For thirty five years my wife and I have looked after our severely learning disabled son.
For the first 18 years my wife did most of the care.
For the last 17 years I have done most of the care.
It seems likely, given the endemic reality of regard that is lacking in learning disabled care in the UK, both in statutory authorities and in the NHS, that many on this forum will sense that there is something wrong with the whole medical, legal and social parade of care.
The cost of that parade, of care language derived from statutory instruments of the Law, as well, the social spectacle arsing from it, has likely cost many learning disabled men, women and children their wellbeing and in some cases, their lives.
As a nation we should be ashamed at what we have done.
Damn right but where are the parents voices ????? Why are we not standing up and shouting about ???? Is it because in all honesty where all to knackered caring for our loved ones or just beaten because where to busy dealing with one fight or another to get our loved ones what they need and should have. I don’t know what the answer is but what I do know is the government isn’t doing enough the care system is broken and as always Learning Disability is bottom of the pecking order for everything and unless we stand up and fight as parents to be heard and for our loved ones to get what they need quite honestly we’ve had it.
Agreed - the system is inefficient at best and downright corrupt at worst. The level and standard of care our vulnerable children can expect (where there is any) is a complete lottery - despite so-called quality and control systems and bodies. Continual cuts in public spending simply exacerbate an already desperate situation. As parents we fight for everything, provide as best we can and dread the time when we can no longer do this and our children are left to the mercy of this broken system, run by ill-informed, ignorant, narrow-minded so-called professionals who assert that they "know best" when actually they have no clue whatever. There is good in the system, but it is increasingly hard to access. Unpaid carers are supposedly recognised for the massive savings we provide for our government and yet we are not accorded a voice and our "wage", for what is often 24/7 care, is a measly £69.70 a week. Do we go on strike? No, we cannot (and most of us would not).
I agree. Any society that considers locking Autistic adults in secure accommodation with no freedoms or social interactions has to have a long look hard at itself.
Learning Disability is not a trendy or woke issue like other minority causes so it has only us parents and loved ones to shout out for change. Not everyone has the ability to do this shouting out because they are intimidated by professionals or fearful of what might happen.
That precept in the idea of people being intimidated by professionals is of course not unfounded. I have systemically stood up to these professionals for thirty five years with an undoubted effect that they almost always falter into a seeming confusion as to why the evidential facts that are documented and properly journalised do not speak for themselves.
Their language often then becomes increasingly obtuse and their visibility becomes increasingly opaque. So when they tell me that it is a shame that I am so combative because they are on my side, I simply ask them 'whose side is that then, that I am on?'
Many lawyers, social workers and health clinicians are all in the same threshold of meaning. They imbibe by ones own expertise of experience a sense of being spectacularly arrogant in truth, unimaginably dull intellectually and almost entirely bankrupt of morale direction other than in a precept of the grand parade of class decency and faux fairness.
Britain is a bankrupt and utterly dishonest nation when it comes to Learning Disability.
It's a never ending fight. They know it and they do it in obedience to their professional standing in a preservation before the law, by the law and in support of their statutory duties to the State.
Whatever aspirational decency is in individual professionals, practitioners and clinicians in this vile system, it is a hopeless process for them and an almost guarantee of personal loss of wellbeing in practice.
My god never truer words spoken in this post. Like many I cared and did for my son till he was 41. Now he's been handed over basically to supported living by the local authority to care for him,, it's like sending a lamb to slaughter. Their all in it together!!!
Everything has been said , already and I share the view of all here, having cared for our son 32 which we did since he was diagnosed at 4, now feel exactly like 'sending a lamb to be slaughtered' as we are growing older and fearing for his future
I really want to disagree with everything said above but I cannot, been there, done that and on my own as a parent too. (I am not looking for medals, parenting was my choice).
The messages above all contain stories that I relate to, have experienced, continue to experience.
In the past it has always amazed me how much I achieved by chucking out their policies which they thought were law and by introducing them to the actual law word for word. Budgets go from zero to massive overnight and they reluctantly accepted this having been beaten.
That is history though. We have a new breed of 'professional' now, those who could well be part of this government for the way they behave, the absolute disregard for decency, inclusivity and fairness. Now, trying my previously successful methods they are using a new, more powerful and incredibly destructive weapon - Exclude the Next of Kin from the checks and balances. Just cut them out totally.
They do not even care about little nice things such as the capacity act which they now use for their own convenience. A few years back it was decided that my daughter really needed to spend some time in a mental health hospital. They said she lacked capacity and it was essential she was admitted. That afternoon, all the hospitals within telephone range said they had no beds available. My daughter, without a new assessment, suddenly regained capacity and was asked if she wanted to go. She said 'no' and that was the end of it! Miracle change of capacity which solved the shortage of beds issue.
They are doing the same thing now to shut us out of decision making. What they are doing it illegal but, this is the new generation, there is no one prepared to challenge them because, by doing so, it will cost money they do not have so they all follow the act like sheep.
Yes, I have asked solicitors but, none of them seem to want to do anything either.
I can see her £160k budget being slowly reassessed to being a far lesser figure. I can see them saying 'she wants to move to a care home' and, she has capacity so, you have to let her do it ... though, she always says to us she wants to do this or that, to them, they tell us, she says the polar opposite. Says she wants to do things which coincidentally either increases the profit of her day centre or the income of her care provider. When she can, the social worker will, we know, get that hard fought for £160k down to the county average of £30k and no doubt earn a bonus in the process.
Those who cared left these services. No one can care and yet be forced to make cuts they do not agree with, cuts they know are not in the best interest, not what the client wants. They leave and this new breed take over. Tight as thieves they are.
I read some of your previous posts before I joined the forum. I was taken by several details you raised. Now in this post I see more detail that rings true in my own experience with the NHS, Local Authorities, GP Practice and Lawyers.
I have always assumed that others would experience the same methodologies I have experienced with my son. This has been because I have also read the law (enacted law and case precedent law) and have done so for nearly 45 years, 10 years before my son was born.
The interconnectivity between the various statutes is of course cited in the statutes' themselves. And the statutory instruments enacted along with the primary statute in a given enactment express statutory requirements when addressing the various sections of an act.
What I have noted in the last 10 years has been a carefully orchestrated effect by NHS, LA's and GP's utilising the spirit of the 2005 Mental Capacity Act precept of the core principle of the individual to express capacity and to have regard to a presumed capacity to direct their own lives. I have also read the reports that MENCAP have produced over the last 20 years that outline some of these problems in the experience of people who were adversely affected in hospital admissions where they lost their lives based on that very misuse of what is an entirely reasonable presumption to capacity - where capacity to consent means an appropriate inteligence to make informed choices.
Your 'next of kin remark' does not of itself expressly guarantee anything. It never has in these kind of circumstances. All involved professions have misused the Capacity Act, but I do so agree that this generation of professionals is a new breed of people.
Its rather disturbing that I could read such things and at the same time realise that my historical view, that the numerous enactments are becoming a statutory instrument to continue the abuse of learning disabled people, their families and their advocates, is now almost impossible to resist.
LA policies may NOT reflect relevant law, and are a simple matter to resist when they are cited as a first response to those who care for their loved ones in a learning disability framework.
Like I have said, we are a bankrupt and utterly false nation when it comes to learning disability care and provision.
MENCAP are (so far as I know) the only group who uphold a true definition of Learning Disability and they express it as a contrast with Learning Difficulty. But their definitions are bang on.
I worked in Mental Health in the late 1970's in what was then called Mental Subnormality and whilst there were huge problems, especially from clinical medicine in the care and treatment of LD folks, the essential direction of understanding LD was far more accurate than it is now. It was sociology and some schools of psychology that gave us this bankrupt system we have now.
The 'new' professional is just a self directed party in agreement with the very meaning of the nine (9) protected characteristics of the 2010 Equality Act, only just not learning disability when that means families deciding to refuse their informal status by seeking proper redress for their huge sacrifice by being respectfully and appropriately recognised as the real experts in the lives of those they care for.
It is so good when you are able to fight with words. I feel doing this 'job' with love for over 30years I feel I have no words left and don't really know how to put my case across anymore. All I know is it was a lot easier before they reached the adult services. Carers Network usually do surveys so I do fill them in, in the hope they will make some impression out there in the big wide world and the Government!!!!
It may be a sign of maturity to have your inner words so well gathered that few outward ones are needed. Let some shout from the roof tops where they cannot be seen and let others bear witness in the streets with a refined gaze. Together they shall shame the Devil!
Thankyou for your post , I have been unpaid carer for my severe Learning disabled son for 38years , for the last 5years on my own since his dad died , I agree things have changed over the years , My son used to have a named social worker from our area who got to know him and us , this all changed 10 years ago when our county council decided to out source , .since then we have had SW's which are contrated from different parts of the country so know nothing of us or our area , we have had his whole care package which is small compared to some as he lives at home with me , completely messed about with at times .
I know we should all be speaking up about the unfair situations for LD adults but after all these years I have been through most situations and am tired of fighting .
Emails to MP ,s have been answered with a generic letter saying how much they have put into the system , I have also wrote to my MP about unpaid carers loosing carers allowance when they recieve the state pension
... I dont feel anyone is standing up for LD or carers and I am extremely worried about the system taking over his life when I am no longer here ,
I wish I was confident in the system but I have seen too many horrible sides to it . Finding good care is a lottery and Councils are passing the buck more often .
Thanks again for your post and agree with everything you say , best wishes to you and your son .
When the MCA last change it supposed capacity unless proven otherwise and the methodology for testing went way down and left out some very important factors.
Back in the day we used to refer to those we cared for as 'having the mental age of' and we knew what we meant, it made perfect sense. That can said many different ways but, what it boils down to is, compared to non challenged people, what actually is their understanding of the world?
By the old system my daughter would have been said to have had the understanding of a 6 year old. By that definition, would any sane person say that a 6 year old really can be left to make the sort of decisions someone who has capacity is expected to be able to make?
My daughter wanted to go Alton Towers. She was used to us taking her. We were there from when it opened to when it closed. Her care providers said that they would take her but her carer had to be back for 4 and couldn't start until 9 so, was she OK with that? Daughter says 'yes' because, she's no flippin' clue what they are on about, she just wants to go Alton Towers!
They get there, go on one ride, turn around and come back costing the best part of £100 all in with entry, food and fuel. My daughter was really upset about it, she wanted to stay longer but, the manager says, "I gave her the choice and she has capacity".
Totally agree, my son will answer yes to any question a 'professional' directs to him, but I know that he may recognise one word in that sentence without understanding the context of the question, or will answer yes or no based on the persons tone of voice. Before they even ask him a question I inform them that he is basically non verbal and won't understand what they say. Then when he responds to them with a yes or a no, they glance at me as if to say 'there see he obviously understood, because he responded to the question'. It is so infuriating when they don't believe anything a parent says, we know them inside out, even better than we know ourselves. This seriously needs to change, we deserve more respect and our word in decision making should be final, no one has their best interest at heart more than a parent.
Would these 'professionals' want strangers making decisions about their own children above their heads? Our children maybe 'adults' in age, but they are eternally the mental age of primary school children, and as such parents should be allowed to speak on their behalf, and not be brushed aside. The Law must change for our children's quality of life.
I couldn’t agree more to everything you say. I’m going through this now, my son who’s 48 has just recently failed a capacity test for finance, after I’ve been telling them all for the last 7 years he’s been in supported living, that he doesn’t have capacity. Now it’s been proven I don’t think anything will change, they haven’t shown me any respect as you say by apologising in any way, as we all know they won’t admit to anything. They don’t reply to emails totally leaving you in limbo. A meeting was organised and it was only when I got there I found out it was a best interest meeting. This was all new to me as I wasn’t informed of this, had never attended one before so was unprepared. Absolutely shocking the total disregard they have for you, as the person who has provided a decent standard of care for their loved ones which counts for nothing in their eyes!!
I am going through this myself at the moment with my daughter whos 30. The way they treat me is awful & for no reason as im a good mum & they have no concerns. The dictatorship is an horrid heartbreaking stressful experience.imwith you on this x
Hi Parental. Saw your post then looked at all the other posts. Am truly appalled by this situation. My son[ age52/ mld schools from 5yrs to 19 yrs] Proved himself by training as Greenkeeper , then on moving to cyprus [ My hubby wanted to leave UK] set up Self-employed gardening[ I did his accounts] Being told he was Autistic--needed help/support-- We came back. Assessment was positive [high level] But----Support? Big joke. YES I do feel things should change---- with no caring family our children will not survive. My own neice , ]presumed to keep an eye on son when I die] pulled out as I woud'nt put son into LA care and move to a Posh Apartment [Iam now 84 ] But I cant do that You cannot throw out your own child , |Even at his age.] Who would wave the Banner at No 10 to change this????? no-one I can think of, If some-one has an idea 'll join them .
The place to wave the banner and to wear the chains on the gates, and to raise a commotion in the civility of maintaining the peace, MAY be outside the Court of Protection.
The stark visibility of our children (unchained) sitting with their parents in chains would raise a fire storm in the CoP and No 10 would be invested with sufficient fear to look.
The CoP would simply close the shutters on their ivory towers having sounded the alarm of indignation.
The cost to parents would be incalculable in a system that is predicated to wielding the rod in a show of concern. The right of the individual would be fired up in light so that their parents could be sanctioned, as the right of their child would be held aloft when they are pressed into the maze of a system, even deeper than Hades - because their parents raised the banner.
A truly British parade.
Millions gave their lives and far fewer have made their towers over their graves.
Agree with all of the above. I am terrified what will happen to my son when my wife and I are no longer around to care. We have a government and system which believes in survival of the fittest. There is no compassion for the less fortunate in our society. Just seen as a burden that prevent the governing class and their mates from getting even richer 😡
I believe that the problem is more nuanced than the somewhat evident capacity for greed that the British system has in its folds.
"Capital is king" was the cry at the beginning of the 18th Century.
Survival of the fittest, as a theory in precept, is also eugenic in practise from the mid 19th century.
Both come with a consequence.
Neither produce fairness or decency.
Though both depend on the parade of decency.
Since the Second World War we have adopted the American way of thinking.
I thought for decades that we would reject the American model and embrace a new British model. But it never really happened, and in the last 20 years we have thrown ourselves into the pit without shame.
We have retained a sense of our fair play - but strangled it with individuality and made community a mere precept.
In short we are dead in neurological spasms that give us a supposed scientific dial that has become an emotional spectacle because we barely understand the pathology of our own feelings.
Just to say it - I don't have a shred of mercy for the professional classes.
Just a question after reading all these heartbreaking stories....Mencap is such a big name, is there nothing more they can do to help us in this country to fight our cause for future.
Just over a week ago I finally got a meeting with social services. Their complaints team, the LD manager and the entire department manager. I was not optimistic.
I was saying going into the meeting to family, I just do not have it in me any more. I used to be able to run rings around these people but, that spark isn't there now.
However, turns out I am not entirely useless. Transpired that my theories on motivation were correct. The care provider really was colluding with the social worker. I even demonstrated that a safeguarding issue had gone unnoticed and investigated. This on a matter for which I had demonstrated considerable evidence. On the basis of the evidence they are going to investigate and they said themselves, they are quite sure that the care provider if acting inappropriately and are breaching their contract.
A message has gone out to the care provider reminding them that their contract is with me, not social services. In short, they agree 100% with my case and admitted that there were clearly fabricated accusations which had been made by the social worker and the manager of the care provider. That social worker has been removed from the case.
The meeting concluded that I had an excellent grasp of the mental capacity act, more so than the care provider. They highlighted other issues with the provider that they had acted inappropriately.
Sadly, all that said, I reached out to the care provider telling them I wished to work together with them to ensure they had the correct training. I also pointed out that they have been treating waking nights as sleeping nights and had to show them the employment legislation to demonstrate their error. The investigation will uncover that they have rota's for staff which are just illegal.
The care provider has not, to date, replied so they remain as previously, ghosting me.
But, it is Christmas and I am not pushing anything now until next year. If they do not make some significant changes they will just have to go.
The contract is with you and so you need to enforce it and stop allowing social workers to be used as a big stick to intimidate you into accepting less than your family member expresses herself.
Just take cognisance that the key force was a safeguarding concern. Social Services will extract themselves from that dial quick sharp. That does not mean that they will be less willing to be a stick to uphold faulty practise in the provider when its easier to wear you down first.
The provider has a contract with Social Services indirectly through the statutory frameworks. That is a regulated process that holds Social Services to account when they fail to hold care providers to account in the expenditure of the public purse.
No one is going to be thanking you. Have a great Christmas and give them hell. No mercy. Just be nice about it. 😇
Best of luck for next year , I understand completely how worn out you get but somehow you found a little strength, god knows how x our kids deserve better than this . My sons daycare shut gain yesterday because someone phoned in to say they tested for covid , there was no covid in the centre . Staff dont care about phoning 10mts before we leave the house to cancel , my son had his packed lunch in his bag and his coat on .. i know covid is still around but I cant see how everyone else is back to normal and thier interpretation is different , staff were out shopping .?? Clients seem to be way down the list after the last couple of years , The staff spend more time hanging around the office than actually in the day rooms . and its a take it or leave it situation, if you ask a polite question about something it goes around and ends up being blown out of proportion. Im fed up with walking on eggshells with them and social.services and try to have very little to do with them , they are only interested in finances ,
Unfortunately I wil have to start the procedure soon about looking for residential for my lovely son which is soul destroying, but 2023 looks daunting which it shouldnt be if I had faith in any of it .
Sorry to rant, I empathise with all the posts on this subject .
Hopefully with good health and good support you will be able to carry on caring for a long time yet , the problem sadly is when we are no longer around and supported living or residential care has to be found , Happy New year to all x
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