Does this Universal Credit amount sound wrong?

[FryingPanWithJam]

Total amount in UC is £2421.40 a month

Income is £1950 a month, Partner. I’m unemployed as a carer, I get carers allowance

Two kids on higher rates of DLA

Rent is £930

I really, really worry about being overpaid! I wasn’t even aware I could claim it until someone mentioned it at a support group. I am really shocked

Op I truly sympathise, raising disabled DC must be extremely tough and you wouldn’t catch me saying you should be working on top of everything else you have to do. I believe you should be entitled to benefits, to enable you to live reasonably and in line with the rest of the country. But I think 50k+ in benefits is massively unsustainable given we have skyrocketing rates of the elderly, diagnoses in small children, parent carers and high level NHS users. It just isn’t affordable and the worry there is that the system won’t work for long, eventually they’ll be forced to reduce the payments or reduce the claimants and neither will be pretty. And a working person who takes home a third of that will understandably be dismayed they have less to spend on their own family because they’re giving it to others to spend on theirs. It is not selfish to prioritise your own family no matter who you are.

If the state can’t afford the benefits currently paid to families with disabled DC, it can’t afford to cut benefits to unpaid parent carers of severely disabled DC because that would lead to a higher cost to the state.

You could pay 2 full time carers for less than the UC here so I disagree.

You wouldn’t catch anyone saying that because the simple facts are it isn’t possible.

My 2 children get some respite care but we’ve had 5, yes 5, different carers quit within the space of a week over about a year. In addition to that, they both need 2-1 support in public, to access public areas. Of course, when it’s just me, this is just done by me or me and my partner. But professionals obviously won’t risk it. They both need 2-1 care. There is no option to work for me. That is simply because I cannot get any time of childcare. Before all of that, I survive every day, mostly, on about 3 hours sleep max.

A working person without disabled children like this can work. They can study, if they chose to alongside. They can put money into a retirement account and at least look forward to some sort of retirement.

I am degree educated. I can’t work, and unless mine are in full time care, I never will unless a huge overhaul happens to the care system.

You need to realise that those without this set up have options available I simply don’t have.

My options are continue as I am or put my children into care.

Ask yourself how much your ability to be free without holding someone’s hand or pushing a heavy disability device, knowing at any moment they could remove the flesh from your arms or bruise you yet again? Ask yourself this - How much would I exchange so the sentence ‘I wouldn’t mind if my child dies before me. At least I’ll know they’re safe’ is worth to you too.

The statistics for sexual, emotional, physical and financial abuse of non verbal disabled people would bring tears to most people’s eyes. Can you imagine how terrifying that is to live with as a parent?

But above all else, you’re imaging all of this as ‘extra spends’. Almost every penny goes on disability related items, resources, bills or support.

@Blueybanditbingochilli

'You could pay 2 full time carers for less than the UC here so I disagree'

Erm... no you couldn't.

Even if those staff were on minimum wage only doing part days, the company providing the care would still need to pay their share of the NI and pension,plus supplies of PPE, mileage claims for any car use etc oh plus profit for these companies. They don't do it out the goodness of their hearts.

More than 2 full time carers are needed in order to provide full-time care to a severely disabled child. Then there are the children who need 2:1 or 3:1 where even more are needed. And the children where your average carer is unsuitable and if it isn’t the (trained) parents caring for them you would need a nurse. Then there’s the equipment and resources that are necessary. And the increase, sometimes astronomical increase, in utility bills/fuel, etc. And the increase in housing costs. I could go on. It isn’t ’just’ the cost carers.

Caring for severely disabled DC goes beyond a “basic standard expected from parents” which is why the law recognises disabled children and children in need and them and their parents are entitled to certain things under the Children Act 1989, The Chronically Sick and Disabled Persons Act 1970 and the Children and Families Act 2014.

If you forced parents of disabled DC to seek employment either via reducing financial support or removing the exemption from seeking employment the cost to the state of providing support under the legislation, I mention would increase because more parents would pursue and enforce their and their child’s legal rights.

More parents would likely pursue residential placements, too. Resulting in higher EHCP costs. This costly at least £100k pa. Often far more. It isn’t uncommon for full residential placements to be upwards of £300k pa.

More parents are also likely to take up the free 15 hours childcare for disabled DC. With more DC in nursery earlier, there would be an increase in demand for EHCPs earlier and there would be an increase in demand for early years inclusion funding and therefore an increase in costs.

More families are likely to pursue children’s continuing care funding sooner than they currently do.

You also risk an increase in the incidence of carer burnout, which would cost the state both in terms of care for the disabled child and also in treatment (and sometimes inpatient care) for the parent carer in burnout.

You could pay 2 full time carers for less than the UC here so I disagree

Full time, so let’s say 38 hours a week?

£26 per hour (probably more) X 38 = £988

£988 x 4 is a total of just shy of £4K.

That is just what’s paid to the carer though. I haven’t factored in what would be paid to the company employing them.

Op, gently I don’t think you understand what the world of work is like and how most working people live. Most people live on half of the UC you are due to receive and pay for childcare, commuting costs, prescriptions, rent/mortgage, plus their own kids expenses. There’s very little to ‘put into a retirement fund’ for most people and of course everyone can’t ’get a better paid job’ as that’s literally not how an economy works - it relies on people earning A spectrum of wages.

I really feel for you in terms of what you’re going through but this is an economic argument, not a moral one. If money was infinite, I would have zero issue with any amount you receive. But it is very much finite and there are many people with varying levels of need now. 75k on one family isn’t sustainable given there are sadly many families in your position, and a terrifyingly small number of taxpayers. I’ll leave it there but the issue is becoming so pressing it’s only a matter of time before people will have to discuss it.

In most countries around the world the idea that the 'Big State' must step in and pickup these extortionate bills for disabled children would be absolutely unheard of. It's a relatively new concept in the countries where it does exist and has never been properly stressed tested as it will be in the coming decades with more and more people being diagnosed as disabled and the general population getting older, sicker and poorer. Demands for the State to spend millions of pounds on individual's care will increase and it will become more and more difficult to fund this, especially in a way that is acceptable to the general public. It is vital to remember that we live in a democracy and the welfare state and all it's provision exist due to public consent.

We need to think hard and long about responsibility and how this works. We need to be realistic and we need to communicate this to the population. We all roll the dice when we have children and risk having disabled children that need lifelong care. If the state can't or won't pickup the costs of this then it will fall back to the parents and family. The idea that the state must do anything is fundamentally erroneous.

I can see what you’re saying but again, you are not making sense because the alternative is thousands, millions more. The breakdown of just 38 hours a week, 2-1 care for both children is around £4000. Residential is around £90K-£300K a year. Per child. In some cases that’s over half a Million. A year.

You cannot just look at those figures without perspective of what they represent. And what they prevent

@Bumpitybumper The alternative, again, is far more expensive. Eye wateringly so. You cannot live in a decent, functioning society and expect these parents to never sleep, in some cases at all, and keep those children safe. Keep them happy and well.

Come on now, the UK already has a dire social care system. There isn’t enough paid carers.

It is an uncivilised society that would accept disabled DC dying due to a lack of care.

Me too!

Most people live on half of the UC you are

Most people don’t have 2 severely disabled DC.

OP will also pay for prescriptions. That is, unless she is exempt for a non-income related reason - if that applied to the OP, she would still be exempt even if she worked

No but they have mortgages, childcare, commuting costs, and expenses of their own. And have to do this on half that amount. Our local council is on the verge of bankruptcy due to social care - they’ve boarded up the bins, footpaths are impassable due to overgrowth, rubbish everywhere. We’re slowly turning into an economy that exists solely to support people who need social care. Labour have had to make a statement saying we are terrifying skint and brace yourself for more tax rises. Working people just don’t want to do it any more.

Disabled households can also have all of those costs. The cost of disability is extra. Scope’s research states the average disabled household has extra costs of £975 per month. That is on top of disability benefits such as DLA or PIP. And on top of typical household costs. This figure is potentially much more for households with 2 severely disabled DC.

I read an article in the Guardian that said something like 20% of 15 year olds are now classed as disabled and on disability benefits for conditions such as autism and adhd. I really can't comprehend how the country can pay for this going forwards. I have huge sympathy for op but think this level of benefits will have to come down. The figures quoted don't even include the actual DLA money which is paid separately and would be another potentially £1400 a month. It is of course very difficult now for any government to reduce benefits or take them away .

Hopefully it would never come to this but my point is that there seems to be an assumption that someone that is caring for their disabled DC is doing the State a favour and therefore should be paid multiples of a FT salary because that's a relative bargain to the cost of an expensive placement. This is hugely radical And massively digresses from how the vast majority of the world would view a situation like this.

@Miley1967 Most people now diagnosed with Autism and ADHD don’t have the mental age of a baby, non verbal smearing bowel contents everywhere, needing 2-1 care. That just isn’t relevant in terms of the financial support I get for my own children because nobody without those things gets that amount.

I have what was Asperger’s. You probably wouldn’t know unless I said so. I have never had DLA (don’t need it), and I have a degree.

OP.

Don't bother wasting your time trying to justify yourself to strangers. Very few people (luckily not me) will understand how much attention and help your children need.

You probably have precious little 'me time' don't spend it here (this thread not MN in general). All the best.

https://www.theguardian.com/society/article/2024/aug/17/children-disability-benefits-england-and-wales-resolution-foundation

It’s terrifying, what on earth is driving this rise?

The article I read said 20% of 15 year old were in receipt of disability benefits. yes of course they aren't all going to be as disabled as you describe, so maybe not be awarded highest rates but it is still an enormous number to be claiming DLA.

Sorry I was wrong 8%, but still significant. Nots sure whether that is just for conditions like adhd & autism and doesn't include other disabilities.

That’s because the majority of the world, to one extent or another, still sees disabled people as a underclass. That isn’t something to aspire to.

Unpaid carers do save the state a fortune. Not just in relation to residential placements. It is short-sighted to think otherwise.

Every time isn't it

Looks right to me op, it's renting and your higher rate for having 2 children with disabilities that makes it so high