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.

This our life. DC started secondary school September and attendance is so far 20 percent due to hospital admissions followed by treatment at home.

For us it's my husband gave up full time work, though in reality he often works more than full time hours for an absolute pittance if you work out the hourly rate, by essentially becoming self employed and turning his hobby into work. This means he's sometimes working until well past midnight, but also means he's around to care for DS, ferry him around to school (when he goes), appointments etc. Sometimes it takes both of us an hour and a half to get DS out of the house and into the car.

I managed to stay employed by having an understanding and supportive employer, but now I've been made redundant and it's a real worry as to how employable I am, I don't see how I could manage 9-5 in an office when I'm often up with DS until 1 or 2am, but I've found next to nothing that's genuinely 100% work from home with flexible hours.

Well autistic people are not a monolith, some believe that their autism has lots of benefits along with its drawbacks, some feel it’s so intrinsically linked to who they are as a person that any cure would essentially destroy who they are. Those of us with more severely affected autistic kids are probably less likely to see the benefits and think losing those is worth it to lose the drawbacks as well. There are also many disabled people who believe the problem is not hhe
disability but how society treats people. Everyone sees it differently. There is
huge debate within the disabled community.
It’s not a simple topic with one right or wrong answer.

So again I ask why are you interested in ‘social sympathy’ if its not something you want?
I also don’t see what ‘social sympathy’ has to do with DLA or PIP claims or
how people spend that money?
For someone who claims to Not want sympathy you don’t half bleat on.

Do you? I doubt it.

Yes, my friend needs a 3 door because she needs to get her wheelchair in, she also needs a hoist and a swivel seat.

An old relative of mine with pretty bad mobility issues gets legacy DLA. She is a non driver and has to pay for a taxi to go to hospital appointments etc. She also has a cleaner because she is unable to bend or stand for very long. These are completely legitimate uses of the money to enable her to continue to live independently and to manage things wheich her disability makes difficult.

They absolutely don't have to take your word for it and if you spend any time on disability forums you will find story after story of people's experiences being denied, even with solid evidence. Anything can be written off as a choice or a minor issue on the whim of the assessor or judge for any reason whatsoever more or less and things frequently are.

You are right that expenses are not evidenced on an individual basis and personally I agree that this creates all sorts of injustices but is it ever going to be practical or cost effective to assess these things for each applicant? It would be very easy to inflate expenses temporarily for the sake of a claim and unless you have some sort of auditing system in place (expensive and traumatic for people whose lives are already stressful enough), how would this ever be found out? I would be very interested in ideas for a system that could do this but I'm not sure it's possible.

My relative gets the highest level of DLA mobility and would be entitled to a disabled car or scooter from motability. However she does not want her neighbours to know she is disabled or on a benefit because of the stigma and accusation of being a scrounger. She worked all her life (from the 1960s until the mid 2000s) when she became too disabled to work. I find that a sad reflection on the society we live in that someone who has made such a long and valuable contribution to the community should have to conceal a disability.

Why are different models used for PIP vs DLA (medical vs social) do you know?

"it is wrong that people who do have the money can add thousands of pounds to the cost to get a high end luxury car."

We had to add thousands of pounds to get the ordinary van type car that my son needs for his equipment and carers.

So they could ignore a lot of medical evidence tbh.

The stated intention of PIP when they brought it in was to pay it to less people than DLA. Which is why so many people are initially refused it - but then they win appeals because of course they do in fact have a disability.

The stats showed that DLA was one of the most under claimed benefit and had very low fraud rates and there were loads of warnings from lots of organisations that PIP would be harder to claim for people with some disabilities and easier to defraud than DLA.

Agreed. The disabled are amongst the most vulnerable in society. Nobody know of another's personal circumstances and no one I know with disabilities wouldn't swap pip for good health. Those without disabilities, lucky you, not only do you have good health, you also are in a position where you feel comfortable enough to besmirch those who don't. Sod you.

They are unwillingly complicit because all they can do is state verbatim what the parents are saying. They don't live with the child so can not know if a child wakes up every hour or has multiple meltdowns at home. And as I said, the parents I was talking about work ft, their kids are in wrap around care and they say themselves that claiming dla is for extras for the family (except one who uses it for her son's therapy).

Not saying the majority of dla claims are fraudelent- ofcourse they are not. But those who claim it fraudently are taking something away from those who need it so I think it's immoral.

And yet nobody seems to be proposing any measures to reduce fraud. Everyone seems to want to reduce benefits across the board for all but the most severe genuinely disabled people.

I do think it’s a bit odd that you take your child’s PIP to pay rent to yourself.

Professional, s are not that thick that they take a parents word for it they also go off how a child presents in all settings including school you are talking bollocks.

This thread is absolutely bewildering. My young adult son is currently being assessed for LCWRA. It was his social worker and our contact at the Job Centre who requested the assessment, because merely by meeting him it’s obvious that he can’t work. He has (among other diagnoses) autism and ADHD. His life is going to be hard enough already without strangers harbouring hatred and spite against him. If you feel spiteful towards a young man who has to take his teddy everywhere with him for reassurance, and is going to watch Paddington The Musical for his 20th birthday, then please think again. (I’m now awaiting the pile-on for buying two cheaper tickets to take my son to a musical for his birthday present.)

Even though your disabled child living at home costs more money?

"These are women that work while their children are in full time education (mainstream with support) and their DCs adhd/autism/mh problem has no financial impact on them. Only one of them uses the money to get private therapy for her son. The others are saving their dla for cars/holidays/children's savings. It's almost 10 k per year so I understand the temptation to exagerate"

A child in mainstream school is very unlikely to get £10k a year in DLA for autism etc. Very few children with autism get that much and a child who is able to access mainstream even with support would rarely qualify.

They cross reference information from different sources. They have a manual of medical conditions and it gives a summary of the likely level of need for each condition. If the decision maker is in doubt, they can ask a specialist medical team for their input.

DD1 got DLA from the age of 2 years 9 months (well, that was when I applied). She did not sleep, at all, at night as a young baby. She cried all night long and the only thing that stopped it was patting her really hard on the back, all night. She did not sleep as a young child. We had to stack two stair gates, one on top of the other, to keep her safely in her room. Then we had to add a plank of wood at the bottom because she realised she could slither out from underneath it. We had to use perspex sheeting, screwed onto the banisters to stop her climbing them and falling. We had to get an electromagnetic lock for the door, so that she couldn't escape, because she worked out that she could stack boxes to climb over the stair gate at the front door. She had a crelling harness to stop her running into the road if she saw a pretty stone. She had 1:1 support at preschool, then went to special school.

Now, when I tell you that despite all that, until she went to preschool and somebody else had to try to look after her, I was told I was neurotic, 'being a nurse', and 'reading the textbooks' whenever I raised concerns about her development.

Until you've been that parent that thinks they're just really bad at parenting, when they thought they'd be a good parent, and nobody admits that there's a problem, you won't understand.

It absolutely isn't about writing a form saying 'my kid's a bit hard work, you know...'

I supplied so much evidence for my three DDs' PIP claims that they decided they didn't need to assess them. They all got granted enhanced care and mobility based on paper application forms and supporting evidence. They each had around 150 pages of evidence from SALT, OT, Educational Psychology, Psychiatry, school/college, etc. They are all very different to each other, but they all qualify for their PIP.

"They are unwillingly complicit because all they can do is state verbatim what the parents are saying."

If they quoting what parents have said, they say so. "Mum says" etc.

I was thinking that. The various professionals gave thier own observations about what they could see in front of them. Anything I said was put in quote marks saying 'mum reported that'. Its very clear where its just me saying stuff.

What else are parents meant to do? When a young person reaches 19 or if they stop education as a 16, 17, or 18 year old, they have to claim Universal Credit in their own right. The child element of Universal Credit goes, as does the disability element of Universal Credit, as does Child Benefit. The parent still has to care for them, still has to provide for them, still has to feed them. But they've lost all of the money that was provided to do so. So they have to use the money that is now awarded to the 'adult' in their own right to provide for it.

If they were living in Social Care, they'd have all the money bar a very small allowance taken as a contribution to care.

Yes, exactly. DD1 used to try and climb out the window at the paediatric clinic, and would run around turning taps on and scaling the couch. The paediatrician would spend most of the time blowing bubbles as he talked to try and keep her calm enough that we could talk. I didn't need to convince him that she was active with no sense of danger!