AIBU To keep back half of my son's PIP payment?

[Whiskyinajar]

DS is 18 and autistic, he attends a college for people with learning disabilities and needs a lot of support both there and at home with anxiety, interpreting life and his emotions etc.

At 16 we had to apply for PIP which he was awarded but with me as the responsible person for using it in his best interests,

Now PIP has been really helpful for him, when he has need of counselling etc we can pay for it privately to help him. We put it towards seam free socks etc and the rest of it bar £150 goes in the pot towards household bills.

I'm interpreting the "in his best interests" part as keeping me at home so that if he has a crisis (not infrequently) I can get to him and help. The issues he has mean it isn't easy for me to take on work alth9ugh we have tried.

Initially I transferred a very small amount a month to him as pocket money etc . When he hit 18 he wanted to get a mobile phone which is okay as hisnold one was falling apart and very old. He didn't go for anything fancy and pays £15 a month .

Then he started asking about having more of his PIP money and I agreed to give him £150 a month but told him he needed to budget for his phone out of that. A phone is pretty necessary for him so I thought it would be an easy thing to budget for.

However he's not managing this and every month I end up putting the money over for his phone the day before it comes out. Because he's autistic I don't want him having phone issues so the bill has to be paid.

Financially it's a struggle every single month because we rely on a mix of UC and also what my husband earns form his job. This was severely affected in lockdown but is gradually recovering,

So to the current issue. DS is (I know) feeling resentful that I don't hand over all the PIP payment to him . We've spoken openly about it but he still wants more than the £150 I give him.

DS has no real interests apart from gaming as he finds socialising very difficult. A SW has said to me that it's okay for him to spend the PIP on gaming as that's how he socialises and I get this but it doesn't feel right

He's just been to me and asked again if he can have all his PIP.
It went into my account two days ago and I gave him the usual £150.

He asked about the rest and I pointed out I'd had to put petrol in the car, pay towards a trip for college and buy him some new clothes he needed. I have £45 left until Carers Allowance goes in (about 10 days time).

In the meantime that £45 will be petrol costs and anything he needs for college, husband will deal with food bills.

DS is so resentful though .

I've got the offer of a job at £10 hr from January...it's just 10 hrs a week but will make us better off and I can work from home . This means he could have all his PIP money then but I also know he won't manage it.

Don't know what to do tbh.

SW suggested I transfer all the PIP to him and let him cope with the mistakes he makes. I know absolutely he will blow it all within a few days on gaming and I'm not comfortable about that...even if it is his way of socialising.

Should I continue digging my heels in . I have already said that PIP is not really to be used for gaming.

I think the PIP should be for him but he also needs to contribute the household. So agree an amount that he pays out of his PIP each week or month so help cover food and bills.
Also get him to budget an amount for clothes and shoes for himself too.

Thank you all, I knew I could rely on MN for advice. Some r ally good points here which I need to sit down and think about.

He's still in college so he doesn't get UC or ESA. I've no idea how all that works and am hoping to find out a bit more in the next few months,

He still has an EHCP and the plan is he will go on to a college course which will push him towards independence.

He's not ready for the world of work yet or independent living part of his anxieties is that this scares him.

I can remember giving my Mum a percentage of my wages when. I lived at home at his age.

I really like the idea of me keeping back his phone money etc and then transferring it at the right time.

All in all its a minefield. It is his money and he can make decisions about taking out a mobile phone contract etc so I can see that he has capacity to say yes or no to stuff,

He did tell me today that a couple of his friends at college get all their PIP but their parents say what it can and can't be spent on. I think he'd be amenable to this discussion .

I'll also look at some budgeting stuff to help him .

Argh....so complicated.

My concern about the SW's advice would be that no-one can spend their entire income on socialisation whether that's gaming or not. Teaching him that an income is for fin and all his other needs will be taken care of is not a helpful plan moving forward. You want to set him up for an adult life but it sounds like a very child-parent dynamic right now where he asks you for money with no idea about costs and gets what he receives. I would try to empower him to understand his exoenses. Could you sir down and make a budget with him that includes all expenses including board and transport? Maybe show him how much of your budget is few for entertainment so he can compare. If he sees and agrees to a plan then you could take that all out of his Pip before he receives the remainder. Hopefully he will be much happier if he understands where the money is going. Good luck.

For college ESA comes down to hours I think. If he's there full time then i don't think he qualifies, if he goes three days a week then he probably does.

He did tell me today that a couple of his friends at college get all their PIP but their parents say what it can and can't be spent on. I think he'd be amenable to this discussion.

This is a good plan. Remember to talk to him about keeping some money in a separate savings account so that if he needs expensive things (like non-NHS therapy) he has funds to cover it.

@Whiskyinajar Do you get an element for him in your UC?

If not he should be getting new style ESA.

Either UC or ESA should be paying his basic living expenses. Then PIP the extras.

If he is in the equivalent of school years 12 or 13 (sixth form) then I don't think you can really expect board money from his PIP.

I only think this because most people wouldn't take board money from someone who was in sixth form studying A-levels.

You are right though it is hard if you know money is going to be wasted but then again it is his money.

How much is his PIP money ? If he gets top rates that is over £152 a week so obviously if you gave him all that, it would bean awful lot which he could spend on whatever. I don't think you are unreasonable to keep some for expenses which his disability incurrs for you.

@Sixtycats

He's a student, so how is he meant to get ESA or UC? I'm genuinely asking as I was under the impression students couldn't claim.

It depends what typr of education/ course it is really. If he is still on op's Uc claim as a dependent then he wont get Uc in his own right as well. he can't claim ESA as has never worked and paid Ni contributions.

This is a tricky one. As on the one hand, if he does have capacity, then like many other 19 year olds they are expected to contribute to the food/rent in some way. That is seen as a step towards independence.

And if he doesn’t have capacity then you would want to grow it and help him learn about money too.

If he used some of his PIP to pay for a personal assistant noone would bat an eyelid. The fact is you are his personal assistant.

Whilst you cant withhold his money from him, there has to be an understanding of where you both are and where you both want to be. Either he needs to accept he needs help and works with you or he doesn't. You cant care for someone who doesn't want to be cared for, it's got to be a partnership. Hes got to want you as his PA

If he doesn't as a "proper" adult he needs to pay rent to cover his board and costs. Including food. If he blows the rest he blows the rest.

If actually without that contribution it's not possible for you to afford to keep him at home, you need to be clear about that and discuss alternative supported living arrangements.

Op are you getting the child element for him on your UC claim?
If so you will be getting a considerable amount for him already with child element and disabled child premium?

Scrap that. I meant UC. I was forgetting the new style ESA doesn’t have an income part.

He could get UC in his own right as a student as he gets PIP.

But it depends if the OP has him on here UC claim or not.

I treat my sons PIP as i did his DLA. Towards his expenses. It would make no sense if you couldnt afford to run the household while hes using his as disposable spendsies and you know full well he wouldnt be able to move out or contribute to the household any other way.
Your child benefit will have gone and tax credits when they get to a certain age.
If you need the money then i think its fine for him to have to contribute, but hopefully thats not all of it. I think i split ds' up into some for savings, some towards his keep and some for spends.

@TatianaBis

As you know PIP is provided for his care needs. Being divided into two sections: daily living and mobility allowance.

If he is living at home and you are paying those for him - car, petrol, lifts etc; food preparation, help with socialising etc - then a good % of the money should go to you to cover these.

It’s not spending money for him to do what he likes with.

There is a section on PIP called “Managing Money” and you may already have filled hat to say that you have to help him manage his money.

Exactly this. I wouldn't give him all the PIP.

Give him £135 and you cover the his mobile bill of £15pm.

How can he learn or try and get any independence if he has to get pocket money from you?
It is HIS money. The carers is YOUR money that you get for looking after him.
Pay him it weekly or let him blow it and struggle for the month.

Another suggestion is - what are the next steps after this? Will he still be at home? Working?

This should help you with the money decisions now. Prepare for next steps moneywise by making some things normal now. If you give you it to him for gaming it will be hard later to ask for rent/food.

I think there is a difference between 18 and below school leaving age (ie Year 12 or 13) and 18 and over school leaving age.

Was your son 18 before or on 31st August 2021?

I would do this to. He needs to learn what thing's cost so this will help. Invoice it then deduct the money and pay him the remainder weekly.

You cant just give it to him. You need to kay the ground rules.

If he wants all his money then he needs to pay for all the things you pay for for him. He needs to pay "rent" to you to cover the cost if transporting him to college and whatever else you do for him. He needs to pay for college trips, equipment for college, clothes. All of it.

If you give him the money and he runs out and csnt pay for those things the you need to be firm and tell him that he'll have to go without. You cannot jump in and pay his college stuff for him. You cannot pay his phone for him.

He'll either learn or he'll see that he cannot do it and then you start keeping back the money again.

I would wonder about whether something like multiple bank accounts or pots would help him manage his money better?

I just use several accounts at a normal bank, but I think Monzo allows you to transfer money into different "pots" so it might be that money comes in weekly and then £x goes into the Gaming Pot, £y into the phone pot with money, and then some savings, keep etc? Would that help him plan and things?

I did this with my sons DLA and with his PIP. I transfer half to him and save the rest. I dont need it to top up our income so have been lucky in that it was saved to pay for driving lessons and a car which he now uses to get to college and his internship which saves him a lot of anxiety around travel. If he lives with you and you pay the Bill's ie electric gas food ect and this money goes towards that really that is fine. It may be his money but these are costs he would need to pay if he was actually independent. My son is 20 and hasn't ever challenged this but if he does. I will give him all the money and then bill him for the usual household costs like board. You are his representative and if he cant manage his own finances and lives under your roof. I dont think this is wrong.

But he isn't managing it. Being unable to budget is one of the markers in assessing pip.
You are right to retain control of it. Agree that weekly sums probably more useful

I think there are some things you can do here and you need to sit down and talk about options.

Give him all the money but he has to budget what he needs for college stuff, clothes and phone etc and do not bail him out ever. You need to be clear to him that you will no longer do this.

Ask him to prove to you how he will better manage his money before you do this. He needs to set himself rules and stick to them eg no more than x per month on gaming, save y per month on emergencies, spend no more than z per week total

Give him more of it but weekly rather than monthly then increase either the amount or the length of time between payments if he proves he is managing it ok

Give him it in cash so he can physically see the money going down if he is a visual person. Have a few different containers for cash and get him to put some into one for clothes one for gaming etc so he can physically see that if he spends more on gaming he is taking it out his clothes budget for example

Its independence payment, at the moment he sounds like he wants the money but isnt independent. If he wants it all he needs to be more independent

I'd take the job if its work from home, you will still be around for him and it's not permanent if it doesnt work out

I agree with paying him weekly but if you are going to pay it all to him I would look at, with your DH and DS an account that he can't get into too easily, one with a 30 days notice or something, so his PIP is divided in 2 (not necessarily halves) with some going into a current account and some into a notice account.

He also needs to pay you for things like petrol to take him places.