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.

Well I agree and it's really unfair that people who CAN'T queue are being lumped in with people who don't want to queue.

My SD never queues when she's with her Mum. She uses her Nimbus card and says that queuing is boring for her because she has ADHD. Queuing is boring for everyone. Being bored is not dangerous to your health. When she's with us, she queues and she is fine- neither DH nor I think it's right to let her go to the front of the queue when she doesn't need to.

My child has horse riding lessons, heavily subsidised and we pay a small amount, which comes out of the pot (which the dla also goes into). So I guess she's having taxpayer-funded horse riding lessons.

Her physical disability affects her balance and core strength. Horse riding is the perfect therapy for this. It's not a nice to have, it's something that has a measurable effect on her life and physical wellbeing. It's her physio in effect and endorsed by her physio and doctors.

I can understand why you preferred that system with your daughter but realistically are people getting on 10 rides if they are a regular paying customer without DAS? Especially when people like the YouTube families were using the Disability Access strategically for ten of the best rides that would usually take between 45 and 90 minutes to queue for. It was giving preferential treatment and making some standard queues unfeasibly long.

Even with this new system, the family I watch on YouTube actually queue for the shorter queue rides whilst their queue time for the more popular rides is counting down. This way they ride two rides when everyone else is stuck queuing for one. They always complete a full day at the park so they still get a lot more out of their visit than other families.

Most children can't tolerate queuing ten times in super long queues in one day. I know my children will do a maximum of two or three of that length and then they just can't be bothered anymore. They aren't disabled but queuing is boring and children have short attention spans.

Ok but dla is less than you wage and doesn’t go by whether the parents work or not.

we are talking specifically about dla which has nothing to do with whether parents work or not !

I think you'll find it's a nice to have when the government go begging to the IMF and they impose harsh conditions on out-of-control government spending. Funded horse riding and days out to theme parks are short lived so enjoy it while it lasts. It's only a matter of time until it all crashes down. We can't afford these things

Plenty of ND adults do work?

I didn't say anything about whether parents work or not so have no idea what you're on about.

If a disabled child has parents who are less stressed about money then that’s benefit enough to them.

If it's a nice to have them I guess the NHS will be funding additional physio for my child.

Unless you think the NHS should be stopping all physio as well as a nice to have. Maybe no painkillers as you don't die of pain. No speech and language therapy. Just immediate lifesaving services only.

There are lots of things that would be endorsed by medical professionals that the state doesn't fund. Lots of people are funding things themselves that arguably aren't 'nice to haves' but fall outside the state's remit. Adults that need glasses, fillings, prescriptions, additional physiotherapy when NHS provision is exhausted, ... The list is endless.

There are also often many ways to skin a cat. Expensive horse riding will be the only viable option for very few children. It might be the preferential and optimal option, but very few people receive optimal provision when relying on the state.

My mum worked with disabled children in the 70s/80s it was still shit for lots of them. Many never went to school. There were more special schools but they didn’t accommodate everyone. Parents lived on the breadline and it was unrelenting. It ruined the health of the children and the parents.
DH had a disabled aunt, her whole life she was just at home doing nothing. It ruined his grandmothers health as she had little respite. Probably costing the NHS more. Ended up with another relative and ruined her health. Keeping people active and healthy has massive cost savings for the NHS also. Throwing families with disabled children on the bus will save nothing.

Also if you think you’ll be better off under Reform you are a mug. They want to dismantle the NHS and make it private, you’ll all be fucked then. They have zero interest in ordinary people, they want cash for themselves and their mates. You’ll provide that cash.
but at least a disabled child won’t get any joy in their life so it’ll be worth it.

Maybe it's time you stepped back and had a long hard think. Begrudging a child who is missing a chunk of her brain due to cancer, a £10 a week therapy to work on her strength and balance says more about you than me.

For the record this week she only lasted 15 minutes on the horse due to exhaustion. She's not doing competition level dressage here.

This is what people don’t understand

we parents who care for very complex sick children who have personal budgets for horse riding etc

giving the families money saved a huge amount overall but that doesn’t fit their narrative so they won’t admit to it.

Expensive horse riding ?

it costs us less to Send her horse riding than it does for the have weekly physio and does wonders !

So people should use their DLA/PIP to pay for bread and water for their child, @Gruffporcupine - they can’t use it to pay for a therapy to make their disabled child’s life just a little bit better?

It is not about them getting ‘extras’ for free, that other people can’t afford for their child - it is about them getting something that may help their child’s life just a bit.

Having a disability (in my case, long covid) has ruined my life. I can’t go out on my own, haven’t driven in a year or more, have been in a shop exactly 6 times since the beginning of covid, get breathless just walking back from the downstairs loo, and live with constant, all pervasive exhaustion. I have cleaners because my husband can’t cope with caring for me, doing all the cooking, shopping, household DIY and laundry on top of working and keeping the house clean. Having the cleaners isn’t a luxury, to us - it is something that is a necessity because it stops my dh (who also has MS) from cracking up.

Children’s healthcare is pretty much free, so physio, sensory integration therapy, CBT all should be available for free but it’s simply not available much of the time. One session of riding with RfD provides a number of different benefits which would each be the purview of an individual specialist. So four separate appointments each week with four separate therapy costs (say £140 per appointment), paid for by the tax payer. You really can’t see that it’s much cheaper and time efficient for parents to pay a contribution for riding sessions than look for NHS provision that doesn’t exist?

No assumptions here, I've got eyes, I can read

Maybe spend some time with real life parents with disabled kids, rather than watch them on SM. If it's colouring your attitude.

I think alternatives to physio for kids is often very positive. One of mine broke their ankle as a two year old and when the cast came off the doctor said it would be better for him to swim than to do physio. We went swimming twice a week and had great results but his ankle was still a bit weak. Our GP said take him ice-skating so I did for a year. Full recovery. I know it's not quite the same as nothing to do with DLA and it hopefully wouldn't have affected his life in the same way as it would fit a child who qualifies for DLA but it does tell me that a fun activity can be very positive.

I think this is really unfair.

I commented on horse riding because it is usually a lot more money than £10 a week. If it was this affordable then of course this would be a cost effective form of physio. Normally though there are more cost effective forms of physio that most people can engage with and reap benefits from. In a world where life saving treatment is being rationed on the basis of costs and people are dying on waiting lists, we can't always do the optimal thing for everyone. We just can't. It's easy to depict people like me as being unkind and begrudging your daughter but that's not my intention or motivation. More than ever we know there is only so much money to go round and an ever growing group of people in desperate need of support and treatment. We do have to be economical and realistic.

I haven’t read the full thread, but my youngest child has OCD and receives DLA. A few examples of where it goes …

He spends up to two hours in the shower. Gas is expensive. He uses half a bottle of shampoo, half a bottle of shower gel and a third of a bottle of face wash every time.
He changes his clothes several times a day because they are contaminated. He goes through about 10 pairs of socks a day because ‘something happened’ to them. Bed clothes that have only just been put on need to be changed. He can keep them for a week covered in food stains and I’m not allowed to wash them, but if, for example, I have a conversation with him and he thinks I breathed on them, he wants them changed. That’s a LOT of washing.
He discards clothes and refuses to ever wear them again (contaminated). I keep them for a while in the hope that he will forget whatever it is that happened to make him distressed. He NEVER forgets. They have to be replaced.
He only eats certain foods. Different from the rest of us. They have to be things I don’t have to touch in case I contaminate them. This is eye wateringly expensive.
He uses copious amounts of soap and hand sanitiser and wipes.
His phone has been lying face down on the carpet for a fortnight because ‘some germs got on it.’ I have no idea if he will use it again, but I need to be able to keep in touch with him when I go out and he struggles with being alone in the house - mostly because he can’t function without my help. So that may need to be replaced, albeit with something cheap again.

And loads and loads of other stuff. He’s 13 and not able to attend school. I’m his carer and at home with him. The only good thing, I suppose, is that this is unlikely to be permanent. I don’t want DLA. I want a healthy, fully functioning child. If he suddenly took a rush of blood to the head and wanted to go to an inflatapark or scuba diving or flipping unicorn hunting, bloody right I’d spend the DLA on it. It would be the best and happiest moment of my life if this happened. Because it would be his therapy. Because, believe me, CAMHS sucks at fixing OCD.

That's tricky, would you feel ok saying to a parent of a Downs Syndrome child ' it's a shame they can't cure it' seems very insensitive.
Regardless, ASD can still be severe enough that someone needs PIP

this thread is almost comical. What started as outrange over a fridge freezer purchased by a family of a disabled child (bonkers) turned now into a mass hysteria of posters of non disabled children about the alleged mass horse riding taken up by those with ADHD. I mean, seriously???

by the sound of it we need a mass culling of ponies and then the financial troubles of the UK will magically disappear.

I do spend time with families with disabled children and I have disabled relatives. My views are informed by my life experience as I'm sure yours are. I simply mention the Social Media families because so often if you bring up friends or family on MN you are accused of lying or told that you never see the full picture and more must be going on. These YouTube families document their entire day and clearly state what they're doing. I am not interpreting their experience through my own lens or misrepresenting anything.

We all know how real social media is too.... Jesus christ. Basing an opinion on youtube families now!

The stats are around 15 percent of Autistic people work full time. People with a whole range of disabilities work, and others can't.
So if as you say, a lot of ND people work, what's the problem then?
Those who can't work due to disability get benefits, just as those with other disabilities who can't work get them.
Also ND disabilities can come with a host of other things added to the mix, many people are not claiming for just one thing.