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.

The thing is so many expenses both can be and may not be disability related. A skip fior someone who has got too overwhelmed either rdue to their own or child’s needs disability expenditure.
frridge due to needing extra space to store medication child dammaged it needing aditional space to give disabled person independence to cook disability. An extra wine fridge provably not. How do we support all people to access a fridge fridge surelty more important for a family then anothers social access egmerlin passes or

The requirement for a successful DLA claim is that the child needs "substantially more care, attention, or supervision than a child of the same age without a disability or health condition"

You've said this child has sensory issues, needs for routine, doesn't like surprises, reluctance to go to bed, reluctant to get up...that will amount to more care, attention and supervision than a child of the same age without disability.

Often parents don't realise that they are providing more than others. I was lucky enough to be on an ongoing thread in the SN board that I'd been part of since DD1 was small. It was the posters on that thread that said to me effectively (repeatedly, I wasn't a good listener) 'you do know that what you're describing about DD3 isn't 'normal'. I had got so used to doing the 'sausage factory' with her socks, taking them on and off until they felt right. I had got so used to her spending over an hour in front of the mirror trying to get her parting exactly right and brushing her eyebrows. I could go on. Everyone else saw a well presented child who bounced into school.

I didn't apply for DLA until DD3 was almost 15. She probably would have qualified much sooner.

@Homephonea
The state is obliged to offer your child a suitable education. If they aren’t doing so, complain to your MP

You seem to think that if you complain to your MP Monday, the kid’ll be in a suitable school by Wednesday lunchtime - as if there were loads of places available, and they’d be provided if only the local MP would wag the admonitory finger.

Not so. Not immediately. Possibly not ever. The MP will sympathise (by post) and cite the party’s long term commitment to something or other, but eight months later the kid will still be at home, and the parents will be hoping to God that something comes up next September.

What if it was an absolute necessity to have the fridge, due to needing to store life saving insulin. Not so ridiculous now, is it!

I don't agree that this girl's quirks add up to over an hour difference between my children and her.

One of my children doesn't sleep well and needs an adult with her in her room before she will sleep which can go on for at least half an hour. She also will get up in the night often looking for reassurance. She is a very picky eater so won't eat the family meal and needs packed lunches at school or even when we are going out anywhere. She is not disabled and obviously shouldn't be entitled to DLA.

My son has a lot of energy to burn after school so we either have to take him to the park or to an organised activity otherwise he will quite literally be bouncing off the wall. He is a soap and sleep dodger and it is often a battle to get him to bathe or go to bed. This can take a while but is pretty normal in his peer group where bedtime is often a battleground. He isn't disabled and obviously shouldn't be entitled to DLA.

My point is that these kids are all the same age and they all have 'unusual' time consuming needs. My non disabled children would meet some of the criteria for DLA despite not being disabled so who are we comparing my daughter's friend to in terms of time spent on her additional disability related needs? A non existent average child or someone like my kids?

Your daughter's needs sound more extreme than my friend's daughter's needs so I don't think it's necessarily useful to compare them.

Not engaging with this any more, it’s pointless.

But would the family not have a fridge if it wasn't for the insulin? I don't mean to be facetious but almost every family has a fridge. It is a massive stretch to suggest that this particular family wouldn't incur this expense of a fridge if it wasn't for their child's disability.

Fine, I don't mind. I just won't allow you to misrepresent me. Absolutely disagree but please don't take what I've written out of context or make stuff up.

No my son doesn't get PIP for being diabetic. Either and has to keep his insulin in a fridge however he manages it himself and id capable of living independently, and travelling independently, and working so wouldn't be eligible
Most Diabetic, children are eligible for DLA ,but most Diabetic adults are not eligible for PIP ,as it's very different criteria that's just the way it is.

Some people need to pull their judgey pants out from their armpits:
1/ Nobody gets disability benefits without a diagnosis and supporting paperwork from medical professionals. Some conditions are variable or invisible to passers-by.
2/ What any money gets spent on is up to the claimant.
3/ ANYONE CAN BECOME DISABLED through bad luck, car accidents, genetics or a pandemic. This could easily be you or your family member - show some compassion.

I have no expectation as to what that particular pot of money that contributes to the household income is spent on.
I know that having a disability incurs more expenses than not having a disability, in a variety of ways from transport costs, to therapy, to reduced earning capacity, special diets, clothing etc. Basically everything is so much harder for people living with disability, and a little extra money helps to ease some burdens and make things slightly more 'even' for people who are disadvantaged.
I don't take it upon myself as a random member of the public to decide that the exact amount of benefit should go on certain specific things, when even the DWP don't go that far.

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.

So three of my kids have lifesaving medication that needs kept in the fridge.

DS1 and DD1 keep their insulin in their fridges. Said insulin keeps them well and they go out to work and can afford to buy fridges.

DD4's needs kept in the fridge. She needs 24/7 care. She's non verbal, cannot walk, is on oxygen, and requires a huge level of care. She'll never be able to afford her own fridge other than through benefits.

Like many parents with a disabled child we've lost one income to the house, £70 a week in carers in no way makes up for it. Some people have to use benefits to go towards basic essentials like fridges.

Do have any experience of disabilty - personal or professional - that qualifies you to make those statements ? Because if you have no understanding of the cost barriers disabled people face every single day you’re not really qualified to comment are you ?It’s not about compensating disability, it’s about making a contribution to the very real extra disability related costs people have, to allow them to take part in, and contribute to society. Disability benefits are not income top ups and the that you would allow disabled people to exist at a ‘basic needs related to survival’ level says it all really.

And by the way, the tax payer doesn’t fund theme park passes. They are supplied by charities and in certain cases registered carers get in free. Nothing to do with the tax payer so why are you frothing ? Your whole post reeks of envy. Do you envy the disability that qualifies these people for benefit ? Because I can assure you that during my career I’ve come across levels of disability that would floor most people here, and they would be begging to hand the benefits back if it meant they didn’t have the condition. There really are some vile posts here.

I haven’t made anything up, it’s all there in your posts.

It absolutely isn't.

You accused me of two specific things:

1. Writing that people needed a diagnosis to be awarded DLA
2. Writing that my friend's DLA claim was fraudulent

I obviously refuted this and asked you to direct quote the evidence for this. You were completely unable to do this. You quoted part of a post completely out of context about there being hidden additional needs and another post where I say that a diagnosis and GP notes is sufficient for an award of DLA. No mention of fraud and no mention that a diagnosis is always necessary because I never wrote those things.

Please do stop engaging with me because it is completely pointless but I won't stand to be misrepresented.

No stretching needed. The point being made is that it is a perfectly valid use of DLA/PIP.

There is no such thing as an objectively valid use of PIP or DLA. At the moment there are no constraints on how this money is spent so you can literally spend it however you like.

Do you expect people to believe that a new fridge is a disability related cost because a child stores medicine in there? Are we meant to believe the family have incurred the additional expense of a fridge because of the disability and they would otherwise be happily living with no fridge? Personally I think that is a massive stretch and the family is clearly using DLA to fund household costs that all family's incur.

Describing a child’s disability as her ‘quirks’ is utterly dismissive. As is comparing caring for a disabled child to caring for non-disabled DC. Normal bedtime difficulties and normal fussiness some typical DC experience are not the same. It is why DLA is based on care and supervision in excess of what is typically expected for peers the same age.

Ok, have a good day.

I wish this was true. It's not, sadly - My son has been out of full-time education for over 3 years. We have applied for countless special schools, all of which claim they "can't meet need".

All they need to do is provide "full-time or equivalent," which in our case is done by 6 hours a week tutoring (where I need to be present) and 8 hours a week (two 4-hour sessions) in an alternative provision.

Apologies, just realised that I did use the word 'quirks'. Was speed typing and was meant to use only in the context of my own children. Her disability absolutely cannot be dismissed as quirks.

Yes you did. “Girl’s quirks” is exactly what you said.

Were we not talking about the replacement of a broken fridge originally ? If it’s needed to store medications then it would be an acceptable use of DLA. Again this brings up the question as to whether DLA should be kept aside for ‘disability things’ or put into household expenses. IME the household expenses are where a lot of the disability related expenses lie.

I see a fridge as a basic need. I don't think I'd begrudge anyone a fridge.

People are weird OP, they begrudge anyone getting anything they aren't also getting. They were the kids who wanted whatever you the nearest kid to them was playing with, and they've never grown out of it.

In the terms of high rate mobility - it’s so hard to actually get for physical disabilities. I have had a much harder time of trying to get it for DD than my friend for her son on the basis of nuerodivergent due to the way they can apply under “ SMI “

my DC for example - has organ failure - 2 failed organs - attached to machinery up to 14 hours a day. Feeding tubes / IV lines - can physically walk as in she can stand and walk for short bursts otherwise in a wheelchair the rest of the time. She can not be out the wheelchair when attached to the machines. She has a great deal of equipment to take out anytime we leave the house. We can’t run a car at the minute financially - it would be life changing for us in terms of being able to get her out the house, her energy levels etc we just don’t qualify - I have accepted that. I don’t begrudge the others their car even if deep down I don’t believe entirely they benefit from it as much- it’s not my place to say they should not have it.