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.

Because I know this family very well. I know when their dog stood on a bit of glass and needed surgery or when they all got COVID. I even know her husband had a vasectomy and intimate details of their lives. It's what friends do. The chances that her daughter has another disability that she has just never been mentioned during the countless discussions we have had about her daughter's ASD are ridiculously low.

Parents don’t always tell people, including people they are close to, the whole truth about their child’s disability and benefits because they know many are judgemental.

Although a diagnostic report and GP notes may well be detailed enough to cover care/mobility needs.

Masking and being academically able does not mean a child does not have care &/or mobility needs. Just because you don’t understand it or see it, doesn’t mean it doesn’t exist.

I would accept this with almost all other families apart from this one. I know for a fact that the daughter doesn't sleep in a tent, can dress herself and eats normally because I have stayed over their house for long periods of time, babysat their kids and had the daughter over for a sleepover and fed her countless times.

The mum is candid about the struggles she does have with her daughter who can find some clothes (mainly dressing up clothes but some regular clothes) too much from a sensory perspective, likes her room in a specific set way and can be prone to withdrawing after a tough day at school. The daughter also doesn't like surprises very much and prefers to know about stuff in advance. I doubt very much the mum would have gone into this level of detail but neglected to mention bigger issues.

'I don't think the mum would have gone to this level of detail but have neglected to mention bigger issues'...

This is where I really do disagree.

Both of my children are autistic. Our friends know that and know the issues they can see.

They don't know, as one example, that my son who is an adult can't toilet without a full change of clothes because I respect his privacy too much. I didn't tell them that when he was a child either for the same reason. He is now studying at university. How would he feel if he thought other people knew about that?

I've already mentioned my daughter.

These children will grow into adults and our aim for our children is that they will grow up and be able to function. It's abhorrent to me that intimate details of their care would be known by third parties who could spread gossip etc.

I can't speak for your friend but i think you massively underestimate that parents will protect our children.

The poster is right in principle. Not claiming the benefits you are entitled to doesn’t mean they will go to someone more deserving. The benefits budget is set long term and reviewed at different stages. So if the number of claims reduces, the overall budget eventually reduces and there is less money available.

And it’s also correct that in many cases disability benefits like PIP and DLA are the gateway to other services for disabled people. They are the passport to accessing these services and in some cases can be a shortcut as they provide acceptable proof of disability without the need for further assssment. A perfect case in point is the blue badge scheme. Certain award levels of mobility component of PIP/DLA automatically qualify the person for a blue badge as they are acceptable proof of disability without having to go through yet more medical assessment.

These benefits are universal because disability is universal. Means testing will always mean that some will miss out on essential support for the sake of being a couple of pounds over the threshold. How do you justify someone being slightly better off having to drain their bank accounts in order to qualify, while someone else with similar needs gets full support ? If this thread and my twenty some years in this field demonstrates, the better off tend to ‘self regulate’ and some won’t claim just because they can. But it’s important to point out that there are some services that can’t be accessed unless you are in receipt of these benefits.

I don't really know what I can say to prove that I know this family well enough to know that they aren't concealing loads of additional care needs. It's crazy to me that you would rather assume this than just accept that a DLA application can be accepted in cases like this.

A diagnosis and GP notes is indeed sufficient.

I didn't say masking or being academically able precludes people from having care or mobility needs.

But that’s the point, you don’t actually know that know the family well enough. Many parents do not tell even the closest of friends/family everything.

You have mentioned masking and being academically able alongside mentioning you don’t think the child has needs sufficient for DLA. If you don’t think they are relevant, then they aren’t relevant to your posts.

I don't underestimate this but I can't stress enough that I have had this children stay at my house for whole weekends and stayed with them for large periods of time. I have looked after her myself for days. There is no way that she is sleeping in a tent or unable to toilet without a full change of clothes. With the best will in the world, the care needs you are projecting on to this girl just don't exist.

She is not without her needs and as I outlined above, I think problems might be brewing in the future but it is bordering on bizarre to claim that a child that I have such a huge amount of contact with is concealing such severe care needs. Would your son have been able to conceal his needs at 10 years old staying at someone's house for a few days?

I'm not projecting any care needs on this girl at all!

I'm just pointing out, as others have, that you cannot know the extent of her care needs.

You cannot assume your friend tells you everything no matter how close you are.

This child has met the criteria for DLA so clearly has the evidence to support it. That's all you need to know.

This is the strangest debate ever. You are telling me that I don't know someone as well I think I do despite not knowing this person or the amount of contact I have had with the child. Why are you so desperate to assume that the mother is hiding stuff rather than actually her daughter's struggles as she documented them were deemed enough combined with the evidence provided?

I mentioned masking as this is why she struggled to get buy in from the school initially and also why the school feel they can't provide useful evidence for a DLA claim. Her being academically able was just about the fact that she is doing well at school and thriving there. I think most people would agree that this is a huge issue for disabled children who sometimes can't attend school or fail to thrive there.

I think everything on your list is perfectly acceptable.

If also think things like - heating/electric/water bills as some people will need to wash more often, some require warmer temperatures, more electric for sensory items/charging keeping equipment running. So household bills will be higher.

Taxis as public transport or even driving may not be feasible.

Food - many have dietary needs such as people with AFRID or things like IDB or coeliac. And these are usually more expensive.

Meal service as not everyone is physically or mentally able to cook for themselves or even go food shopping.

Extra supervision or carer support beyond what the parent can give.

Sensory or other disability related equipment or toys.

Activities - often things like horse riding or swimming can be helpful for musical or mental health conditions.

Replacing household items that get damaged or used up faster due to disability.

Renting a larger property or one suitable for a wheelchair or similar.

Buying continence aids as I’m sure I read that only a certain amount are provided.

Anything that means the person can be more integrated in society and happier - classes, activities, carer support to take the person to these activities and stay with them.

Additional tutoring or private education.

So so many things. Probably loads I haven’t thought of and remain unaware of.

Exactly!

My initial post was about the evidence needed. Posters listing oodles and oodles of reports etc. I merely pointed out that actually you can be successful with far less.

What care needs do you think I would not be privy to as someone that has looked after the girls for days on my own and lived in their family home for a while? I just don't understand what massive need this girl could have that her mother has never mentioned to me, that wasn't picked up in the asessmentvand I wouldn't have witnessed myself.

Thriving at school is an interesting one too.

My daughter was 'fine' at school, according to school, until she wasn't. It was after that I found out she was non -verbal for an entire year and school had declined to mention it.

School didn't support my daughter's ASD assessment either. When she was assessed by the NHS they could clearly see ASD across all criteria.

So long as the child is behaving , which many masking children are , then the school will claim there is nothing to see here, especially if they are cognitively able.

She will have reports though if she has been assessed, These are often multidisciplinary, could include ASD assessment itself, Speech and language, Occupational therapy, education pscyhologist, camhs.

You are telling me that I don't know someone as well I think I do despite not knowing this person or the amount of contact I have had with the child.

No, I am telling you that you can’t know for certain the child’s needs or the evidence they sent even if you know them well. I haven’t said you don’t know them as well as you think you do.

Why are you so desperate to assume that the mother is hiding stuff rather than actually her daughter's struggles as she documented them were deemed enough combined with the evidence provided?

I am not desperate to do any such thing. I have acknowledged a diagnostic report and GP notes can be sufficient. It is about quality of evidence, not quantity. What I am doing is telling you that you can’t be certain you know the whole story.

Just because a child masks doesn’t mean they don’t have additional care needs, including care needs you may not be aware of. Frankly some schools are rubbish at recognising masking and supporting DC who mask. The fact the child is experiencing the coke bottle effect means there are unmet needs at school.

This child is genuinely thriving at school. My daughter goes to school with her and I have volunteered for various events. I do see future problems though socially as the girls mature a bit more but at the moment she has plenty of friends.

I think the girl's traits are quite subtle from the school's perspective. It would be tough in a class of 30 to single her out as someone that obviously needs support, especially when there are a hell of a lot more kids more obviously struggling with various things in that class. She definitely does have ASD though, similarly to your daughter it wasn't a borderline diagnosis.

A diagnosis is not needed. It’s the effects of the condition which are assessed, not the condition itself. And for the majority of the more severe or complex disabilities GP notes are nowhere near sufficient to secure a claim. That’s why the claimant is asked on the application form to supply the contact details of all healthcare professionals involved in their care. In the case of claims for mental health conditions with no additional physical disability, GP led treatment is not accepted. There has to be evidence of second line consultant led mental health treatment, not just a few anti depressants prescribed by a GP with no specialty in that area.

You’re being challenged because what you’re saying is very often said but very rarely true. Unless you are intimately acquainted with the claimant or their family and know every aspect of the condition, plus the details of their benefit claim, you can’t possibly know the basis on which that claim is made. I’ve spent over twenty years working in this field. I’ve heard my fair share of these claims and have enough experience to know most, if not all, are baseless. Of course people cheat. No system is completely fraud proof, but l’ve never yet come across anyone who will openly admit it, given the consequences if they are reported.

And given everything you’ve had to say about these benefits why are you on MN discussing fraud instead of reporting it to DWP? Because if you’re not part of the solution, you’re part of the problem.

What care needs do you think I would not be privy to as someone that has looked after the girls for days on my own and lived in their family home for a while? I just don't understand what massive need this girl could have that her mother has never mentioned to me, that wasn't picked up in the asessmentvand I wouldn't have witnessed myself.

You were using this child of an example of someone with low care needs who has got DLA without (much) evidence.

I have no idea how well you do or don't know this child.

I am simply challenging your assumptions.

a lovely, academically bright biddable child with social issues, who masks, sounds very vulnerable to me. I can Imagine a child like that being sexually abused, getting into a strangers car, being manipulated by friends for thier amusement or into harmful activity, being exactly the type of person drawn into online harm. A lot of prevent referrals are mainstream pupils with autism. It seems like a lot of supervision would be needed.

I cant comment on self reporting issues that don't exist other than any system is open to fraud and tackling fraud is important.

Sadly this has always been the case for some people, their personality just makes them inherently gullible or similar. I’m not sure it’s a disability in need of benefits. If anything I’m sure working and being a bit more independent would help to develop resilience.

Looking after a disabled person as a friend or relative isn’t the same as providing full time care. If this person has been assessed as eligible for benefit there would have to be an element of proof of need. You’re implying that assessors are idiots and benefits are given out like candy for next to no reason. There are posters here who know from their own experience and to their cost that this is far from the truth, having been made to jump through hoops to secure an award. Assessors err on the side of caution because that’s how the system works. Where there is doubt about the veracity of evidence, of insufficient evidence exists to meet the thresholds, benefit will more likely be denied - it’s not awarded on the balance of probability unless medical opinion supports it.

I know a diagnosis is not needed but it is considered as quite powerful evidence. Of course she doesn't have the most severe form of disability. I'm not claiming she does. I'm just staying a fact that GP notes and a diagnosis can be deemed sufficient medical evidence.

My friend isn't admitting to committing fraud. I'm not even sure she has committed fraud. She may well have completed the form truthfully. There is a lot on there that could apply to her without too much contortion e.g. reluctance to go to bed, reluctance to get up etc. At the end of the day the girl has ASD and has been awarded DLA. Who am I to declare that definitely it's fraudulent? I just want to emphasise to those that are adamant that you need a wealth of medical evidence and that the needs must be very obvious and expensive that this isn't always the case.

Child DLA is assessed on the social model, which argues that societal barriers create disability, not just the condition itself and it considers this alongside functional ability. So l would argue that this is exactly the kind of situation that would and should attract an award of benefit.

DLA/PIP can ease the strain on a family in more ways than one. It's obviously hard for some people to imagine the strain on families with a disabled child. A lot of these parents spend their lives in survival mode. They have probably been battling for years to get the right support for their child. A battle which wont end once the child reaches adulthood. Its a life long battle that will only get harder. They deal with issues that other parents don't. Their own ability to earn money is seriously impacted and is the chance to live a 'normal life' themselves. If, after another week of getting through it, they use the money to buy a family take away. Is that so wrong? It benefits the disabled person to have parents who are a bit less exhausted or stressed.

I'm not implying the assessors are idiots at all. This is all projection. My point is that people like you on this thread simply can't accept that people like my friend exist. There is no hidden massive need, no wealth of medical evidence they have secretly obtained, they have a diagnosis, gp notes and have completed the form and been successful. Do you really think this is impossible? If you are so experienced I am flabbergasted that you have never encountered this before.

Of course being a FT carer is different to looking after someone for a few days but posters seem to assume that this girl must have a second disability or something serious need that is so extreme that the school can't pick up on it and I can't witness it despite having her 24/7 for a few day and staying at their house for a prolonged period of time and watching everyday life. I am literally struggling to think of a need that would manifest in this way.