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.

My child has been migrated to the Limited Capacity for Work Group; this is permanent. And this is true for future claimants with the most severe disabilities. Clearly if people are able to work, even part-time, they should - it's good for them for all kinds of reasons; people at my child's supported living home do work and very much want to.

The migration to UC has been a painless process for us. The point I was making is that it isn't a good idea to save up more than £6000 as it will affect benefits claims in the future.
I have worked in SEND for many years and am well aware of the support available, and that it may be patchy in different areas. However, parents should be aware that generally help is available. Many choose to keep their adult children at home and not engage with social care, and in my view that is not good for their child's fulfilling future, whatever their level of difficulty. But my experience has been very positive. That's all I can say.

I am not sure by what you mean, by the system being abused. There is a list of cars, etc, that those in receipt of the higher rate, may choose to lease. What do you mean by ordinary saloons, and vans? What is extraordinary about what is available in the scheme, at present?

Can we just clarify this a bit please. The tax payer doesn’t foot the bill for free theme park passes or free anything else as a result of receiving child DLA. Various charities and disability organisations offer free tickets for children usually aged between around three and eighteen, as do some of the attractions themselves, but there are eligibility conditions to be met. They are usually for children facing serious illness, severe disability or adversity. And in circumstances where a disabled visitor pays entry, their registered carer will be admitted free - places like Chester Zoo and various childrens’ museums offer this facility and there are national disability cards which give the holders discounts and priority access to attractions at various theme parks. Again, nothing to do with the tax payer. So why all the frothing ?

3% of mothers of disabled kids worked FT in 2015, according to the Council for Disabled Children. I can’t imagine that the figure will have gone up much since then. Compared to 60% of mothers of non-disabled children. I suppose in absolute terms 3% is many, but it’s not that many
No that's old data, if you look at more recent data (2024) it's more like 40% giving up work and 33% reducing their hours. Although to be fair I don't really trust either figures. The point is that some mums do manage it, if not FT.

they are not allowed to have more than £6000 in savings.

You can receive UC and have more than £6k in capital. £6k is when it starts to reduce. It is £16k that is the upper limit.

Next November there will be no such thing as the support group on UC.

The changes actually come into effect in April 2026. For new claimants, the health element as they as calling it, will be a reduced amount. This won’t apply to existing claimants, those who meet the SCC, and terminally ill claimants. It isn’t a complete removal of the health element (currently known as LCWRA - support group is the ESA equivalent).

The limited capacity for work related activity group - the support group - is being phased out. All of this is detailed in a green paper which you can find online - l’ll see if I can link to it. There will be no support group as we know it now and the work capability assessment will be phased out - assessment of the ability to work will be incorporated into the PIP assessment under plans currently being drawn up. It’s the intention for even the more severely disabled people to face some level of compulsion to look for work if they are able and those who cannot work will be supported, but the change in the rules is expected to mean that this group will be significantly smaller than the present support group.

A green paper is just that. It isn’t yet legislation. It may not ever be legislation. So no-one can yet say there will be no such thing as the health element/LCWRA element next November. You may think that is what will happen but you do not know for certain. Abolishing the WCA in its current form wasn’t being proposed until 2028.

Whatever benefits them. So if they benefit from having a bigger garden, or a room to themselves (e.g. autism) I think it's fine to go on mortgage/rent.

Broadband if they have to study at home.

Petrol costs if mobility is an issue.

Grocery bill of particular food is needed/preferred.

Hobbies/ socialising etc.

I think it's right that the parents have discretion and there are absolutely cases where the child can benefit from money going into the household pot.

Existing claimants will gradually be assessed for capability for work and the LCWRA group will eventually be much smaller. The work capability assessment is being phased out and assessment of the ability to work is expected to be incorporated into the PIP assessment.

I appreciate that the LCWRA group won’t be completely removed, but it’s my understanding that the aim is for it to be much smaller than it is now, and that only the very most disabled people will qualify. The rest will be expected to engage with job search activities. And yes, I believe the legislation is being introduced in November, for implementation from April next year.

Yes, but that that a) isn’t same at ‘no such thing’ ‘next November’ (although technically it isn’t called the support group now, anyway), and b) other than the changes coming into effect via the UC Act 2025 (which doesn’t include the abolition of the WCA) isn’t actually certain yet.

It's not almost 10k per year for most people though is it?
My son gets the highest rates of both care and mobility, but he has significant and complex disabilities most children won't be on the highest rates.

Can you expand on why you think it’s being abused ? The fact that you think the types of cars available indicates that you have no idea how Motability is financed or run. It wouldn’t exist without the goodwill of the motor industry so it’s really not possible to limit the models available. And beyond the payment of the higher rate mobility allowance which finances the lease period, plus the usual concessions that disabled drivers are afforded regardless of how they finance a vehicle, such as exemption from excise duty and VAT, the taxpayer has no input into Motability - it’s a private enterprise, so how are you going to impose these restrictions ?

And for reasons of disability it’s not a good idea either. Some people need bigger cars because they have to incorporate wheelchair lifts or ramps - these are paid for at their own expense, or by grant from Motability in specific circumstances. Some people can’t get into and out of saloon cars because they are too low, so would need what some people would term to be higher end vehicles . And some people can only drive from a wheelchair so require major adaptations and larger vehicles. It makes no sense whatsoever to have a scheme designed to keep disabled people mobile and then effectively exclude some because there are no suitable vehicles available.

Most disabled people choose from a range of cars available with no or very low advance payments - luxury cars are available but they’re not mainstream because most disabled people can’t afford them, and for most the age and model isn’t important beyond being suitable for their needs - it’s staying mobile that’s the most important thing.

If you’re going to means test PIP and DLA, where are you going to put the threshold. They are universal because disability is universal, and can be ruinously expensive to live with, no matter what level of income you have. Means testing is a race to the bottom. Not only would it make these benefits significantly more costly and complicated to administer, it would also mean many people missing out on the support they need for the sake of being a few pounds over the threshold. How do you tell someone with significant disability that they can’t have support until they’ve drained their bank account, while someone else with the same level of need is fully supported ?

I’m not naive. I’ve worked as a benefit assessor. (Not PIP/DLA) People disclose a lot of information that they don’t want anyone else to know. I also know that all claims have to be evidenced

Can you share the source? Genuinely interested.

I know some do it - I work FT - but I can also very, very easily see why it would tip into not possible. LA support for wrap around care where I live is non-existent, for instance. We completely rely on grandparents for out of term time childcare as there are literally no other options. Normal childhood illnesses have put my child in hospital more than once. At one point we were under 8 different hospital specialties - that’s a lot of time off work for appointments and emergencies. I’m senior, have a lot of autonomy, a brilliant boss and a genuinely hands on partner/co-parent and it still feels quite precarious at times.

Raising a child with disabilities is significantly more expensive and most families will also have a reduced income.

I mentioned November because that’s when the legislation is being put forward for implementation next April. And you can quibble as much as you like about the wording used, it doesn’t change the fact that if these plans are passed into legislation there will effectively be a huge reduction in LCWRA (forgive me if you don’t like me referring to it as the support group, but that’s how I knew it during my working life - it was for ease of reference) with much more compulsion to engage with job search placed on the more severely disabled claimants who are assessed as capable of some work, and who were previously exempted.

The stated intention is that the LCWRA will be much smaller than it is now and will consist of those disabled claimants who are assessed as not being capable of any work. And at no point did I say that the WCA would be abolished next year. I said the current plans mean that it will be phased out and incorporated into the PIP assessment.

You’ve covered pretty much everything I was coming on to say. It’s really only feasible where mum has lots of support from various sources, and as you’ve so eloquently described here, even when those things come together you feel as though it’s akin to a pack of cards and it wouldn’t take very much to bring it all crashing down.

The legislation for the changes coming into effect in April 2026 has already passed. The Universal Credit Act 2025. It isn’t being ‘put forward’ this November or next November.

The White Paper with other proposals, that may or may not be passed as legislation at some point, is expected this autumn.

work capability assessment will be phased out

Now who is quibbling about the wording used. Phasing out is another way of saying abolition of the WCA.

Most of my adult son's Pip goes on a council day care centre for autistic people that he goes to once a week that is run by the National Autistic Society, he has learnt lots of video editing skills there. He has two university degrees but he has very poor speech. He would love to work but try getting someone a job who has trouble communicating normally, it's hard enough when you don't have that problem. He does voluntary work for a charity. It would be nice if he could get paid.

Instead of paying these parents DLA and PIP for them to squander on fripperies, we should put all these pesky disabled people into institutions. That would stop these parents getting their £83.30 Carers Allowance too, off those angelic taxpayers.

I'm totally sure paying full time qualified carers and funding places for all the disabled wouldn't be begrudged by the tax payers when they get a massive rise in their taxes, and they wouldn't then complain about parents dumping their kids on the state and expecting them to pay for it.

In reality children with disabilities are more likely to be off school more often due to illness, their disability, appointments etc and parents may also have to attend school to assist with the child in a regular basis, attend meetings etc. These things all negatively affect a parents ability to stay in employment.

Oh yes the appointments.

My kids went on bananas at one stage. (And other specific food)

Replacing stuff that's broken/lost.

Extra uniform. Clothing that meets sensory needs.

School lunches when pack ups were refused.

Transport.

After school activities to improve health/emotions/regulation.

Washing. Lots of washing.

I couldn't have worked due to the support they needed. Many appointments during school hours. After school care not suitable. Being unable to take them to the supermarket safely and regular food requirements. (No other parent available) The additional work they needed that couldn't be done while they needed extra supervision. The sleepless nights awake with them.

I used to work in a school for children with disabilities. We had children who would be in school for a week then in hospital for a month or so. These be back at school but would get sent home early as their condition meant that needed more medical support than a school could offer. Back into hospital and ITU for a week or so before coming back to school again. Those parents had to give up their jobs as their employers were unable to manage with the amount of time they were needed to be at the hospital or at home caring for their disabled child. Some of these families have more than one disabled child. One family was told it definitely wasn’t genetic so they went on to have another child with the same disability and then found it was genetic.

Just because the state should legally provide a school for a child it doesn’t meant that the
can actually attend full time. Some schools aren’t suitable. Some children can’t cope with school. Some children become excluded. Some families get into a specialist provision that can meet needs but the LA won’t pay transport because they wanted the child to attend a closer school that actually couldn’t meet need. Oh and there are children sitting in taxis for up to 2 hours some days to get to and from school or even having their parents drive them to these schools.

Since this has become a thread about the feckless shirkers, I'd love someone to square this circle:

www.ons.gov.uk/employmentandlabourmarket/peopleinwork/employmentandemployeetypes/bulletins/jobsandvacanciesintheuk/latest

"The estimated number of vacancies in the UK fell by 9,000 (1.3%) on the quarter, to 717,000 in July to September 2025.

This is the 39th consecutive period where vacancy numbers have dropped compared with the previous three months, with vacancies decreasing in half of the 18 industry sectors.

Total estimated vacancies were down by 115,000 (13.8%) in July to September 2025 from the level of a year ago, and are 78,000 (9.8%) below their pre-coronavirus (COVID-19) January to March 2020 level.

The number of unemployed people per vacancy was 2.4 in June to August 2025; this is up from 2.3 in the previous quarter (March to May 2025)."

So, there are almost 10% less jobs than pre-Covid level, and for every job available, there are 2.5 unemployed people. For the avoidance of doubt, the ONS definition of unemployed is:

"Unemployed people are without a job, have actively sought work in the last four weeks and are available to start work in the next two weeks; or are out of work, have found a job and are waiting to start it in the next two weeks."

So, not those who are claiming that they are too sick to work.

https://www.benefitsandwork.co.uk/news/latest-esa-and-uc-wca-statistics

1.49 million people had LCWRA in June 2024.

So, we have 717,000 jobs, 1.7 million people who need them, plus 1.49 million people who are currently deemed unfit for work, but will magically be deemed fit for work once the line in the sand has been redrawn.

However you cut it, 2.5 million people simply won't have a job because there isn't a job to be had. The vast majority of the jobs available will be low paid, manual jobs, requiring physical fitness and mental agility. Care work, cleaning, bar work, entry level admin, telesales.

Hands up who thinks that one of those 1.49 million people who are currently deemed unfit for work are going to be chosen over the 1.7 million 'fit for and seeking work' people without a job? None. Nada.

A fridge is an essential item of household kit. Food safety would be essential plus insulin and other medicines can be kept in it.

The only thing I have to say all to all those who begrudge a theme park trip / any treats etc

is right now you might not be experiencing the throught of when you out your precious little ones to bed that time is limited. You might not spend every day hoping and praying for a cure so you know your child will have a future.

you may be able to work full time, not worry about packing a suitcase of medical supplies for one day at a theme park or trying to find a a balance between the scary feeling of doom vs living life.

the thing is you might not be experiencing that right now but tomorrow is a new day … no one knows what the future might hold. No one knows what your life in 5 years will look like and whether you might be a parent then not able to sleep through worry you will outlive your child, holding their hands through the most painful procedures and trying to help their body recover any way which you can.
balancing then having a semi normal childhood knowing it’s far from normal.

listening and reading people begrudging you one day of fun, one day of normality or a session at something that helps their issues. Life as you know it right this second will always be just that second because in a flash everything can change.

you can go from that tax payer to the one who is signing the form for help and you 2 would swap that 500 something pound of money a month for a cure to end your child’s suffering.