Is it worth applying for PIP?

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Ds1 is 15 and has asd. Was awarded lower rate care dla when he was 9 and its due to run out in 2023. Although he will turn 16 next year so dla will stop then anyway.

He gets no support for anything apart from the £20ish a week dla and the £50ish a week disability element on our tax credits. School have said he doesn't need support there. I'm assuming this is because he doesn't have meltdowns at school as ds2 who also has asd didn't get any support either until he had a meltdown at school and then suddenly he was eligible for support. He was getting support from the children's autism team but that stopped when he turned 14 as that is the upper age limit. We get a termly newsletter from the children's inclusion team about various days out/activities they are doing and he will do the occasional thing with them in the school holidays, mostly watersports. I always stay with him, mostly because ds2 will go too and he has higher needs including a previous suicide attempt.

The best way I can describe ds1 is that he is like an expat here from planet asd. He speaks the language fluently but it doesn't come naturally. When I see him at school or in social situations he constantly has his face kind of screwed up as it he is concentrating very hard to fit into the nt world. When he is at home or with other people who have asd he is relaxed, very smiley, has a spring in his step etc. He also stims which he won't do in public.

The main thing I'm worried about PIP is that he would have to be involved in the application and the assessment. I have always been positive to him about his autism and the idea of involving him in a form similar to the dla one where I will have to write down how different he is compared to others fills me with dread. Also him being interviewed by someone who's job is to dismiss his needs will be awful for him. I have been through a dla tribunal for ds2 when he was 10 and it was awful. The only comfort was that ds2 didn't have to witness it and see them dismiss all his needs like that.

On the other hand we can't afford to lose £70ish a week and as ds1 is getting older he needs us more, not less so me going back to work or dh increasing his hours isn't really an option.

I claimed DLA for my son and then PIP last year. Firstly you need to apply to be his appointee. Look at each descriptor carefully. For each statement you make I would provide supporting evidence. I used about six pieces of evidence that worked for the different descriptors - I numbered the evidence and highlighted the supporting key statements. Make the form as specific, detailed and clear as possible. Look on the internet for guides which explain the meaning of the descriptors and guides as to how to respond. We then had a visit (during lockdown) but this was really light-touch. He was awarded more through PIP than DLA.

Just wanted to say that you should be prepared for it to be reduced and/or refused first time round. DO NOT be put off by this. My son had always had higher rate for mobility and care then when he turned 16 was refused anything (sigh). If this happens you must ask for a mandatory reconsideration and if it is still not awarded you must go to tribunal.

Sounds awful but is all very straightforward. It's a whole other discussion about why the DWP have started refusing more and more cases over recent years.

The CAB are an excellent source of help, and there are numerous online support forums for just this type of thing.

Hopefully your/his claim will be straightforward though, just be prepared for a bit of a battle.

Op, if you Google 'pip autism' this link should come up. I'm unsure how to link to a pdf but I found it useful for matching my needs to the descriptors.

This link is super helpful and just a quick glance has haloed me to rethink what the form is looking for

Like Punx lots of people on the SN boards have said DLA to PIP as appointee was a fairly seamless exercise and others like me have had a terrible time and have had to go all the way to Tribunal.

The CAB online guide is free, the Benefits and Work guides are downloaded but you need to join them for a year approx £20.

Surely it's a lot easier to go from DLA to PIP even though the criteria are different, to applying for PIP for the first time
It wasn't in our case, DD had indefinite DLA then after the F2F was awarded lower Daily Living but zero mobility PIP.

I'd strongly advise you to use the guides to explain about the tasks they mention and stress when your DS cannot do those things reliably, repeatedly, safely and in a timely manner those words are key.

In the F2F or whatever's in its place now, answer questions 'No, but'

Never say 'Yes, but' as they'll only hear the 'Yes'.

Get as much supporting evidence as you can.

Be prepared and expect the worst from DWP, then you'll have a better mindset to deal with it if it happens.
I was sent a refusal letter and it states you have to appeal "within a month of the date of this letter" only it didn't arrive until 2 weeks after that date plus the remainder of time included a Bank Holiday, so the fictitious 'month' was only around a week in real time.

Send all correspondence Post Office Next Day Tracked, it's about £8 per time, but if you, like I did, receive a letter saying you'd not submitted something within the "month" therefore they were going to declare your claim out of time, you log onto the Post Office website and screenshot the date and time and signature of the person at DWP who received it and reply with that evidence. DWP never apologise.

Submitting a diary of the challenges your DS faces is a very good thing to do, it demonstrates the differences between him and his age peers.

Lots of people online will tell you to document each day as though it's the worst day, please don't, just tell the truth.

Each knockback from DWP comes with a warning that if they have to reconsider, you may be scored even less points than your original award. It feels very intimidating, so many people give up at that point and settle for a lesser amount out of fear they may lose even that. Grit your teeth and put your Big Girl Pants on, make sure you refute their dismissals and counter them.

Our Tribunal Judge said our case was extraordinary, inasmuch as he, the medical expert and the disability expert had all independently read all of our evidence and all independently reached the conclusion that DD should have been awarded enhanced rate of both PIP components on my original submissions alone. He said if DWP had bothered to send a rep he would have made them apologise to us and he awarded PIP without a time limit using the phrase 'It is inappropriate to set a term' which means she will only get a very light review once every 10 years.

It can be a very unpleasant experience to go through, but as long as you understand what information they need and how to present that information so DWP cannot dismiss it, you'll succeed.

I'll keep my fingers crossed that you have a really smooth transition, but in case you don't, I hope my experience is helpful for you.

Agree that it's very hard to get PIP as an autistic adult but I get it and so does my adult DS (we are both autistic) and we didn't need to go to tribunal. I get PIP at enhanced rate daily living and mobility, but to be honest I probably meet most of the criteria due to associated MH issues rather than the autism itself (since I get no support for the autism but have a CPN and psychiatrist who provide plenty of evidence).

DS gets PIP at enhanced rate for daily living and mobility and he moved seamlessly from DLA (higher care/low mobility) at 16, they did it without an assessment and he got a 10 year award. But he was far less able than your DS as he went to a specialist autism residential school and certainly wasn't able to do GCSEs or learn a musical instrument. We had his EHCP as evidence plus reports from his school SALT, OT, social worker and psychiatrist. I'm his appointee too and managed the whole process, I wrote very detailed responses to all the questions and backed it all up with evidence.

PIP is a Government genius act, because you basically score nil point, when you previously got DLA. Good luck though.

Thankyou everyone. He doesn't have an ehcp, he doesn't even get an annual SEND review at school. In September 2020 when he went back to school after lockdown 1 we managed to persuade the school to let him use the music room at break/lunch as he finds playing the piano helps when he gets stressed. He would normally spend break/lunchtime either at a club or with his brother, neither of which he was allowed to do with the school in year group bubbles. The school senco was reluctant to even give him that though.

I'm prepared to fight his corner and end up losing as long as he doesn't have to be involved. I can just imagine how confused and upset he would get if someone from the dwp tried to get him to say that he could do something he can't or if he saw a report with blatant lies about him. He has a very strong sense of what is right and wrong so wouldn't cope with that at all.

I’m encouraged to hear of people transitioning from dla to pip without a tribunal.

Very best of luck, OP. You shouldn’t have to involve him if you are made his appointee.

My ds turned 16 in the pandemic and I got made appointee of his DLA due to his executive function skills.

We then got told to apply for pip and has assessment by phone in feb.

He went from MRC and LRM to enhanced award for both elements of PIP.

The expectations of what they can do are greater for PIP. I was also his appointee and I did the assessment on loudspeaker and ds could talk if he wanted.

The only thing he said was yes 3 times to confirm he understood what the phone call for for and to horrified when he asked him if he was walking his usual route to college and the road was closed would he know a different way to go. Ds said yes. Then said that he wouldn't go a different way though as how does he know it's safe because he never goes the different ways!

Ds is also academically very able achieving 4-9's in GCSEs and doing a T level at college.

Oh he does have an ehcp too which may also have helped.

We managed it without a tribunal last year. He was on DLA but I don't think that had any real bearing on it, it's totally different, same with his EHCP.

I was the appointee and I used the BenefitsandWork website linked to in the second post (the guidance documents available on subscription from them). Although it was very hard work filling in the form and I did lose sleep over it all the actual assessment (by phone) was fine, I did a lot of preparation for that too, and the assessor's report was a fair reflection of the discussion and of what I had put on the form.

I should add that DS did have to attend the phone appointment, we did it together on speaker and he did have to answer a few questions, he was asked how much change he would expect from a fiver for a certain amount and to count back from 100 in 7s, he fumbled both a bit. I wouldn't say he enjoyed it but he coped. I had been right through everything I was going to say beforehand with him so no surprises on the day. He hasn't seen the report.

Hi op, my ds has asd and is 18. Has just left sixth form college and is awaiting his A level results on Tuesday so nerves going here!

Ds was diagnosed at 8yrs 8 months old. We didn’t apply for DLA for a year but I did the form myself and a backdated payment was in the bank 16 days later and he was awarded high rate care and low rate mobility. He didn’t have a statement as it was then, now an EHCP.

When he turned 16 and we had to apply for PIP I knew it would be much harder and it was. I was given appointee status and went along with him for his assessment which was a shambles from start to finish. He received 0 points and I took it straight to MR which came back the same. This was around June/July of 2019. I immediately applied to the tribunal and waited. The questions he was asked were sneaky in my opinion. One example was if he was given one pound for the shops and spent say 63p, how much change would be receive?! So because my ds could count and was doing very well at school it was held against him.

Fast forward to the week before Christmas the same year. I received a letter from the DWP totally out of the blue saying that they had looked at his claim again and had “changed their mind” and he was awarded 27 points and was immediately backdated. Don’t give up. The one piece of advice is to record the conversations in the assessment ( which is allowed with their knowledge and they are given a copy too ) as this gives you the protection of the truth being said.

All the very best