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.

It was a child like your DD that made me wary. I simply remarked it was sad there was no cure and the mother's reaction was scary. She accused me of wanting to change her son, as if autism was bad. Small wonder that I try to avoid talking about it as a disability.

finding sports who either run classs for disabled kids, or who will allow disabled kids to take part is hard. Team sports are often out, I took my daughter to a regular football club when she was 7…by the end of the first season she was effectively ostricised because she found it harder than other kids to pick up the rules and as such they made her the scape goat when they lost because they were already super competitive. So that was out.
then we heard about RDA, riding for the disabled association, riding isn’t a team sport, so people are less competative in that way, it’s excellent for motor skill development, for routine forming, and rda horses are extremely calming for children with regulation issues. It’s also not as expensive as people think because you don’t have to sign up for weekly lessons you can go as and when you can afford it. After age 12 kids can volunteer to help out in exchange for lessons etc. you don’t need a load of expensive gear, you don’t need to do grading that cost extra money. It can be very cheap as a hobby.

Not entirely on the state. It’s worth mentioning that there is already an increased rate of ASD at birth if the mother is pregnant. The one particular medication prescribed was used worldwide. As no drugs are tested on pregnant women, it was always not advised to be given to pregnant women, as were the other epilepsy drugs which have not been found to have the same issue. The study which found the problem was only published in 2022. The drug is now specifically contraindicated for pregnant women. Short of never giving any pregnant woman any drug ever, I’m not sure what was supposed to happen here.

But it absolutely can be IF the reason you can't work is because your child can't be in education or childcare.

No one would take my DC for wrap around out of school care. She is too difficult. She can't even cope with school wraparound. She doesn't even go to school full-time.

If I didn't have her, I'd work full-time. With her, I can only work part-time.

How else do you suggest I support my family?

I said about horse riding in a previous post. No one gets free theme park tickets. They will be getting fast track or access passes to skip queues because their disability means they cant queue.
Any one that is not disabled can also buy a fast track pass for rides in theme parks.

If DC whose parents are on NMW have SEN and they reasonably required that SEP to meet their needs, their EHCP can fund the provision. The law applies equally to rich, poor and everything between.

Hands up all those taking part in this thread who have little or no experience of disability and who have never been through the system either themselves or supporting someone who is disabled, who actually know how PIP/child DLA claimants are assessed ? I bet there aren’t many. The DWP don’t just hand them out to anyone who applies as seems to be the assumption on all these threads.

Claimants are assessed on how their condition affects mobility and a range of ordinary everyday activities such as getting washed and dressed, cooking, eating and drinking, coping with medication and treatments. It then translates the level of need into the extra likely costs involved and awards the appropriate level of benefit. It’s a harsh assessment and these are difficult benefits to secure - especially child DLA. All children need support and care. To qualify for child DLA you need to demonstrate a level of need significantly above that of a child of similar age without a disability. And it’s a very high bar.

Running total of items lost/destroyed/smashed by adhd asd ds this year: approximately £10,000. Lost income from having to miss out on contract work due to unplanned health/school/ issues with ds : approximately £15,000. His PIP doesn’t even begin to cover the cost of a child with additional needs…

lots of poorer children can’t go to theme parks - but can they go to friends houses ? Are they able to form friendships ? Can they play outside ? Can they do all the things that NT children can?

Poorer families may also benefit from better food , more heating etc but the likelihood is that they can handle that.

Autistic children cannot.

I expect it to be spent on whatever is needed to improve a persons life. Such a varied and individual thing.

Why are their growing bodies less in need of nutritious food than one that happens to have autism?

"I’ve never heard anything more ridiculous! Who’s paying for the riding lessons and theme parks of those whose parents are on the minimum wage?"

Most children including those of children of parents on minimum wage are in school. Most children getting the provision described are not in school because they don't have a school place.

I’ve had type 1 for 40 years. When I was a child the NHS provided disposable syringes and insulin, snd blood testing strips which were rationed as they were expensive. There was no PIP then and I had no idea that type 1s could claim it now.

The advances in medical technology are, whilst not a cure, a fantastic improvement on how things were and it’s great that the NHS is now able to provide CGMS and closed loop systems (which should be a cost saving in the long run through reduced costs of dealing with complications). A closed loop system is currently as good as it gets for a type 1 and can, for many, iron out most of the daily blood sugar highs & lows.

But the government is having to fund an up front double economic hit if they are providing PIP as well as covering the cost of medical equipment. I must confess I don’t see why PIP is necessary on top and I question whether it’s sustainable in the long term.

This is me.

My hours and consequent earnings, savings and pension has been decimated since adopting a child "with no issues".

We spent a fortune on private support as we never quite seemed to qualify for financial assistance from the adoption support fund.

20 years later (he is now 23) he has been diagnosed as ND, had a recent SALT assessment where he scored very low in many areas, and has had a social care assessment that identified specific areas that he would require support with if he lived independently of us.

He needs more input into his day to day life than most 23 year olds and I still can't work anything approaching full time.

He works full time, but it's mainly me that ensures he is on time, has everything he needs, has clean uniform etc.

He earns a monthly wage and gets PIP.

He contributes a regular amount to the household from his salary that covers general food costs, electricity etc.

But all the running around we do for him, petrol, parking, train fares to hospital appointments, going with him to things we wouldn't chose to, but because he needs someone to help him, basic things like practical clothes shopping etc , all that is covered from his PIP.

I take the view I have saved the country hundreds of thousands by adopting him, we got no help, financial or otherwise when we were on our knees, pleading with SS. So the PIP is a way of recouping some old expenditure made on his behalf and covering all current expenditure made on his behalf and for his betterment.

Just imagine telling some of the yummy mummies on MN what they should and shouldn’t be spending their child benefit on !!

I have mild hearing loss and tinnitus. I bought myself a fancy white noise machine so that it's a bit easier to fall asleep, and a TV speaker system with a "clear voice" setting so I can hear people speak better on the telly.

I used my DLA to fund these because I need them...

Obviously I didn't, and I don't receive DLA, because it honestly has never occurred to me that other people's tax money would fund these things for me, but maybe I'm on my own in that! Some of these "needs" are honestly derisible.

Brb off to apply for DLA!

Why is a theme park a legal need?

Ok over the years my DD has tried gymnastics (they couldn’t coach her safely despite saying they had ASN specialists), football (team excluded her because she wasn’t coordinated enough), cheerleading (again ostracised by the team), various stage school/performing arts clubs (more success here but her reading ability stood in her way), swimming clubs (struggled following instructions), parkour (couldn’t participate safely)… I could go on but simply put mainstream clubs aren’t set up for kids who need more support. So riding (via riding for the disabled) it is.

They dont get free tickets to get in. They get free fast access passes to get on rides.

There may not have been PIP forty yeas ago but there was certainly the equivalent in DLA which has been in payment since the early eighties.

I only know one U18 who receives DLA (or PIP?), they are autistic with high intelligence but very socially awkward with an obsessive personality. Their Mum takes £20 p/w towards rent, food and electric. They live in a Council house, he won't eat with everyone else and tends to live a nocturnal lifestyle with lights and tech on at night along with cooking their own meals at 4am.

The rest they spend on their obsessive collecting hobbies, trawling charity shops, subscribing to specialist magazines etc.

Yes I think from these threads you are most likely unique.

When I think of wether I'm better off getting disability benefits I think of my sister. She has 2 nt kids, both adults and very successful and independent. She has a good career and owns her own house. I spend my mornings after dropping my Nd kids at school in tears completely broken having eventually having dragged them both to school ( in different villages)
Then I go home to my chaos messy rented house that costs a fortune and try to tackle the housework. When I get my 7 year old from school he won't have eaten all day, and Is basically incredibly difficult to care for as he resists all basic care (including teeth brushing and baths)
I'm a wreck. I don't work got my money but I'd love to swap places with my sister sometimes

Horse lessons, while they might be enjoyable or even therapeutic, are essentially a hobby. There are usually less expensive ways to develop skills, confidence, or manage mental health.
Meanwhile, many families struggle to afford basic necessities, and using benefits for high-cost leisure can feel inequitable.
I thought disability benefits were meant to put someone on a level playing field with a non disabled person?
people can spend DLA or
PIP however they like, but morally and socially, it seems wrong to fund costly ativities that give a higher standard of living than the average person.

In what world do you think you would qualify for disability benefits becuase of mild hearing loss and tinnitus?