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.

Give him all his pip but tell him he has to pay rent as he wants to be an adult. Sit him down and go through what he would have to pay to live independently and then take some money from him that is less than that.

@Bonsaibreaker

If the OP was disabled and unable to work would you think it was ok for her husband to struggle to pay for everything himself so she could keep her £800 a month PIP to herself to spend on Candy Crush?

The OP unless her husband earned a decent amount would be entitled to claim UC for living costs. The OP is already reciving living costs for her son via child benefit and UC child element.

Nobody is pretending benefits are great and pay enough but it sounds like the OP is taking the majority of her sons disability payment while still claiming other benefits she also keeps.

She says her son doesn't socialise so spends it all on gaming. Maybe hire a support worker/companion for a few hours a week to support him to do activities outside of the home?
I used to manage a service that provided this so it is possible.

I dont think the OP I'd being abusive but I do think as a parents they need to stop being financially reliant on their disabled sons PIP.

Do you think child benefit and UC will cover her being out of work plus her son's counselling, college trips, petrol, clothes, shoes, food, phone bill etc? Because who do you think will have to pay for all that when he blows it all on gaming because "it's his money".

Because CN, child element of UC and caters allowance does not equal a wage.

If DS is her only child OP recieves

£80 pm CB
£289 pm child element
£128 pm mimium disability premium but this could be as much as £402.
That's £500 ball park basic
Plus £268 CA ( this is painfully inadequate I know it sickens me)
So that's £750 just in the child element.
Then they will have the couples element
£509 pm

Then housing element if any.

The family will not be ben capped but will be subject to the work allowance/taper but they still have DHs wages on top of any UC award.

While I agree living off UC is far from easy infact it's virtually impossible relying on the majority of their sons PIP payment is not sustainable either.

Do you think child benefit and UC will cover her being out of work plus her son's counselling, college trips, petrol, clothes, shoes, food, phone bill etc?

The OP has already said she pays for his phone, petrol, college, counselling and clothing from his PIP. She doesn't use UC for that. She keeps the UC she gets for him for the household and uses the majority of his PIP payment for the household too.

I am in noway saying this is easy but what I am saying is that the OP is so reliant on the majority of his PIP paying for the household its not right or sustainable.

@Bonsaibreaker

Do you think child benefit and UC will cover her being out of work plus her son's counselling, college trips, petrol, clothes, shoes, food, phone bill etc?

The OP has already said she pays for his phone, petrol, college, counselling and clothing from his PIP. She doesn't use UC for that. She keeps the UC she gets for him for the household and uses the majority of his PIP payment for the household too.

I am in noway saying this is easy but what I am saying is that the OP is so reliant on the majority of his PIP paying for the household its not right or sustainable.

Yes. But if she gives him all of his PIP to do with what he wants like people (and a SW) are suggesting then what? Who is paying for all that if he doesn't?

I'm a social worker who works with people with autism and learning disabilities.

This is a common conundrum faced by families and one unfortunately that does end up as a financial abuse 'safeguarding concern' far more often than it should because families haven't been supported very well through this transition stage.

Not saying this is you OP but we regularly have to deal with issues where someone decides at e.g. age 25 -30 that they want to move out of the family home and try supported living with their mates from college/day services/ football but the parents can't afford for their PIP etc to be taken out of the family pot and are actively mum supportive of the move for mostly financial reasons.

There's a balance to be had here, if it was me coming into your family home and advising you I would be saying yes, the money is his now he's an adult, but he absolutely needs to be understanding that he needs to contribute or a problem with sitting down with him on his 'pay day' and asking for his contribution to the household / phone etc first before he gets to do what he likes with the rest.

That's what would happen if he was in supported living and that's what you can do at home.

Do whatever you can to get to a point where if he's ready to move on for the family home in the next few years that it's a wonderful milestone for him and not something that's going to cause you significant financial hardship.

Ultimately though if he turns round and demands the whole lot there's not much you can legally/morally do as his DWP appointee to stop him unless you have a capacity assessment showing he is incapacitated and a subsequent successful deputyship application at the court of protection,

Yes. But if she gives him all of his PIP to do with what he wants like people (and a SW) are suggesting then what? Who is paying for all that if he doesn't?

I never said she should give him all the PIP.

I see nothing wrong with using it for petrol, college, clothes, counselling I have suggested she saves the rest or uses some to pay for a companion to help him socialise and do activities outside of gaming. The OP isn't doing that and is by the sounds of it using a large majority to pay for household bills and food. All of which the OP was paying for before he got PIP at 16.

My 17 year old dd gets PIP. I transfer the full amount to her as soon as it comes in. Why wouldn’t I? It’s her money. Yes she spends some of it on shite from Japan but overall she is learning to be sensible and budget her money. I am a skint single parent btw, and I could really do with the money but the point is it’s hers.

@Bonsaibreaker

Because CN, child element of UC and caters allowance does not equal a wage.

If DS is her only child OP recieves

£80 pm CB
£289 pm child element
£128 pm mimium disability premium but this could be as much as £402.
That's £500 ball park basic
Plus £268 CA ( this is painfully inadequate I know it sickens me)
So that's £750 just in the child element.
Then they will have the couples element
£509 pm

Then housing element if any.

The family will not be ben capped but will be subject to the work allowance/taper but they still have DHs wages on top of any UC award.

While I agree living off UC is far from easy infact it's virtually impossible relying on the majority of their sons PIP payment is not sustainable either.

You are totally forgetting that the child and disabled child elements are reduced by op's husband's wages and that that carers allowance is deducted pound for pound from UC.

Take out money for his phone, board and some for savings for him in another account, then split the rest into weekly payments for him.

@HouseSitter2B

My 17 year old dd gets PIP. I transfer the full amount to her as soon as it comes in. Why wouldn’t I? It’s her money. Yes she spends some of it on shite from Japan but overall she is learning to be sensible and budget her money. I am a skint single parent btw, and I could really do with the money but the point is it’s hers.

It is not hers. It is to help with the extra costs that a disability brings, so can be used as the appointee sees fit.

PIP is money paid from the benefit pot to make life easier for disabled people and their carers. Not for gaming and trash. It's for extra heating, taxis, funding therapy, equipment that a disabled child needs, paying a bigger mortgage because a bigger house is required. It's not bloody pocket money.

You are totally forgetting that the child and disabled child elements are reduced by op's husband's wages and that that carers allowance is deducted pound for pound from UC.

I didnt I said there will be a taper and I thought it was obvious CA would be deducted as its classed as income. But they can claim the CA premium which is not much at £37 pw granted.

That does not change the fact that they will stll have all of DH wages plus some UC award. Seen as we dont know what DH wages are I was showing what the award could be before deductions.

Social services accused my friend of mismanagement of the pip money so they took charge of it they gave the pip recipient £10 per week and gave mum a contribution to the household bills of £60 a month the rest they put towards a respite care debt nothing for current respite nothing for a bed she needed (mum should pay that out of her carers allowance apparently) they did however agree to provide a tumble dryer but said it was for her clothes only not family clothes (which is obviously ridiculous) now the debt is paid off they still have the money they refused to replace her xbox (online games is all she loves to do) told her she needed to fund her own games clothing extra food out of the £10 a week because apparently pip isn't for gaming equipment so I'm surprised to see so many people saying it is

PIP - Personal Independence Payment. Emphasis on the Independence bit. The whole point of it is to allow him to have some independence in life, its supposed to subsidise where his disability deprives him. So an average 18 year old can get a job, his disability limits this so the PIP means he can maintain a normal life.
If you want to charge him rent that's fine but pick a reasonable fixed amount and charge that, the rest is his. If you don't give him his money he's never going to learn. Your not going to be around forever, your job is to guide him and support him to be as independent as he can.

@Clementineapples

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.

My autistic sons dla goes towards his needs (hospital trips, continence stuff, sensory stuff etc) and some goes into trust for him. I don’t think disability benefit should be used for the carers mortgage etc you’d still be paying the same mortgage if she wasn’t there. I can see why you would talk to her and have some towards electricity and food etc but personally I see that as my responsibility as a parent.

So when the parent has to give up a well paid job to be the full time carer, and the £67 a week carers allowance doesn’t even cover half of the weekly rent? But you cannot work at all because of said full time caring commitments?

If the child wasn’t disabled the parent could be working full time to pay the rent etc…?

Emphasis on the Independence bit. The whole point of it is to allow him to have some independence in life, its supposed to subsidise where his disability
That is very well if he is capable of independence my DD is 13 she has no road sense if there are no traffic lights, she is highly disorganised, she can't put on socks herself and regularly causes herself injuries due to no awareness of her situation.
If I don't close the door she'll walk into it, she sleep walks and stays awake all night weekly from anxiety.
She won't wash or clean teeth without constant instructions, she goes to the bathroom forgetting why she is there.
I can't see how an independent payment will suddenly make her no longer dependent on me and enable me to work ft.

Gosh I can't believe the replies on this thread: if the OP didn't have a disabled 18 year old they might well be moving to a smaller house, or getting a lodger, or using their spare room for AirBNB while their son was at university, or their son might have to get a job and contribute to the rent that way.

Those are all ways in which their living costs may well be being increased by having a disabled, adult son living at home.

They will (potentially) be using more gas because they may be less able to tolerate lower temperatures. Their food may be more expensive because they may only be able to eat certain things. They may have to run a car due to difficulty managing public transport, when I'd they were really struggling for money they'd just both cycle to work or get the bus. They may have the costs of regular hospital parking.

More increased costs.

The earning power of one parent is significantly limited by the fact that if they did work they are limited in the hours and their work may be unreliable due to a need to support their child with e.g. hospital or other specialist appointments or the greater likelihood of illness or a reduced ability to cope with e.g. going to school while having an illness.

If OP went out to work and therefore the state had to e.g. pay for a 1:1 PA for him for 16 hours a day 7 days a week, or even 10 hours a day plus on call while he's at college, and 16 hours at the weekends and in the school holidays (for example) that would cost the state one hell of a lot more than £37 per week carers premium and a tapered top up benefits where 2/3 vanishes for every £1 extra you earn as per my understanding.

I really don't think it's unreasonable to cover some of those increased costs that they are highly likely to be experiencing out of the PIP.

@Moonopoly

Could you charge him ‘board’ so he can see that his money is paying for his accommodation, food etc You could then as PP have said pay the rest to him weekly and perhaps transfer the phone money on the day before it’s due etc Does he have any budgeting lessons at college?

I agree with this

I think someone could actually report you for this if they knew about it OP. Definitely authorities would tell you not to do it.

if the OP didn't have a disabled 18 year old they might well be moving to a smaller house, or getting a lodger, or using their spare room for AirBNB while their son was at university, or their son might have to get a job and contribute to the rent that way.

@Gladioli23 It doesn't work that way. Benefits/PIP are to cover expenses, not compensate people for putative money they might otherwise have been able to get in a situation/alternate reality they're not in.

if the OP didn't have a disabled 18 year old…

If ifs and buts were coconuts as my grandad would say. It is what it is. I also think if ds is at college there’s nothing stopping op getting a job really.

@Babyroobs

PIP is money paid from the benefit pot to make life easier for disabled people and their carers. Not for gaming and trash. It's for extra heating, taxis, funding therapy, equipment that a disabled child needs, paying a bigger mortgage because a bigger house is required. It's not bloody pocket money.

It is also for social activities so if that’s gaming then it’s also acceptable for some of it to be spent on that. Especially if that’s someone’s main or only hobby

Yes some of it but not £600 a month.

I don’t think disability benefit should be used for the carers mortgage etc you’d still be paying the same mortgage if she wasn’t there. I can see why you would talk to her and have some towards electricity and food etc but personally I see that as my responsibility as a parent.

I would disagree.

Some people will need specific properties and/or features that mean they can adequately care for their family member. One of my friends has twins, one has ASD and needs his own room. If he didn't have ASD then they could live in a 2 bed property where the twins could share, but because of his ASD they need a 3 bed property and therefore they pay more in rent. I don't see anything wrong with my friend using some of her son's PIP payment to contribute towards the rent considering that it is higher due to his ASD and unless/until he or his brother move out they cannot downsize.