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 know of only one family that claim DLA for more than one child and I know a lot of families with disabled children.

The point is that I am more than happy for PIP and DLA to go to people who have to pay out in order to live a normal life with their disabilities.

My friend is one such example of someone whose life is extremely expensive and needs financial help to have parity with non-disabled people. She should be getting whatever she needs.

I'm not happy for tax payer money to pay for a disabled child's Mum to not work and go on two foreign holidays a year. Her argument was that she "needs a break" because he could be more difficult and demanding than the average child, but 90% of single parents (many who don't have 50/50 care with a co-parent, as she did!) need a break and if they want to spend that break in Crete they have to get a job.

Agree completely. I would lie down in the road to stop benefits being cut for people with Down’s Syndrome, or those in wheelchairs, or with learning difficulties.

But handing out benefits for ADHD when people coped just fine without 20 years ago is madness.

These measures are making a big difference to people with disabled children. I do not have direct experience myself, as I have not had to navigate the system, for a disabled child. I listen, and learn though, from the people who are directly affected.

I thought it was to make the person's life that bit easier, whether its for a happy family environment, trips, equipment or special foods.
As long as the appointee is not squandering it solely on themselves, do whatever creates the best world for claimant

They would make a big difference for everyone.

There are plenty of disabled people not entitled.

There are plenty of working people paying hideous amounts to commute to the only job that they could get.

We don’t exist to fund the lifestyles of people with autism and adhd.

I have been severely disabled since birth. My parents claimed DLA for me when I was a child and I have been on DLA then PIP, higher rates of both components, since I turned eighteen.
The costs incurred by my disability, in terms of care, equipment, adaptive technology and supplementary treatments, have far exceeded the amount I receive in DLA/PIP and this has been the case since childhood.
The equipment, care and adaptive technology on which I spend my PIP allows me to work. Without these things that would be impossible and I would be receiving considerably more in Universal Credit than I do in PIP, I would also be considerably less happy and fulfilled, though I know that's of less interest to the ableist posters on here whinging about us disabled scroungers bleeding hard-working tax-payers dry!
Also, I know this will come as a horrible shock to many MN posters, but I do also go on holidays, for days out, to restaurants and do other enjoyable but non-essential things with my family. Since my PIP is paid into the same bank account as my wages I am afraid I cannot guarantee that the specific pounds I use to pay for a meal out haven't come from my monthly PIP payment but, rest assured, even with my monthly PIP I am still worse off than a similarly earning non-disabled person would be due to having to spend some of my money on adaptations and care not covered by PIP, just to put some posters minds at rest if they were worried about this disabled person and their family having too good a time!

"Her argument was that she "needs a break" because he could be more difficult and demanding than the average child"

If he is getting HRC he will be far more demanding than the average child. To be getting HRC He would need supervision for large parts of the night for a start.

I feel very torn over disability benefits. Of course disabled people should be very well cared for, society should be judged on how it cares for it's most vulnerable, but how can 8% of 15yos (and 10% of working age people) be in need of disability support payments? And if they are, how on earth is that sustainable?

If the coffers were overflowing, I'd say absolutely, give every person with ADHD a bit of extra money to cover the "ADHD tax". That's not the situation we're in and every person claiming a benefit they don't really need is a further stress on public services.

I don't think I know anyone who goes on four holidays a year! I assume that includes weekends away?

This sounds like my daughter 10 years ago, she is now in education again and doing better, PIP was a lifeline for her when she couldn't work, even though I know it isn't strictly just for people out of work.
I'm amazed people don't know how disabling ASD is, but I suppose it's different if you haven't seen it with your own eyes.

Again I goes on need not diagnosis, so having ADHD doesn't automatically entitle anyone to DLA/PIP it's how it impacts them.

when you have a child/children who will
never live independently, if you can save for their future care then what’s wrong with that?

I do try and save a small amount of my PIP becuase st some point I will need to either get my own WAV which costs around £8.5k second hand or pay a deposit to
motability for one from them which is around £10k. The idea that motability vehicles are free is hilarious.

I get ADP (Scottish adult disability payment, equivalent to pip). I get standard rate daily living and higher rate mobility (I’m reliant on a wheelchair most of the time when I’m out of the house).

It goes into the joint account but if I was accounting for it I’d say it is spent on my cleaner/housekeeer as I’m unable to do much in the way of housework and my dh works long hours. The rest goes on taxis (medically unfit to drive) or car upkeep/fuel for my ds (23) who does most of my driving about for me.

it’s supposed to be for the extra costs bourne by disabled people just to live an ordinary life. So I suppose it also goes on things like electricity/gas as I’m at home much more than when I was teaching.

Sometimes it’s on a bottle of wine on a Friday night 🤣

Not every person with adhd will qualify for PIP.

A couple of possible explanations off the top of my head...

Better medical treatments meaning more people survive various things, but may have long term consequences.

Older parents - age increases the risk of various conditions.

ND is partly genetic, so if more ND people are having children there will be more ND children. Better diagnosis and changes in society/education will also lead to higher numbers.

Long waiting lists/fights to get a referral in the first place - leads to further decline in health/risk of complications.

More recently, the long term effects of COVID.

I just told you I have a hearing impairment... so pretty direct experience. Where's your sympathy please?

I have no idea what she wrote on the forms, but he didn't need supervision often at all. He didn't sleep a lot but he sat in his room watching YouTube for most of the night. She was in bed for 9pm and rarely up when the taxi came to take him to school.

She said his food was expensive as he had ARFID, but he only ate plain pasta, microwaved Yorkshire puddings, and chocolate mousse. Food is expensive but his limited diet was way cheaper than a typical child's diet of meat, vegetables, endless berries, etc.

She also said he needs to take multivitamin gummies which are expensive but don't most children? Both mine have always had a daily kids multivitamin.

Why is neurodivergent misleading? Genuine question. It means a person whose brain doesn’t work the same way a NT one does.

edit to add: people rarely mean autism isn’t disabling, what they are arguing is whether it a disease that is curable, or just a difference in the brain chemistry. You can’t cure it because it’s just how a person is.

I don't dispute all claimants have "something", but we're going to have to look at the degree to which support is needed. How can paying these benefits to 10% of working age people and similar number of children be sustainable?

It's exactly this. No one needs tax payer funded horse riding lessons, that's purely a grift. No one has an issue with funding wheelchairs and glasses

Those stats are irrelevant though - we cannot afford it.

If the entire country developed a condition meaning they were wheelchair bound tomorrow there would be no doubt we would all deserve benefits, but it’s not about the need it’s about the affordability.

This is a financial issue, not a moral one.

Agree completely, taking the mickey out of low earning non-claiming families (whose kids would probably love horsing riding lessons). DD loves horses and we let her have a ride at Christmas and on her birthday but can’t afford in between. Why is she less worthy than a child with ADHD?

Why do you want sympathy? If you have a hearing impairment that significantly affects your mobility or your ability to carry out daily living tasks, then you should claim PIP. If you don’t then that’s very much a you problem, and I fail to see why other disabled should suffer because you don’t want to help yourself.