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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

231 replies

Whiskyinajar · 04/11/2021 14:55

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.

OP posts:
Samedaysame · 04/11/2021 19:32

A friend of mine has a son who is 22 at college, he receives both PIP and UC. our local MP sorted this out for them. This should also be the same for your son. Please contact your MP and ask them to intervene.

BadNomad · 04/11/2021 19:52

The OP has already said that she has not been able to work regularly because of her son. You know, like a lot of mothers who have children. Except her child will never grow up to be completely independant. So disability or not he does have an impact on family finances by living there and depending on his mother. Stop making out that she's being selfish.

You can really tell who the people are here who have never lost their life to caring.

fizzypop100 · 04/11/2021 19:56

Op I understand your situation. Our son can't be left home alone. I haven't been able to work due to having to constantly be here for him. He also goes missing sometimes. It's a safeguarding risk if I'm not here to support him.
We can't pay for all his needs on one wage.
He is on DLA at the moment but will have to move to PIP next year. Parent carers are left in a difficult situation. He would without a doubt spend any PIP on rubbish and will be easily influenced by others to spend it on them. He has low self esteem and would try to "buy" popularity.
Why can't the government see that our children don't magically change and become responsible at age 16?
The activities he does keep him regulated and without them he will spiral downhill. Evidence of this was lockdown. His particular activities stopped and it go so bad we had to have MAST support.
Who would watch over him during the 13 weeks of college holidays? And the course he has chosen is only 3.5/4 days a week from 9-2.
I hope you can raise your situation with the DWP and explain your son's vulnerabilities.
Would this allow you manage the money on his behalf?

Clementineapples · 04/11/2021 19:57

*The OP has already said that she has not been able to work regularly because of her son. You know, like a lot of mothers who have children. Except her child will never grow up to be completely independant. So disability or not he does have an impact on family finances by living there and depending on his mother. Stop making out that she's being selfish.

You can really tell who the people are here who have never lost their life to caring.*

My son is severely autistic. I’m a single mum. I can’t work and I have had no job, no friends, no life for 11 years. He will be with me until I die. I would still not take his benefits to pay the mortgage. I chose to have him, he is my responsibility and that responsibility will unfortunately continue for my entire life, that however is not his fault. So if he wants a game or whatever that comes out of his dla while I’m struggling for a grocery shop, I will make it work.

Poppadoms · 04/11/2021 19:57

@stingofthebutterfly

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.

This is precisely what people don’t understand. We would end up with a whole load of unnecessary stuff too and it’s not simple to just explain or let them learn from a mistake because often the understanding isn’t there so you can’t make an example out of it to learn from

I wish people could understand but they can’t. Can you imagine a thread of people who are totally able bodied telling a 24/7 wheelchair user how to navigate an impossible situation ?

julieca · 04/11/2021 19:58

@BadNomad yes that is true. But most teenagers who are disabled do move on to supported housing or semi-independent living at which point those benefits go with the disabled adult. So families have to plan for that.

BunNcheese · 04/11/2021 19:58

Give him a weekly budget then if he spends it he will soon get the hang of budgeting OP.

BadNomad · 04/11/2021 20:03

@Clementineapples

*The OP has already said that she has not been able to work regularly because of her son. You know, like a lot of mothers who have children. Except her child will never grow up to be completely independant. So disability or not he does have an impact on family finances by living there and depending on his mother. Stop making out that she's being selfish.

You can really tell who the people are here who have never lost their life to caring.*

My son is severely autistic. I’m a single mum. I can’t work and I have had no job, no friends, no life for 11 years. He will be with me until I die. I would still not take his benefits to pay the mortgage. I chose to have him, he is my responsibility and that responsibility will unfortunately continue for my entire life, that however is not his fault. So if he wants a game or whatever that comes out of his dla while I’m struggling for a grocery shop, I will make it work.

You'd rather struggle to feed your child than use the money that is there to help them? Ok.
Crikeycroc · 04/11/2021 20:03

SW suggested I transfer all the PIP to him and let him cope with the mistakes he makes.

So using that logic you should get a full time job that makes you unavailable to assist your DS during business hours and let him cope with his mistakes… I’m genuinely surprised that you’re not expected to have the majority control over this money. Presumably if your son didn’t have a disability he would have a part time job to pay for his phone and clothes etc or at least he wouldn’t require all the extra time you currently spend on him to your financial detriment. Personally I would charge him board if he is going to be in control of the money.

BadNomad · 04/11/2021 20:03

[quote julieca]@BadNomad yes that is true. But most teenagers who are disabled do move on to supported housing or semi-independent living at which point those benefits go with the disabled adult. So families have to plan for that.[/quote]
Yes. Then the OP can work full-time.

julieca · 04/11/2021 20:15

@BadNomad you have to plan for it, its not that easy to move from not working for years to a full-time job.

Clementineapples · 04/11/2021 20:15

You'd rather struggle to feed your child than use the money that is there to help them? Ok.

If I couldn’t make it work of course I’d dip in but I wouldn’t assume the money is there for me to use on household bills and stuff. I get carers etc and I make it work.

VividGemini · 04/11/2021 20:19

I’m genuinely surprised that you’re not expected to have the majority control over this money

He's 18 - do your parents get control over your money?

BadNomad · 04/11/2021 20:19

[quote julieca]@BadNomad you have to plan for it, its not that easy to move from not working for years to a full-time job.[/quote]
I know it's not. I'm in that position. How do I plan ahead for something that is not happening yet?

julieca · 04/11/2021 20:22

@BadNomad OP is going to start working 10 hours a week in January. Something like that is a good start.

BadNomad · 04/11/2021 20:22

@Clementineapples

You'd rather struggle to feed your child than use the money that is there to help them? Ok.

If I couldn’t make it work of course I’d dip in but I wouldn’t assume the money is there for me to use on household bills and stuff. I get carers etc and I make it work.

There you go then. You would spend it if needed. How to you know that's not what the OP is doing? Would her son not suffer without food or a car and petrol to transport him? I'm pretty sure he'd suffer more without those things than £800 on Playstation games.
Clementineapples · 04/11/2021 20:23

My point is specifically why his benefits should contribute towards a mortgage which would be the same regardless of whether he lives there or not?

jamiejamiejamie · 04/11/2021 20:27

My DS17 is autistic and gets £625 a month Pip I am his appointee he is very vulnerable to financial abuse from others in his peer group trying to get him to buy alcohol and cigarettes he would be fleeced alive if he had this amount. We've just reached an agreement I pay his season ticket each month, college trips etc, a set amount for lunches and spending money when it's gone it's gone. I'm going to pay him weekly. I am also putting £200 aside per month for him to buy a car in due course. It's funny they don't become responsible/able to deal with finances just because they're over sixteen. I'm hoping this works it is a very difficult time.

BadNomad · 04/11/2021 20:29

Because if he wasn't there the OP would be able to work and contribute towards the mortgage. Him being there and not contributing likely means they would struggle to pay the mortgage. 3 adults (1 with additional needs) supported by 1 income.

Bonsaibreaker · 04/11/2021 20:32

It is a good idea helping him for the future.
You aren't holding it back you're managing it by saving for him.

Emerald the OP isn't saving anything for his future. She is giving him £150 pm £15 of which is for his phone, then the the rest of his PIP money is for petrol and some clothes the rest goes in the family pot.
The OP is already receiving CB and child element of UC plus disability premium as part of her UC award so why does his PIP have to go in the household pot too?
I could understand if she was saving for his future but she's not.

Viviennemary · 04/11/2021 20:34

Id say the PIP is for your sons extra expenses not as a general top up for household income.

BadNomad · 04/11/2021 20:34

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?

Clymene · 04/11/2021 20:41

Things my child's DLA pays for:
Super fast broadband
Petrol because he can't take public transport
Clothes because he will only wear very expensive socks and ruins quite a lot of things through chewing/tearing at them
Specific kinds of branded foods
Cables and chargers because they get broken monthly
Furniture which he breaks

Off the top of my head.

OP - I think you'd be better off posting in SN children. AIBU is full of twats who have no idea about raising disabled children

Bonsaibreaker · 04/11/2021 20:43

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.

itsgettingwierd · 04/11/2021 20:45

@Bonsaibreaker

*It is a good idea helping him for the future. You aren't holding it back you're managing it by saving for him.*

Emerald the OP isn't saving anything for his future. She is giving him £150 pm £15 of which is for his phone, then the the rest of his PIP money is for petrol and some clothes the rest goes in the family pot.
The OP is already receiving CB and child element of UC plus disability premium as part of her UC award so why does his PIP have to go in the household pot too?
I could understand if she was saving for his future but she's not.

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

If you can't work because you are caring for someone disabled then the pip helps cover this.

I agree with above poster that some people have no idea.

I'm flabbagasted people think PIP should be used for gaming and not for petrol, phone and clothing etc.