Cost of social care. Aibu

[Onlyifyouknewthetruth2026]

My son gets overnight respite 2 nights a month. Not a great amount but still respite. I have attached a pic showing the annual cost which is alot. Just for reference.

Got me thinking about social care and money.
With a aging population and more calls for social care no wonder it's on its knees
Im curious what others think about the cost.

Its not about teaching somone to remember a nursery rhyme
Its about teaching them to be as independent as possible
So they can wash and dreas themselves ,maybe make themself a sandwich or a drink
Some may learn about money so they can go shopping etc

The alternatives are bleak. Residential homes in the past had no social stimulation. My Dsis is a care home manager, they have daily entertainment sessions, therapy sessions.
The dementia ward is hard breaking.
The right to die bill, if passed will see a huge amount of severely disabled people being euthanised. I am not against euthanasia for people who choose to die, I think it is a slippery slope.
A young child died by euthanasia recently.
Children with disabilities need stimulation and education even at a high cost.

Would you be happy with your child receiving basic care and supervision? It’s very easy to say that when it’s someone else’s child, but when it’s your child, and you see the lack of care, lack of ambition that professionals have for children with complex needs it sits very differently.

It’s also sort of remembering that for very many children in specialist therapeutic placements they’ve usually been let down already by services across the board. I remember very clearly pointing out that either they provided support to DD as early intervention, or they would be paying for complex care further down the line as her distress, and the impact of her life experiences hit fully in her teenage years. And that later intervention would be much more expensive financially, and the human cost to her would be intolerable.

We don’t want to pay carers in terms of benefits, we don’t want to pay higher care costs and we don’t want to properly fund social work to meaningfully intervene early to avoid ongoing complex care costs. So what do we actually want.

But this isn’t a question of feelings or deservedness any more, it’s a matter of hard economics. We can’t afford £1 million packages for 5% of the population. You’ve seen the figures involved. The number of disabled children just rises and rises every year.

Frankly we need to work out why there are so many severely autistic children now. Either non verbal and with no danger awareness, or ‘highly anxious’ to the extent they won’t shower or dress themselves.

Something isn’t right. Kids just were not like this 20+ years ago. Of course you got the odd one but it’s so common now.

I don't think bringing that child who died by euthanasia in to it is helpful - they had severe, drug resistant epilepsy which exacerbated already significant brain damage and had no meaningful quality of life prior to the new epileptic episodes. They were not prepared to euthanise the child even at that point until it was evidenced the child was in unrelenting and unmanageable pain. It was the sole case since the act was expanded, and they'd estimated at 5 a year.

Euthanasia is not the answer though.

When the Ukrainian war broke out in February 2022. DS got two new children who had autism into his classroom. They had significant difficulties. I don’t know the ins and outs of the welfare or school system in Ukraine but neither of them had ever been to school. They were kept quiet at home. The government offered places in orphanages.
I am glad that we as a society have more compassion. In fact both of them have improved tenfold since they started in the school.

The vast majority of disabled people aren’t getting £1m packages, they’re having personal budgets cut leaving them housebound , they’re unable to access education because specialist provision has been decimated, they’re reliant on parents caring for them well beyond their capacity to do so.

Childrens services can’t find safe placements for children who are unsafe at home. Yes there’s a financial cost that needs consideration but there’s a very real human cost in cutting services, and those chickens are coming home to roost - as every professional I know predicted they would.

Evidence? Because all evidence I can find is that whilst autism diagnosis has increased, severity has stayed stable and those needing significant care are almost exclusively limited to those with intellectual disabilities.

It is relevant to the discussion I was responding too. It was a very sad situation. There was a disagreement between medical professionals on whether the child’s epilepsy could be controlled with medication. It wasn’t a clear cut situation. They wouldn’t have had a good quality of life though.
There is one gentleman who my Dsis worked with , he suffered a severe injury, he is locked in, because he was physically strong when it happened his heart and brain keep going. He can’t do anything but wait for death. He’s like that ten years.
I don’t know the answer as I am not in that situation.

Evidence of what? Have the million daily posts on anxious teens that bully their parents escaped your attention? Or the fact there were no non verbal autistic children when you were a kid? There are no up to date statistics. Those will take time to come through. But what’s happening is obvious.

Im a support worker who supports someone who needs 3:1 ratio 24 hours a day. The cost for that alone just for staffs hourly rate is over 350k a year. The real figure will be eye watering, its a private company too that will be charging insane amounts. The individual lives in their own property in the community, if they lived in a shared setting with staff on site they would not need the 3:1, they are over cautious as if theres an emergency theres only us to deal with it, not a larger pool of staff. But somewhere along the line it was decided these individuals are better off in their own properties in the community and shared settings are institutionalised. This individual can not "mix" with members of the public, their behaviours are just too high risk so the insane costs continue with no actual benefit to the individual, and disgruntled neighbours who have to listen to absolute chaos at all hours of day! Private companys should not be allowed to profit the amounts they do. The company owner describes themselves on linked in as an "entrepeneur", no experience or background in care, just sets up the company, employs staff who vaguely know what theyre doing and lives a life of luxury off the profits. Its insane!

I don’t think we can blame society
I think the Care Act in 2014 was somehow made into a mess
I know the people behind it weren’t intending that but somehow all governments just made everything into a massive mess

As far as I can tell from speaking to my friends, other countries do manage this better.

I get confused because sometimes they seem upset if he isn’t on track for a milestone or whatever but maybe that’s to do with funding. I don’t know they are constantly in funding meetings. Yet they can’t get funding for the stuff that he actually needs.

There were non-verbal kids when I was young, they were hidden away in special schools and residential homes. There were violent kids who ended up in secure care or young offenders institutions. Just because they weren’t as visible doesn’t mean they didn’t exist.

Of course there were non verbal autistic children in the past. You're just making yourself look stupid coming out with things like that.

Yes. There needs to be something like NICE.

You know there are only 36 children that have million pound placements and the children's commissioner classes them as illegal.

Its not 5% of the population.

Its not even 5% in a special school, let alone high cost placements.

As someone who works in adult social care this cost does not surprise me at all.

When people talk about adult social care a lot of people automatically think of the elderly in care homes. Placements of working age adults make up huge percentage of the overall bill. Services can really charge what they want. when you add in staffing ratios, waking nights, sleeping nights, enabling hours, taxis, day centres it all adds up to huge amounts every week. Some of the care packages are absolutely eye watering.

However, that is what it costs and vulnerable people should not suffer because of the incompetence of government to sort out the sector. But I do worry that it is going to reach breaking point at some point soon especially with the ageing population pressure.

5% do not have £1mil packages.

Therapeutic provision is about far more than recognising nursery rhymes.

Non-verbal DC existed in the past too.

That's why a National Care Service is being suggested...huge multi nationals etc..are bleeding us dry ...this is just one area of billion pound profiteering from the most vulnerable often for rubbish care

Where would this stop? Would there be any point in keeping young people in school until they are 18 knowing that they won't leave with any qualifications? I appreciate there is a jump but like most things especially in regards to cost saving the initial group expands and expands.

If we are going to deny therapy to children in hope they learn some skills which many children do, should we also deny therapy to people following a stroke? How would you decide who is worthy of input and who isn't?

But that’s only for over 65

My friend son is going to be an adult age relatively soon and I don’t think there’s any suggestion of change coming for that age group, I might be wrong

The assisted d bill is about people who have 6 months left to live and a terminal illness. It's nothing to do with disabled people, conflating the 2 means stopping people from dieing without pain.

I thought the National care service was only for the elderly? I've seen quite a few charity posts on sm criticing not including adult care.

The care companies charge the earth & pay staff who do the work peanuts, it's no wonder we don't get a good calibre of carers in some cases.