How can we manage financially as Universal Credit support reduces?

[elliejjtiny]

We have 5 dc aged between 19 and 11 all with disabilities. Dh was a manager up until youngest was born, then he became unwell and had to take a massive pay cut. I'm a Sahm and get carers allowance. We get UC. Dc1 in his first year at uni, dc2 about to start in September.

We are just about managing at the moment but barely. In September we are going to lose the child element of universal credit for dc2 and I'm worried how we are going to manage. When the dc were younger I thought I would be working by now but I'm only getting 4 hours sleep a night and my 11 year old needs constant supervision when not at school so I don't know how I could fit work in. Dh has to work away about 15 weekends a year (from friday morning until late Sunday night) which leaves me completely exhausted each time. We spend 9 weekends a year picking up/dropping off/visiting dc1 and I imagine spending the same amount of time with dc2. There is no childcare for children my dc age with SN and they have to be picked up and dropped off at school. The dc have appointments about once a week on average and dc4 stays in hospital about 1 night a year when I don't get any sleep at all.

Realistically I can't think of any employer who would employ me with the amount of time off I would need and on so little sleep. At the moment I spend the time dc are at school doing the housework, cooking the dinner and trying to catch up on a bit of sleep.

I'm trying to think of anywhere we could save money but I can't think of anything. Dc1 doesn't cost any less money while he is at uni.

Some disabled people want the chance to try. Who in their right mind would tell their disabled child that they should not go to uni because no one will employ them after? What a horrible defeatist attitude.

Hardly worth getting out of bed for working one hour a day. I agree. Laughable.

I'm sorry to hear that. It can be really difficult to get and sometimes genuine people really do miss out, especially as it is such an exhausting process to go through.

If their condition deteriorates in the near future, it is worth trying again if you can.

I'm sorry that you have to go through this.

OP is disabled, is a carer, and is sleep deprived.
Sleep deprivation can be lethal.
She sounds broken. And this thread is full of people taking joy in that and kicking her whilst she is down.

People always mention disability benefits should be for the “sickest in society”.

what does that actually mean?

Or if you go to Uni you can’t need PIP?

I know blind people in uni. Being blind requires a lot of support but doesn’t mean you cannot and should not be given the opportunity to learn.

my ds is a wheelchair user. He can’t just get “any job”. Many aren’t accessible.

He doesn’t just sit on his arse all day claiming benefits (well he doesn’t on his arse being a wheelchair user 🤣🤷‍♀️) but it’s harder for him to get employment.

Does the system need an overhaul. Yes - I think it does. But not to the detriment of disabled people. And it should look at the long term effects of a career break on carers Vs what that actually saves the taxpayer.

Absolute rubbish. It can be hard to get a job but disabled people can and are employed.
And being educated is not a waste of time.

OP are your children prescribed sleep medication? There are options available to aid sleep.

I always think it’s worth noting when a parent of a ND child is discussing poor life choices, that being ND often runs in families. The child with ND and many siblings with disabilities will grow up, become a parent themselves and often make chaotic and poor decisions.

The OP sounds overwhelmed and unable to cope, she just accepted being told her child was not autistic for years and ploughed on having 5 children in 8 years, even with those children’s challenges she didn’t stop to think “what if they don’t outgrow this?” This is exactly the kind of series of events and decisions it’s really common to see from adults who haven’t been diagnosed themselves but clearly are ND.

Can you please let us into to this big disaster waiting to happen?

You say people losing benefits will be the least of their worries?

Why will be we living in a third world country?

How will Reform help? What particular policy will help?

Please give me some facts and figures, I am not able to make the connection between welfare support for big families with disabled children and the coming apocalypse?

I didn’t say people shouldn’t give advice.

Advice to get a job (ideally with suggestions of jobs that might fit around her life) - absolutely fine.

Telling her she shouldn’t have had the children? Pointless and cruel and in no way constitutes “advice”

Well you can’t have disabled people being educated you know. They might possibly end up being better qualified than those that aren’t. Can’t have that.

"however I chose to have them knowing I could afford to provide for them" - given so many of these disabilities are genetic, it's only by chance that your DC2 or 3 weren't more severely disabled. When this happens it becomes very difficult to continue to work.

Your life could have gone differently if, just an example, your DC2 you realised was autistic when they were in school and you'd already had DC3 by then who turned out to be severely disabled. If that happened you might find it practically impossible to work (there is basically no childcare for severely disabled children), reliant on benefits and with 3 kids in expensive special schools with state funded transport.

I wouldn't judge.

If it sounds so great then why isn't every parent crossing their fingers in hopes of a disabled child when they start a family?

Reform will not sort this out. Reform will lead to utopian collapse.

As to the rest of your questions:

• this year welfare bill exceeded all receipts from income tax. Just think about - if you pay income tax, the entire amount goes to support people like OP. NHS, police, education etc are funded by other taxes.
• we pay 111bn annually on servicing debt and this amount increases steadily because markets don't believe in UK stability and demand interest on government borrowing much higher than most other European countries.
• we are at the end of Laffer curve - current taxation and welfare system discourages work at all levels. This means that people who can work stop doing so because taxes are too high and benefits are too generous.

Don't you really understand this??
I'd dare to guess that OP used to take in benefits (still takes) way much more than the average tax paying family after tax.

So they don't have mobility issues? Someone else has driven them to said parking space? Why do they need to be on the doorstep of where they want to go? They are able to walk medium distances? Nope no blue badge needed

Can they not get a coach to uni, usually you just sit on it with no changes to university towns/cities. And they’re really cheap.

Yes, I can't imagine an employer would take you on with that language.

I'm shocked. Really.

She's not worked, chosen to have a huge family, paid for by others... No boss, no professional development, no commute, no work politics, no work stress, Sunday night dread...
Sounds great to me

No pension, no career progression, no proper sleep, no annual leave or sick pay, no respite. That is the reality of someone with disabled children.
Work sounds like a jolly compared to what some parents of disabled kids have to deal with... and they can't just take annual leave and forget about them for a while.

I’m sure it’s been mentioned but would it not be easier for DH to be the SAHP and you work FT?

That way you’ll both be home weekends and you’re going to eventually have to get a job anyway so it’s a good chance to build your career up whilst DH is still healthy enough to help carry the load.

Yes I know all this. The workhouse was around when my parents were born and they have told me stories about it. If you couldn't afford a doctor you didn't get a doctor and you either got better or died.

Nobody said it was a pretty picture. If we can't afford welfare or the NHS which is where we appear to be then what do you suggest. Do you think the bond markets will keeping lending to us. They are already charging us more in interest than Greece and Morocco as they become increasing uncomfortable with the way the country is being run.

They were deemed to be suitable for a Blue Badge by the people who issue them. What you think is irrelevant.

And while I'm at it, my DS has been waiting nearly 3 years for adult social care to arrange an assessment of his needs. I suspect some would not want him to be helped with adaptations,because it might cost money. Although of course it would enhance his life.

She's chosen to have 5 children in a row. All whilst relying on benefits to pay for them...

The fact they are all disabled is a different issue altogether.

The fact that after having 2 disabled children, then 3, she chose to have 4 and 5,all paid for by benefits, is again a totally different issue.

This is v simple. She's chosen to have 5 children with no idea how to pay to raise them. Bar me, you, the old people next door, the single mum working hard, they can pay for this woman's children...