DS16 with ASD moving from DLA to PIP but delusional about his abilities

[KingOfPeace]

Just got the letter that ds who was 16 last week needs to move to pip. He was diagnosed with ASD as a toddler, ADHD and anxiety about 10.

It says to call them to start pip claim but he must be present - he won't even speak to granny on the phone, I might be able to get him to confirm he's listening but that's it. Will that be a problem?

I think our biggest issue in claiming pip is that we've worked very hard to make him feel 'normal' and he doesn't have siblings or close friends so has no one to compare his life to. He will just say/write that he's fine. Obviously I can write it more accurately but if asked he'll just say he has no problems.

In all honesty money doesn't help with his issues. It's mainly executive function and anxiety reassurance plus always being with him and driving him everywhere, so unless he uses that money to pay someone to tell him what to do then it doesnt make his life any better. Does that really mean he isn't entitled anyway?

I would think having to be driven everywhere is a financial thing for starters. You must have had things to put on the DLA forms?

I know what you mean though, we don't claim benefits for our DS, but he is very big on saying he is fine can cope with anything, but doesn't register how much we actually do for him.

Is he ever likely to be independent?
If so then the money could be used to, for example, pay for a support worker to start to get to know him so that he begins to accept support from beyond the family.

It could also potentially pay for taxis to places - school? SN club?

My AuDHD daughter uses her disability money for an Uber account, a cleaner and a freezer full of ready meals.

You're right, it just seems stupid because pip would never be enough to pay someone to do what we do for him, and I can't imagine us charging him for it.

I was honest on the dla form, it's mainly prompting him to do EVERYTHING and taking him everywhere and doing all care like meals and washing because of sensory issues and anxiety.

I have just found a pip questionnaire and it says he'd get it. I just can't see him giving an accurate representation of himself.

Has to be driven everywhere costs money and would score points on PIP for mobility.

The issue you will have is him needing to hand over the money to you when it goes in your bank account and not thinking it is his to spend on crap.

I'm currently doing my own pip form.

The phone call was about 20 mins. They do accept that some people can't speak to them.

I'm doing my form online but paper is also an available option. Once you have the form you can do it you don't need to involve him.

I will be "helping" (read doing for her) my daughter with hers next month.

@KingOfPeace

My son was not present during any part of the process.
You need to request to be his appointee then you can deal with it.
I had the same worry as you that if asked my son would just say he is fine and can do everything himself, by himself. He really had no idea that the level of support he had from me was way more than his friends had from their parents.

Thank you that is helpful.

I can see him living independently in quite an unsafe way, he'd need a lot of input but I guess the help your daughter gets would make it possible.

Financial independence would be a worry, he is a soft touch for a charity and recently gave a homeless person £40 that we had with us because he had litterally just been given it for his birthday.

Thank you all, you've really helped, I was close to not bothering because I'm overwhelmed already. I'm not sure where I'll find the energy but if he has a fair chance we should do it.

You can write a letter from your perspective and include it as evidence. Basically saying what you have here, that he doesn't recognise the amount of support he needs/receives, and list examples such as the money one above

Literally just done the same thing. Was it addressed to you or your son? A few months back we had the letter about changing tonPIP and did Dd want to be in charge or have a parent still, she chose me so I was the person they spoke to. Not her, he said she would only need to say a few words it it was her as he could do most with me so just give them a call.
It does sound like we have to complete the whole form again though 🙀 I only did hers last year as her ASD was masked for many years so it's only recently we've found this whole new child

You have my sympathy. It took me 8 years to complete the DLA form, I just could not find the strength!

Just been searching and seen a website recommended. It is £20 for a years membership but appears to be very good for helping you complete the form well. Haven't signed up yet but I will I think.

benefitsandwork.co.uk

@KingOfPeace - thank you - I don't mind doing my own for my DD, but I may actually use this as they can ensure they get what they need - my DD's payments pay for schooling consumables, her headphones (severe sensory processing disorder so can't go out without ear plugs and apple air pod max without being so overwhelmed she can't come down for many days, once it Took 2 weeeks 🥺 and we have to drive her everywhere so no buses trains or tubes as she can't cope plus her assistance dog (we're training her and have ben for 1.5 years .. she's so lovely) .. and I think we'd really struggle without the input of money - so thank you for that! 🤩

Fill it in yourself with his input.

We had the help of a charity who sent a support worker for the assessment with the social worker. My daughter was also desperate to please and suggest she could do things she couldn’t reliably do, but the support worker helped with that.

www.dspuk.org.uk/autism