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.

Fucking hell. That's what you think people should do if they discover their unborn child has a disability? Does a human being not have intrinsic worth unless they are physically perfect?

Keynesianism would argue otherwise. Can we afford not to invest? That has been tried over the last decade and a half and the results have been poor.

I believe that "personal responsibility" is a loaded concept, created to serve the interests of what you might call the dominant class. Ask yourself, who does it serve to promote the individual over the collective? If one person falls, everyone trips over them. Better to work together to keep everyone on their feet than to continue to work to further enrich the already powerful.

I'm afraid I don't understand your last sentence.

Sorry I might not have been clear enough as I wasn’t suggesting we prioritise the individual over the collective.

My point is subtly but importantly different:

1. as individuals, we have responsibilities to ourselves (which I think today’s society forgets, instead expecting others to pickup the responsibility for them)
2. as individuals we have responsibilities to society
3. {as a follow-on from #2) society has a responsibility to individuals

At present, #1 seems to be downplayed, #3 is expected to fill the gap, and #2 is expected to only be carried by those with “the broadest shoulders”

the system is broken

I don’t think people are saying she’s entirely reliant

People have literally said that she is using benefits as a lifestyle choice, despite her explaining the circumstances that led to the current situation, so this is just semantics for me.

I understand your theory, it makes sense. I don't agree with it but that's fine!

I can’t believe all people in Iceland in this situation think like that or that they are being made to abort
Women are given the rights and personal autonomy to make their own choice

You just proved my point.
Your DD1 was under specialist neurodisability pediatrician since very young age. Means there were concerns at a very early age, just not properly diagnosed, but you knew probably before she turned 2 or 2.5 that she had some issues. Not confirmed is ASD/ADHD, but issues.
And ND usually runs in families.

My youngest DC were only officially diagnosed at 11, but I knew there were issues since they were 15 months. They are high functioning, I wanted one more child, but I stopped as soon as I suspected that something might not be entirely mainstream, as I knew that level of support needed might consume everything I'd be able to give. If they were my first child I'd only have one.

Couldn't agree more.

What would you do in the following cases?

1. Roof over head as "personal responsibility" - single working person gets some horrible illness (sepsis or something, loses limbs and goes blind etc) or is involved in an accident by chance, is completely incapacitated. Cannot work. Does not have a partner to support them. Is it still their responsibility to put a roof over head?

2. Caring for loved ones as "personal responsibility" - a person where there is absolutely no indication they will have a disabled child. Turns out child has severe learning disabilities, autistic, doubly incontinent, extreme behaviours, cannot sleep more than a couple of hours a night. This parent has done all the courses, tried all the right things but now her 6ft 16 year old son is smearing his faeces everywhere and hitting her every day, refuses to get in the car to school, cannot physically (or ethically) be dragged. The mother lost her job and no one will "childmind" this young person. He's pulling the curtains down, punching holes in walls, etc etc. How long are the parents personally responsible for the care of their son?

The idea of personal responsibility is so flawed, even in less extreme circumstances.

very well said

Some of the replies on this post scare me! Are we living in the 1930s?!?! It’s gone from a Mum asking for some financial advise, to a debate about eugenics!!

Some of these responses are horrific. Do you truly believe that people are only of value if they are healthy and can earn money!!

I have 3 disabled children and am disabled myself. Let me tell you it’s not easy. I’m able to work, but only certain hours because childcare is almost impossible to find.

The DLA doesn’t go very far, and goes directly to the children to pay for services not available on the NHS such as private OT, physio and counselling.

I think the saddest thing is that women are turning on women in this post. This poor lady didn’t choose to have disabled children, she didn’t choose for her husband to lose his job. She has said she would like to work, but struggles to find childcare.

Not everyone has a nice easy life, with 2 healthy children and 2 good incomes. They get ill, they lose jobs, and they have unexpected pregnancies. Stop judging and start supporting

@elliejjtiny I just eant to say I hope you are OK if you are still reading the thread. 💐

#1 - that’s exactly what critical illness and income protection insurance are for

#2 - well, for the duration of the child’s life. It’s their child after all. Why do you imply there’s a point in time when they stop being responsible? Society should of course provide support but so should their wider family etc.

It's Tories who were giving benefits like sweeties, who led to explosion of benefits culture, and who taxed higher earners to a point of paralysis. Labour just accelerated this.

#2 so many of my community (my two kids have always gone to special schools, very close in age, severely disabled so we tend to predominantly mix with these families) are absolutely fucked then.

Do you really think wider (usually older) family members step in to change a grown man's nappy who might slap and kick you while doing so? Do you really think our families can do this forever? There is a bit of a problem with carers killing themselves (and sometimes their children) when faced with this.

Evidence? The Conservatives severely cut benefits.

And with this discourse, it's very often focused around cute children isn't it? Nobody has much patience or sympathy when that child is an adult and cannot function in society. It's not so cute and adorable then

Fuck me. What an attitude.

Thankfully there are very many people who see adult disabled people as humans deserving of the same love and respect as anyone else. Not puppies who have outgrown the "cute and adorable" stage.

Are you American by any chance?

It will not be possible for me to provide the level of care my son needs for the remainder of his life.

There will reach a point where we are physically unable to meet his needs. We age, just like everyone else, and if his behavioural and care needs are still as high in adulthood as they are now - we will not be able to physically care for him or keep him safe.

We also will not have family available to care for him, as many of them already can’t - he’s 10.

Unfortunately, that will have to fall to the state.

Our plan is for him to be in supported living, or residential of some sort, before we either become unable to care for him, or we’re dead.

Call me sentimental, but I’d like him settled and comfortable somewhere before we reach that point, as I’d like him transitioned before it becomes an emergency.

Same position. I don't think these posters grasp the actual reality of the situation. I have also professionally seen what happens when parents try to continue caring for their children in old age, sometimes it has absolutely disastrous consequences.

Approximately 20 million people receive at least one DWP benefit in the UK, at a total cost of approximately £300 billion per year. So millions of these people will be genuine claimants. Millions of people won't be genuine claimants.

That's approx. 300 billion GBP per year on benefits..

If you think that's normal and acceptable, and that every one of those claimants is genuine - I can't help you.

(DWP estimates benefits fraud and error cost approximately £8.3 billion per year — approximately 2.7% of total benefits expenditure. Fraud accounts for approximately £6.4 billion and official error approximately £1.9 billion. Universal Credit has higher fraud rates than legacy benefits due to the complexity of real-time income assessment. The DWP spends approximately £2 billion per year on counter-fraud activity.

And that's just the fraud they know about).

Her husband has not lost his job, he is working and they will be getting a significant amount of benefits on top and disability benefits on top of that ( as it should be ). This will amount to a considerable amount of money. For many many years they will have been getting even more as they have had five disabled children. With lower housing costs than most i don't understand how they cannot be managing but appreciate Uni costs are significant. It's not as if there is no-one in the household working and they are on the bones of their arses is it ?

Can you share the evidence that led you to conclude that millions of benefit claims aren't genuine? Maybe explain a bit about how so many claimants are able to circumvent the system? Sounds like you've identified some significant loopholes.

No @TheLandlordsAreFrowning . you didn't quote what PP ( @Glowingup ) said here . They said 'Personally, I could not bring someone into the world knowing that they will be vulnerable and in need of care for life. Knowing that I could provide that care maybe for 30-35 years but that then I would be unable to..'

And that is a valid view which you totally bypassed because it didn't suit your narrative. It's a view that many would share.

Do you call benefit scammers 'loopholes'? Nasty.

So what’s your proposed solution?

I’m slightly taken a back that you seem to think that parents can absolve themselves from the responsibilities of looking after their own children just because “it’s too hard”. Of course they can’t. And of course they need help.