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.

Thing is - it’s not ‘disability bashing’.

It’s that the numbers claiming have suddenly drastically increased - from 3 million in 2019 to 4 million in 2024. This acceleration in claimants shows no sign in slowing down.

Thats why people are interested in the topic - it (along with other high-cost benefits like pensions) are going to bankrupt the country.

It isn’t sustainable.

Its none of their business but it can be spent on anything you want, or need.

That’s great for your child that they are in that situation but not all are.

Agree completely.

I’m absolutely dreading the future. A skeleton workforce taxed to the hilt to pay benefits to the chronically anxious.

Everyone wonders why services are getting worse yet can’t make the link between a rocketing number of service users and dwindling number of taxpayers.

It’s like shouting into the void isn’t it? They just won’t acknowledge free everything isn’t a workable system.

Right, because that’s the reality of how things work.🙄

My children have EHCPs. It’s not as straightforward as complaining to my MP who, just to add, I have been complaining to for years.

School jobs are school hours- not an hour or so after school starts and then leaving an hour before . Freelance requires skill , training , money to put into it. You honestly have no idea . I spent years looking for work to fit around my son. I managed some casual work on nights when he was a little older and I had met my partner so he could stay home with him . I am 40 now , my son 19 . I managed to get a degree and am now at the starting point of a profession earning a poor amount . I was lucky because I did have support, some do not and you are privileged to be so clueless because you haven’t had to deal with it.

Hubby gets PIP- epilepsy, autism, ADHD...
It goes on- car so I can drive him around (not mobility car)- but it has to be slightly bigger and higher up for him to get in once he has a seizure
Taxis so I don't have to take him places. In the rare instance I am busy
Someone to go with him to new places- as he can't plan a journey and gets on the wrong bus regularly
Other things it has gone on- new internal doors (previous weren't safety glass- couldn't risk it for a seizure). Couldn't have solid ones in case he has a seizure behind one ...
Blackout blinds/curtains for keeping light levels in check
New dimmable lights
Replace a glass table- incase he went through it with a seizure
Meal boxes- preprepped as he can't chop veg due to the tremor in his hand
Quick food- when I work long hours and have to look after him due to increase in seizure activities and children
Childcare- for when seizures have taken him off his feet and I still have to work as kids need looking after
Yes all these things technically benefit the family- but are higher spec due to his needs.... And are just some of the things I have sorted in the last 18 months
I work and am just a higher rate tax payer (and we only get some pip no other benefits)...

Change of govt (which we’ll get in 3.5 years) and it will all stop.

Hmm DLA may not be needed quite so much if there were:
Decent schooling and education available for all.
Decent childcare for those with varying needs, available for shift workers as well as 9-5
Flexible employers; both disability and career friendly that allow for many, many appointments, sickness etc and recognise strengths in all
A well functioning NHS.
Inclusive and adequate housing.
Affordable energy.
Affordable nutritious food
Functioning and affordable public transport
A well functioning social care system.

In general valuing people over profit and recognising many undervalued minimum wage jobs

Perhaps if we stopped lining the pockets of this profiting from the above systems PIP may not be needed?

Or is PIP now looking like the better of the options

My neurodiverse child can’t talk, is doubly incontinent and requires mobility aids. Why would he be less entitled to DLA than someone else with a disability?

It’s almost as if there was a big event that caused some people to be left with chronic health conditions and during that event the health system wasn’t doing lots of routine treatments and testing that means other conditions were left to develop or worsen and that there’s still a backlog so people are on really long waiting lists for treatments…

But… there couldn’t possibly have been anything like that?

DS receives middle rate as a type 1 diabetic. His DLA used to pay for his continuous blood glucose monitor when we were having to self fund it. Now the NHS covers this funding, but before if you couldn't afford it you couldn't have it. ( There was once a horrible conversation with the medical person when DS started at his new school. There was another boy with type 1 in the class he was joining. DS had his CGM, sending blood readings to his phone, and we had him on a closed loop after buying the system from a company in the US. She asked why would the other boy be finger poking and using an insulin pen as it's much more work. The answer was because we could pay for it all.)

We now use it to cover his swimming club fees and jiu jitsu classes. Type 1 has so many long term complications we think the best way to spend the money is to use it keeping him fit and healthy.

I know someone who spends it all on V bucks and Robux.

Examples of what I’ve spent my child’s DLA money on (he’s severely autistic)

A holiday to Bluestone
A caravan holiday
New flooring as DS had soiled the old carpets
Multiple beds as he breaks them.
Food bills as he throws food around, tips cereal packets etc
New furniture as he destroys furniture.
Days out
Big items like a trampoline etc
Bills as I am his carer and cannot work full time
Taxis

I was shocked reading some of the comments on the earlier thread. It really saddens me that these attitudes exist, I’m in Ireland and I do think there is a different attitude here to receiving social welfare and less of the whole “benefit scrounger” mentality. Unless you are blessed with an amazing family it’s almost impossible for parents with children with additional needs to both work fulltime. Anyone I know who works it’s usually a grandparent who does the childcare. Depending on the child’s needs most after school care just isn’t suitable and childcare just isn’t available. My child is a great sleeper thank god but some parents are up every night from 3 or 4am. I can’t imagine what that’s like on a long term basis it must be hell. Some people who post have to be trolls as surely as a parent yourself you really can’t be so unempathetic and nasty .

most of the stuff you mention is reasonable. I know 3 families who claim DLA, 2 of which have a child in a special needs school (child non verbal, still in nappies) but all work full time. Maybe it’s flexible where I work, but one has family help, the other 2 go into work a little later, and leave around 2pm, and log back on again later as an adjustment on office days, and work at home in school hols. One school offers a holiday club too. I know of others in my wider team who work with ND child too. Maybe as they had the job before the child, and able to apply for some flexibility. I know not everywhere is as accommodating, but many parents of ND DC do work, especially as they get older.

Honestly, what people do with given or earned money has nothing to do with my opinion

there is the belief that I hold that we are going to give account to God for everything we do on earth but this still does not mean I believe your spending is wrong.

And even if you do get one, how do you deal with all the things that need to be done. Hospital appointments, school meetings, therapy appointments etc. It takes me three times as long to do simple things like plan a trip out, my spare time is way less because my daughter needs me more and that’s on top of all the normal mental and physical admin we do as parents. As an example, on her calendar this month she has 2 consultant appointments, fortnightly physio, her TAC meeting and another school meeting to discuss her exams. That’s fairly typical for us.

I am very fortunate to have an employer who is entirely on board with the flexibility I need. When my daughter was younger her CDSW asked me how on earth I manage to do all this stuff and work full time. She said very few of her families had two working parents, for some it just isn’t possible. I’m “fortunate” my daughter’s disability isn’t profound and her admin is way less than some.

But, if anyone wants to swap because I have the benefit of a “free car” (the one we’ve just ordered has a £4,500 down payment, the only one we could find that met all her requirements) then let me know.

Also, my child goes to school (and I work), but I also only get 2-3 hours sleep a night due to his care needs. I am killing myself working all day on 2-3 hours sleep, but I don’t think it would be massively unreasonable to not work and use that time to sleep instead and can see why people with disabled children can’t work, even when their child is at school.

Do you know what shouting into the void is? Seeking out of school childcare for kids with additional support needs - my child is 14, there is literally no regular childcare for her, so I need to be home when she gets in from school. There is no holiday childcare for her at all. Shouting into the void is accessing the therapy she needs - a full year of fighting with CAMHS before they would even assess her, and while she did get a very good service, we’re one of the lucky ones.

Shouting into the void is trying to get an education placement that in any way meets your child’s needs, finding tutors who can help your child access education in a meaningful way, finding activities that your child can access that don’t cost the earth. Shouting into the void is knowing that you’ll need to fight to get the most minimal care no matter how well you know the system.

I don't care at all what it's spent on.

Yes. The thing is I don’t want it to all stop, but we’ve reach a point where the overcorrection will be severe.

This is laughable. I have 3 children with SEN. I spent 5 hours per day driving one year, because one child attended a special school 20 miles away in one direction, but couldn't cope with full time, so wasn't entitled to transport. Then I had another child attending a college 12 miles in the other direction, who couldn't take the allocated transport, and couldn't cope with the college day. Then a third, who attended a school locally but due to emerging mental illness (which became severe enough to stop her going to school at all), couldn't catch the bus. So my day consisted of 1.5 miles to school A, then 21.5 miles in the opposite direction to school B, then 27 miles in a third direction to College, then 12 miles home. I had an hour at home, then I repeated the whole thing in reverse, unless I'd had a call from college to say DD1 wasn't coping, so changed the route to get her first.

Now, DD1 is almost 20. She can't be left at home alone, can't leave the house without an adult. She has an EOTAS package. She's allowed 10 hours per week mentoring from an alternative provider, 2 hours of online mentoring, and an hour of online counselling. Oh, except the online mentoring/counselling has a waiting list, and the in person provision is having to build up really slowly because she can't cope. So she currently has 2 ½ hour sessions, which I have to be present for. 1 hour per week. Total.

DD2 is 18 and can't cope with her specialist provision due to her ASD & anxiety. She's gradually building up to a half-week timetable.

DD3 is doing well in her specialist provision, but I have to deal with her psychiatrist and other therapy.

If you just want to leave the details of the job you think I can do, I'll take a look.

The provision never changed, the level of need did. Every other person is disabled or ND now.

Child benefit is a benefit, of course it is. It only reduces once a house hold reaches a certain £££. But you don't get it if you don't have kids do you? Additionally, SMP is higher than SSP and lasts for longer. You also get additional support, as you mention.