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.

"Theme park passes are not a "need". Lots of children in less well off families can't go to theme parks."

The poster gave a pretty good explanation that it was because some disabled children can't play out with friends.

School may be free, but I’m spending £400/month on specialist tutors. Therapy may be free if your child meets the threshold, there’s a suitable therapist available and you can actually get your child there, which certainly isn’t free. SALT provision is non-existent, private provision wasn’t free. My child is in a specialist school - there’s no meaningful additional therapy available there for her combination of needs. She needs glasses, replacing them every 6 months isn’t remotely free.

Autism isn’t one thing though.

My son has an autism diagnosis, it’s definitely disabling, but, he has a degree, he has a job, he needs some support from us but not to the extent he claims or would qualify for PIP.

You also get adults with autism that are non verbal and functionally incontinent.

And a huge range in between

It will all stop? What does that mean exactly, will all the disabled people just magically get jobs and stop being disabled.
Will the Reform government provide jobs, flexible working, support? I doubt it, as there aren't enough jobs now for everyone.
Employers won't choose someone who has been out of work for years on disability.

I doubt it, as the Tories were in power while all of this was going on. None of them seem to know how to address it.

And Labour know it’s a problem too - they just get voted down by their backbenchers.

I second this. I'm going to make one last appeal to you. Being disabled is NOT fun. It's exhaustion, hospital appointments, scans, loneliness, struggling, fear, pain and heartbreak. It is not the life you seem to think it is. Disabled people are not laughing all the way to the bank. They are worried about their health, or maybe resigned, and know - despite being able - the world is not set up for them. Employees are not disability friendly. And to have cuts and be told "this free system is unworkable." Well, it's not something we wanted...

My son gets DLA- higher rate of care.

It goes straight Into a savings account which I then take from as he needs things.
His DLA has been spent on,
1 hearing test that couldn't be completed but I thought his communication issues may stem from a hearing issue.
A consultant appointment about his glue ear.
Specialist hearing test
Consultant follow up
A wagon as he cannot walk safely,
A SEN reign set for places he can go safely.
Private Speech and language therapy.
Educational psychologist assessment,
Paediatric occupational therapist.
A bed that we can travel with as he needs to be contained and can escape travel cots.
....that's his back payment and everything he's had gone.

I'm still paying out for:
Travel to his private appts- an hour or so each way.
Private prescriptions
Private dental appts- £25 a time. We need them fairly regularly as he has PICA and eats everything so I have to get his teeth checked for cracks etc.
An ipad used as an AAC device, The AAC app, and insurance.
His incontinence pants.
Additional clothes when he chews holes in his. Socks- 7 pairs he put holes in on Thursday.
Replacement furniture- he got up last week, ripped his drawer locks off, and then pulled a drawer front off, and decimated the frame of the drawer... £150 to replace.
Bed guard- £35 to replace as he smeared on it.
£200 for a carpet cleaner to come out when he smeared all over the downstairs and his room in one day.
I also need to replace his Dads glasses as he dashed them off his face a few days ago.
Not to mention, having to babyproof everything like he's a baby.

I think it's fine to spend DLA on something that another parent would spend a wage on.

My child (no disability) has been going to a childminder part time since he was 9 months. I have been working part-time since then. For the last few years (he's now 12.5) we've had no childminder because he's old enough to be in the house for an hour before school and an hour or two after. My husband works full time.

My friend has 2 disabled children
child 1 was in and out of school and has now left school at 16 and is a recluse.
child 2 is younger (13-14) and is in and out of school, generally more out than in.
She cannot leave the younger child alone for hours on end. If he does part days at school she has to facilitate because he can't cope with traveling alone and obviously the school bus only goes at set times.

We live on 1 and a half wages. They live on 1 wage as a direct result of the children's disabilities. If her children were not disabled, she could work as many or more hours than I do. I have no idea whether she gets DLA for either or both kids , but if she does. why shouldn't she spend it on something she can't earn for because she is caring for them? Maybe not if it was NOTHING to do with the children, like fancy clothes for her, but if it's something that would benefit them, that she could earn for like I do, but she can't earn it because she's their carer, then why not? Having to stay home with a teenager who can't cope on their own is definately a cost of disability!

Just because it goes in the general pot doesn’t mean it’s not needed. In my experience the general pot pays for things like increased utility bills because of incontinence, personal padding, bed and furniture protection, increased electricity bills because vital equipment needs to be charged, saving for equipment/aids beyond the bog standard and often unsuitable/uncomfortable standard provision.

If i get it for my son depending on the amount. Ill spend it on his private medication or on private OT therapy or at least towards that cost.

But if acknowledge i am very privileged that I have a job a house and money for fridges, holidays and days out.

I will use it for the unplanned expenses and needs that suddenly have arisen

I think what your child spends it on sounds fantastic and super appropriate op, but also it’s none of my fucking business and people who think everyone who claims benefits should be living a life of penitent misery needs to get back to Victorian times where they belong!

This country, like all, has many problems. Perhaps, the biggest being a chronic lack of empathy.

I couldn't tell you if it's gotten worse over the decades or it's always been like this. What I can say, is that I find it utterly disheartening and depressing.

Oh dear… I hope you’re never in a position to need benefits.
Yes, there are people who might exploit the benefit system, just like there are people who will do their best to exploit the tax system to avoid paying higher rate tax, or people who will do their best to hide how much money they have to avoid paying care home fees despite owning a £1m property, or people who will ask their customers to pay in cash to avoid paying income tax. Are you going to moan about them too?

Happens on all these threads. I’m waiting for the post from someone who has disabled children but is well off and doesn’t claim these things because they don’t need them, but has no understanding of those who do.

To add, I was of the mindset that it was so easy for many people claim dla but it is a rigorous process that needs a lot of medical evidence.

Also, since becoming part of the community, yes there is a significant amount of parents who have issues and find it difficult to look after themselves. Yes, I do know quite a few who have 5 plus kids and are basically a bit hopeless and rely on the council and schools to help them because they can't manage. Yes, these parents don't know how to cook, manage behaviour, hygiene and are invited to support sessions but their anxiety stops them from attending.

So yes, they have become accustomed to being looked after but at the end of the day it's the children who need to be supported as well. The issues they have may well be due to parental lack of intelligence/incompetence etc but the dla money thay are entitled to does help to buy those frozen foods, get a taxi to the supermarket.

I know this sounds brutal, it's because it is brutally realistic IME working in schools, for sen care and observation. Xxx

Well they could start by being honest. Before the last round of cuts were introduced not one MP who made a speech or was interviewed, seemed to know the difference between disability benefits and sickness benefits. If they don’t know the intention behind the benefit how on earth can they make sure it’s administered properly ?

I’m sure the parents would rather not need DLA, it’s not easy being a parent to a disabled child.

People can judge and say “they’re not disabled enough” but the reality is some people have no idea how hard day to day life can be, and they would never want to be in the shoes of those parents.

I imagine some parents do abuse the money, but for most families its such a help.

because people who are poor can work and over time get better jobs through promotion, disabled people often cannot.
poor kids can still go out the play with their friends and go to school clubs to learn sports and take advantage of youth clubs and other services to help those who are disadvantaged in that way. Disabled children cannot.
Poor teenagers who want some extra cash to be able to normal teenage things can go out and get part time jobs, disabled teens cannot.
Poor parents can get extra food from food banks, they aren’t restricted in what they can eat, disabled kids with ARFID, or on peg feeds etc cannot.

I’m not saying poor people have it easy, they clearly don’t, but there are services for poorer families and ways to help that can be utilised that a disabled person would not be able to. Different marginalised community, different ways to improve things for them, both deserve it!

If my child didn’t have a disability I could work full time, I do work nearly full time but need flexibility in the week which reduces hours give. If I worked full time we would have a very nice life indeed, as it is DLA fills a bit of that gap - not by much, but a bit. I’ve worked out that I’ve lost around £200k in income purely because my working hours are restricted because of my child’s disabilities. The toll would be much higher if I then added up the additional material costs. The £340 DLA doesn’t even touch the sides, so if I spend it on Alton Towers it’s no one’s business but mine.

My kids are adopted. So I’ve also saved the local authority about £1million in care costs for my two kids.

Oh my goodness! I wondered who the hell could afford to go to gigs and theatre - I certainly can’t - and hey, now I’ve found them! All I need to do is claim DLA for my ND child and they can be us too!

Some at the moment is paying for a family holiday, I don’t give a shiny shit if other people don’t approve of that, in the last 2 years We’ve had a seriously rough time and I nearly died, so if I want to spend some of my PIP on a cottage by the sea for 2 weeks which is accessible for me, and safe for my boys to have fun I will
And that's you right, but I hope you appreciate that some families will also go through times of hell but won't be able to afford any form of holidays.

A friend of mine lost their property due to their landlord selling. It had been their home fir 15 years and they loved it. There were no similar homes for rental in the area so they had no choice but to move 10 miles away. Both work and wouldn't have been able to take their kids to school so the kids had to change school mid year which was very hard. Their pet go run over and although they had insurance, it didn't fully cover the fees. In the end, their dog died a few weeks later. Then her mum passed away unexpectedly. I won't add to the the stress and pain they experienced, but sadly, there will be no holidays for them for years to cone because after the costs of the move, the vet bills and financially helping her dad, any extra they receive through work will need to go paying their debts.

It's not a race to the bottom, enjoy your holiday, but I hope you appreciate the opportunity you have to do so and realise that others who would also deserve one won't be able to afford it.

My mum looked after my sibling until she was 90. He has quite severe LDs along with autism and epilepsy and once he left school at 16 was at home with her. She could never work, and his benefits, including PIP went into the pot and was spent on whatever she thought he needed. When he was in his sixties and mum died he went to live in a home that costs more than £2,000 a week. Mum looking after him for all those years was a lot cheaper for the state than the cost now to the council.

Nor would I. I actually agree with you. My friend's daughter, now 22, doesn't talk and will never have independence. That, to me, is autism. But we keep hearing people on the radio talking eloquently about their autism, and I'm constantly surprised to learn that people who seem entirely normal have been diagnosed as autistic. Sometimes a parent diagnosed at same time. It's like walking on eggshells. Sometimes if you say anything that implies you think autism is anything other than positive, because we need people who view the world differently, you inadvertently cause offence.

Yes to me the general pot just means my bank account that everything comes out of. I do not have a separate PIP account. What would be the point of that?

god I’m worried I’m spending mine wrong now ! My son just got awarded DLA a few months ago. I use some for his pocket money (about £10 a week) I put a bit in his junior isa account to try and get his savings built up. I give a little to my parents who care for him 2 days a week so I can work - my son is on online school so would have no way to work otherwise as am a single mum- pay for a swimming membership for him, quite a pricey one because he can’t stand busy pools and the loud echoing public pools often have and the rest into a little savings account to have towards little trips / outings for him . I’m intrigued by what others have said though, as my outgoings have gone up massively with him home all day needing the computer /heating on as well as all his meals etc at home