ASD teenager PIP declined at 16 and panicking about UC/work commitments/school run

[NeedAbout36HoursADay]

DS turned 16 earlier this year. He is autistic (diagnosed at 7), has an EHCP, and attends a specialist school 12 miles away. So I drive a 24 mile round trip twice a day, and it's not a fast 24 miles, it's country roads with a bottleneck junction in the middle that can't be avoided! So that usually takes well over an hour at either end of the day. Until the end of last term I got a personal travel budget to contribute to the travel costs but I'm still waiting to hear if I will get help now he is 16 because post 16 transport assistance is discretionary.

I am a lone parent and I gave up my job when DS stopped being able to go to mainstream school. He was out of education for some years before this school place was found - he was incredibly lucky to get it, it's changed his life. I am now self employed and on a low income, but I've built a reasonably successful small business which I'm proud of and has meant I can work flexibly round DS for years. It does bring in some money but I am heavily topped up by UC and carers allowance. DS has had DLA for some years, middle rate care and low rate mobility, but...

...when he turned 16 I claimed PIP for him (I'm his appointee) and I've just had a letter telling me the claim has been declined. Obviously I will appeal. But for the time being this means we are, excuse the phrasing, fucked.

Carers allowance will end immediately as will the disabled child element on my UC. But the even bigger problem is that I'll now lose carer status on UC and be expected to start working and earning 35 hours a week immediately as I'll be subject to the standard work commitments for someone with a 16 yr old. I literally cannot do that, not as well as the school run and the fact that DS can't be left alone for hours on end at weekends or evenings or the school holidays. He isn't able to do basic self care without me being there. He needs active support pretty much all day with every basic task, he can't do the stuff you'd expect from a typical 16 yr old at all.

A term time job within school hours would be the obvious option (I'm not qualified but I guess could wing it as TA with the experience I have from parenting DS) but I can't drop DS off til 8.45 and then I'd have to get to work, so wouldn't be able to start til 9 at the very earliest, and then would have to leave early to be back to get him at 3.20. So even as a TA I wouldn't be able to do the core hours.

There's no wraparound care at the school (special schools pretty much never offer this). A taxi would cost £60 per journey so £120 a day. There is no closer school he could go to - the only two schools in our county who could meet his needs are this one or one 45 miles away. There are no buses that go to the school, as in actually none, not just infrequent or inconvenient ones. I don't really know many of the other parents as a lot of the pupils go in a taxi (normal for special schools) but I'm not aware of any who live near enough to us for lift sharing to be a possibility. I will be investigating this of course! But cannot rely on it. Oh and no, moving isn't really an option, anywhere closer to school would be a much more desirable (ie expensive) area! We are lucky to have an affordable rented home and I can't imagine we could find anything else I could afford that's in a more convenient location.

I just don't know what to do 😭 and I'm massively panicking right now. Am I likely to get a work coach who will be a bit flexible and understanding? I'd bloody love to get a full time job tbh and not have to feel slight shame every month getting UC, but it's just not something that's going to be possible for the foreseeable future.

That's ridiculous that he's been denied PIP and that the decision has such a cascade of problems for you. I do hope it gets overturned and backdated, but in the meantime .... If you are looking for a TA job, is it possible to ask if one is available at your DS's school (perhaps explaining the position you've been put in as a result of him turning 16)? At least the school might have some suggestions for help, such as knowing another student nearby who your DS could rideshare with. Having such cliff edges in adult social care is no way to ensure everyone who needs it is getting help.

@NeedAbout36HoursADay the first step is to request mandatory reconsideration. You need to get the decision letter and go through each sentence that they've written. For each sentence, look at what evidence that you have that it isn't true.

Did you keep a copy of your application? Did you fill in in thoroughly (a lot of people get caught out by thinking that it's obvious that their child needs PIP, so don't put in much detail)? Did you include evidence such as his EHCP? Did you make it clear that he attends special school?

Did you fill in the form yourself? It might be worth getting help from the CAB going forward.

obviously this decision is bollocks, if he’s in special school and is as you describe.

don’t make any major changes.

apply for mandatory consideration which is the first appeal stage. I gather documentation from DLA does not transfer over so was all his documentation submitted with the pip application?

speak to work coach / whoever about hardship payment or a loan as clearly this is a mistake.

they’ll backdate pip (mine was backdated six months) but it’s not a fast process

Can you afford an occupational therapy assessment to help provide supporting evidence? It’s a ridiculous situation. DS was denied PIP at 16 and we were going to tribunal but DS refuses to attend as he thinks he doesn’t need it. No point in sitting at a tribunal with DS contradicting everything!

Thank you everyone. I was very scared to post in case I got the benefit bashing froth brigade! So the support and helpful replies are so welcome

@Lougle yes I've got copies of the form and will start the mandatory reconsideration process asap. I sent his EHCP and made clear he is in specialist provision. But I suspect the issue is lack of medical evidence - he is never ill, and because ASD isn't a medical condition he doesn't see any medical professionals. The reports for the EHCP are quite old now, they've just never been re-done as everyone at school and his LA caseworker all agree they're still relevant!

@Octavia64 I did get asked for permission for his DLA claim/evidence to be made available to the PIP claims team when I first rang up to claim. So they should have it, I think. But that doesn't mean they've read it 😣

@Livelovelaughfuckoff that is a very good idea actually and something I could look into, except that I don't know how much he will cooperate. He absolutely hates being under observation 😬 and has a tendency to overestimate his own capabilities!! But I guess an OT experienced with young ND people could handle that and see through it. If I'm his appointee does he still have to appear in person if it reaches tribunal? That will be a total disaster as he will just nod and smile and say he can do everything they ask him about. Which he can't, but he isn't really very aware of his own limitations, plus will say whatever he thinks people want to hear to get out of an awkward situation as fast as possible...

Was coming on to say this. It may also be worth reaching out to IPSEA.org as they may have someone who can counsel you on how to appeal. It may be that you did not labour enough the fact that he is not ‘mobile’ - this does not need to be about physical ability but about the inability to use complex public transport networks unaccompanied and thus, the need for parent taxi-ing or use of a trusted taxi service etc.

When we did my DD we laboured this, but we also pointed out that yes, she is physically and intellectually capable of booking a meal, but needs supervision because a) continually fails to switch hob off, creating a safety risk for other household members b) unable to be relied on the actually go to the supermarket and buy food unless prompted/supervised, c) unable to clean and look after kitchen or monitor use-by dates of open foods/keep fridge hygienically clean, emptied of rotting fruit/veg etc - ie unable to live unsupported at home.

Not sure if you were that blunt and literal as it is easy to say ‘yes’ are physically capable of preparing a meal going to the supermarket, without explaining that it has to be supervised or monitored and managed?

For the mandatory reconsideration stage I got a letter saying please don’t pay for new reports etc we are going to re look at the paperwork.

it’s very very common that the decision just gets reversed because the decision maker did not have/did not look at the paperwork.

Just out of curiosity as to how it works. But why do you lose the universal credit side of money and carers allowance aswell ? Is he still in full time education? Or does that not change anything?
I hope the appeal process doesnt take to long .

Why is his dad not paying anything?
I get angry with men when I see posts like this. It's so easy for them to just leave and let the woman/state pick up the bill.

PIP essentially is about what he can/cannot do. The less the claimant can do/the more help they need the points score should keep going up.

How many pints did he actually get for (a) Daily Living and (b) Moving Around?

Request an MR and get all the paperwork including the report from the Healthcare Professional and whatever the Decision Makers reasoning was.

Go through each activity and the relevant descriptors identifying where he's been underscored. Explain where they've got it wrong and how many points you think he should have got.

If you can get help from CA or similar 'expert' then try that.

Disability Rights UK and Benefits and Work have good walkthrough guides.

As to Work Related Requirements explain exactly what your issues are and ask for an Easement while your son's PIP MR is processed.

I’m an OT I can assure you we’re pretty used to non cooperative young people! It can often help highlight some of the major issues actually when you see how much they struggle to engage with the assessment.

Look for a children and young persons OT with experience of ND. You might be able to get a GP referral for an NHS one but a private would be more comprehensive and quicker. You can search for private OT’s on the RCOT directory.

https://rcotss-ip.org.uk/find

I know I didn’t go down the tribunal and private report route for my own son but realistically he would probably only get lower rate and the financial implications are not as severe as they are for you. He’s also now much more independent these days and can get public transport which has been a game changer for my ability to work more!

Hope you get this resolved op. This sounds horrendous

I can’t add anything to what other people have suggested but want to say I hope you manage to get the support you need for both you and your DS xx

We didn’t attend the tribunal in the end but it would have been over video link not in person. Did he have an in person assessment or phone assessment for PIP or was it all through talking directly with you? I would get some advice on whether he is expected to attend. An OT report that can reflect that his communication challenges are a barrier for attending and communications in appointments would be helpful with this.

With UC there is discretion to remove or reduce work commitments even though you won’t be eligible for the carer element.

You could look at your LA’s Crisis and Resilience Fund.* *Particularly if the housing element doesn’t cover all of your rent as it can fund housing payments (what used to be called discretionary housing payments).

Are you receiving single person discount on your council tax? Have you also looked at council tax support/reduction?

Have a look at your LA’s post 16 transport policy. Check that it is lawful because a lot of LA’s post 16 transport policies are not. LAs don’t have the same transport duties as they do for CSA pupils, but the LA is still responsible for the provision in the EHCP and the placement and if the only way to provide that is via providing transport, then you can also go down that route.

In terms of PIP, don’t rely on PIP seeing evidence you sent for DLA. If you think the evidence adds to your case, send it to PIP.

Remember, for PIP, in order to be able to be considered able to do a task one has to be able to do it reliably. That is safely, to an acceptable standard, repeatedly, and within a reasonable time frame. Some say they can do something when they can’t if you consider these factors. For example, if DS needs reminding to turn the hob off, he can’t do the task unaided. Some also don’t realise what counts and what doesn’t and go off on tangents about what isn’t relevant e.g. shopping for food isn’t relevant to the preparing food activity, washing up afterwards, carrying for to the table… so it is worth taking so time to read what counts and what doesn’t.

It also sounds like the EHCP may be poor. Once you have sorted PIP, you may want to look at improving that.

@Livelovelaughfuckoff if you were appointee, had you appealed, DS didn’t have to attend to attend a Tribunal.

Because you only get carer and disability benefits/status if the person you care for gets a qualifying disability benefit. With DS not currently getting PIP, then as far as the DWP are concerned he isn't disabled anymore. So I don't qualify for carers allowance even though I'm still doing just as much caring as I was last week!

@AnonyMumAuDHD I think the problem might be this. A lot of my answers were "yes but XYZ" because that is the truth. But I should have been saying "no because XYZ" shouldn't I... I just didn't want to feel like I was lying or misrepresenting. He is capable of making a meal for example but only with me standing there reminding him to, as you say, turn the hob off etc. He isn't capable of noticing he is hungry, deciding to make a meal, sourcing the right ingredients, preparing it safely, tidying up afterwards. But he can, technically, make himself a simple meal if I'm there prompting every step. Or he will feed himself by literally eating dry bread (which he loves ).

@Bromptotoo thank you, I will spend this evening reading it all properly, I didn't actually notice a points breakdown but TBF I have only skim read the letter then spent the next 2 hours crying so need to take a better look when I've calmed down!

When we were phone about the original date I said we couldn’t attend as DS wouldn’t be available and said I could attend without him but they came back to me and stated he needed to attend. I don’t know if that’s because he was present for the phone assessment and was spoke with directly for most of it and I was just there to support?

i dont know.
But how is he academically /getting on at school
is he likely to pass any exams/become independent from the next / years school?
As if i were desperate I probably would just stop taking him depending on how much difference it is making.
i would then work from home.

It does seem crazy though as surely most kids in sen schools are unlikely to work/full time etc and that funding isnt there for transport which i get its very expensive but then the ehcp covers them to much older than 16

Unfortunately, you were misinformed. DS didn’t need to attend a Tribunal hearing if you were appointee. Some do, some don’t.

Even the phone assessment, you could have spoken for DS. Sadly, some assessors can be very pushy and misrepresent this. Some even go as far as threatening to end the assessment, wrongly.

I remember a different post where someone said for PIP application you have to imagine dc on their absolute worst day, and then make that the thing in your mind when you fill in the form. Avoid being apologetic and feeling guilty and thinking, “well I suppose technically he can do that to some extent sometimes so I’ll say yes even though in reality I know he needs support and supervision all the time.

Thanks. His EHCP is not great really but because his school are excellent it's never really mattered before. The school go over and above to support him, he is doing amazingly there, and I've just taken it as a win and not gone into battle over the EHCP.

The LA line is that because I can take him (as in I have a car and am happy to do it), then that's how he gets there and they pay me mileage. And again up until now that's been fine because it's just part of being his carer, to do this sort of stuff. But if I'm not (on paper) his carer any more then the whole thing falls apart!

Good luck, OP.
Once you get this sorted (and you will get this sorted, no question), what's your long-term dream for DS? 18 is going to come around shockingly fast, so if you are forced to get all your ducks in a row now for PIP reconsideration, it's worth thinking about DS's assisted travel for college or living support.

Thats a ridiculous system. So when the appeal hopefully goes in your favour you then have to re apply for the others?

Wouldn’t surprise me. The assessor stated in her report that because he plays video games he’s likely capable of reading and following signs when travelling alone 🙄

If I’m honest by the time tribunal came round I wasn’t in the head space to deal with it. Plus it was well over 18 months between turning him down and a tribunal date and I’ve directed the time in working on his independence and increasing my own earnings.

But agree the OP should make sure she knows her rights.