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 bet she actually knows it would cost more to administer vouchers but she just wants vouchers to be administered for the power and control buzz it would give to tax payers.

The posters who state that they are spending their DLA on obvious disability related expenses aren't being acknowledged because they are simply using a benefit in the way it is intended. Nobody is going to dispute spending DLA on a wheelchair etc. The theme park is an analogy for all the other expenses that aren't obviously disability related and are therefore controversial. Giving your DLA to the child as pocket money, saving the money, spending it on expensive games consoles etc. I don't know why you would find this so perplexing and it certainly isn't unique to disability benefits.

If I started a thread on the WFA and asked how people were spending it, nobody would take exception to the person using it to fund their utilities bills over winter. The person however using it to fund a winter break in the sun would get more push back and people would question what they were doing more. They can argue they need it to warm up their bones after a cold winter or for their mental health or whatever other reason but it would remain controversial because ultimately the taxpayer is funding a holiday that many people can't afford for themselves.

Honestly any judgy people are more than welcome to my dd and her DLA.

She is ASD and ADHD with severe anxiety. It means I can’t go for the jobs I want to as one of us needs to be home to ferry her around. We also pay for her meds as we had to go private as the NHS waits were insane. Ditto with getting her diagnosed.

I’ve exhausted myself trying to make you understand that there is no correlation between the assessment and how these benefits are spent. And you clearly haven’t listened to a word I’ve said. You keep banging on about how there should be an assessment of disability related costs, when that’s the bloody point of the whole assessment for child DLA and PIP. It DOES assess the likely extra cost of disability and it’s the fundamental basis for awards. Living as a disabled person costs money. And it’s been ‘current policy’ for decades.

With every post you’re exposing your inability to grasp this most basic concept. Once the award has been made it’s up to the disabled person or their parent/guardian to spend it in a way that best supports them. If this allows the child to visit a theme park when it would have been impossible without the benefit, then that’s fine. That’s why it’s paid. It’s to remove some of the cost barriers and allow the disabled person to take part in society to the same extent as someone without the disability. And if it allows even one severely disabled child to visit a theme park then I consider it an excellent use of my taxes.

Do you have any idea what life is like for disabled individuals?

I will tell you first hand - my son is completely aware of his condition and how it limits him. He is aware that others his age go out with friends , go out alone , go to the pub , go to work, have independence and he desperately wants it. To the point he is crying , hitting himself to “ get the autism out “ . Begging me to let him go out alone, googling “ how to make friends “ and then telling him it’s fine he can go and make a group of friends and go to a mainstream college because he can “ talk to them about shared interests , support them when they are down” ( as that’s what Google says to do ) . He would happily approach a gang of teens and simply say “ hi can I be your friend “ and thinks this is how it works. He asks me why he doesn’t have friends , why can’t he go the pub because he will be able to make friends there. He cries and cries over feeling lonely , he watches his 14 year old brother go to the park with his friends - he is literally watching the world from the outside desperately wanting to be a part of it.

One thing that makes him happy is going to a theme park with a friends autistic son who is the same , they don’t talk to each other much they just happily go around together on the rides and this makes him so happy and turns him from an upset, lonely young man to a young man enjoying life. So , yes I will get in my mobility car that allows us to get to these places , almost every weekend and throughout the holidays and I will use his theme park pass to do that and feel not one ounce of guilt because it is allowing my son to live a life that has some resemblance to the fulfilment that NT individuals his age have . Without PIP I could not afford to do that because at the age of 40 I have only just managed to qualify in a role that gives me a tiny chance to work towards being able to put something in place for his future but as I have been unable to do that for years I am on a paltry new starter salary .

Equality is not giving everyone the same , it is providing each person with what they need to be able to reach the same goal .

DLA / PIP is to level the field for children/ adults who have any form of disability including ND. And it is based on the individual person not how rich or poor their family/ guardians are. It is not a " bail out" for families. "Bail out" is minimising the difficulties a child/ adult has. It takes an intense level of time, effort and input from parents / guardians to assist children to get to a sociable balanced level of partaking in their school/ groups/ college. Poorer working class families or lower middle class families would find it near impossible to put their child through any level of academic attainment or social participation without the payment. These children would slip through the achievement net. Then the parents/families get " blamed" for the child losing out in life.

Have you ever thought that as they can’t work and can’t do things that others do , this could be the only thing that allows them to feel some form of happiness ?

Maybe they pay into an ISA for their kid, because they know that, one day they will die, and want to make sure there is some money there to care for their child when they can’t any more, @Eatinghurts.

I don't understand why you don't comprehend that it's not that I don't understand the current system. I just don't agree with it. I don't agree that the assessment does properly take into account the cost of disability in the way you suggest. Before you start, yes I do know the assessment process and understand the criteria. I know how points are awarded and on what basis. The link between needs and costs is not as direct as you suggest.

I also understand for the millionth time that parents can spend the DLA how they want at the moment. That is why this thread exists and why there is such controversy. You think it's great use of your taxes, I disagree. Good job we all live in a democracy and can make our vote count.

I couldn’t agree more, @HalleLouja. If anyone is jealous of the DLA I get, they are welcome to come and live my life, unable to go out alone, unable to cook a meal, struggling to climb the stairs, constantly aching with an exhaustion I don’t have the words to describe.

Yes because creating layers of administration is always a massive cost saving….

Spending DLA and PIP on wheelchairs, Zimmer frames, crutches etc, and all the other stereotypical bollocks you clearly associate with disability, is not the point of the benefit. It’s intended to cover the extra cost of actually living with a disabilty. If you shit and piss yourself ten times a day because you have no bowel or bladder control, you’re going to need extra money for covering the cost of utility bills for extra bathing, extra laundry, padding, bed and furniture protection.

if you need specialised equipment you will incur extra on utility bills for keeping them on charge. If you have mobility problems it’s going to cost you more to get around. If you need someone to care for you 24/7 someone is going to have to give up work to look after you - so that income is gone, or at best reduced. If you can’t do housework or gardening you have to employ someone to do it for you -

I’ve come across disabled people who have to pay someone to do simple things the rest of us take for granted like changing lightbulbs or curtains. There are hundreds of extra hidden costs, which, unless you are disabled, you will never begin to understand, so why do you pretend you do ? It’s not about specialised disabilty related equipment, it’s about the extra cost of living disability brings.

Absolutely, so the point is not the cost saving it's resentment and that's vile when you think about it.

@whoknowshey DD1 is 19 and is a similarly tortured soul. I've always said she's just not quite disabled enough. If she was just that little bit more disabled, she would be blissfully unaware of where she should be. Instead, she desperately wants friends but can't cope when peers try to engage in friendship. She can't cope in group settings. She can't cope with more than 30 minutes of 1:1 mentoring (today she lasted 15 minutes before her face was ashen and her whole posture dropped). She can't make sensible decisions because she's so impulsive. She has a limited sense of danger and awareness (she still thinks you call 911 in an emergency despite us telling her repeatedly that it's 999). She watches nature programmes so that 'if she's a vet one day she'll know what to do to help them.' She can't be left at home alone and she can't go out without us. It's heartbreaking.

I have seen people with learning disabilities and autism in Wetherspoons. They have had carers or a PA with them. Are they not allowed go to pubs?

I get PIP and I use part of mine to get my nails done once a month.

it is a disability related expense as I have an itching disorder (due to the drugs I take) and acrylic nails don’t break the skin like natural nails, but it also makes me feel good and like a normal person.

It’s a monthly afternoon out for me.

Without pip I’d have to forgo food shopping to afford them as they are needed.

What a horrible person you are.

Clearly there are people who think we should go back to the Victorian era of shoving disabled children in the corner.

You won’t be better off under Reform, a lot of people will be worse off.

@Marshmallow4545
I am struggling to imagine a child so severely disabled with sensory issues or issues with cross that they can claim PIP for their autism or anxiety, but can manage to go to a theme park without melting down or having an anxiety attack, I suppose it depends on the individual but it feels like a contradiction right now as these places are full of triggers no matter how many accommodations can be made.
that said, I disagreed with horse lessons earlier and then changed my mind as there are so many things a disabled person can’t do and places they can’t go, or if they struggle to make friends and maybe preferring animals it actually being cheaper than physio.
there are some contradictions I feel as of disability money is spent how it is intended I’m struggling to see how the money can be spent on things like theme parks as it shouldn’t be left over? If it is all going on specialist clothing or food for example. Unless the family are well off. I suppose it is all variable, but even so there are things that don’t add up

I feel your pain. I also work with young adults with higher needs and sometimes i look at them happy in their bubble with no idea that their life is different and a small , secret part of me wishes my son was like that. It’s like you say - not quite disabled enough to be that unaware and I feel it’s like torture. Every single day is a battle with his feelings and I feel he’s sad more than he is happy 😢

Which they loudly proclaim, between sips of their favourite ale, I take it. Yes that's it!

So hiring a skip, would mean that they were doing a large clean up of their house/yard. Which in my eyes would definitely benefit the child as well as the rest of the family.

And there’s a lot of it on this thread. Every benefit thread I’ve ever taken part in has descended into a benefit/disabilty bashing fest. This one is no different, and is actually one of the vilest I’ve seen for a while.

Wheelchairs, hair shirts and gruel, by the sound of things 🙄

That’s because every individual is different. There is a stereotypical view out there - they are all highly intelligent , they all hate noise , they all spin around - and it’s not at all.

My son has no aversion to noise. Yet when he was younger his hands were permanently over his ears. We recently went on a day out to another city where it was hot , there was a street festival and it was busy and he was so overwhelmed and couldnt cope. But take him to a busy theme park , on a hot day , with music playing out of speakers - he’s fine.

I know of a young adult who is completely non verbal , very challenging behaviours , always wears ear defenders , cannot cope with change etc - but the place he is most happy ? On a huge , high , fast rollercoaster . He zones out and it’s just a face of pure happiness. My son is the same I watch him on some rides that I would be so scared to go on and his face is just … pure bliss.

It’s utter bollocks and they know it. It seems the gloves are off now and the ableism is there for all to see.