What do people actually expect DLA to be spent on??

[Whoknowshey]

This comes off a thread I read recently where a poster was being criticised for spending DLA on a fridge .

Im curious as to what people think DLA / PIP should be spent on ? Due to various circumstances I am aware of what people spend it on and I also have a child in receipt PIP so I know how theirs gets spent . Some differs to how my child’s is spent. Some I agree with , some I don’t but the fact is it’s for the individuals needs and that varies massively. Especially with non physical disabilities it would be hard to spend it on things directly related to their needs but there are many ways in which it affects their lives that it can help with .

Some I have came across;

• theme park passes- the child cannot do what others can , going out with friends etc . The passes give the opportunity to enjoy childhood safely.
• Toys/ things for hyperfocuses - a hyper focus is a form of regulation . To some it may look like an obsession with a character but it’s actually a way for the individual to regulate.
• Towards the family income because parents cannot work.
• Furniture - lots can get destroyed due to the individuals issues.
• Save it towards the child’s future . The child may not ever be able to get a job and adult social care is appalling .

I think all those things are justified . But I have seen comments against that.

My child has PIP as a young adult. They have a part of the money as theirs to do with what they wish ( which can be wasted hence why they do not have it all and I am their appointee - but also they have no way of having extra money as cannot work nor claim any benefits , have to stay in education to hold on to that EHCP and to help with their life skills etc ) A part goes into the house because I care for them financially as though they are a child - yet usually parents do not have to do this with an adult child. They know exactly what they are paying for with this - rent, shopping etc, social groups. It doesn’t really touch what I spend on them as the majority actually goes on a mobility car , because they have to be taken to most places . This way they are paying bills etc as they see it - an itemised of what they pay - because I know if they go in to supported living it will be eaten up by that and I don’t want them to get used to just having all that money, I think the way I do it is justified as it is for their needs ( food aversions so more expensive shop , get through clothes very quickly due to sensory issues , hyper focuses , social groups specific to their needs ) .

A bit fed up of seeing people attacked because someone doesn’t deem what they spend as “ for their needs “ yet those needs are so vast .

Interested on thoughts.

Actually what I find hardest about PIP and DLA is it doesn’t take into account expense at all.

I have a condition which is expensive - it costs me probably a couple of hundred pounds a month and is very intensive in terms of meds. It’s high level and very dangerous.

But, because so long as I take my 12 lots of meds a day it is ‘under control’, I wouldn’t qualify. Yet far more nebulous and uncosted conditions do qualify. It’s madness!

My husband's DLA goes towards the cost of running the car, it has to be big so more expensive to run, towards electricity which is high due to the amount of washing and drying, charging his electric scooter and powering his chair bed etc. we also have high heating costs as he feels the cold. I have no idea if it balances up to exactly.

But it’s not there to open doors. It’s there to cover the additional costs of being disabled.

But people get child benefit, maternity benefit, pensions and multiple other benefits. Why shouldn't they also benefit from (frankly terrible) disability benefits.

No not harsh, but all I need to say is he has middle rate and lower mobility so you should understand it is severe enough as that’s not an insignificant award. His condition impacts him less at school than it does at home which can cause an uphill battle with part of the support he needs, but I’m not going to talk about his diagnosis because honestly I’m not thick skinned enough to deal with people on the internet dissecting how hard my son’s life is (or not) because as an exhausted parent to a disabled child it’s too upsetting!

Well Im sure if you have paid that much you are quite a high earner so do not understand what it’s like when you have no money and cannot work due to your child’s condition.

I don’t understand why you think ND individuals should not get it. A ND adult cannot work so should the parents just support them into adult financially? And if so , how?

Why would I not apply for it?

None of the parents on this thread are out of work? Some have declared themselves to be very wealthy!

Surely your child is offered a place at a school though, as the council is legally obliged to do??? If your child is at school all day you can get a job and work like the rest of us do?

Principle? In the hope the funds would go to somebody who actually needed them? The public purse is really struggling.

And my ND child has every intention of working.

But are you taking that out of the bottom
of family income or top.

If the cost of disability is £700, it’s £700. Are you seriously arguing families should not be able to spend money on anything else? Have no luxuries at all?

Tell me you don’t have a child with a disability or SEN without telling me…

How nice for you to be such a high earner. However a lot of families aren't anywhere near as fortunate.

If your ND child costs you more it's not at the expense of your NT child but it may well be for other families. And I dont think that's what people sign up for. That's a comment made by someone who hasn't had the same experiences of others. So judgemental.

I have a child with SEN.

DS receives middle rate (for a physical problem). I spend it on things like gymnastics/dance classes (to improve his core strength), the odd piece of equipment that may help his balance eg gymnastics bars/balance board, and the rest goes into his savings. I’m lucky to be able to do this though and I don’t judge others who need or choose to spend it on other stuff.

Well then you’ve had a very different experience than most of us.

I’m a civil servant so have a good understanding of the “public purse” and that’s not how it works.

I guess it depends on how the child is impacted by neurodiversity. I have a good friend whose autistic child is non-verbal, unable to walk, dress or toilet independently and will never live independently.

My DD14 has autism, global developmental delay, dyslexia and developmental trauma. The impact on her is profound and she needs a level of care far in excess of children her age. Yes children cost money, and some cost more than others. There’s a point where the additional costs of care are excessive and the State steps in to give some support. I don’t think anyone outside of that process can make a blanket statement that X doesn’t merit financial support.

I’m sorry I really disagree that the struggling taxpayer is funding your son’s savings. People will be paying towards DLA who can’t afford to save for their own children. It’s just plain wrong. And most parents pay for clubs. That’s not really a disability expense.

So does mine . He desperately wants it and I desperately want it for him . That does not mean he will be able to,

Sounds like you can afford to help those who don't earn as well as you, so thank you very much!

I think you are misunderstanding how it can work for some children as they cannot access mainstream education and often an alternative provision isn’t suitable or else they have a high level of sickness. Often employers are not able to accommodate an employee who has a high rate of absence.

Getting DLA/PIP for DD also meant I could claim Carers Allowance, which gives me National Insurance credits.

Maybe fewer people should get DLA/PIP and we should instead pay carers a decent amount instead?

I actually have better things to spend it on than those who apparently spend thousands a month on special food. I’m sorry, I just don’t believe you.