To tell DS 16 how much PIP money he is entitled to?

[RebeccaMillett]

DS 16 has recently been awarded higher rate of PIP in the transition from DLA - it’s over £100 per week.

DH says we shouldn’t tell him the amount of money as he will waste the money on buying sweets and general rubbish. He’s probably right, DS doesn’t have a great sense of money and we are trying to teach him about budgeting.

He currently has £25 a week pocket money and is going to college in September when we’ll increase it to £50 per week.

we don’t spend his money on ourselves we either put it away for him or use it for things he needs such as clothing and shoes, but I feel a bit bad that we are keeping it from him?

I’m not sure if this is the right decision- it’s probably sensible but I just feel bad as I don’t like having secrets. DS is very intelligent despite his disability and I’m worried that of course one day he’ll find out he was entitled to that money and we didn’t tell him and he’ll resent it.

once he’s 18 we will of course give him the full amount. Is this the right decision?

He s a teenager
Nothing wrong with greggs!!
Seems like lots of life skills nedded and dealing with money
Eg you can give away max 10 a month .
Will college be teaching life skills or is it regular aAlevels ? If he going to be doing regular uni then clear life skills instrux

While I know that there are some learning disabilities which mean the person has limited capacity, assuming your DS is at college, is going to be assumed to be leading a normal life when he leaves college at eighteen, there is no reason why he can’t know about PIP and what it’s for.

I have an autistic child sailing through university in his special interest subject, seriously intelligent it not truly understanding finances etc. Being intelligent doesn't always mean understanding and being able to manage finances or other day to say aspects of living.

I am not sure whether he specifically needs to know. I guess it would depend on his attitude. If he was likely to be happy to have some and save some for college costs etc., then no reason not to. But if you were likely to encounter pressure and awkward behaviour around not having it all, then I wouldnt say so until I had to. But I would be doing it in his best interests, to avoid him pisding it up the wall, as the saying goes.

My adult son gets PIP and he cannot manage money. That was one of the sections he scored highly in. He is aware he needs assistance to plan and look ahead. I have said at some point he is going to have to pay someone to help him do this, but in the meantime I do it.

He has given me access to his banking app and I remove most of the payment as soon as it is paid in, just leaving him a tiny bit of money in his account to spend on Xbox games or other on-line crap. I give him a larger amount of cash back every week and he is much better at managing physical money week-to-week as long as he knows what needs to be paid for. A large amount of monthly money in his account is just numbers.

I do keep a record of what I have taken though, how much was given back in cash, how much went towards household expenses and how much into his savings etc., It's all written down so he can see if he wanted to.

His school/college might be very helpful - do they offer PSHE lessons in this at all?

He will need to learn that first of all, you pay your priority bills, then others, then food, then travel, then fun spends, which he won't necessarily learn from 'here's £400, off you go' - or 'here's £200' - as it makes no mention of anything other than 'treats'.

Could you tell him he gets more than he receives in pocket money because there are additional costs that you currently cover, but not be specific. And talk about the different things it'll have to cover, not just fun money.

The main cost of an adult having autism is they are sadly unlikely to be able to work full time which means you may be supporting him for years to come.

If he struggles with money you may still need to give him an allowance when he turns 18 and use the other money for added costs - food, clothes, his share of holidays as he won't be able to afford in own right if not working etc etc.

He is on an ‘Independent Learning Skills’ course starting on the highest level with the option of moving to a different (subject related) course if he chooses to. I don’t think he’ll be going to Uni, I’m not sure what he’s going to do when he’s 18.

For those who have adult children with Autism, do you mind if I ask what they do if not in education? I’ve thought about this a lot and really don’t know how to support my son effectively, I guess it comes down to what skill sets they have?
my son is not academic, but is very good with people (polite and engaging), helpful, and very eager to please. Should I suggest some kind of voluntary work to gain experience? When he’s 18 I obviously want him to have a plan / goal but he just shrugs when we talk about his future.

Have you considered a job?

McDonald's would be an ideal employer for him.

They pay well and have lots of shifts to choose from, training given etc and they will find his strengths and get the best out of him. He could be looking for part time work now even.

I presume DS has an EHCP? If so, that can continue until 25 or, in some cases, 26.

i think he would enjoy the idea of working in McDonalds (or similar), my concern is these environments can be very busy with lots of employees working in a small area, I’m not sure he would cope with the noise or need to process information quickly- although presumably training is offered and he would be supported by his manager. I’ll look into it.

I didn’t know that, I thought EHCP was just to do with school and education

Does anyone say their child has autism when applying for work? I know it’s relevant but wasn’t sure if it was something you should automatically let people know when initially applying?

Absolutely. He will be protected by law.

It is to do with education (and also health and social care) but it can continue until 25 or, in some cases, 26. The scope of what is considered educational provision is wider than many realise e.g. it covers preparation for adulthood and therapies. It could also cover supported work experience, supported internship, supported apprenticeship.

At that age my child's PIP went into the household pot and not kept separately for them.
They had an allowance but the extra costs due to their disability fell to us - such as me not being able to work full time and having to drive them everywhere as they couldn't use the bus.

Brilliant thank you- I wasn’t sure if it would be received in a way that may be interpreted like my child is special so you are legally obliged to give him a shot or similarly it may be dismissed because he has autism. The difficulty is in these cases presumably employers would just say ‘he’s not a suitable candidate’ (regardless of autism) so therefore we wouldn’t have any case to argue.

Hopefully there are employers who won’t judge on the application form - I’m not so sure though

My nephew (16) receives pip, dsis told him how much and he wanted it to be given to him for Xbox games etc ( he doesn't leave the house ever). My dsis told him it was to cover the costs of his disability not for spending on Xbox games.
He's accepted this and she gives him an allowance.
Dsis is a single parent to two DC and is disabled herself so unable to work, his pip goes into the household budget

Sounds right to me. Its in his best interests. Don't beat yourself up about it. X

Use these two years to get him used to the idea of what PIP is meant to be used for and budgeting

I’m autistic and so is my child, same age as yours. My child would also struggle somewhere like McDonald’s. He has a part time job, he likes being outdoors. Something like gardening might suit your ds?

My ds will likely go to sixth form but he prefers practical work to academic, and dislikes busy environments.

I would discuss with him whether he wants to disclose autism in a job application. I personally have because it’s relevant and important and any employee who saw it as a negative wouldn’t be a good fit for me anyway.

My ds did disclose when he applied for his part time job. I think also that if you are helping him apply, speaking directly to his employer, sharing that info will explain why.

My dd always knew about her dla and pip. She also knew that it was used for her music lessons, fees for exams, petrol to take her weekly across the city for counselling and anything left over went into the family pot as it was due to her autism that I couldn't work full time. It's really important to have these conversations with them from a young age so they gain the independent financial skills they will need. She as an adult is mean with her money, incredibly careful to the point of ridiculous - she's semi independent, currently hoping to be fully independent in a year (she'll be 25 then) or we would seek independent living support from social services (conversations already happening, we've agreed that 25 is a good cut off)

Yes that makes sense. Luckily his Dad and I are able to work and he does have a free bus pass (not that he goes far, just to the town centre to look in the shops) but we still have to collect him frequently on demand (as he’s got lost or got on the wrong bus), luckily his Dad works from home and is always available to collect him, and I’m always home by 3 so can take over so DH can concentrate on work.

Thinking about it there are a lot of costs I had overlooked- frequently replacing underwear (he can’t clean himself properly due to mobility), he pulls all the elastic out of his socks, he often will have holes in his pyjamas or pull off buttons on his school trousers so obviously I replace these straight away. He has weighted blankets which are expensive and need to be replaced as they are too heavy for the washing machine, special dietary requirements etc.

I think I had just gone on autopilot and not really thought about how it all adds up!

Thank you, yes he loves being outdoors, loves animals. I did contact our local community farm a while ago for him to volunteer but they didn’t have any availability so I’ll try again.

I also highly recommend McDonald's as a part time job, they were brilliant (franchise so I'm aware that does mean there's potentially variation) dd did breakfast which has half the staff on cooking