To think this is a shocking waste of taxpayer’s money??

[Ticklyoctopus]

https://www.bbc.co.uk/news/articles/c9v12dwddmwo.amp

Not the boy having some form of placement or help of course, but 300k for a little over 4 months! I’m sure this will be ‘controversial’ but I think we need to seriously rethink how much can be spent on just 1 person, unless (for example) they need round the clock nursing care to stay alive and specialist medical equipment of course.

I really wouldn’t want to go down this route as I know people with disabilities that would’ve been obvious on the scan who work (Downs, spinal problems) and a LOT of children who were born ‘healthy’ but just failed to develop, never spoke, eventually became violent, never sleep - their parents lives are actually hell. Whereas my friend who has a child with Downs has a lovely family life and he’s a very sweet, gentle, bright little lad who can speak and integrate to school/nursery routines.

"This was the early 2000s, there were no institutions. We had plenty of disabled children in the community, just not this profile of poo smearing, non verbalism and violence we see time and time again now"

Yes there were children with those type of needs. You wouldn't have known unless you knew them well and people were probably less likely to tell others about the full difficulties. I think most of my local community and extended family don't know the full extent of my son's needs.

Ok well it’s a blunt instrument but they were never mentioned on here until fairly recently. If you backsearch ‘non verbal’ on here, 95% of the posts are from 2018 onwards.

I understand it is not as straightforward at that.

However surely we can have really good doctors who themselves are regulated. Then if two of them decide the person is better off 'being put out of their misery' then that is the consent. The impaired person does not give it or the tiny disabled baby.

I cared for someone with dementia. They could not find their way home (had lived there for 20 years), thought a plumber was their son, thought carers were breaking into their house in the night to steal their underwear, couldn't microwave a basic meal or work the tv remote. They soiled themselves regularly but couldn't get out of bed quick enough to get to the toilet. They were distressed and frightened. At this point two kind doctors who agreed it was for the best to put the relative to sleep in a compassionate and kind environment would have been best all round. The relatives suffering and distress would be at and end. The huge cost to the state would be at and end.

Now apply the same to severely disabled people. Their suffering is brought to an end and the state does not bankrupt itself providing a very limited quality of life in exchange for hundreds of thousands of pounds. If the child is suffering, the parents are suffering, the state is suffering and quality of life is very poor then why are we keeping them alive? Because we are not brave enough to make the decision?

I do wonder what will happen to these old people and disabled children when the country finally goes (financially) kaput. it does not seem that far away with what is going on just now with the budget/RR/KS.

"If you are a good parent and all the things for your child are paid for rather than the money paid to you then you will not mind. The child is provided for just no cash changed hands."

I'm an excellent parent and I would mind. I'm the best at knowing what my son needs and would want to be able to get my son exactly what he needs exactly when he needs it.

I suppose what I find surprising is less about their degree of vulnerability which I agree is similar, but rather that it results in situations where children who have significantly harmed other children are placed in the same homes as the children they have harmed. They are all also subject to the same measures to “keep them safe” so in some homes (and I’ve been there), they use children’s plastic cutlery to avoid some stabbing and some being stabbed. Just seems odd to place them together and treat them the same.

Yes, I take your point. Just for clarity though children who’ve offended are not accommodated alongside children they’ve harmed, are they? They’re accommodated alongside other children and there’s a high staffing ratio. My experience is with older children in STC/YOI so I don’t know how kids are separated in SCHs, but most of the ones I knew came through SCHs if they were young enough. Most were very calm there because they were having their needs met, away from older peers and influences (including parents/guardians).

Why do you sincerely hope not? Me saying this seems to be more frequent isn’t a slur or an unkind remark, it’s a simple observation. But no I don’t, I work in a different area. There’s a thread on here every other day with a despairing parent whose life is hell because their child doesn’t sleep, attacks them, probably through frustration as they can’t talk or understand anything. I know a handful of children like this in real life.

What happens when there aren’t enough people working to pay the benefits of those who can’t , which the way we are going could be a generation away .

However lots of parents getting the money are not using it well.

So a good parent can have input to where the money will be spent but no money changes hands. If you can pay it out of your own pocket then of course you can have free will. If it's state money, the state is involved in how it is spent.

Surely the kid gets what it needs, the parent has been part of the decision making on how to spend the money but the state ultimately keeps control of it.

This would stop all the feckless parents who get huge amounts of benefits and then having underweight, malnourished, unwashed kids and we all know they exist. The money is used for the kid only. The parents can get a job if they want drugs, alcohol etc

I honestly don’t know. I think we are already in crisis providing services to children and young people who can’t support themselves in any way. I dread to think how it will be in 20 years. They’re spending all the money now and not planning for their future. What use is a 300k care package for a child who will need care for life and is unlikely to improve? It would be better spent building more care facilities as they’ll have to live somewhere.

I don’t think it’s very ‘brave’ to devolve care of vulnerable people to doctors who have the option to ‘put them out of their misery’ so we don’t ’bankrupt the country’ by paying for their care, no.

I’m sorry you had that difficult experience caring for a relative. It seems to have made an impression on you. But your justifications for ending their life sooner seem based on the suffering of others and the cost. Which is pretty awful. Presumably that person meant something to you at some time, and you would have had an idea of what they’d want for the end of their life. But you don’t mention that at all (that I can see). Your emphasis is all on cost and impact on others.

Why do you assume that severely disabled people are suffering? Because you don’t want their life for yourself? Not everyone is the same.

I actually think we are just about there now. The country is going further into debt each month to pay it's bills. It's cost to keep borrowing is going up which creates a downward spiral of increasing costs. No growth means we aren't really fixing anything we are just fire fighting. At some point the fire will be totally out of control (I think it probably is already but everyone is pretending things are still 'ok')

Then what happens to all the children who are getting all this money spent on them. Same with all the old folk getting all the money spent on them.

If the money is gone what happens?

Because the way you speak about children with additional needs, and your distaste for the cost of caring for them - verging on blaming them - is horrible.

You say these situations are more frequent, that you never heard of them 20 years ago but your evidence is examples from Mumsnet. Did you read Mumsnet 20 years ago?

20 years ago many children were still institutionalised (some still are now) and parents didn’t have the same access to the internet or spaces to share personal info. That’s what’s changed.

This is exactly right. The country is now in a downward spiral of borrowing each month and increasing debt costs. So what will happen when the goverment can't pay anymore. Well the private sen schools will close up and do something else to make money and the kids will be left high and dry.

They’re not placed alongside the specific children they may have harmed, no, but alongside children unknown to them who may have been harmed in the same way they have harmed others - iyswim?

Surely from my post it is evident that the old person was suffering. I didn't perhaps state it clearly enough because i thought all the things I described would make it impossible for anyone to think they had a good quality of life.

Did it make an impression on me. Yes for sure. My own health went downhill and despite this (and alot of money) the elderly person was still in alot of distress.

To me it would have been far braver and kinder to gently end that person's suffering. And yes it would have benefited the state greatly in terms of financial savings. I know they would have been horrified to be soiling their bed, the carpet, acting quite derranged at times, violent. Their dignity was completely stripped away despite all the care.

I tend to agree with you. That said, where children are born severely prematurely, weighing less than/just over 1lb, although sad, it would probably be the best outcome for the child and the wider family. Modern medicine has become so good at keeping these babies alive but at what cost to the child? The outcomes have not kept pace with medical technology. Out of 100 children born severely premature, still only 1 in that 100 will go on to have a normal life. That's an incredible amount of what will likely be fairly severe disability, and its the child who is living it.

It isn’t ’distaste for cost’ it’s confronting hard numbers which will not change no matter the emotional value attached.

I didn’t say 20 years ago. I said 10 years ago. Which was full on internet times, not some kind of Stone Age. Just look up ‘non verbal autism’ on here and 95% of posts are from the last 5 or 6 years alone. Before that it was very rare. Every teacher and SALT I have heard from has said the same - that this profile has massively increased in frequency.

Reading the above as a value judgement is entirely false.

Yes, just your emphasis seemed on other things.
Caring for someone in those circs is horrendous and I would agree that ending their suffering (if you knew that’s what they would want, I mean who wouldn’t?) would be kinder. I just wouldn’t extrapolate that to disabled adults or children with SEN or babies, as you have done.

But you’re not confronting the hard numbers are you? You’re complaining about them based on quite limited understanding of how it has come to this. I have seen no-one on the thread defend the extortionate cost, but it is this way because of decisions made by successive governments, most notably austerity. That was couched as ‘hard decisions despite emotions’ too.

Your alarm seems to be directed at the children and adults who need care (which is now often horrifically expensively provided by venture capitalist backed firms) rather than the shitty system that they had no hand in creating.

It's because everything has been privatised. If we had decent state funded government help, we wouldn't be at the mercy of these private organisations that completely take the piss. We need to take all social care back into government hands. Privatisation has failed.

I used to work for a private adult mental health residential therapeutic service. Average cost was £3000 per week per resident. The owner then changed the service provision to under 18s as they could charge considerably more for providing mental health provision for children and young people and re registering with ofsted. (more in the region of £12000 per week). I no longer work for the company and returned to the NHS as our values no longer aligned.

That’s because that’s what you’re reading into it presumably as a SEN parent. Anyone objective would see that I’m not.

What a curious assumption. Not an SEN parent no, and odd that you’re guided by that as a judgement.