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.

I’ve detailed above how those other activities simply aren’t available to my child, and many others with complex needs. Levelling the playing will look different because in many cases there is no levelling.

If we want to talk morals, how moral is it for kids to be left with neglectful parents to the point where their development is severely impacted, to place them in foster care that was equally neglectful and abusive, to deny them medical assessment and treatment at a crucial point in their development, to provide minimal support post adoption, to deny essential therapeutic support that would have mitigated the impact of their early trauma.

Theres certainly a moral argument to be had, spending paltry disability benefits on the one hobby a child can access isn’t it.

Just spat my dinner out. One of the most hilariously naive comments I've ever read on here.

Yes, because clearly the highlight of every parent’s week is pretending their child is disabled just to afford horse riding therapy. The imagination really does gallop, doesn’t it?

Where are you going to draw the threshold ? How are you going to explain to someone who has a disability that because he is an few pounds over that threshold he has to drain his bank account before he will get help, while someone else is fully funded ? The reason disability benefits are universal is because disability is universal. When I worked as an outreach worker I regularly came across parents who were claiming up to £1700 a month on child care fees. Would someone care to explain to me how this is acceptable but £700 a month to support a disabled child isn’t ?

I posted my last comment before seeing the replies to my last one. I think I agree about horse lessons now and have changed my mind!

I absolutely agree with you and have changed my original opinion now

I know of a NT individual who wears the same outfit every single day , but also pulls and rips their clothes . Parents have to buy countless articles of these exact clothes . This individual must have so many of these outfits . Clothes can be bought cheaper than this but this is her preference.

Im sure some here would see it a luxury , why should she have all these clothes. She bites herself to the point of bleeding and injures herself badly if she does not have this exact outfit.

this is the reality for some.

no physical disabilities . Should she not get PIP ?

Fortunately, as you earn enough to pay £60k income tax, you were able to find the thousands that your ND child needs spending on him.

Lesser beings who are on low wages or who simply can't work at all because of their child's disability, can't find those thousands. Hence DLA.

I have never really given it much thought beyond whatever the family needs to make the persons life / family life easier. Be it because one parent cannot work…

I do have ND children. But they are able to access mainstream activities so don’t need DLA. Both my kids go quiet when overwhelmed and my DD will completely shut down. I’d imagine if she went outwards and punched someone, wrecked a classroom
it would l look a little different!

Mild dyslexia diagnosed to get extra time in exams for a wealthy middle class family (I'm well off and middle class and I would not seek this for my child who does have extra time) should not require it, no.

Some people have more needs to tutoring because they struggle more with academics than another person - where do you draw the line?

It should be properly assessed and a wealthy family should not need it.

I don't think it's what it's spent on that's the issue, it's what people need for their disabilities that they aren't provided with. Some people spend a lot on healthcare/going to appointments, especially if what helps them isn't on the NHS. Some families scrape by to afford to pay for haring aids etc, because the only kind that can be worn all night aren't available on the NHS, but their child suffers badly from tinnitus, and the only thing that relieves the pain and suffering of that is the Lyric aids which can stay in overnight,
Even if it means going without any holidays/nights out/luxuries, most parents in this situation would pay to avoid their child suffering. If they're refused DLA, despite their child having a proven disability, they can sometimes feel upset that others get money and they don't, and feel that DLA is too arbitrary. Like the girl who got PIP and said she doesn't really need it, but "why wouldn't I take it"-some might say they should mind their own business, but I think the problem is less about what it's spent on, but more that it's not always given to the people who need it.
I find it really hard to hear genuinely sick people crying and feeling humiliated, and not getting what they need. I'm happy for my taxes to help people, and think it's up to the medical teams etc to work with families to get people what's needed, as it will vary.

Then the quick Google is wrong. It can tell you how to make the best PIP claim you can, but unless you have medical evidence to back up everything you’re saying and can convince a medical assessor who has probably seen it all, that you are genuine, you won’t get far. Google isn’t your friend here - AI is notoriously unreliable.

At least you have named the correct benefit this time, it is progress I suppose🙄. Try filling in the form, and 'hamming it up' without medical evidence to back up your claim. Let us know how it works out for you.

Exactly this. It's nobody's business how people spend their money.

We spent DD’s on her hobbies as she didn’t “do friends” so music lessons, orchestra subs, exam fees and petrol to ferry her about. In reality it goes into the pot - her lessons cost more

DLA is actually quite difficult to get. You need to outline in detail the additional care y child needs and this then needs supporting evidence. All children need some level of care, so evidencing additional care can be hard.

It’s also difficult because as a parent you adapt your care to the child you have. It wasn’t until I was on holiday with other family members I realised how much more support my kids need, how much I’ve adjusted family life to suit their particular needs. You become used to multiple night wakings, because you’ve always done it. You become used to a 2 hour morning routine, because that’s what they need. You become used to scaffolding your teenager through her personal hygiene because that’s what she needs. So it doesn’t feel like extra, but it is.

Completing the DLA paperwork is very hard because you realise all the challenges your child faces, that you are just used to dealing with. I wish all I had to deal with was dyslexia.

Not criticising, just interested. Why do autistic children need warmer homes? I would have thought physical handicaps and limited mobility would need warmer environments.

It is properly assessed and as explained upthread income is irrelevant. Disability benefit is universal because disability is universal. And that’s how it should be. Anything else is a race to the bottom - these benefits are already expensive to administer and adding in a layer of means testing will just make it worse. A better idea would be an overhaul of the assessment process to make it fairer and more transparent, then there would be no need for the astronomically expensive appeals process, which is the only way some claimants can get a fair decision. And why the assumption that something like mild dyslexia would qualify for disability benefits ? The level of disability has to be severe enough to have a significant effect on everyday life, and that effect has to be translatable into cost.

Which my parents were unaware of and did not claim. They did not consider me disabled (just that I had a condition that needed to be managed) so it wouldn’t have occurred to them to claim DLA. I’m also not sure what they would have spent it on.

I am certainly not sure why PIP is needed for a type 1 diabetic with a state funded closed loop system (the NHS even covers the cost of the batteries required).

This.

No Topiramate.

I actually do have diagnosed hearing loss and it does impact my life in some ways. It's just never occurred to me that I should receive any benefits for this. Apparently though I should be getting a few hundred a week to fund art classes though because I just need them

Most children don't notice a tiny change in taste or texture, or if they do, they can understand that they need to try this now because that's what was bought for this week. Some children with autism would literally starve before eating the cheaper brand of food that tastes different, and would have no clue that this was the only thing their parent could get because money, costs or affording things are concepts they don't even understand exist.

I did not say they needed warmer homes but others have said here that some people might put DLA to household which could go on heating bills and someone commented that poorer families struggle so why should someone with a disability get help.

Diabetes of both types would be assessed on the same basis as every other condition. If there are no significant effects on everyday life, then there is nothing to translate into cost, so benefit wouldn’t be awarded. I’m not understanding the assumption that every single condition would qualify for benefit because that’s absolutely not the case. There is a very high bar for provable cost.