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.

The way this thread has turned into a benefits-bashing free-for-all is just depressing. The eagerness to demonise people who already have enough to deal with never seems to get old.

So would mum getting nails done as ‘happy mum happy child’

Where do we draw the line

I thought it was for extra costs incurred due to disability eg a person who cannot drive would use it for taxis, a person who needs supplements or treatments not covered by the NHS would use it for that, a person who needs to be warmer would use it for heating bills. I don't think its meant to be for the latest tech or new furniture (unless the old furniture was made unusable by the person's disability).

It's possible to be both sensory avoidant and a sensory seeker.

My daughter is.

When she was younger she used to throw her body around and deliberately crash into things in order to seek the sensation of it. It gives her awareness that she doesn't ordinarily have of her body in space and time. At the same time she can't bear other people touching her.

She loves rollercoasters & theme parks but can't abide the noise and sensory environment of a supermarket for example because it's not providing the sensory input that she needs.

It is fascinating but the stereotypical view of is that theme parks must be awful for autistic people is wrong. The access arrangements around queuing negated many of the negative environmental experiences.

But people saw that as queue jumping and these arrangements are being removed in favour of making access harder for these needs.

Yeah course there is 🙄🙄

sigh, are some blind, or visually impaired people, or some people unable to use their arms, not allowed to update any tech, that enables them to communicate with other people?

When you work within the system for as long as I have, you understand why these benefits are assessed and paid as they are. If you have no experience of disability and the extra cost involved you really have no business criticising or telling those of us with vast experience of disability - both personally and professionally - how best to spend that money. I’ve seen disabled children whose lives are verging on intolerable, and the lives of their families and carers similarly so. The fact that you see giving them the opportunity for some respite and entertainment in an otherwise very difficult life, as a misuse of DLA says far more about you than it ever does about them.

It's ableist to focus that argument solely on DLA. Dare say remove the triple lock on pensions, or remove winter fuel payments for the wealthiest, and there's an outcry. But disabled people are clearly fair game.

Im not wedded to theme parks as I think its a distraction..

But in answer to your question about how could a child with autism enjoy a theme park, some children with sensory issues are sensory seeking not sensory avoiding. There are also two senses, introception and proprioception that people havent heard of. They often need very strong vestibular input if out of balance and children actively seek out spinning, swinging and jumping to feek calm. Its why a lot of families have swings, trampolines and they actually help a child a lot.

My son basically feels like he is falling all the time. His body doesnt know where it is in space. Its distressing for him. To counter that feeling he would repeatedly throw himself at the floor or bang his head. He's never been to a theme park as we give that input in other ways but I can totally see being in a swing boat soothing him.

But I do. I really do. My disability rarely qualifies because if you do all the (very expensive daily purchase) type things involved, you can do most things for yourself and live a mostly normal life.

I’m not bitter, I can afford the kit - and I’m happy to pay. But I’m the only person who seems to understand not everything can be free and that just handing out money to people ‘for being disabled’ unless they actually mean it is one of the big reasons our economy is up the shitter.

That poster wasnt talking about DLA, she was talking about PIP - paid to herself as the disabled person. Nothing to do with children.

A little known fact about autism

Clinicians have long observed that children with autism spectrum disorder (ASD) are impaired in their ability to generalize – that is, to relate new stimuli to past experiences (Rimland, 1964). For example, imagine a child who learns a social script to respond to “hi,” but then fails to apply this script when someone says, “hey.” Generalizing a skill learned in treatment to everyday use is one of the most significant barriers to treatment success (for reviews, see Karkhaneh et al., 2010; Vismara & Rogers, 2010; Wass & Porayska-Pomsta, 2013). In an early study of this phenomenon, nearly half of children with ASD who learned new behaviors in a treatment room failed to transfer these skills to a new setting (Rincover & Koegel, 1975). Many current treatment studies make generalization to everyday settings an explicit treatment goal (e.g., Ingersoll, Lewis, & Kroman, 2007; Koegel, Kuriakose, Singh, & Koegel, 2012; Laski, Charlop, & Schreibman, 1988; Pierce & Schreibman, 1997; Taylor & Harris, 1995), emphasizing the critical role that generalization is thought to have in child outcomes.
Despite the critical importance of generalization impairments to intervention in ASD, experimental work on generalization in ASD has been strikingly limited

It's DLA for a child, not PIP.

It can vary. We took DS to a retro video game convention because it's one of his special interest. He coped really well, but we watched him closely in case it got too much. We've also taken him to Belton house where, despite it being quiet, he completely shut down because we had a picnic lunch before going to the adventure playground. Other times we've had to cut things short and get him home - or get to the nearest Costa as that's a safe place for him.

If you met him on a good day when he was coping well and not too anxious or masking well, you'd wonder what on earth we got the DLA for. But we see the meltdowns, the shutdowns, the anxiety, the clothing and food issues, the sleeping problems... he's not attending school right now because he can't cope with another child having an interest he disapproves of, the fallout from this has lead to thoughts of suicide and him harming himself.

We get so little help with any of this, the DLA is basically it. Every little thing is so difficult - just needing new socks and we can't get the ones he liked and having to find new ones he can tolerate is a huge thing and everything is like that. We've spent months looking for shoes that don't hurt his feet, we can barely get him to leave the house because of this. I'm regularly in with him until 1 or 2am because of the sleeping issues. He's 12, he should be spending time with friends and developing socially, he's so bright but he's missing out on his education, it's heartbreaking.

Important points raised here. There is no reasonable justification for the state to be funding theme park passes or similar, for any child. Any system that winds up being used in this way will wind down eventually, because it's not a good or fair use of people's tax contributions. As this poster says, asking ourselves what the opportunity cost of this ludicrous system is a good start. There are much better ways of supporting disabled children in society. For instance, building fully accessible public spaces

Yep, me too 🥺

But they’re not paid out just for being disabled. The whole assessment is to estimate the likely costs involved. If you’re assessed as having no extra disability related costs then you don’t get an award. And if you think disability benefits are the biggest reason for the economy being up the shitter then you’re gullible. Sorry.

My child’s PIP was spent on private speech and language support, private OT to go into school to help with hand writing, a counsellor to help deal with school. Catch up English and Maths sessions at one of those computer group learning places (my child actually understood primary school English and maths after these sessions), as a teenager back therapy, dyslexia lessons and endless private reports to support the EHCP and assistive tech to help with reading and writing. As parents we still spent loads of our own money above any other child just to get them to the same place.

At then end of this, they achieved A levels and now work full time.

I never want to go through that experience again.

People can spend their pip/dla benefit on what the hell they like, l bet they e
they would give it back in a heartbeat , if their disability was taken away from them....People can be very judgemental...

Most people don’t ring fence DLA - it goes into the family pot because that’s where the extra expenses lie. So it’s a mealy mouthed myth that DLA is directly funding this. And most families claiming DLA for their children work. Are you really telling working people who pay their taxes how to spend their money ? If it takes DLA for a disabled child to be able to participate and spend some time in theme parks, or otherwise entertained why is this so bad ? Severely disabled children lead difficult lives. Why on earth would be begrudge them something that brings respite to that ?

Thats not how it works at all! Have you even seen the assessment? It just asks you about things you can do, you self report and they grant based on that. No expenses are evidenced.

I think you are saying that some days your son copes better than other days, and are triggered a lot of the time but sometimes is ok. I can accept that and understand now 🙂

No. I'm critiquing a system that enables people to spend money that was intended to make life with a disability easier on getting manicures, filling a cash ISA and theme park passes, the most egregious examples on here. On average, people will always do what they are incentivised to do. Anyone who pays tax (and I paid over 70k of it last year) are quite entitled to say how ludicrous this is, and vote accordingly

If we paid for a skip using the DLA, or partially the DLA (we do actually keep the DLA in a separate pot currently), it would be because a lot of what we need to get rid of is stuff that DS wouldn't let us throw away. He's just started to let us get rid of 8 year old toys etc., a lot we're selling or giving to charity shops, but there's a lot of rubbish.

Personally if only pay for something like my nails if DS had caused damage to them. This was before we got the DLA, but he broke my glasses during a meltdown, that cost me about £300, if that happened now I'd take a proportion from the DLA.

Sigh, I am not sure how else I can write this, but just in case it wasn't clear, if a person needs something due to a disability then yes I would say its covered. And just in case I am really not clear and you need me to spell out the specific example you gave; being blind, visually impaired or unable to use your arms is a disability, and if you need certain tech to help you live your life, then yes I'd say its covered.

I was a disabilty outreach worker for over twenty years. I was on the editorial committee on the design for PIP and the reworking of DLA for children when PIP was introduced as the working age benefit to replace it. So yes, I’ve seen the assessment. I’ve assisted with probably hundreds of applications since it was introduced in 2013 and I’ve also been present at numerous assessments and unfortunately, a number of appeals which were necessary for the claimants to obtain the award to which they were entitled.

And the awards are not self reported or based on actual expenses. The level of disability across a range of everyday living and mobility activities is assessed. The level of need is then translated into the likely cost involved and an appropriate award to address some of that cost is made. To be successful you don’t just self report, you have to provide medical and other evidence of disability and be prepared to support everything you say with factual evidence.

So yes, that’s exactly how it works.