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.

In addition I have also seen people spend their child’s DLA / PIP in the wrong way ( although am I then being judgey ) the young adult getting something silly like £50 a month whilst the parents are financially comfortable, a parent driving a motability car but refusing to take their young people places etc .

I don’t think people are very specific re what it should be spent on but yes it’s slightly galling to be told the cost of disability is so high they need £700 a month, only to then spend it on new furniture and tech totally unrelated to the disability

DLA / PIP is a payment that can be put into the family coffers. That money can then be spent on anything that’s needed to improve the life of the recipient and may also improve the lives of the rest of the family.
EG: disabled person needs higher heating at home so the family increase the temperature on the thermostat - of course everyone in the house ends up with a warmer home!

I find it absolutely wild how people get SO upset about personal circumstances they know nothing about. I saw a lady on Tik Tok laying it on about how you wouldn't use DLA in the general family money pot and completely laying into those that do, like me. My hours are drastically reduced to support DS. He can't attend wrap around care, and has god knows how many appointments all the ruddy time. The DLA money helps towards the shortfall in my income and ensures I can be there for him.

Do people with disabilities not need furniture or tech the same as those without a disability?

People without disabled children dont really get it

Yes but DLA isn’t a replacement for earnings, from which one pays for tech and nice things themselves. It’s supposed to be for the cost of disability. If that cost isn’t there then why are we paying it?

The extra expenses for having a disabled DC.
It could be useful for non existing public health services, SLT, OT, psychologist, depending on the disability.

We are a high income household and get middle rate DLA and low rate mobility for our son. It just gets pooled we don’t spend it on anything specific, but I suppose the kinds of costs we’ve had above what others would are pertaining to paying for childcare longer than most people would, commuting to the right school for him, expensive extra curriculars that support his self esteem which in turn has enabled him to do better in school. He’ll need tutoring. I’m sure lots of people wouldn’t like us getting it if they knew our income, but it’s not means tested, we applied mostly to be able to say he was entitled to it as means of explaining the severity of his disability which isn’t outwardly obvious, I was told his DLA award could unlock further support (although I can’t say that’s happened yet).

I always feel really guilty listing the places he’s been abroad on the form, makes us feel like imposters!

The OP also said she spent money on hiring a skip.

People weren’t just responding to her replacing her fridge.

I’m sure lots of people wouldn’t like us getting it if they knew our income, but it’s not means tested, we applied mostly to be able to say he was entitled to it as means of explaining the severity of his disability which isn’t outwardly obvious

Right.

people with PIP can’t often earn as much as they would have been able without the disability

so they get to spend it as they choose in a way that helps their lives become as normal and happy and productive as other lives

when money is very tight - which it is in most disabled families - the fridge becomes a priority over the cleaner or a taxi to a beauty spot then that’s just helping them achieve a normality that they probably would have had without the disability

It’s for the needs of the disabled individual.

Families of those individuals cannot usually work like those who don’t care can. Therefore they are limited to what they have or what they can buy . The disability impacts the families ability to provide for their basic needs - let alone extra - so, surely the money from DLA being used to make up for that shortfall is benefitting the individual?

As a taxpayer who paid over £60k in income tax I am so glad these claims are going to be reassessed following the next budget. Disagree with disability claims for neurodiversity. Some children are most expensive to raise than others. That’s what you sign up to when you become a parent. My ND child costs me thousands more than my NT child. That’s just parenthood. No need for the state to bail you out.

I spent £10 of my UC on lunch out with my friends last week. I’m sure lots of people would criticise that and say that it should be spent on food for my children only because people receiving benefits shouldn’t have treats. Just ignoring the fact that 90% of my salary goes on things either for the children or directly benefit the children.

Income from whatever source should be spent on whatever the family can benefit from.

I agree with you, I have a 15 year old who gets DLA, it pays for clothes because she will destroy hers for various reasons or because we get through so many clothes because she will say ok to them (shoes for example) and then say after 5 mins they feel funny..., food and heating because she's home all day doing online school, extra washing, her very long showers as she has very little concept of time, broken stuff when she was having meltdowns and breaking everything....it subsidises my income because I have to be part time, funds her special interests, travel to appointments, various support I need in the form of courses to support her. Activities that she needs to do for her mental health, headphones to help her be around people, some savings for her in a trust fund as if she ever goes to college or gets a job, I can't see her taking the bus, it might have to be taxis and I've no idea where we will get the money for that.

But to some people, we are benefit scroungers and there's no good thing to spend it on. Unless your child is in a wheelchair and you're spending every penny on visible aids then it's seen as wrongly spent, from what I see on social media etc.

I'm so scared of applying for pip for her. If she doesn't get it I'll have to go back to work full time and then I'll be the one off work with shit mental health because I cannot manage the demands of being a parent to two ND children and a full time teaching job as well as being a single parent, plus my daughter will basically be alone for 10 hours a day 5 days a week and she would probably go downhill.

If she would let me, I'd spend it on a personal assistant to take her places, therapy sessions, and physio. But she's not able to do those things yet.

Yep, money isn’t a huge concern for us. And his disability is notoriously overlooked, a DLA award creates a shared language. He wouldn’t have been awarded it if he wasn’t entitled.

For our family it is mostly used for private therapies (eg OT, physio, SALT and counselling) that are needed immediately but the nhs waits are months or years. The rest goes on expensive foods due to ARFID.

I find it hard that a family who is clearly quite wealthy is claiming DLA for a child whose disability isn’t severe enough to be apparent to most others, I will admit. I appreciate that’s a ‘harsh’ comment but you seemed willing to share your circumstances.

But maybe the reason she could afford the skip is because she now has money for her child’s needs that previously she was paying out of her pocket ?

When my child first got DLA I was a struggling single mother. I couldn’t work. I had a tiny per week budget for shopping and nappies. My child went through clothes like they were disposable , I struggled to take him shopping so I was getting things from the corner shop that was expensive. I couldn’t decorate his room ro replace the things he broke in meltdowns.

When we got DLA , I could get taxis to go shopping , I could decorate his room, we could get nicer food - outwardly it may have looked like we were raking it in because of the changes but it was because I had more money to help with those things - replace his clothes , make his room more suitable , things I had been having to cover myself beforehand ,

Given that the majority of those receiving DLA can’t work or do typical things the way others can, I think it being there to bump up the household income in any way necessary is fine. Same for PIP.

My children get DLA and it just goes in the family pot with no specific purpose in mind. However, DH and I also pay our salaries in to that family pot and out of it comes the expense for educational psychologists, sensory OT, SALT, play therapists, equine therapy and horse riding, swimming, talking for drawing therapy, as well as all the additional daily costs incurred for disabled children. I can’t work full time and my children aren’t accepted at wraparound or holiday care.

I suspect that there are some months when my entire DLA for a child has gone on the travel expenses just for medical appointments before anything else.

I would extend this to " People without disabilities don't really get it." I might add, some try, and aren't judgemental and unkind.

Or if you had not applied for it.

Just because it’s not severe enough to be apparent does not mean it’s not “enough” to be awarded. The child is entitled so of course he should have it. Sometimes having the DLA award can be a recognition of the condition that in itself can open doors

If someone is disabled enough they qualify then I assume there’s costs associated with that - whether that’s heating, travel, toys, paying for carers, or just towards parent’s loss of income. So I expect the DLA to go towards whatever the young person or their carer finds those extra costs are. I have a child with a disability- they wouldn’t qualify for DLA and they still cost me more than a typical child (particular foods, they’re rough on clothing etc etc) so I imagine a child with higher needs would only cost more.

Fancy being jealous of a disabled child and their family. Does anyone really sit there thinking they wish their own child was disabled so they too could have some money towards a TV or a motability car?! Or are they just focused on the money and forget the disability bit…