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.

@girlmom21

You're breaching the trust of the system by supposedly acting as his 'responsible adult' and withholding his money if he's capable of managing it himself, which he believes he is.

Get the money paid directly to him but tell him he needs to pay board money.

The carers money is for you.

No she isn't. He's at that stage when he moves from being a child to being a young adult. Now is the time @Whiskyinajar has to be more careful in helping him learn to manage his money. Not least because it seems that the family situation has little financial wriggle room.

If he blows all of his money how do his travel expenses etc get paid for?

@Whiskyinajar it's good that he is coming up with idea to manage the money. Hopefully he will see the sense in him having it in weekly amounts, paying towards his keep and any other ideas you might have for him to consider. It doesn't have to be written in stone, it can change as he gets better, or worse, at managing it. Eventualy it will be his, but if he hasn't had charge of it before how else is he supposed to learn without there being any mishaps that might make a lot of difference?

PIP is not to pay for you to stay at home. Carers allowance is to meet your needs.

does the college provide support for budgeting etc? He might take advice from them better than 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.

Students on non-advanced courses can get UC if they get PIP and are assessed as having limited capability for work.

It's also worth checking that they have included the carer's element in your UC calculation, OP. It doesn't seem to happen automatically.

@julieca

PIP is not to pay for you to stay at home. Carers allowance is to meet your needs.

Not entirely true.

Pip or Dla is to provide financial support for the disabled persons living costs. If they need someone to be at home for them in order to care for them or provide transport etc etc then the money can be used towards that as part of the household expenses. No one checks what it’s spent on. Many people with disabled children cannot work due to their needs and the dla / PIP is put into the household budget to compensate for the loss of that parents wage.

Really it's his money. You need to think about what is good for you now and go to work - it's hard after being a carer for so many years but it's time to let him develop life skills and make mistakes too. Help him out by ensuring the phone contract money comes out 2-3 days after his pip comes in.

Dd has learned to manage her money, cook etc and now is in university halls (bit older though, wasn't ready at 18)

@julieca

PIP is not to pay for you to stay at home. Carers allowance is to meet your needs.

Carer's allowance is only £67 a week, and won't cover anyone's needs. Plus it is treated as income for UC and the OP will be no better off than if she didn't get it.

What I did was set up a joint bank account so I could keep an eye on things and to help set up things like direct debits (for the phone) and standing orders (a set amount sent to a savings account). NO overdraft. There are quite a few bank accounts now that allow you to set up "pockets" which make budgeting easier. For example, he can set one up called GAMING and then that's his spends for the month.

but it's time to let him develop life skills and make mistakes too.

My brother is in his 40s. He can hold down a simple job, but can't budget his money, any time my parents have tried this, he ends up with nothing having given it to people, or having been sold ridiculous phone packages or subscriptions.

Some people will just never learn, they can't, and as much as the PIP is 'his' it's for his needs, not just to blow on whatever he wants as they are different things. As a vulnerable adult, he needs guidance and protection from his carer, not to just be left to deal with the fallout because 'it's his money'

If you don't believe he can manage his money you need to apply to the court of protection, it's a very arduous process and you have to pay plus need social services and drs to confirm they do not have capacity - I would not start this process until you have tried him managing his money. Dp manages his DD's finances and medical needs due to severe LD and it's hours every month in paperwork! I handed over DD's pip from 19

@LakieLady I know how much carers allowance is. It is the same as a single unemployed person gets. So yes people do live on that amount.

@Kotatsu that is true. But it has to be set up legally. Disabled people are also financially abused by family members.

"PIP is not to pay for you to stay at home. Carers allowance is to meet your needs."

PIP is to cover the extra costs incurred by having a disability which can include paying for care. Eg if a person goes to went to daycare ( for example ) a contribution from PIP can be asked for to help fund this.

I keep half of my son's DLA for his daily costs related to his conditions. The second half is put in his child's ISA to put towards buying him a small flat when he's older. He'll probably be semi independent when older so I'm looking at assisted living for him when he's older.

The money isn't for me to spend on myself, I've got a job to do this.

The amount that Carers Allowance is, a disgrace. It shows how little society values vulnerable people and those with the important and difficult role of caring.

Yes carers allowance is disgracefully low and is still means tested.

@julieca

PIP is not to pay for you to stay at home. Carers allowance is to meet your needs.

As others have said, that isn't wholly true. PIP is for anything that makes living easier, manageable for the individual. And that has to include family support. It isn't 'his money' per se.

OP is going back to work. At his age it makes sense that she does this, for herself and to replace some from the PIP. But that also means her DS has to learn how to manage it. They both need to know how much/little of that he can take on.

There are no absolutes here. OP and her DS are entering uncharted territories. OP doesn't need to be told she is wrong, stealing from her DS or any of the other daft things being said here.

How much does he get?

I’d say £150 was more than enough a month but it is good for him to manage his own money.

I love the idea of giving it to him weekly but what happens if he does blow it all on the first day? Will you be lending him more money or making him go without? I think those questions need to be spoken about before doing it so he knows exactly what will happen if he’s not budgeting well.

I actually found blowing all of my money away and being skint the rest of the month a few times really helpful as it made me budget more carefully.

See:

www.disabilityrightsuk.org/how-we-can-help/individuals/education/frequently-asked-questions-students

I suggest you try applying for UC, for DS as he is a full time student on DLA/PIP, so long as he is in school or a FE college. Afaik, students at university get student loans and additional funding through DSA (?).

DLA or PIP is to pay for the extra costs of being disabled, not board - that is what the ESA (if they are already on it) or UC is for.

Also look up the educational bursary, if he is in school or college.

Does he have an EHCP?

Does he get social care and support from Social Services? You could ask for an assessment of need for him, under the Care Act 2014, if he is over 18, or the Children's Act 1989, if he is under 18. You could also ask for a carer's assessment of you, if you were looking for respite or care for him, so you can work, attend appointments, etc. (I wouldn't say its easy, but you can try)

Personally, if I was in your position OP I would start giving your son more control over his money.

Since you're starting a new job in January, I would use the next two months to build towards his independence in money management.

Firstly I would sit him down and go through the hard figures - how much money does he get every month, what are his fixed expenses every month (eg phone) and what needs to be budgeted and saved for each month even if he doesn't spend that money every month it is accounted for (eg clothes, college trips). Then you need to add in his household contribution - most teenagers would be able to get a Saturday job to pay towards their board/food but if he can't then that has to come from his PIP, perhaps set it to a proportional amount or whatever is reasonable.

Then you can either give him it all at the start of the month and guide him, but if he blows it all on gaming in the first week then he gets no more money for the rest of the month, or break it down to weekly amounts. So for example he might get £150 a week but £50 needs to go towards board/petrol/food, £15 to his phone, £35 towards his college expenses/clothing fund and so he only actually has £50 "fun money" ... if he runs out of fun money then he can't borrow from the other pots, he has to wait until next week when he gets £150 and can take it from that £50

See

www.gov.uk/1619-bursary-fund

I don’t think it’s all his. It’s for his additional needs. You shouldn’t be paying for those out of your own pocket. He needs to fund it with his money. That’s what it is for.

Don’t mistake the SW comment for advice. If you don’t do it she or another sw will eventually go after you for financial abuse. Pip is his and it’s clear the sw do think he has mental capacity to manage it.

@Sleepyblueocean

The amount that Carers Allowance is, a disgrace. It shows how little society values vulnerable people and those with the important and difficult role of caring.

100%

My ds is 17 and autistic and on pip.

I also get the payments because he can't manage it.

Talk to your ds about how this is income and when you get money you also have to pay rent and bills. Show him how much of the pip needs to go towards rent and bills - that's his contribution that he'd make if he was earning like many college students.

My ds money goes towards his swimming, his phone, petrol for travel costs to swimming, his meets, his swimming equipment.

He get s small amount on his debit card and some into his savings account which I have for him but he is allowed money from when he asks.

If he needs or wants any clothes I buy them for him and also the food shop consists of the non branded items where he'll only eat certain brands rather than the cheapest options I'd usually buy.

He asked for me to have control as he knows he cannot manage to budget for everything he needs to pay for and finds it's stressful but I've been very open with him where it goes.

I also put an amount of his pip away each month towards costs when he travels to compete and we pay for hotels etc. It'll tell him how much is in there and tell him how much I've used when I book hotels etc.

I think it's perfectly fine to expect some of the money as payment. I work shorter hours because ds needs me home to cook and help him organise himself etc, to transport him and all those things.

So basically he's paying for that care side of things that at 17yo he should be able to do for himself.

I was quite blunt with ds and told him the choice was to pay me for those care elements or pay for someone else and I'd be working longer hours. Or I'd have longer hours but I'd have to find a way to do those things for himself.

People often underestimate the financial impacts of having someone you need to provide care for. Not just with not being able to work - but the shorter hours and the lack of career progression etc.