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Original poster

What can we spend his money on?

29 replies

IndiganDop · 21/02/2023 21:10

Named changed for this thread. Long term poster.

My son is almost 22. He is clever but severely autistic with very limited social communication skills.

He was awarded high level pip for both care and mobility, backdated to last Summer, and also started on universal credits in October. He has recently had LCWRA assessment and we are awaiting result.

The problem is, the nature of his needs is that he is very non- acquisitive. He isn't interested in clothes or "stuff". He has a pair of shoes and won't buy another pair until these wear out. He goes nowhere. Since he started these payments he has spent about 60 pounds in total; a couple of McDonalds and a computer game. He doesn't want to learn to drive. He doesn't take part in any activities, though this is on his care plan but the care hasn't started yet.

The issue is, he has 5700 in his account now, and I know if he goes above 6k, his benefits will be reduced.

We have just started him paying rent as we have been paying for everything for him (food, clothes etc) He's paying 250 a month as of March. However his money is much higher than this : around 850 a month at present I think. Should we claim back rent? We could start building a savings pot for a flat purchase for example?

Anyone got any suggestions? Recognizing this is a fortunate position to be in.

OP posts:
JamJarJane · 21/02/2023 21:16

Hell yes. Backdate his rent and stick it in a high interest savings account for whatever he may need in the future. Why wouldn't you?

EdHelpPls · 21/02/2023 21:22

Charging rent is fair. The money is to cover all his expenses (at least that's how we treat my DDs)

Are there any adaptations to the house that would make day to day life safer or easier? Eg door alarms? Does he use iPads for communication that might need an upgrade?

What are his interests? Eg, if really into PC gaming maybe upgrade his pc, desk and chair, faster internet package? I know nothing about console gaming but maybe internet speed applies there too!

Maybe day or weekend trips to do with his interests?

Onnabugeisha · 21/02/2023 21:24

Going over £6k won’t affect his PIP and living with you, I’m not sure he’d get much income based ESA anyway.

Too, the £6k limit to claim income based ESA applies to the household, not just him so squirrelling money away in an account of yours will not work.

It’s ok to take charge of some of it but you should be using the money to arrange therapy and supported activities for him.

Original poster
IndiganDop · 21/02/2023 21:27

Too, the £6k limit to claim income based ESA applies to the household, not just him so squirrelling money away in an account of yours will not work.

I don't think so as he is over 21 they have disregarded our income. Obviously he doesn't claim any housing benefit. His UC is very low - 270 a month iirc - it's the PIP that is making the huge difference.

OP posts:
Original poster
IndiganDop · 21/02/2023 21:32

Eg, if really into PC gaming maybe upgrade his pc, desk and chair, faster internet package?

He could contribute to the internet package though that might be part of his rent.
He had a new gaming chair for his birthday. We could look into a new desk maybe.

OP posts:
Original poster
IndiganDop · 21/02/2023 21:34

It’s ok to take charge of some of it but you should be using the money to arrange therapy and supported activities for him.

Yes he has a care assessment and plan; it's just taking ages for the agency to find a suitable skilled worker. Once one is found, he will be spending money on bus fares, groceries, and activities such as climbing.

OP posts:
MumOf2workOptions · 21/02/2023 21:37

@IndiganDop

What about spending some of it on hiring a nice cottage in the summer as a break for everyone?

seekingasimplelife · 21/02/2023 21:52

If he's building up too much in savings so the value of his benefits claim will reduce - start a pension for him that you can contribute small intermittent amounts to on his behalf, to keep the savings below the limit. Pension contributions are not regarded as deprivation of assets. Something like Vanguard Life strategy funds. Very low fees and little for you to do once it is invested. You can start and stop contributions as required. He can contribute up to £2280 each financial year, even if not working, and it will receive an additional 20% tax relief top up from the government to £3600.

seekingasimplelife · 21/02/2023 21:57

Sorry typo...that should be pension contributions up to £2880, with the government topping up an extra £720 in tax relief.

Original poster
IndiganDop · 21/02/2023 21:58

Great idea @seekingasimplelife
Dh likes that idea too, as realistically he will have a very tiny pension as he won't build up years of service or have a big work pension (if he gets one at all; at present, not ready for work).

OP posts:
junebirthdaygirl · 21/02/2023 22:03

Does he need care? Can you both go out and leave him home alone? Wondering if not could you pay someone to keep him company while you both get a break. Maybe that's not relevant at all

Does he like the cinema? Would he try something new like horseriding as its supposed to be very beneficial? Or massage? Something for his wellbeing. Does he follow any bands so could buy tickets for a concert?

declutteringmymind · 21/02/2023 22:18

I'd say start saving for when you guys can't look after him. Maybe even look at strategies to getting him semi independent perhaps?

declutteringmymind · 21/02/2023 22:19

He also needs to pay for his personal items - toothpaste, glasses, haircuts etc.

Original poster
IndiganDop · 21/02/2023 23:01

He doesn't need care as in he is fine left alone at home - he just stays in his bed. I mean, he is almost always in bed. Sometimes dressed, but that is where he sits/ lies.

Horse riding - maybe in future, but baby steps - going for a walk would be a good start! He lives cats but we have a dog, or I would recommend he get a kitten.

He doesn't need babysitting per se.

OP posts:
Original poster
IndiganDop · 21/02/2023 23:03

Haircuts - lol, he hasn't had a haircut since 2017. His hair is below his bum.
Doesn't clean his teeth, or bath for that matter, except very sporadically and I have to run bath for him etc.
He does have glasses and yes I can get him to pay next time - unfortunately they were replaced a few months before his benefits started.

OP posts:
Fifthtimelucky · 21/02/2023 23:48

If you're thinking about a pension, you might consider a Lifetime ISA. The government puts in 25% of what he saves each year, up to a maximum of £1000.

Onnabugeisha · 22/02/2023 00:35

IndiganDop · 21/02/2023 21:27

Too, the £6k limit to claim income based ESA applies to the household, not just him so squirrelling money away in an account of yours will not work.

I don't think so as he is over 21 they have disregarded our income. Obviously he doesn't claim any housing benefit. His UC is very low - 270 a month iirc - it's the PIP that is making the huge difference.

It doesn’t matter as you’ve just said you have UC instead of income based ESA for him.

PIP will not be affected, even if he were a millionaire as it is a needs based benefit, not a means tested benefit.

seekingasimplelife · 22/02/2023 00:37

Fifthtimelucky · 21/02/2023 23:48

If you're thinking about a pension, you might consider a Lifetime ISA. The government puts in 25% of what he saves each year, up to a maximum of £1000.

A Lifetime ISA is still counted as savings in benefit calculations I believe, so it would not be suitable for the OP's query. A pension, however, is not regarded as savings.

seekingasimplelife · 22/02/2023 00:42

@Onnabugeisha 'PIP will not be affected, even if he were a millionaire as it is a needs based benefit, not a means tested benefit.'

But savings accumulated from PIP can affect his UC payments, if they exceed the £6K limit.

Nat6999 · 22/02/2023 00:48

Just charge him board & bank the money for him, does he want a better television for his room or a better console? It doesn't matter what he spends through money on, anything that will benefit him, if his interests are gaming & movies then buying things that serve his interests & help his mental health are good.

Onnabugeisha · 22/02/2023 00:58

seekingasimplelife · 22/02/2023 00:42

@Onnabugeisha 'PIP will not be affected, even if he were a millionaire as it is a needs based benefit, not a means tested benefit.'

But savings accumulated from PIP can affect his UC payments, if they exceed the £6K limit.

Yes, that was covered in the OP? What’s your point?

The OP seemed worried about the PIP income as that is what “makes the difference”….it doesn’t matter how much of it he saves, his PIP will not be reduced.

seekingasimplelife · 22/02/2023 02:21

@Onnabugeisha - OP states: 'The issue is, he has 5700 in his account now, and I know if he goes above 6k, his benefits will be reduced'.

Which benefit would she be referring to? It's UC not PIP - that's my point. OP is concerned that savings accumulated from PIP will affect UC benefit entitlement.

DarkedOn2219 · 22/02/2023 03:17

If he's going to be going out in the bus and grocery shopping with a support worker would he find some really good noise cancelling headphones useful? The really good ones are expensive. If there's any barriers you're aware of for him being able to be out in the rest of the house or out of bed more that could point you towards useful purchases. Sensory regulation stuff if he has sensory struggles. Some examples here www.sensorytoywarehouse.com/product-category/sens-rooms/

It doesn't sound like he has high movement needs like my boys, so probably not, just thinking of things he might not access with being at home a lot, like exercise. A treadmill for quite walks if he'd be open to that. Gaming machine with sports games, like ninetendo switch. Pool membership? My DC love swimming at the pool at quite times. The water can be really peaceful.

TheMatriarchy · 22/02/2023 06:55

If he is capable could he pay do some online courses that might lead to home based employment. Learn a computer language or database programming. There is a massive skills shortage in some of these areas, might be worth getting some specialised careers advice on this too.

rwalker · 22/02/2023 07:00

Decorate and furnish his bedroom carpet curtains and tech

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