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.

Sometimes things like horse-riding and theme park passes are reasonably required in the legal sense in order to meet a disabled child or young person’s needs, which is why they can sometimes be funded via EHCPs.

My elder daughter is blind. This is obviously a very significantly life- limiting disability. She is also a teenager with teen interests. My DD qualifies for PIP at enhanced rates. She will never take driving lessons or own a car. Taxis are expensive. She cannot get a weekend job in our tourist town as who would want to employ a blind pot washer or a blind waitress?

Some of us will still have costs though. How else would we pay for higher gas and electricity bills if our pip went to the NHS? There are aids that the NHS don't supply. Those aids aren't cheap. I actually had to take out a loan to get an aid.

And if you do it for DLA / PIP you do it for all benefits

In my case I use it instead of wages (I only pay for groceries and kids stuff)
I can't hold down a job due to one of my kids autism. When I did work it was just crappy self employed cleaning jobs where people would cancel on me or not pay me for ages afterwards. I couldn't be reliable as my son is really hard to get to and keep at school ( he was doing just 4 hours a day up until recently and he's going to a special school soon IF there's any that will have him, many won't). My husband works a very varied shift job so can't help with childcare and it wouldn't work anyway as my son won't eat or drink unless I give it to him

They haven’t got any. As far as I can see the reasoning is that it’s a disability organisation so they can’t possibly be scientific and will inevitably come out on the side of disabled people. The fact that several prominent disability charities have come to similar conclusions is ignored. There is no understanding of how these studies are carried out, just blanket bias.

FFS. Loads of disabilities are invisible. And severe. Try just keeping yourself alive on a daily basis. We’re like swans.

Of course people with severe disabilities should receive state support towards the costs of that disability.

However, the current system is becoming unaffordable. Taxes are already at a very high level, so all aspects of welfare (including for pensioners) will need to be looked at.

I’m not convinced taxpayers (many in difficult circumstances themselves) should be funding gigs, operas and two week holidays.

They’re not. That’s a farcical thing to say.

Surely you can appreciate the element of choice. Parents of non-disabled children can choose their work patterns to suit their circumstances. Some will work part time to offset childcare costs, or because they choose to spent time caring for their child. I don’t have that choice because there is literally no childcare for children over 12 who need it. There is no regular holiday childcare for children over 12 who need it.

Even if I thought she’d be ok at home for an hour til I got home from work, her school transport won’t leave her unless they hand her over to another adult. At one point I thought I’d need to stop work entirely because I couldn’t guarantee being home at 3.30 every day of the week.

The difference is choice, if I could choose to work full time but decided for whatever reason to be part time well I carry the consequences of that choice. I don’t have a choice because no one is filling in the gaps if I’m not here.

We spend our child’s DLA money on therapies (this is the biggest expense), adaptive equipment and sensory toys.

I have been unable to go back to full time work (this would help my family greatly financially). Every family with a disabled child is trying to do their best.

I agree with this.

Theme park passes- the child cannot do what others can , going out with friends etc . The passes give the opportunity to enjoy childhood safely.

There's a broader public conversation to be had about what the State is for, and what it should subsudise. If we don't have the conversation, the IMF will be having it for us soon enough. Giving people other people's tax money to go out to theme parks is far gone from the original idea of welfare.

Well the law and courts disagree with you.

Yes and pensions are a benefit.
Imagine the uproar if pensioners had to justify their spending. You cant help being old and needing a pension. But you cant help being disabled and needing DLA/PIP either.

My son can’t go to childcare because he needs 1:1 support and in a total opposite to the most mn posters we can’t afford a nanny!! So dla supports me to work 10 hours so I can be there for my son outside of school hours. It also covers sensory toys/ activities and 1:1 swiming as he can’t attend in a group

@Whoknowshey agree the costs of the condition need to be taken into account. This is super hard to do. If i go to M&S as assistance to shop is better then liddle where should it be a pip cost and where a personal choice.

i get angry when people wont use pip to cover costs eg of specialised equippment.

The EHCP system is also becoming unaffordable though, and Labour are going to have to reform it.

I don’t see taxpayers funding theme park trips for much longer.

Not to mention horse riding and theme parks.

"They’re not. That’s a farcical thing to say."

They are on some children's EHCPs.

In my view all aspects of the welfare system need looking at, including for pensioners.

Many people in receipt of DLA for their children are also tax payers, I pay far more in tax each month than I get in DLA.

My DD gets PIP too. For a while it was spent on ADHD meds and assessments privately (now got shared care and an annual prescription certificate); we also used half of it for one to one private counselling/Autism-ADHD mentoring for a while. The rest went into a savings account that has provided a nest egg for uni where she may use it for Ubers when she hits burnout, train fares home and to supplement her cashflow as she is not yet ready to try a PT student job. Hoping to scaffold her into that in Y2, perhaps volunteering in an ND inclusive role. I always felt it was precisely for that - the scaffold her into independence. It meant she could do her access course last year (hence getting into uni) and meant she could fluff up her uni nest room with a visit to IKEA and spend her own money.

It’s certainly not being spent on student holidays or beer. At least not yet, am kind of hoping that it might do eventually though.

My son is neurodiverse. He has ASD Motor and SLi issues.

His pip is spend on a drama week in Summer and weekly drama as it provides an atmosphere where he can join in without his PA.

Expenses of a PA - eg they have a convivial front pizza together from time to time.

He has gym membership and comes with us and that cuts the cost of a PA as he would need one in the evening / night otherwise - we take him for extra sessions to calm him down so pay parking

Odd stuff - eg equipment to unblock the toilet / extra underwear - special knives to help him cut food

We take him on holiday with us and if he stayed behind he would cost approx £2000 for PA care - I would often prefer to leave him behind to get a break. He pays his share ( we do a simple division by 3 but in reality it works out more as we have to get a suite / 2 rooms together)

Additional travel expenses as he bus refuses etc so might have to do an uber

Specific lap top for university to run all his supportive tech - we paid for an upgrade to run the tech - we also paid for additional app that DSA won’t fund

Gifts for the PA at Christmas

That doesn’t change the fact they can currently be deemed to be legally reasonably required to meet needs.

I’ve never heard anything more ridiculous! Who’s paying for the riding lessons and theme parks of those whose parents are on the minimum wage?

My child can’t socialise with others their age due to ND. We do cooking together, jigsaws, play cards, watch films on Netflix. Normal family stuff that’s cheap as chips.

The vast majority do not though. Even taxpayers who don’t receive disability benefits get more from the state than they pay in unless they earn around £50k.