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 didn’t read the thread so I’m assuming there is more to the story but everybody needs a fridge? What does it matter where the money was pooled from? So somebody who doesn’t work and hasn’t got disposable income but is awarded DLA can’t own a fridge? Very intrigued in fridge gate thread now - if you could link I would appreciate

It goes off need not diagnosis....

I spent it for my child on petrol to and from appointments, and childcare for siblings so I can attend these appointments, as well as expert assessments, and a solicitor and advocate, which have been required in order to get my child the specialist support they require.

It’s not awarded because of a diagnosis though, it’s awarded because a child needs substantially more personal care and/or supervision than would be average for that age.

Type 1 diabetes rarely results in obesity, type 1 diabetes if poorly managed usually results in weight LOSS as lack of insulin means sugar isn't converted to far. Instead what happens is the child's blood vessels leak due to high blood sugar. Those leaky vessels tend to effect retinal vessels causing vision loss and blindness. The kidney blood vessels leak and the end up on dialysis and ineligible for transplant due to other deteriorating health issues. OR alternatively they take too much insulin, suffer hypoglycaemia, drop into a coma and die in their sleep. Or have a seizure on a night on in their teens from not heeding advice not to drink.

Anything that helps the disabled DC in some way. It might be a Motability car to take them to endless appointments or a school further away that can accommodate their needs, tutoring to try to keep them up with peers educationally, thinning of glass for strong prescription glasses, whatever they need.

DD's goes in the household pot, I don't split it out.

If I had to account fot it, it probably gets spent on petrol because she can't walk herself to and from school because she has zero sense of direction. I've tried. Walking with her, google maps, everything. Because of this I work a job that facilitates school runs. Of course it's in the opposite direction to school.

It also goes on a new pair of school tights every day. She sits in class and picks and picks. Comes out looking like Courtney Love at 3pm. But it's better than picking her skin or losing it and lashing out.

Same with school jumpers. I'm pretty good with sewing, but the cuffs don't last longer than a term. Shoes don't last long either. They get a good picking too. If it peels or unravels, she finds it. But, it's how she gets through the day.

I could go on, there's a hundred things that I do or buy that other parents don't have to.

I'm so grateful for the help though. I cried so hard when I got it that my (then) husband thought someone had died.

Yet hardly anybody gets PIP for it. And that’s not taking into account money spent on hypo remedies, which for some people is probably an extra £100 a month - you can’t just use anything, it has to be a high glucose option. My friend had this and got through 1L of Lucozade a day.

It’s a joke that people get it for ADHD but not conditions like this frankly.

I feel like the advent of anxiety related conditions has opened Pandora’s box on this one tbh

How is having riding lessons giving them a better standard of life that most people? Most kids do some kind of hobby, RDA just happens to be one of the best ones for disabled kids because accessing other sports is impossible. Allowing disabled kids to have a hobby is allowing them to have the same chances are other people.

It goes off need not diagnosis
People don't just get disability benefits because they have a diagnosed disability, it's how that disability impacts them.

I know several people who get dla and child disability payment for type 1 diabetes in Scotland so my experience is not the same as yours.

Yes I'm aware of that but I've seen several examples of it being applied unevenly. An autistic child who spent 90% of his waking time on an iPad and lining up rocks in his room getting HRC which his Mum spent on going on holiday, but didn't take him because he didn't like going on holiday, whilst my friend who was wheelchair bound most of the time was told she was only eligible for mid-rate care and no mobility allowance because she could walk a short distamce- no matter that it took her 3 times as long as an able bodied person, caused her a lot of pain, and that money paid for physio, having a carer to help her bathe and cook, her wheelchair and special shoes, all of which she needed to live a vaguely normal life.

You're equating special educational needs with disability but they are not the same. You'd have to work very hard to get DLA or PiP for dyslexia, even in its severest form. University students can get Disabled Students Allowance not DLA. Disabled Students Allowance is a grant that may enable them to get the technology they require to give them a level playing field with those who don't have a condition. For students with significant needs it may pay for a PA while they are at university.

Its all very well suggesting that DLA is only given to those children who cannot function within mainstream schools but there is a big push towards keeping children in mainstream schools, regardless of whether they are managing or not. There is a huge shortfall of school places and many local authorities are failing to provide the specialist education that the children needs. Furthermore, educational need doesn't necessarily translate to care needs.

Didn’t state what type diabetes they had (it was 2)… and it’s irrelevant. I was pointing out that some people are disabled by their diagnosed conditions whilst others are not. It’s not the diagnosis that is important - it’s the impact of the diagnosed condition that is assessed hence one diabetic sister receiving PIP and not the other; and one of my children being eligible and the other not.

Easy to get for DLA, much harder for PIP

Perhaps disabled people who use the benefit for disability needs are concerned it will. Be erroded by too many people using for luxeries. I do think there should be a component justifying extra costs complex to do as how much extra heating laundry electrical charges for equippment but it does not make sense some people spend on incontinence supplies and cleaning products whereas others spend on treats.

The texture change in Birdseye Potato Waffles has hit this house hard. Another safe food gone.

It’s not about being worse off, or more deserving. There are various safety nets for people who are down on their luck, people can gain education, work towards employment/better employment - in most cases there is something able bodied people can do to improve their lot
I disagree with this. A person who has grown up in a very poor environment, witnessing abuse, with a lower IQ, but not disable is likely to struggle much more than someone with a high IQ, a great family, a very supportive network despite their disability in some cases.

Currently I feel the exact opposite. Disability alone opens up safety nets that other people with very difficult circumstances, but no disability can access. Education is a perfect example.

The DWP dont care how you spend the money. It is not awarded based on costs. That would cost far too much in admin to do.
Instead of treating disabled people like idiots who cant be trusted with their own money, how about letting them spend it how they see fit?
What you might see as a luxury could be essential to a disabled person.

Gosh, with all the rage over PIP I dread to think what some people’s responses here would be to the amount of money disabled students can get towards university. It’s much more than the annual PIP. And both my children are eligible for that.

Why?
My son is an insulin dependent diabetic ,he had acute necrotising pancreatitus when he was 16 and it totally destroyed his pancreas so he has type 3c but treated as type 1 ,but he manages it himself and can care for himself and travel independently, which is what PIP is based on.

It’s not other people’s tax money any more than it’s my own tax money, 🤷🏼‍♀️

Yeah most kids get DLA for it but adults are unlikely to qualify for it.

I actually agree the safety net for those on a low income and without capacity to usefully be employed due to lack of education and childhood neglect etc is not strong. Instead those people are ridiculed.

Mind you those with disabilities like ADHD and autism before they were diagnosed but who struggled to access education because of them now probably make up a lot of the above group.

So the sen accomodations currently in place really should help allow the people suffering undiagnosed learning difficulties and childhood trauma from the 'traditional' parenting methods used to keep those kids seen and not heard and quash their undesirable behaviours which will potentially be useful.

Strangely those who want to cut dla see to also want to reduce safety nets.

I dunno regardless of the rest of it disabled people would have access to levelling benefits and children should receive help to access the full educational curriculum.