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.

Do you also get carers allowance op? Benefits as he is not an adult

I don’t really understand how he can work, and earn ten pounds an hour, so above min wage, but you cannot? Why do you perceive him earning as making you better off? Do you wish some of his earnings too?

If it's his money then surely he has to pay for food and bills and petrol needed to take him places out of it?

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

@WhoWants2Know In theory, only those extra expenses he has due to his disability. Other benefits are designed to cover basic living expenses. He would not be likely to be on basic UC, he'd be in the support group which is a bit more viable and designed to be long term if necessary.

I get PIP and it doesn't go on normal living expenses other people incur. It goes on therapy, very occasionally a cleaner, sometimes my travel being a bit more expensive than other people, etc etc anything the average person wouldn't need quite as much as a normal living expense. Maybe food being organized a bit more expensively as I find it hard to cook etc.

It should be his choice what he spends his money on as it's his money, and if his SW thinks he has the capacity for it. But it would be better if he spent it on other things as well as gaming maybe, other things that also enhance his health. I can see what they mean about the gaming, I don't game on the computer, but internet feels an essential for me as otherwise I'd be quite socially isolated.

It's a grey area but could be kind of illegal if you're spending someone's money for their disability if they are deemed fit to try and manage it. Some people definitely exploit that position. I'm not saying you're like that @Whiskyinajar but you should be very scrupulous about how it's spent, and it should mostly be his choice really.

The ideal is that he learns to be independent, at least as much as he's able to live in sheltered housing eventually or with other help from services. You won't be around foreever.

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

@HollowTalk That is how a lot of people on PIP spend a fair bit of their money, all of which is theirs. It can be for care and mobility needs but is also to enhance their quality of life (which is a self-care need really or life can be pretty bleak.)

@BernadetteRostankowskiWolowitz

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

That's very simplistic.

Full pip is £608 every 4 weeks.

Carers is £65 odd a week.

The carer cannot work because they are caring.

So the person receiving the money due to disability costs needs to pay for those costs which includes contributing to bills that's cannot be met by the person caring for them.

Sorry I’ve just re read you’re also getting a carers allowance. You will also get other benefits. What’s occuring that you are struggling so much you need to keep his pip to also survive?

@Bluntness100 you havent read the OP properly. Yes she get carers allowance and she would be the one working, not her DC.

The carer cannot work because they are caring

But he has a job.

@itsgettingwierd you can work and still get carers allowance. It depends how many hours you care for and what your income is.

[quote julieca]@Bluntness100 you havent read the OP properly. Yes she get carers allowance and she would be the one working, not her DC.[/quote]
Ah you’re right misread

Sorry op.

@Bluntness100 no he does not have a job. Please read the OP properly.

If it's his money then surely he has to pay for food and bills and petrol needed to take him places out of it?

@HollowTalk Nope, not his PIP. That would be other benefits for life expenses- UC etc, which is a larger amount for the support group. The only petrol his PIP would pay for is any that is over and above that a person without a disability would need to get around.

@Bluntness100

The carer cannot work because they are caring

But he has a job.

If you mean the dh then lots of households needs two adults working to meet costs.

If one is t working because they are providing care that an 18 yo gets pip to pay for them they should be getting that care money.

For example my travel costs a week would be £10. They are thrice that because I have to transport ds due to him not being independent. So that comes from his pip. That's a cost due to his disability.

Your son must pay his way out of his PIP like other 18 year olds do from their earnings. If you give him all his money make sure you get his bills and board otherwise if he gets it all as "spends" you will be supporting him all his life.

If it's his money then surely he has to pay for food and bills and petrol needed to take him places out of it?

If he is in what UC class as full time education the the OP will already receive the child element of UC plus a premium as he is disabled/claiming PIP so already getting money to pay for his food/heating/roof.

His PIP is to pay for things that cost more or are extra because of his disability. Not for his basic living costs as OP already recieves this in her UC. Granted its not huge amounts but a few hundred pounds per month.
His PIP is there to pay for travel, therapy, activities, aids or extra support.

I think posters are right you do have to let him make mistakes egarding his budgeting he needs to learn so giving him weekly amounts will support him to learn those skills.

It's easy for the social worker to say give him his money. She doesn't need it to cover the bills. I think you need to explain to him that a propionate amount of his money needs to go into household expenses. That is only fair. Then he can have the other money. Maybe set up a direct debit for his phone bill and get him a contract that you can't go over. There are loads of good cheap sim only ones.

She doesn't need it to cover the bills. I think you need to explain to him that a propionate amount of his money needs to go into household expenses.

The OP is claiming UC so she will be receiving the child element plus disability premium for him to cover his basic living costs.
His disability payment PIP is to fund things he needs because of his disability not to pay for the general household costs.

Does he have to pay you some house keeping out of the PIP?

PIP payments aren't income. You can't use them to get a credit card for example as my ed has found out.
For your ds op would he understand if you sat down with him and said every month you need to have this amount available to pay for xy&z. I will keep that amount to pay for those things and then the rest is yours?

Both my dds get PIP but they are able to deal with their payments on their own, and budget for the things they want to buy. For example my yd is saving hers to get a lightweight wheelchair with motorised wheels. She also uses it to buy food that she can make in her room when she is in too much pain to come downstairs. She then spends some of her money on art supplies, clothes and other bits. She doesn't allow her account to go below a certain amount.

We don't ask for any money from them as it's given to them due to their disabilities. Life is hard enough already. They do give us money occasionally when things have been a bit tight, or ed will buy takeouts for dinner.

It's. His. Money.

I meant to add this link to citizens advice about other benefits you might be able to get. I looked into getting carers allowance but sadly earn too much money each week to qualify, and I don't earn that much. I could earn more if I didn't need to be about to do everything for them, but that's not possible.

www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/before-claiming/extra-help-pip-entitles-you-to/

My daughter gets UC and PIP. She's 17 and autistic. She currently cannot budget. There is no way in hell that I, as her appointee, would be behaving in a responsible manner if I were to give her the lot. It amounts to over £1k a month. It might be her money, but it's me paying the electricity, buying the food and paying the mortgage to keep a roof over her head. If I gave it to her in its entirety, I'd be greeted by a room overflowing with teddies as that's all she'd spend it on.

She gets a small amount, as and when she needs it. I don't deny her anything she asks for, but because it's not accessible to her, she doesn't think about spending it regularly.

When she's 18 I'll set a small budget for her whilst continuing to retain the rest so I can ensure she's able to live comfortably. If she manages that, then I'll gradually pass responsibility on to her.

I think you know your son best. Do what you need to do for him.

@stingofthebutterfly the UC is to pay for normal board and costs anyway, so you are expected to use it for that.

Be careful, I'm not saying that it's what you're doing of course, but it could be deemed financial abuse.

I think you let him have it and learn to budget. I’ve seen too many people who don’t let their SEN/ASD children learn responsibility and when they die, they aren’t capable of belatedly learning. As a result, it’s either a huge burden on a sibling or else that child (who is now an orphaned adult) has a very miserable final years.

@esloquehay

It's. His. Money.

It's the state's money that has been awarded to pay for specific care needs.