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.

Can you post them again as I must have missed them.

I'd always support an individual woman's right to an abortion, but a goal of 100% abortion rate for foetuses with Down Syndrome is not just "harping on about eugenics", it is literally eugenics. If people feel this way or think that should be the goal, they should be comfortable with being called eugenicists.

Okay then by that definition, I am a eugenicist but I’d argue I am motivated by how badly people with disabilities are treated in society and how selfish people generally are.

I wanted to know what you were trying to say about Down syndrome. Do you think abortion is the best option? (That is a new question, apologies.)

But the answer is surely to improve the rights of disabled people and embed them in law to mitigate selfishness. Not practice eugenics.

It’s an incredibly high rate so I looked up why

’ In Denmark, nearly 98% of pregnancies that receive a prenatal Down syndrome diagnosis are terminated. This exceptionally high rate is driven by a combination of Denmark's universal healthcare structure, cultural values, and the way medical professionals counsel pregnant women. 1, 2, 3]
Key factors driving this trend include:
Universal Prenatal Screening: Denmark was one of the first countries to offer free prenatal screening for Down syndrome to all pregnant women, regardless of age. Early and widespread testing naturally catches nearly all chromosomal abnormalities.
Medical Counseling: Danish medical professionals provide highly realistic, and often clinical, prognoses about the physical and intellectual challenges a child with Down syndrome will face. Doctors generally present termination as a valid and accepted healthcare option, rather than treating it as taboo.
Individual Autonomy: Danish society places a fierce emphasis on individual independence and personal choice. Culturally, women are trusted to make the best decisions for their own lives and existing families, and the decision to terminate is widely accepted without social stigma or religious judgment.
Fear of Burden: Many parents fear the long-term impact raising a disabled child will have on their marriage, their finances, and the lives of their existing children. 1, 2, 3, 4, 5, 6, 7]

While the termination rate remains high, advocacy groups like Landsforeningen Downs Syndrom note that an increasing number of parents are choosing to keep their pregnancies as more nuanced information about the independent lives of people with Down syndrome becomes available. 1]’

Yes, I do.

Although bravo, I guess, for publicly owning your status as a eugenicist? It's not everyone who would be prepared to admit that!

What does that do for diversity, acceptance, tolerance? I don't suppose there's much point asking you whether you think the lives of people with Down syndrome are less valuable than others because clearly you do.

Well it’s entirely dependent on your definition of eugenics isn’t it? I don’t believe in racial hierarchies or euthanising disabled people which a lot of people associate with it. I do believe that for very severe disabilities where the child will be unable to take part in society in any meaningful way and will need constant care then termination is the best option. Some people disagree which is fine.

The definition of eugenics is not subjective. There is no "good" eugenics. It's a discredited theory, rooted in racism, classism and ableism. Either you agree with that or you don't. There are no degrees.

To be fair to you, I don't think you are a eugenicist at all. I think perhaps you don't have.a lot of experience or knowledge of disability and maybe it makes you uncomfortable. Those are my assumptions but frankly they're preferable to you agreeing with the debunked theory that nonetheless led to human rights abuse and genocide.

It's not me, it's wider society and pretending otherwise helps nobody. 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 this vulnerable person would then be at the mercy of a society that absolutely values their life less than those of able-bodied people. I would absolutely put my own desire to have a child at the bottom of the list in weighing up my options. If I had existing children at the time, I would also be unable to burden them with a disabled sibling that they might need to care for for life.

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.

No you're not. You see people with disabilities, who can't contribute to society as less than.

You know, life has a way of hoofing us in the nads. If one day you rely on someone wiping your arse, you might think differently.

There is a presenter of CBeebies with Down Syndrome. Most people with Down Syndrome live full and meaningful lives. Some get married, some have jobs, many have very active social lives.

🤨

a factual piece I posted, without opinion , on Denmark’s abortion rates has been deleted
Ive asked mnhq why
I will repost unless mnhq now respond that they have a problem with posting facts from online portals

The answer is still to advocate for disabled rights rather than for there to be fewer disabled people. Your argument is fundamentally flawed purely because most of us will experience disability at some point in our lives. You can't argue that it's preventable, or something that happens to other people and that the answer is to try to eliminate disability. Added to this, your comments are cruel to those who do have disabled children. There is really no need to say these kinds of thing.
I think the problem, and the reason you and I will never agree, is that you openly describe disabled people as a burden (your words) and say it would be better if they didn't exist. I could never accept that.

I believe it is 80% here so still the majority with a prenatal diagnosis.

Okay, fair enough. We don't need to disagree on everything and maybe my position is motivated by my own lack of knowledge/experience.

Exactly!!!
Ironically, Tory were very socialists in their approach to taxation and welfare.
Labour had (still have) majority to change but they won't, so people will go to Reform. And Reform will make it in a really ugly way.

When you say millions of feckless, who do you mean? Specifically?

Because between 250000 and 300000 families in the Uk fit the description, 3 or more children with no adults working in the household. That's not millions is it?

Just keep in mind that not all children are born disabled, my son became disabled literally overnight when he was 8. I never thought it would happen to my child but it did. No parent is immune to the risk of having a disabled child.

Which is a reason why advocating for disability rights are so important instead of just believing there should be less disabled people as it isn't always a choice. Disability can happen to anyone of us or our child at any time and life can change in an instant.

I would not have described the Conservatives as very socialist! Do you want to expand on that so I can understand what you mean!

I can imagine all those great things*, what I can’t imagine though is the money required to fund them. It needs to be real money, real hard cash from other folk in the country, not just imaginary money I’m afraid. And the country currently operates at a deficit. So whether we like it or not, we can’t afford everything we want. It’s that simple.

*albeit, I do think that:

1. it would never end up being “universal” - those earning over a set amount would be excluded as a result of the usual narrative of “those with broadest shoulders should pay more and for everyone else” but not get anything in return
2. there is too much onus put on the state (ie other folk) for what should be personal responsibilities. Roof over head? Personal responsibility - why would someone else be expected to provide that? Caring for loved ones? Personal responsibility - why would someone else be expected to provide that. We a much less self reliant (or more correctly, selfish) society which is hurting us all as a whole

Yes, of course, I do know that. I am talking about people who deliberately make the choice to bring a child into the world, knowing they will be disabled, sometimes very severely so. Not situations where a child becomes disabled or there was no way of knowing they would be.

One of your reasons though is due to the attitude of disability in society. That can be changed instead of just saying that less disabled people need to be born because those attitudes are negative for those who later become disabled too.

No one can look at my son in his wheelchair and tell that he became disabled 2 years ago rather than at birth. That's my point.