eg the butter has run out)
• she doesn't shower unless reminded and even then only 2 times per week.
• she can't do lots of things without someone with her to support (emotional support) so no cooking, no cleaning/tidying, no shower, no washing clothes unless I am there with her.
• She finds public transport overwhelming, and struggles to take the bus to college. If the bus is delayed or goes a different route she panics. She can't manage a new route unless someone takes her on it first.
• when out on her own eg at the shops, if the bus is cancelled she doesn't know what to do becuase she panics, goes mute and forgets everything (eg that she has google maps on her phone)
• she goes mute when distressed

With those things she was awarded PIP including a travel amount.

But in the last 2 years, she has learnt to drive and become much more independant, because she feels safe in her car compared to on a bus.
She is learning to cook
She is slowly taking better care of herself
She is able to use apps as her body double instead of me and so doesn't need me there for everything
Because she is generally less stressed and unhappy at college compared to school, she is gradually learning some of these life skills.

She is 18, but will delay going to uni for a year to improve her life skills (at the moment she still can't handle wet washing or dirty plates at all). When at uni she will need DSA, and she will ask for specific accommodations both in living (ensuite bathroom, she can't cope with sharing) and academic, (rest breaks and quiet room for exams.)

But I think that by the time she goes to uni, most of the things that got her PIP will have gone, and she will no longer receive it. I don't think she believes me when I tell her this. (and I don't think she shoudl receive it at that point either)

I know that at uni I will need to visit every month initially, to help her reset and help her stock the fridge. I know that she will struggle to cook and eat and she will definitely not be able to hold down a job and study. But she will no longer need PIP.

@steppemum It could go either way though, and she may still qualify for PIP, in the future.

It’s not works/studies, it is because he is successfully studying full time at university AND successfully holds down a part time job AND lives alone with no one doing self care other than him. He takes public transport alone and successfully. He manages his money. He communicates the basics alone. He even goes to social events without social support.

Its the sum of everything he IS doing.

And the support needed has to reach a certain very high threshold within very specific categories.

It is not as simple as being disabled and requiring support means being entitled to PIP and/or DSA.

I think it is going to get harder to claim pip as so many people are claiming. My child is slightly younger but couldn’t have a job, or communicate freely currently. I think I would be pleased if they were managing how your son is. I expect the pip to reduce in our situation and possibly be nil as they get older. It is exhausting with the extra communication and organisation.

He's not doing it by himself though. Last month I had to send him clean socks in the post. And I've got a massive long list of the things the university is supporting him with.

He's doing it by himself in the sense that he's not needing to live at home or with someone supporting him 24/7.

If he can work (albeit part-time), study, travel and look after his own hygiene etc, even if that involves asking you for support, he won't qualify for PIP.

My mum sent me care packages when I was at uni too. That’s normal.

Sadly that’s still doing it on his own I’m afraid, he won’t get pip for clean socks or what rhe uni does, it is the entirety of what he does that make him not eligible;

and he’s doing fabulously well, he’s studying at uni independently, living alone, working.

i know it’s hard if you need the money, and of course appeal. But I think you need to kinda accept the money isn’t coming any more.

@elliejjtiny This is not of any help to your thread but as a fellow parent of a train obsessive, I just wondered what course he is doing that fits with his special interest?

It’s difficult. I get it for MH and I’m also ASD but I’ve not mentioned that on my assessment I don’t think.
You’ll need to evidence things he cannot fo unaided. So for example, he can travel by train. I can’t manage that, I don’t leave the house bar maybe twice a year accompanied by a family member to attend an appointment . I would not manage any form of public transport, even accompanied.
He can attend the supermarket but only at quiet times. I cannot attend any shops at all so if I’m alone and needed something, I would have to order it. These are the sort of things you need to show.
I need help with medication due to previous overdoses. Knives are locked away for suicidal reasons so I need somebody around when cooking.
I have actually had my driving license returned but I don’t drive due to hallucinations .
I provided psychiatrist reports, prescriptions, evidence of hospital stays, gp appointments, MH visits.

Sorry, he's not studying trains, although he would love that. He is studying music which is his other special interest.

That sounds very difficult for you, but none of those things apply to op’s ds.
He can live independently, and is currently at uni.
I don’t see how having to collect from and drop him there is any different to any other student who doesn’t drive / doesn’t have a car in their uni city.
The support he’s getting from uni is irrelevant in a claim for benefits. He’s already getting it, why does he need compensation as well?

But care packages are normal…he is at uni on his own ….very much doubt he will get pip

To directly answer your original question , no, I don’t think you should appeal.

your ds sounds like he is doing brilliantly. I have recently applied for my dd so I am very intimately acquainted with the questions.

From everything you’ve said it sounds like 0 points is about right for your son, he sounds like he’s doing really well. There are many parents who can only dream of their children going to uni, being capable of a part time job, living independently etc. How wonderful that he’s achieved all of this.

Please don’t appeal, the system is already dealing with huge backlogs, don’t clog it up anymore.

I complete PIP forms for people. I can’t see that there could be any points that could be added to the descriptors in any meaningful way. Many of our kids cant or cope or don’t suit moving away from home for university, either with or without disabilities. I know my eldest would never have managed to be in noisy halls with non stop partying and lack of sleep. So he lived at home for uni and commuted in. Got the support he needed from us here.

I appreciate what the OP is saying about her helping her son in various ad-hoc ways.

However, I think the perception of the level of help someone needs in order to meet the PIP criteria is skewed. You can need help to a certain degree (which is what it sounds like the OP and the uni are doing) whilst still functioning adequately.

You can wonder “well how would he get on if the help was removed?” but the probability is that he would still function adequately. Not necessarily thrive, or have a great life, but still manage adequately. That’s all that PIP look for - adequate living. He is getting himself to uni lectures, has attended (and been successful at) job interviews, has made some friends, works in a public-facing role.

If this claim had come to me, based on what I’ve read from the OP, it would’ve been zero points throughout.

I know that’s not what you want to hear, but I’d be amazed if an appeal were successful.

@elliejjtiny, I hope I’m not posting what someone else already has, because I’ve only skimmed the thread.

1. Ask for a copy of the report and at the same time ask for a mandatory reconsideration (assuming you still can as I did this for one of my DCs some years ago), pending you writing a response to the report. The reason for this is in point 3.
2. Respond to the report highlighting the areas you disagree with, and why (indicate where your DS has additional support along with any evidence you have for it). Don’t be afraid to say ‘see section 3 part a’ - my DC’s decision revolved around a couple of things which were ludicrous and mentioned repeatedly as reasons, plus a diagnosis named by the assessor which was true but had never been given the official name before - go figure!
3. If things don’t go as planned, you can then progress to appeal, so you get a double bite of the cherry, so to speak.

If you don’t feel confident to do this yourself (I suspect you can, as getting any form of disability benefit for a child is a nightmare), then your local Citizens Advice Bureau might be helpful, or it might be worth reaching out to any body who helped when DS was younger (social worker, EdPsych, other bodies). If you have copies of previous forms, look at them and reiterate the statements made there if they still apply.

Don't forget that any form of reminder or help to do something (like wearing clean clothes) counts as using a tool to help with daily living. Likewise, the mobility element revolves around finding the way in unfamiliar as well as familiar territory, so the thing here would be things like needing to use an app to help (like Apple Maps) to find somewhere nearby. Being distressed and unable to focus would also be a factor here too.

Be sure to mention the impact on mental health and the likely consequences going forward if something goes wrong in both categories.

I’m sure you don’t need reminding that talking about worst-case scenarios are what you need to go with, as that is the most likely situation for your DS (meant kindly and respectfully), but I’ll say it anyway, just in case.

Wishing you all the best.

If he doesn’t get awarded PIP upon appeal now, that doesn’t mean he wouldn’t be eligible in the future, when his needs mean he copes with daily life less well than he does now - when he doesn’t have the support of tutors, and a supportive employer, and a base and routine which he can navigate with the techniques he’s using now. It’s not a one-time thing, that if PIP is denied now he can never claim again.

If you and he think he’s struggling so much, even with you sending him care packages, going to visit him / bringing him home to you regularly, being on the phone with him several times a week, helping him through his routines etc - is university the right place for him at the moment? Even if his PIP appeal were to be successful, that’s only going to provide some additional money for you to offset the costs you say you have (and are already accommodating) because of his autism-related needs - it isn’t going to change the fact that you and he don’t feel he’s coping very well and is so far behind his peers. Would deferring his studies be an option, with some focus in the meantime on him developing emotionally and socially as a young man without the additional pressure of also having to study and work?