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 totally get where you are coming from, if you have been using PIP improve his quality or life clothes, being around for him, petrol, running a car. He’s not going see these as proper expenses in way most 18y struggle with how much they actually cost.

The PIP is for his extra costs it’s not all fun money. You need sit down and try agree if he has all PiP what else out of household extras will have to go. If UC covers food and basic share of bills then what else as a household are you paying for extra? Can you still afford run the car? If he’s gets enhanced mobility that means he struggles getting a round or planning journeys and unable travel on bus by himself. Is he going use PiP for taxis when he’s out and about? Or is he wanting you to provide that?

When he needs to go for appointments will he need pay a support worker? Or will he assume you will be there whenever to assist?

They don’t give PIP out unless you have extra needs which have extra costs. It can be hard work out when you are so used paying things because seems normal. He can’t have all PIP as he is now adult while still expecting you to fund the extra of his disability. I’m Disabled and live alone I have to had over huge amounts of my ESA&PIP for handful of social care a week. It’s not free play money!

I have not read all the posts so not sure if this has already been suggested- could he have two bank accounts, one with a card that has his spending money in and one that either has no card or you keep it. His phone bill, travel expenses, clothing costs and other essentials could come out of this 2nd account and you could go through it with him every month so he can see where the money goes. That way he can start to learn about budgeting without having to possibly let him fail. If there is money left at the end of the month it can go into his spending account. If at the moment he just sees you 'keeping' his money this may help him understand where the money goes.

I think it’s rent/ board and lodging rather than holding it back. Just deducted at source.

Work it the other way and say “this is your board” so I’m deducting this, and then pay the rest weekly so he doesn’t overspend. He can work towards monthly I guess by budgeting for the week at first, then slowly increasing.

If he is still at college wouldn’t your UC include child benefit and tax credit, to pay for his living expenses. With PIP, there are 2 parts care component that is used for helping him with any care needs which also includes paying a council for any services he has. The second mobility which is non means tested and should be used for transport and mobility. Your UC should be broken down and you should be able to see why you are given the amounts you have. The council I work in has a welfare rights department and they are very helpful in regards to looking at benefits for both out clients and their families to make sure they are getting the maximum benefits they are entitled to, is this an derive in your area. I see a lot of cases where like you the family live off what their LD child gets and then are in financial crisis when their child moves on to either supported living or residential care or even when services are put in place as they don’t realise their is a financial cost to receiving services. This post is not to have a go, just to think about the future and how it may impact on fiancé’s in the future if you rely on the .

PIP is not to pay for an adult normal board. He will get other benefits for that.

He will have to learn to budget as much as he can on what money he has in life eventually @Whiskyinajar to be as independent as he can be.

You could organize it so that when his money comes he has to pay for the petrol that goes towards his travel if he has an extra expense for that due to his disability and other things towards his needs that are due to his disability (which is what his PIP is for.)

Putting it into the family pot doesn't seem quite right, although of course any UC he gets could go partly towards his food and other life expenses which is what that is for.

I do know some adults who receive PIP while living with parents have it paid into an account that their parents manage. Similarly, people who live in domiciliary care or supported living schemes ( if they lack capacity) often have their benefits paid to the management company, who put it towards their living costs.

If he was living on his own, then some of his PIP would probably be needed to cover his living expenses.

The fact that he's lucky enough to have parents willing and able to care for him does not mean he gets to spend all of his PIP on gaming. If he receives the mobility component of PIP, all of that money is earmarked for either a mobility car or for covering his transport costs--including petrol.

Give him his PIP and apply for carers allowance for yourself.

I believe the people telling you this is fine are incorrect and that withholding money from an adult that belongs to them is not ok unless you have a legally binding agreement such as power of attorney. You can ask the SW regarding capacity assessments and see if you could get something like that but you can’t just withhold his money, especially if you’re spending it on other things. You could be accused of financial abuse. Universal credit and the enhanced elements for disability are your contribution towards his living expenses. If you could provide evidence that his share alone is more than that possibly you could charge rent from the amount he receives from PIP

You should consider changing his bank account to one of these money management accounts that you tell all your income and outgoings and the bank budgets your money so bills are always paid. I have a thinkmoney account for this and I'm sure there are others out there that do the same so is worth looking into

Surely that money isn't just pocket money for him? There are costs involved for you and they should be paid out of it. It sounds as though he's got it into his head that that's his money and he can spend it on whatever he wants. Of course he can only do that if you spend a lot on the rest of his needs. His SW sounds awful. Who on earth would suggest someone spent all their money on gaming? That's totally irresponsible.

If he is at college then you may be getting tax credits. If you surrender the tax credits then he could, as a disabled person with PIP, qualify for universal credit and also request a medical assessment. This would give him his own money. Plus you could then keep the PIP aside as 'board' because he wont be able to have the housing allowance/wont count on yours while he is under, I believe 26.

We have a similar situation with my daughter. As I was managing her PIP - which she had signed over because her condition includes compulsive/impulsive spending, especially when anxious - and once she was 20 and no longer to qualify us for tax credits, she claimed UC. She was still at college at the time.

She is learning to budget with the UC/enhanced payments(new equivilent of ESA) but we have the buffer there for the household income, which has dropped significantly due to tax credits ending. So we are both learning to adjust to the new budget! She is learning to cope ready for when she may be able to live independantly or with a flatshare. She also gets some of the PIP, and I pay for her phone, simply because its a deal connected to our landline.
I think its important to know how the money is accounted for. sit down and make a budget. show the bills, show the rent. show the income and outgoings. show the electric, which will be higher if he runs a gaming rig. show the food shop, the insurance, the council tax.
Kids dont generally get to know this stuff. Its better to be open and let them know how much things cost, and how much is coming in and out.

@julieca

PIP is not to pay for an adult normal board. He will get other benefits for that.

he wont, because when he is living at home they wont pay his 'share' of the rent, but equally they wont count his UC/PIP as part of the household expenses

Asking him to budget some towards board and food is fine. Pay him weekly and ask for the payment the same day. So give him £100 and ask for £25 back for example so he actually sees that he had it but had bills to pay.
It’s not for you to stay home and you need to not rely on your sons benefit

It's all very well the professionals saying the PIP is all his, but if he spends it all on gaming, who is supposed to feed and clothe him and keep a roof over his head?

He's an adult now - don't treat him like a child. PIP isn't pocket money.

I keep the PIP, less the bit I give her, because its simpler than giving her the PIP, and then getting her to send me the same amount of UC to contribute towards the bills and food. As others say, some of the bills ARE increased because of the disability. My daughter, for example, cant be in cold and damp due to her condition - so increased heating bills where I would happily throw on a jumper. And travelling - her anxiety can be crippling and her chronic fatigue - so often Ive had to drive her around - thats what mobility is for.
I have to attend clinics with her. Im lucky that Ive been able to juggle self employment around her, but as many point out there are not many jobs which offer the flexibility thats often needed with many disabilities, and 67 a week in carers allowance doesnt touch the sides

Would he be able to manage a timed condition plus reward?

"IF you can keep your phone cost within X agreed limit for one week/month, then that means you can have more of your PIP".

You could get him to stick a reminder on the phone.

Try not to think of it as you keeping some of his money to live the life of Riley, OP, just the consequences of a family decision for you to prioritise your availability for your son requiring your son to contribute to the household expenses. The SW wont have to live with the consequences of your son's mistakes if he spends everything on gaming in a few days and can't pay for his 'phone and you don't have the money for petrol nor food.

Good luck.

@NettleTea the point is that PIP is to pay the costs over and above having an 18-year-old at home. Having a bed and normal food is what all 18-year-olds need. There will be lots of additional costs incurred, but those saying to charge him, board, from the PIP don't understand the benefit.

I agree with others. Surely PIP is not fun money? Its used to help and support his additional needs not let him game all day. And I agree, do take the new job.

The PIP might not technically be for his living expenses but it’s clear the op is on a low income. It will not be in his best interests for him to be able to spend hundreds on gaming every month but the family can’t afford new clothes when he needs them or transport to take him to activities. There needs to be a balance here.

Unless I'm missing something, the OP says in the first post that she is his appointee. That means DWP have agreed that her son is unable to handle his benefit claim himself and she is in receipt of the money, for his benefit. Therefore surely holding some back to cover his costs, ensuring his phone bill is paid from the money, etc, is exactly what she's meant to be doing.

I'd agree with the people saying check what else he's entitled to, but if the PIP is his only financial income and the OP no longer gets child related benefits for him then it seems reasonable that some of the PIP goes towards the household costs incurred by having her son as part of the household.

The PIP is his. As people have said, carers allowance is the benefit you should be claiming if caring for him stops you working. You should not withhold it especially if this is against SW advice. I have seen this end badly with accusations made against the carer, which is very upsetting; but now he's adult that money isn't yours to spend. You could ask him to pay board out of it, but if you believe he really can't manage then you need to apply through the courts to managd his affairs for him. However the presumption is competence so you would need to show he genuinely can't manage due to his condition, as opposed to just spending unwisely, as many people his age do.

It is his money op and he’s an adult. I get money is tight, but can you work when he does.?

OP states she is the responsible person, wrt administering the benefit. Is this not the same as an appointee?