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 title Disability Living Allowance says it all really. It’s an allowance to help disabled people with their living expenses. It’s up to disabled people or their carers as to how it spent to improve their quality of life.

Chocolate and ice cream or anything really that makes life a little more manageable.

You're right, but we can't win. Everyone knows autism is disabling, but at the same time we can be shot down for implying that the condition is something to be cured. The term ND is misleading.

Something that really stands out on this thread is people not understanding DLA and PIP are different benefits and assessed differently.

People not understanding there isnt a perfect match between SEN and disability

And people thinking its the diagnosis not the impact that it the qualifying criteria.

It makes sensible conversation very hard.

When I last checked the country spends more on child benefit than dla. Yet there arent endless threads asking people to justify whether the money got spent only on the child. It seems the latest tables rolled dla and pip together so its harder to check. I know child benefit is means tested but a lot of people are cross about that.

People are so short sighted. DD2 has ASD. She is 'of at least average intelligence' but her ASD impacts her ability to cope in society. One aspect is that she can't communicate when things aren't going well. She isn't quite mute at those times, but she tends to just say 'I don't know' or shrug her shoulders.

DD2 is entitled to the high rate of mobility allowance. Now, I'm sure that many will think that as an able bodied person, she shouldn't be. Right now, the LA pays for her transport to college. I don't know how much they pay, but I do know that an Uber would cost over £11,000 per year, and her taxi driver has to hang around before her pick up because he has set times that he needs to transport her.

With a reliable car, DD2 will likely be able to drive herself to set locations. She's never going to be one who 'nips into town', but she will be able to drive herself to school/college, where she knows where she's going to park, the route to her building, and where her trusted staff are. In the future, if she manages to find an employer who can adjust to her needs, she would be able to drive to the car park of her workplace.

That £4,000 per year will save the LA likely £13,000 in transportation costs. Then, in the future, it will enable DD2 to be a tax payer. To contribute to society.

People who think it should be kept separate haven't really thought it through.

Am I expected to toss up the precise amount that gets spent on, for example pull-ups wipes, nappy bags, each week, and transfer that amount into my account before I by the groceries? Do I need to work out the additional mileage when using the car? How much that equates to? When deducting the cost for the s more specialist swimming lessons, do I first deduct the cost from the local pool ones, and then specifically transfer that over? What a lot of unnecessary extra admin for someone that's drowning in disabled child admin already. My loss of earnings because of my child is faf in excess of the DLA income, even before specifics for her are added.

It goes in the pot because that's how families work.

Some of this money helps so much in the long term. DD was completely housebound a few years ago. The money has allowed me to spend that money and have the time to get her back out into society.
I literally spent every day fighting for this, I drove school and all the agencies mad. It’s worked to a certain extent that she is now back in education full time.
She will go to further education and hopefully will work one day with adjustments.
If I hadn’t had the time and money to help her what kind of state would she be in now I wonder. What more would she cost the state long term with zero education.

"Disagree with disability claims for neurodiversity. Some children are most expensive to raise than others. That’s what you sign up to when you become a parent. My ND child costs me thousands more than my NT child. That’s just parenthood. No need for the state to bail you out."

You obviously don't consider your child to be disabled by their condition. That's fine. You don't have to try to claim DLA if to there is no disability. Let others who have children disabled by their condition, claim it.

I think people are using DLA and PIP interchangeable because 16yo get PIP rather than DLA, so are still ‘children’ and it muddles the conversation. Frankly if a family is juggling the needs of a disabled child, forgoing income because one parent is having to take on board the majority of the childcare, I am not sure that it is unreasonable to spend a portion on a family holiday or a few MH breaks for that person given a) the lowered income means they are less able to afford it and b) carers have been shown to experience significant MH issues such as anxiety and depression so it’s in the claimant child’s interests that their carers are better able to cope.

It’s not a huge amount pa to a family that has lost an income (it’s about £9800 in total at maximum rate (which is rarely given), so the equivalent of a £11k gross salary. And it’s cheaper to provide a family with this money than it is to build and staff care facilities/specialist schools for them.

We never claimed DLA because we felt we were/are comfortably off (we are MNrich apparently, though in this climate DH faces the high risk of redundancy continually). However, when DD turned 16 and struggled to stay at 6th form, we claimed for her. It is her money, assessed on her needs. Not ours. I keep it separate and monitor how it is spent so that it is 100% spent on her - but we are privileged to be in a position where we do not have to worry about the bills and mortgage being ‘older’ parents. Many families with disabled children are not in that space. Many families have parent carers who are still very young and don’t have professional careers or who struggle themselves with disabilities and associated MH illnesses (I had severe depression for some years, so can only imagine how tough it must be for those without our resources.)

It has genuinely given DD some independence and scaffolded her into obtaining an access diploma and attending university - we have several ideas for ND inclusive careers that mean she will eventually become economically active - which has to be a goal, surely? The DLA is helping her on that path. The money now enables her to pay for private counselling/mentoring and provides money she can live off (only entitled to minimum grant due to DH’s salary, though he pays her accommodation in full). Given her medication costs before shared care (and now she is at uni, her new GP is under no obligation to continue this so the bill may come back any week) is £100-200 pcm and fortnightly support sessions are £280, she would struggle and there really isn’t much left over. She is not ready to try paid work yet, so there are no other sources of income for her at this time.

If health services, esp mental health services, were better resourced, we might find that more people got the help that they need to be able to work and pay taxes.

My friend's child, 17, is autistic and has a whole raft of MH diagnoses, including suspected PTSD, GAD, and ARFID. They were awarded DLA when they were 10 or 11. They were referred to CAMHS when they were 9 or 10 and absolutely fuck all happened until they were 15. At 9, their issues were far less serious so given low priority, and they languished on the waiting list for an autism assessment for years until friend had an utter meltdown at the GPs and the GP got CAMHS to move their case up two tiers because they had got so much worse. That finally got them assessed for autism and led to the other diagnoses. Their MH was so fucked that they haven't been able to attend school since their first year at secondary, where they were horrifically bullied. They have no GCSEs or A-levels.

Presumably because of their age, their case was closed to CAMHS and transferred to adult MH services. Following yet another raft of asssessments, they were referred for EMDR for their PTSD, waiting list currently around 2 years in this area. Child uses a chunk of their PIP to pay for counselling privately, taxis to get there, and things like noise cancelling headphones to drown out the sound of their abusive nuisance neighbours and contributes to the cost of the few foods they will eat.

While there's no way of being certain that prompt assessment and diagnosis would have made a difference, it certainly may have meant this child was able to access education. As things stand, I'm struggling to think of what job they will ever be able to do without a massive improvement in their mental health and maybe some qualifications.

@LakieLady that is awful but, sadly, not an uncommon story amongst people I know trying to access services and support via CAMHS. It is not fit for purpose and I am positive that it’s failures contribute to a large number of YP leaving school with little to no qualifications, deepening MH conditions and being largely unemployable. They are being thrown away by society and the system intended to support them. My DH was so angry - he felt our family was cut adrift and no support was ever offered so we had to go privately all the way. Even with MP support and advocacy with the local NHS trust we got bugger all until my DC was nearly 18 and about to age out of the system.

Not sure what the answer is, but a better resourced NHS/CAMHS would go a long way to supporting these YP and their families and, long term, bring down the social care bill.

Possibly the most mealy mouthed and ignorant comment on the thread. It’s sickening how those who clearly have no experience or understanding of disability feel perfectly entitled to tell those who do how to spend a benefit paid in cash for good reason. Not to mention how many times the phrase ‘my taxes’ has appeared in different guises. Does it really never occur to people that those in receipt of these benefits can be tax payers too ?

Disability benefits are not designed to be spent exclusively on aids, adaptations, wheelchairs, zimmer frames, or whatever other pathetically stereotypical associations ignorant people make with disability. They are paid in recognition of the fact that living with significant disability is expensive.

For disabled people the things that non disabled people take for granted can cost considerably more to access and disability benefits are designed to remove some of the cost barriers and level the playing field a little more.

The whole assessment for benefit revolves around this principle - level of need translated into likely cost and benefit awarded at the appropriate level to address that cost. So those who have been awarded it have been assessed and found to be eligible by trained and qualified medical professionals bound by strict DWP activity descriptors.

Once benefit has been awarded there are no restrictions on how it’s spent. And for good reason, as those here who are disabled, or who have disabled children will know. Disabilities are many and varied, not one size fits all, and no disability affects any two people in exactly the same way. That’s why whatever disability you have is not the focus of the assessment. It’s the effect on everyday life that counts, and every disability is subject to the same assessment.

The award is paid in cash so that the disabled person or their parent/guardian can spend it in a way that best supports their particular need, wherever that cost arises. That’s why they are called Disability Living Allowance and Personal Independence Payment. Because they are designed to confer a degree of independence in daily life that the person would otherwise not have.

l don’t think that’s a particularly difficult concept for the average person to grasp. Given the wide range of disability l’ve seen throughout my career working closely with disabled people and their supporting organisations, l think these benefits provide value for money for the tax payer when you consider that for many, the alternative is to be hospitalised or go into full time care. Which costs considerably more.

I think it's a top up amount of money for people to add to their household budget and spend as they deem necessary. Maybe on what some perceive as a luxury, maybe on more conventional necessities.
I don't think it needs to be analysed as a seperate amount that gets spent on anything specfic.

And this really is the crux of the matter isn’t it ? Not every disability will incur extra cost, so if it doesn’t, why try to claim ? There are inbuilt safeguards in the system so that minimal cost conditions and claims from those who would chance their arm are eliminated. But what it comes down to in the end is that just because you can doesn’t mean you should.

Unfortunately that’s not how human nature works, but the perception that some are claiming unnecessarily is what does the damage further up the scale where there is significant disability, attracting significant cost. But l would still argue that these benefits should remain universal because disability is universal and introducing means testing would inevitably mean that some would lose out on the support they need for the sake of a few pounds.

Good question, and I'd like to hear government address this ( but they won't)

Neurodiversity and the rocketing increase in diagnoses.

It’s reached a point where I’m honestly surprised if a family has 2+ children without at least one having a diagnosis, or if I open a thread here about virtually anything and there isn’t a mention of autism, ADHD or very usually both. About 20% of DD’s school class are either diagnosed or pending diagnosis, and this increases as they get older.

A lot of posters on these disability threads have said there are lots of problems with how assessments are carried out, and the awards that are given, that are often incorrect, and have to be appealed, which comes at a cost to the taxpayer, who should be concerned about that imo. There is no point comparing your friends award, to somebody else. She should appeal her award, if she feels that she has not been given the correct level.

It’s the comparison which proves how ridiculous it is.

Possibly because other countries were better at addressing similar problems arising during the pandemic than we were ? We seemed to be focused on increasing police powers and paying people to do nothing during the pandemic.

Rather than taking care of the health of the nation, we preferred to arrest people for taking perfectly legal socially distanced walks in the park and a myriad of other transgressions, not to mention the government tasked with getting us through the pandemic being more focused on what profit they and their mates could make on the back of it.

And the way disability benefits are assessed and paid in other countries differs from the UK so the definition of disability will differ.

There could be many reasons for the disparity. The assessment is not one of medical need, but how that need translates into extra cost, so just because someone uses a wheelchair doesn’t mean their actual walking ability won’t be taken into account. And the need for carers etc is a completely different assessment than that of disability benefits. So it’s possible that someone with a perceived lesser condition can end up with a higher award because not very need is on display for all to see.

Having said that, if any client of mine had been thus awarded l would definitely have appealed, because as has been discussed on many of these threads, the assessment process is flawed. You only have to look at the number of appeals successful at tribunal (currently somewhere in the region of 70%) to realise that something is very wrong within the assessment and award process. If the government really wanted to save on costs, this is an area in need of urgent investigation because appeals cost the tax payer a fortune and the potential for savings is huge.

I can’t believe that people save their kids dla. How nice it must be to use tax payers money for his ISA

Being paid for by people who can’t afford them for their own kids. No wonder everyone is going Reform.

Again it goes off need not diagnosis.

if you look up how to use DLA saving for the child’s future is literally one of the recommended uses . I’ve been a taxpayer for 20 years so yeah I think it’s fine . I use it in ways I think will benefit him and yeah I think about that long term as well. Get over it .

Hyperbole, not everyone is going to Reform, and those that are, will find themselves no better off, if Reform does get in, unless they are rich in the first place, of course. Reform certainly will not improve the lives of those people, who have to rely on benefits.