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.

Haven’t read the whole thread, but from what I read at the beginning, I can understand the expenses arising from a child with disabilities. My eldest was diagnosed as autistic when she was 13 (after 4 years on NHS lists). Nothing was ever signposted to us and because we had the money, we were able to fund private therapies (as we had done whilst awaiting diagnoses) and ultimately private school. For which we are now paying an additional 20% in tax and having to both work FT to support (I am fortunate to work TTO + 4 weeks).

It has all been worth it but I will just say that I hope others do use their DLA wisely!

Indeed my son is severely autistic he's 15 non verbal at a special school etc etc ,it's obvious to anyone he disabled and not just my word.

There is an awful lot to unpick here.

Disability can be utterly cruel. Nobody doubts that. A quarter of the British population are disabled so there will be very few people that haven't had close personal contact with disability. Considering the odds, you would have to be very dim indeed to think that disability will never touch you or your loved ones. It's like someone claiming they will never get cancer.

It's also true that there are many different conditions associated with those that claim DLA/PIP and their needs will differ completely. Mental health is now the most common form of disability for working aged people and social/behavioural issues and learning disabilities is most common for children. So whilst your experience of disability may be about enduring painful procedures etc, lots of disabled adults and children don't encounter this particular challenge. That's the problem with threads like this.

Many posters will recount utterly heartbreaking stories about how their own or their child's disability has created an immense financial burden on the family unit. Few will doubt the validity of these stories, but they are just part of the picture. It also isn't helped that many posters expect everyone to accept their accounts about their own struggles at face value (fair enough) but utterly reject other people's accounts of times they have witnessed abuse of the system. The validity of these assertions are always questioned and they are accused of being jealous/ignorant/spiteful/ableist. There seems little scope to accept that two things can be true at the same time. PIP and DLA can be a vital financial lifeline to families struggling with the costs of disability and it is system this open to abuse and there are people claiming it and spending the money on things that the majority of the population don't support.

Finally it's not about begrudging people anything, it's about allocating limited resources effectively so that we are prioritising properly and keeping the whole system sustainable. This is in disabled people's interests more than anybody else's. If we borrow our way into a financial crisis then what do you think will happen to disabled people then who are massively dependent on a bankrupt state? It isn't kind to support state money being used to fund once in a lifetime trips and days out when the financial situation is as bleak as it is. It's the equivalent of encouraging a friend to take on more unserviceable credit card debt to fund these things for their children. Short term it will undoubtedly be better for the family but it could have terrible consequences in the long term.

Exactly.

Why did I waste time, ink and paper to print/photocopy several hundred pages of evidence from numerous professionals when I could have just relied on my word? Not to mention the cost of posting (before anyone says I could send it freepost, I could, but if it went ‘missing’, I couldn’t then prove it arrived) the evidence.

For example, for DS1, I sent his EHCP and some of the evidence in K (latest SALT, OT/SIOT, EP, CP, physio, specialist teacher, QTVI, ToD, SW evidence), medical letters from the last 3 months, hospital passport, care plan, last set of paperwork from social care/continuing care funding.

The point is that people who have claimed DLA/PIP for themselves or their child know how difficult it is and that they need professional evidence to back up what they are saying, so yes I do doubt posters that " know" someone who claims fraudulently and tells all and sundry about it
Yes absolutely there are people who try and swing the lead aa I always say on these threads I'm on various Facebook groups for DLA and daily I see people putting in claims for very tenuous reasons, that doesn't however mean they will get anywhere with their claims.

@Marshmallow4545 it's a proof lead application. You need nhs / education / professional proof. You can't just say little Johny legs hurt and he can't walk to the car. You need proof of a diagnosed condition.

Unless that's not true? Its what I had to do the get my sons dla. It's very rare to get a blue badge at five. I didn't just need to lie. My sons condition will never improve. I still to apply every few years. I'm not sure if that's also true for CP kids. But the NHS know there's no cure, no treatment. I still need to keep proving what Google of a nhs letter tells them. Higher rate is a high bar. Lower rate won't buy you a BMW or a detached house. I could use his mobility element to get a car that's true. But if I wanted say a BMW or even a Nissan Juke I'd need to pay extra thousands to get one.

You can look up the mobility scheme and see that there's financial extras. I drive a 11 year old rust bucket as it works out cheaper than a mobility car

It was the coalition government led by David Cameron which replaced adult DLA with PIP. The social model argues that disability is caused by social and environmental barriers, rather than the impairment or disability itself. DLA was based on this principle and awards focused on the impact of societal barriers on disability. The government of the time believed that this was the reason the cost of the benefit was ballooning - it was seen as too easy to claim for people who were of working age and who could use the extra income provided to live on rather than working.

PIP works on the medical model, not by directly assessing the disability or condition itself, but by assessing the impact of disability on a range of daily living and mobility activities, using the level of impairment as the basis to assess the likely extra cost. It doesn’t consider the societal impact on disability and therefore it’s harder to make a successful claim because the focus is squarely on how the disability affects functional ability. It treats all disability in the same way in order to produce standardised and objective results, rather than a subjective assessment of the claimant as an individual.

PIP was never about properly supporting disability, it was about cutting costs and the assessment isn’t a realistic reflection of the problems disabled people face in everyday life.

For example the cooking test assesses the ability to chop, peel, prepare and cook a meal from scratch. But it assumes that everything the disabled person needs is in front of them when they start. It doesn’t consider the ability to fetch and carry or bend and stretch to use an oven or take things from cupboards. The reality of cooking a meal is very different from the limited assessment PIP provides, and this is where it differs from DLA, which would have considered not only the ability of the claimant to carry out the tasks assessed, but would have considered the impact of the environment in which they were carried out.

PIP also had to conform with the Equality Act 2010 which did not call for people to have a formal diagnosis to be considered disabled. That’s partly why the anticipated cost savings were never realised - the Equality Act opened up the doors for people to make a claim for disability benefits without a formal diagnosis as long as their condition met the definition of disability and they had medical evidence to support eligibility. PIP was also opened up to mental health claims as well as physical disability, and without the need for formal diagnosis, this has helped to increase costs, despite the high bar needed for a claim solely on the grounds of mental health.

The assessment and award processes for PIP are deeply flawed. Currently 70% of all appeals are successful. To me, that indicates a fundamental problem with the quality of the assessments themselves, as well as the DWPs application of the law when translating the assessment results into benefit awards.

Appeal tribunals cost a fortune because they consist of experts in their fields. Successive governments have tried to cheapskate on assessment processes by employing and training staff as cheaply as possible - there are no doctors employed as assessors. They are mainly nurses, physios, paramedics etc, with no requirement for any area of specialism or expertise. There is a shed load of money to be saved in reforming these processes so that claimants receive a fair assessment and decision first time from medical professionals who have actual experience of disability and its effects, instead of relying on a higher level of expertise at tribunal which should have been applied first time round.

"Mental health is now the most common form of disability for working aged people and social/behavioural issues and learning disabilities is most common for children."

@Marshmallow4545 who gets to decide what category a claimant sits in? DD1 has physical differences in her brain (neurological), a clear but as yet unidentified genetic syndrome, ASD, almost certain ADHD but not yet diagnosed, due to learning disability clouding the picture. Nobody can agree on the level of her learning disability because on testing she comes out as mild LD and low normal range, yet functionally she is significantly affected. She is very verbal, superficially, but on testing has expressive and receptive language disorders, scoring on the 0.1st percentile. She also has a history of an eating disorder, but despite being weight restored the mental health difficulties endure. She is also suspected of having PTSD from educational trauma, but can't access the therapy she needs because of her cognitive challenges. She has a Severe Mental Impairment certificate despite being quite verbal and able to do basic mental maths, etc. She also has mild physical issues with her spine, hips, and pelvis, along with reduced arm strength. None bad enough to get excited about, but bad enough that she has to use a wheelchair. She has chronic fatigue and has to have several naps per day.

What 'category' does she go in?

That's true, but can we also agree that some of these behaviours are environmental, no boundaries, no discipline, addicted parents, living on takeaway and sweets. I know a few chaotic families like this, where the DC are destructive street roamers diagnosed with ADHD, potty mouth, behaviour excused as they can't help it.
Receiving benefits with very little supervision. A lot of these DC settle out through school though they've already been awarded and labelled.
I live in a low income area, with high claims.
The teachers have a difficult job for the first 3 years, teaching them how to behave.

Again, I think two things can be true.

Some DLA claims are substantiated by a lot of objective, irrefutable medical evidence. There are also claims that by their very nature their are claims though that by their very nature cannot be substantiated by such a wealth of information.

A real life example I know is a girl with ASD. She masks at school so the school initially actually didn't support even going for an Autism assessment at all. The mother persevered, applied the pressure and the child was diagnosed. At school her behaviour is excellent as it is in extracurricular clubs. The mother claims her struggles are only really apparent at home when she can unmask and the wheels come off. This mother has successfully claimed DLA.

Having been around her family a lot, spoken to this girl's siblings and even baby sat on occasion, I don't doubt that the girl does have ASD and that she does have some challenges associated with this but she is also more placid and easy to manage in some ways compared to my NT children. She is less bothered by peer pressure and social dramas and accepts direction in many ways easier than most children. The girl however is definitely more challenging than her very easy going siblings (who I suspect also have ASD) and I do wonder if the challenges will increase as she gets older.

My point is, you can get DLA without an encyclopedia of documented evidence that's verified by loads of external parties. She has a diagnosis and notes from the GP of where the mother has raised concerns over the years.

I don't think that making sure the child has a roof over their head is odd.

Just because a child masks doesn’t mean there isn’t evidence. There may well be e.g. EP, OT, SALT, CP, can all see masking for what it is.

The statistics are misleading. For example, for PIP, they lump all psychiatric disabilities together in a way they don’t for physical disabilities. If you added up all the physical disabilities it would be more.

I can only tell you what we included in this claim. I don't doubt that other evidence could have been obtained but it wasn't required in this case.

@Marshmallow4545 DD2 was so passive as a young child that even the paediatrician who saw DD1 regularly and had a special interest in ASD was just bemused by her. He said he didn't see ASD, just a passive child. She was then diagnosed 5 years later. She limped through 3 different schools in primary, very sketchy attendance with physical manifestations of her neurodiversity playing out. School 3 saw the problem when she couldn't even write in year 5 because she was so burned out. They put in so much support, and she was then diagnosed with ASD at 11. She limped through secondary school until year 10, when the wheels completely fell off the bus. She got an EHCP, a special school place that wasn't bespoke enough, then an EOTAS package, and now is in a special school that has bespoke provision. She still can't cope and is on a part time timetable.

DD3 worked so hard to be 'normal'. She actually has ADHD and ASD. She was just about coping, a grade 9 student, until OCD kicked in. Now she's at the same special school as her sister. She's doing well but has PTSD from her mainstream trauma.

These kids who seem like they're doing ok often don't as they get older.

I didn't undertake the study so I'm not sure how your daughter would have been categorised. I don't think stats like this are ever 100% accurate but they do give an indication of what is going on.

"Mental health is now the most common form of disability for working aged people and social/behavioural issues and learning disabilities is most common for children."

My son is included in the mental health group because he has generalised anxiety disorder. He is also profoundly autistic and has the understanding of a two year old so gets enhanced rate for daily living and mobility PIP. He doesn't get that rate because of mental health but in the stats it would show that he does.

Unless you are the parent (or the person claiming, if that isn’t the parents), which your pp says you aren’t, you don’t actually know what evidence they sent no matter how close you think you are. They may not tell you everything even if you think they do.

I support parents of disabled children. That includes helping with PIP/DLA applications. Even then I don’t know for certain they don’t add evidence that they don’t show me.

I’m not disagreeing with your reply in itself but l do just want to point out that to be considered disabled and to put in a claim for disability benefits you don’t need a formal diagnosis.

In the main, claimants will have a formal diagnosis, but in areas such as spectrum disabilities and some mental health conditions, as well as many physical conditions, the symptoms of which can be difficult to pin down to specifics, a formal diagnosis is sometimes a lengthy and difficult process. It’s important for people to know that a claim for disability benefits does not depend on diagnosis. As long as the claimant satisfies the definition of disability as described by the Equality Act 2010 then claims for these benefits can be made, and evidence of the actual effects on the functional ability of the claimants is all that’s necessary.

And if l may ask, why do you think a Motability car would be more expensive than the ‘rust bucket’ you’re driving now ? I only ask because there are many options on Motability for vehicles which require little or no advance payment, and some of these can be quite high end cars. There would be no initial outlay and the only cost is in handing over the mobility component each month to pay for the lease - maintenance, servicing, insurance and breakdown services are all included in the package.

The fact that higher end and luxury vehicles are available on Motability is a bit of a red herring because in reality most people on the scheme will go for the standard options as they cost less. It’s mainly in cases of complex disability where the disabled person themselves is the driver that the perceived ‘luxury’ options are taken up because the size or features are essential to the driver.

Well that says everything. The civil service that doesn’t function, that insists on WFH.
The Civil Service that blocks everything a Government aspires to do, that should be culled to half its size including disposing of the 444 quangos that have proliferated over many years.
That Civil Service!
The Civil Service that holds the unelected power in this country.
I suppose you see plenty of people “taking” out of the system so of course it comes easy to you.

To be honest, because I had evidence, I applied with evidence and assumed that was needed.

I have no idea if I had applied without evidence whether I would have succeeded anyway.

My son doesnt have higher rate care or mobility.

He attends a special school and had evidence of things like hypermobility, anaemia, bowel issues and eye issues that are measurable ( not just parent reports) and are common comorbidity with asd. He also has reports from school, the police, ots, physio, ep, psychiatrists, paediatrician and his GP on more subjective issues like repetitive behavior or routines or social interaction, but they are really consistent between people that have never met each other and have nothing to gain from making it up.

I don't necessarily disagree with you that problems might emerge later for this child. She is in Year 6 at the moment though with excellent attendance in the only school she's ever been to. She loves school and does very well there academically. I do think there are issue brewing socially but they haven't manifested yet.

I am not necessarily saying that this child should never qualify for DLA and that things will continue to be as smooth sailing as they currently are. I'm just saying that there aren't really any additional costs associated with this girl's disability at the moment and her needs aren't substantially greater than any other child of the same age. I don't in anyway dislike the child or the mother but I do wonder why she thinks her daughter needs DLA right now and how she completed the forms successfully.

I do know. She literally told me. Why on earth would she lie? I lived the whole diagnosis process with her and knew all about the problems she had with the school etc. I see absolutely no reason why she would gain all this extra evidence and then lie to a good friend about it who has absolutely nothing to do with the process.

I don't know how she completed the form but I know she has the diagnosis and GP notes as evidence.

How do you know she doesn't have other less obvious disabilities?

How do you know the level of care that she requires at home?

For a while my daughter seemed like this girl because she masked. However at home she was the epitome of the 'bottle of coke' analogy that we often here about. She spent months sleeping in a tent on our living room floor because tranisitioning upstairs was too much. Getting her to eat anything was a time consuming process as was getting her to wash/ dress or function normally.

I'm not saying your friends daughter is the same as my daughter but, simply put, you have no idea what goes on behind closed doors.

None of my friends know about this. My daughter will grow up and she deserves privacy concerning her disabilities.