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.

It isn’t uncommon for schools not to recognise masking, or not recognise it for what it is, and the unmet needs arising from that. If a DC masks at school, they may well mask with someone else caring for them for a few days too.

Some diagnostic reports and GP notes provide that ‘wealth of evidence’. Some diagnostic reports are incredibly detailed. An assessment that follows NOCE guidance involves an MDT so one diagnostic report can provide evidence from multiple professionals.

So you’re backtracking on virtually everything you’ve said then ? You were adamant that there was fraud here, and you also stated quite clearly that a diagnosis was needed for a claim, and that GP notes were all that were needed to secure it. None of which is the case, as the majority of people here who have exhausted themselves trying to get a fair award will tell you.

The reason robust medical evidence from appropriate medical professionals is needed, is because without it, you are more likely to be asked to a face to face or phone consultation. Which means that you are more likely to be at the mercy of an assessor who may not understand your condition fully, and their subsequent report, on which benefit depends in the absence of your own evidence, may not accurately reflect the level of need. But you crack on, because you seem to have some knowledge which has clearly escaped the rest of us.

Why haven't you reported her if you believe the claim is fraudulent?

You remind me of someone I uses to know who told me there was nothing wrong with me and I shouldn't be getting DLA. Aside from the fact that my vision was severe enough that I wasn't allowed to drive and at the time I couldn't read standard size print (in now unable to read what's classed as large print)

Wrong on all accounts!

I never ever said there was fraud.

No, I didn't say a diagnosis was needed for a claim. I said that a diagnosis and GP notes can be sufficient evidence. Some successful claims don't need a diagnosis.

Please quote directly where I stated any of the above. You won't be able to because I didn't write any of it

The ‘cost’ is being unable to have consistent full time earnings because of crappy shitty does not do what it says on the tin educational support services.

Where have I said that the claim is fraudulent? I don't think there is any knowing deception going on.

Do people with non disabled children have any idea at all about how difficult it is to qualify for benefits? If your children do not have severe illnesses or disabilities, then thank your lucky stars. I am telling you,I would bloody love it if my kids were all healthy.

She is not without her needs and as I outlined above, I think problems might be brewing in the future but it is bordering on bizarre to claim that a child that I have such a huge amount of contact with is concealing such severe care needs.

A diagnosis and GP notes is indeed sufficient.

From your own posts upthread.

Sorry, where does this suggest that I think the mother is committing fraud or that a diagnosis is always needed for a successful claim?

For us it helps pay household bills so I can work term time, school hours as no breakfast club or afterschool or summer scheme could cope with needs.

So so what if someone brought a fridge.

I imagine most dla goes into the family ones pot to cover bills, replace items that are broken, buy specilised food, buy kids clothes - mine shred their cuffs, one to one swim lessons as cant cope in classes. The list in endless

We can’t afford to top up people’s income like that.
benefits should be only for basic needs related to survival, really. Not nice to haves and not “compensating cost of disability”. Park passes and fridges - ridiculous.
in an ideal world it would be nice but not in the current reality.

But you're seeing this from a certain perspective. You have no idea what time and effort goes in to achieving the presentation that you observe. DD3 was a perfect student by mid primary (early primary was slightly tricky and she did get obsessed with hand washing). Every teacher said that if they had a class full of DD3 they'd be the luckiest teacher in the world. She was getting grade 9 results in most subjects. She was in the audition only drama club, the audition only chamber choir, the sports clubs. She really was an all rounder. But when the social demands increased in year 8, then the OCD started in a very minor way that we couldn't identify as OCD at the time (it manifested as 'fussiness'), then a boy threw a pastry item that hit her skirt on the bus, then the OCD worsened...by early year 10 she was spending time in the SEN block, then they were having to disinfect her worksheets, then she wasn't able to open doors with her hands , then she was bullied... She ended up completely out of school. She was then placed in a special school but couldn't cope with interaction. They spent 6 months working their way up the driveway and into the house, then in combination with psychiatry and medication, she was finally able to start going into school.

None of that could have been predicted in year 6, or even year 7. The most that could have been said is that she was highly strung with sensory issues.

For is it does cost extra to go to a venue with DS though. I can’t take him alone he needs a 1-1 and while you think oh yes that’s you plus DS actually we need a further adult in case I need to use the toilet for example as I cannot leave 15 year old DS alone neither can I take him with me. So 1-1 and in our case actually means we need 2. Even buying a coffee or lunch we need to ensure DS can be seated etc before we order, then if you have to go up to order someone needs to be with DS. So in that respect having a ‘free’ carer ticket is meeting DS basic needs.

I don’t really understand why anyone begrudges a family with disabled children an extra ticket to a venue. Like why do people actually care?

I don't dispute that generally the problems tend to get worse for girls with ASD when they enter the more tricky teenage years. It is definitely a risk for my friend's daughter. Right now though, things are going well and she largely lives a very 'normal' life. She has a few quirks and needs that are out of the ordinary but nothing hugely significant and certainly nothing that costs a lot. I know people will say I don't know this but I can't go round in circles again pretending there are loads of unknown needs that I don't know about, her mother is concealing and are so well masked that there is no evidence of them for weeks at a time.

I can't stress enough that none of this means she doesn't have ASD, that she is guaranteed to cope like this in the future or that the costs associated with her disability won't suddenly spiral. Right now though she still receives DLA. You can think this is right or wrong or completely made up. I'm just a random on the internet like everyone else.

Agree

I think a lot of it is because we're getting something they're not. But if I wasn't disabled I could go by myself safely to places and actually take part fully

things are going well…nothing hugely significant

You are demonstrating a lack of understanding of masking and the coke bottle effect. If everything was ‘fine’ at school and everything was going well with nothing hugely significant, the child wouldn’t be experiencing the coke bottle effect/after school restraint collapse.

So the fridge example. If you've got a child that needs medication, which must be kept refrigerated, and your fridge breaks down, are you saying it's wrong to use DLA for that?

What if the family doesn't put their dla in a specific pot, and all household expenditure (including a new fridge), and therapies and things like directly relating to disability, all come out of that pot? Is that wrong? Because they might not be able to afford a fridge without the DLA?

Where did I say that she had the coke bottle effect?

I know quoite a range with physical and nd conditions where ammounts used are quite small say £14 of taxis a week for a blind person who works and chooses not to do any social activities and has a verry traditional rellationship where wife cooks and shops

another case used for piano lessons horse riding and expensive clothes for nt kid whereas nd only has things second hand because they are messie and yes i have reported to ss.

were there to be a possibility to reccord disability costs would hopefully stop abuse of these disabled people and improve their livezs. How does a blind autistic wheelchair user with arfid recieve the same as lots of these imparements on their own.

Well my lifesaving meds need to be kept in the fridge and I don’t get benefits for it 🤷‍♀️ I would pay myself if I needed a new one. The entitlement is unreal.

only really apparent at home when she can unmask and the wheels come off

prone to withdrawing after a tough day at school.

You said these^. The coke bottle effect and after school restraint collapse. Typically it is used to describe meltdowns, but it can also be used to describe shutdown (i.e. withdrawing).

And the pot question?

The blind person is highly unlikely to just have costs of taxis. They may use tech to help them. That tech isn't cheap.

I'm visually impaired. I've had to replace my mobility cane this year. I can't use a standard size laptop. The one I use 17" instead of 15") is a good £200 more expensive. Then there's the extra washing because I have a habit of dropping food down myself

Your perspective of what would contribute to 'survival' is probably quite different though. A parent with a disabled child has a much smaller chance of being able to earn a decent wage. They are often physically and mentally exhausted in a way that the parents of none disabled children can't compare. Their entire life is lived in 'survival mode.' They have battled to get their children support and know its a lifelong battle that won't end when the child reaches adulthood. They often do struggle financially too (despite what mumsnet 'high earners' like to portray) So should we tell these parents, these mothers who are living this life of constant stress, that they can't use that money for a fridge to benefit the whole family? Or a day out? We don't want a nation of broken, down trodden mothers who aren't even able to buy a fridge with the money they have, because 'that's not what it's for' What it's for is to make the life of disabled people a bit easier. And that includes not taking their parents beyond breaking point.