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.

It is worth asking the school for a letter to support a mandatory reconsideration.

While DS was CSA, the LA should only have paid mileage instead of arranging transport themselves if you agreed. They couldn’t force you to accept mileage instead. Post 16, duties are different. This is why you need to look at the transport policy. Ultimately, if DS can only be provided with the provision in the EHCP if the LA provided transport, you can go down that route, but it often takes parents forcing the LA’s hand.

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

As you have realised, this is the problem. Although not everything you list is relevant to preparing meal, so definitely spend so time looking at what counts.

PIP is based on the majority of the time. Don’t make out every day is an absolute worst day if that isn’t the case.

The video games doesn’t surprise me. I have read a lot of reports and some really are laughable.

That is terrible advice.

It would mean OP's son having no access to education and socialisation which is a negative no matter how academic he may or may not be. School is about more than just academics. He will likely also get some of his therapies there such as speech, OT, physio etc.

How would OP work from home with a disabled teenager who needs also to be supervised and can't do things without assistance?

OP needs to fight the decision as it is clearly incorrect. Not pull her son out of education.

@Greaded @Deafnotdumb He is actually doing very well academically now he has the right support (probably another reason he wasn't seen as eligible for PIP though because you can't be clever and disabled, obviously 🙄). The plan is for him to take his GCSEs this coming academic year (he should really have taken them this year but missed so much school over the last few years that this wasn't possible) and we are hopeful that he then do 3 A levels and be able to go to university - obviously with significant support, and the likely plan is that we will move closer to his chosen university and he will continue living with me while he studies. I don't see any reason he can't work in future, not in anything customer facing mind you 🤣 but he is definitely going to be capable of working if he gets qualifications that will get him into the right sort of role.

Not that "capable of working in future" should be the bar for whether someone gets an education or not!! Even the most severely disabled young people deserve and need an education that allows them to realise their potential and to learn ways of interacting with the world. People shouldn't be chucked on the rubbish heap just because they might never get a job FFS.

This won't help you now, but this was in part us 18 months ago. PiP refused, mandatory reconsideration refused. Appeal refused.

I earn just about enough with UC top up but it was hard. And I've managed to retain the travel budget so far. But if anything changes and when he ages out of the child element of UC, we'll be royally f*cked.

Ds turned 18 3 weeks ago. 2 days later I won my tribunal. So we've just received 18 months of pip back pay and I await the disabled child element and carers element of UC backpayments.

This is life-changing for Ds but it shouldn't have been so bloody stressful until now. They really count on you not pursuing it to tribunal.

ETA - my DS is also technically academically able but due to being out of school for several years and needing to take it very slowly at the brilliant little school he's now in, he's been doing GCSEs gradually. He's going into year 14 with 4 GCSEs , one more to take next year. Then it's the struggle of what's next.

Haven’t read the full thread (nearly out of spoons today) but look up Ella Support Loop - uses ai to help with PIP & EHCP forms and is really really helpful. Best of luck!

Please don't panic — I would definitely challenge the PIP decision and get some welfare-rights advice before accepting that you suddenly have to work 35 hours a week. His care needs haven't disappeared because he's turned 16, and his EHCP, specialist school placement and the level of supervision and support he needs are all important evidence. I'd ask for a mandatory reconsideration of the PIP decision straight away and speak to Citizens Advice or a specialist benefits adviser. I'd also be completely open with your UC work coach about the reality of your caring responsibilities, the school run and the lack of suitable transport. They should look at your individual circumstances rather than simply expecting you to find a standard full-time job. I'd also keep pushing the council about post-16 transport because his specialist placement and lack of public transport sound very relevant. Most importantly, don't feel ashamed about claiming UC — you're caring for a young person with substantial additional needs while also running your own business around him.

I think I would draft a letter of appeal and address each of the questions and redraft the answers stating up front that you feel that you did not emphasise the issues enough because of the way the were phrased?

Re-answer them with the ‘No, whilst they are cognitively and physically capable, in practice their executive dysfunction means that they cannot do this independently or without supervision. Allowing him to do so, puts the safety of other household members at risk.’

Take a breath, many people manage to appeal. But really can suggest speaking to the NAS, your local carers support service and IPSEA or citizens advice.

Oh I’d absolutely ask for this to be reconsidered
My youngest is disabled , learning disabilities and ASD .
To cut a long story short , you have to be completely honest but also describe what they cannot do , everything they need assistance with and describe their worst day .

Personally, I wouldn’t be including DS is physically and cognitively able, but… In terms of what many will read it is the same as saying ‘yes, but’.

It’s what we put for my DD.

I didn’t want to misrepresent her as she is bright and went to uni (for a year couldn’t cope, even living with family) and I knew that she would be interviewed and they would see a very clever individual - it can be hard to marry that with the fact that she is utterly incapable of looking after herself, of organising her washing etc.

She lived alone in a flat for 4 days and managed to block the kitchen sink. My Dh or I had to spend several days a week living with her to unblock it, take the rubbish out, clear out the rotting food. On some level it just doesn’t seem to register with her and she has been known to just shove mouldy bread in the back of a cupboard rather than deal with it - meaning we are left with trying to determine the source of strange smells weeks later.

We don’t understand why a person who can write a complex essay on ancient history, is completely unable to empty a bin, but she has OCD and cannot physically look at or handle a bin or feminine hygiene products etc.

So we were very clear that she is neither stupid (academically brilliant in fact) nor is she physically incapable, but she has Autism related dysfunction that makes her a hazard to herself and others if left to her own devices.

@AnonyMumAuDHD it is great that it worked for you. However, some will read it as OP’s DS being able to complete the activity like they do with ‘yes, but’. It is possible to give accurate information relevant to the activity being written about without doing that.

I went to tribunal and actually it increased over what we had with dla. Mandatory reconsideration is the first stage then appeal but you need documentation to support the claim showing the points they awarded (or em rather didn’t award) is wrong. The other consideration is that points for mobility are separate so could use public transport (even if he doesn’t and you prefer he doesn’t) he won’t qualify.

Try and get evidence from someone at school. External evidence from someone who is not the parent makes a big difference.

And as you said, you need to stop writing yes, but. The answer is no, if he can't do x y or z on his own.

The CAB are good at helping people fill out the pip forms. They know what is relevant and what is not. Things about shopping and cleaning up will simply be ignored because they are not on form. The question asks can he cook a simple meal. Try to focus on the exact question. I know shopping, looking to check if food is in date and clearing up after himself is important but the DWP don't care about this. Also if you can't take your DS to school and his special school is named on his statement then ask LA about a minibus or taxi for him.

Keep a 14 day diary evidencing what support is given

Does he have involvement with any other agencies eg social services, youth groups for disabled etc get their evidence

This is so ridiculous and shows the issues with the system.

He should be due a social care assessment - ring up the pathway to adulthood team or transition to adulthood team for support.

I know shopping, looking to check if food is in date and clearing up after himself is important but the DWP don't care about this.

Shopping and tidying up isn’t considered for Activity 1, but checking dates can be.

DS lost his PIP because he can use a microwave and google maps. Apparently this makes him capable of cooking and traveling independently. Many people with an autistic child will know that this is just not the case. He can't cope with shopping for food or taking public transport alone and he panics in strange places without support. We never did get it back. I'm going through it all again with his younger brother and I just ran out of steam to fight it.

If it helps whilst this goes to appeal, if you were to change to Paye work then if you earn £991 a month you won’t be asked to increase your hours.

I've just been through the DLA to PIP transition with my autistic daughter. The scoring/assessment is really really unsuitable for the sort of needs she has - it just doesn't cover a lot of the support I have to give her.

I went through the scoring criteria to work out which criteria should be applied and then wrote my answer to demonstrate how she meets that criteria - similar to how with a job application you want to make it easy for the person looking at it to see that you meet the requirements of the job. Looking at the language used in the scoring criteria is helpful as well - there's a difference between them needing direct help/being in the room with them, and supervising less directly. This feels a bit like cheating or gaming the system, but as long as you are trying to be honest, it's about communicating in the language the system uses.

I did get higher level PIP - I think possibly partly because there's enough objective external evidence of her level of need (CAMHS involvement etc).

It's really hard because there's so much public discourse around benefits claimants, the 'overdiagnosis' of autism and ADHD, the rise in NEETS - we already feel guilty and feel like it's somehow our fault. I think the system has changed in a way which is less accommodating of difference, and become far more pressured. Our children just need more time and space to grow, and when they don't get it, they end up damaged.

It seems illogical the PIP kicks in at 16 when education is mandatory until 18. I think DLA should probably continue as long as there's an EHCP in place.

I'm also in the position of not being able to work due to the demands of caring, and I desperately miss it. I am really worried that, at some point, I may be unable to work due to the demands of caring but not get the financial support I need to keep everyone fed and clothed.

Changing the age to transition to 18 was mooted, but I haven’t heard anything about it recently.

Although many have their award increased when transitioning to PIP, so extending DLA wouldn’t help them.

In Scotland, for existing claimants, CDP can continue until 18 or they can choose to move to ADP. The award still changes to the young person’s name (or their appointee) at 16, though.

Post 16 DC don’t have to remain in education. The raising the participation age includes things other than education, e.g. work with part-time training.

" 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."

Please go to your local Citizen's Advice and ask for support completing the appeal form. This is no reflection on you. It is about having someone who does these week in week out helping you significantly increase the chance of success.

Yes. They will only look at the info submitted with the original claim.

You can send additional evidence at the MR stage.

Pip isn’t backdated when moving from dla