Rich and I went to the All Party Parliamentary Group on Learning Disability this afternoon in the Houses of P. Reporting on progress from Winterbourne View. Lord Rix chaired. Phil spoke movingly about his young son Josh being so far from home. Hazel Watson from NHS England talked about what was being done (as ever, being done, rather than done) about closing assessment and treatment units (ATUs). Viv Cooper from the Challenging Behaviour pulled up the Winterbourne Joint Improvement Programme for non-action across three years. The Executive Director from the LGA (who?) said words. I was reminded of washing LB’s hair. Water bouncing off with none penetrating his thick and unruly mop. Words. Bouncy bits of water. Doing nothing.
I stopped listening and thought about bath times.
Norman Lamb, Minister of State for Support and Care talked the talk. Passionately engaged with trying to get people out of ATUs. What are the obstacles Norm?
- Absence of information about who is in them. [in hand]
- A lack of senior people in NHS England responsible for the programme. [changed since March with Jane Cummings/Hazel Watson taking responsibility]
- A reliance on psychiatrists making clinical judgements about placements when they are paid by the service providers. [brain melt]
- Problems around funding and funding flows. [an apparently insolvable problem]
- An ingrained culture in which learning disabled people aren’t seen as equal citizens. [It’s up to all of us to change this one].
Ok. We know the issues. What’s going to happen? Er, fuck all by the sounds of it. Norm has his hands tied apparently. Hugely frustrating n’ all, but those local clinical commissioning groups/local authorities are a plinking law to themselves (paraphrasing a bit here). There are no local services to support the release of people. People aren’t released because a) containment is a cash cow for providers and b) local authorities can’t suddenly stump up the costs for newly released people.
Eh? Sorry Norm, but if you can’t do anything to change things, who can?
*tumbleweed*
In the room were a largish group of parents. A group of parents who, between them, had enough atrocity stories to sink a battleship of pointless talk and no action. And that’s without chucking in the fact that LB died [he died?]. In the small amount of time left for questions, completely harrowing experiences were lobbed at the panel in Committee Room 4. Overlooking the Thames and the London Eye. Each story should (and would) have led to criminal proceedings if they had occurred outside ATUs. Stories of abuse/assault/neglect and fear. Against people who are not listened to or able to fight back.
This being a British affair, the atrocity stories were comfortably absorbed without visible shaking of etiquette. LB’s death even popped up in the discussion as something unspeakable but at the same time, a little bit of a ‘fable’. A work in progress version of a horrific event acknowledged but, at the same time, written out of the landscape. Our dude has made it to the parliamentary table, but with a particular coating. A ‘move on and thankfully not mainstream news’ coating.
We went to the pub. And chewed over next steps with Mencap and the Challenging Behaviour Foundation. A shared recognition of the scandalous/untenable position that is.
Yep. And?
mydaftlife 
:(( Still such a long way to go …. No words . Xxx
Oh dear, I emailed Norman earlier this evening about our own situation with our learning disabled/autistic son and all the issues mentioned above. Now feeling a bit sick! God help us!
We had better figure out a way to help ourselves – because, it seems from this post, everyone else is bemused and shrugging their shoulders. Too…difficult…too expensive, what is to be done, then off to think about something else.
Sara, we all owe you a debt for refusing to be fobbed off, telling it like it is. I am so, so sorry you have been driven to this terrible place.
Sadly this is just another load of window dressing following on from all the countless others before it. We have got to realise that it all comes down to finding ( bringing to justice ) the Controlling/Directing mind as they say in the Corporate Manslaughter Act. Until we do we are not going to stop this horrendous situation. There are so many parallels that can drawn that give rise to overwhelming public outcry once they have been uncovered. This is another of those instances, but this one is a far greater National scandal and bears the mark of National shame that will never be forgiven.
What is happening in practice is that when all this window dressing passes down to Local Authorities the Local Authorities are able to break the law or bend it using Judicial Discretion and get away with have a telling off or pay a nominal compensation (only to those that are able to mount a challenge in the first place and stay the course) rather than pay out the larger funding amount that is required. This is done at the expense of the vulnerable, and carried out with the use of sanctimonious, convoluted meaningless jargon.
We are all sharing the same experiences. We are all saying the same thing- but separately. We are all banging our heads up against a brick wall becoming frustrated, bewildered, angry, despairing almost radicalised. Whichever way and however you approach “them” (Local Authorities/Social Services/Learning Disability Partnerships) you arrive at zero or stay at square one during which long drawn out time you are tortured and then punished with the fallout of the consequences that “they” have created.
We are all going to carry on stressfully struggling through the ever increasing labyrinth of jargon and formulations, and bureaucratic hoops and stages, at the mercy of those despicable people that are exercising their discretionary powers this way, only to come full circle and end up back where we started, and having to repeat the whole stressful meaningless exercise yet again. All the while having to deal with an incredibly stressful learning disability lifestyle. Legally and morally we still have to go through the whole charade to verify our case even though the result is injustice. The RAS forms are rigged (by a person) with a factoring quotient that always gives a zero result !
Sadly it seems by all our experiences that all our efforts at bringing into reality the humanity that we are lead to believe is what makes us humans different are being
crushed by the people with no humanity and who have the power to do it.
This problem is systemic.
This systemic problem is made possible by the policy that drives it.
The policy comes from the Government policy.
The Government policy comes from the Government manifesto.
The Government manifesto starts as the election manifesto.
The election manifesto containing the policies is presented to the public at the general election.
If the public want the policies they vote for them
It’s simple, the public voted to cut welfare benefits, a term they understood as unemployment benefits by the way that pre-election discussions where always spearheaded. However, there is also a simple agenda, the Government is using the vote catching “get the unemployed loafers off benefits” and be like the rest of the “hard working people” by using the word Welfare as a Trojan Horse to include and cut Disability, Learning Disability, and Autism support funding.
However, those hard working people are the same people that have sons, daughters, spouses, family members who are suffering disabilities and are struggling against this despicable agenda and the despicable people that are employed to carry this out in the name of “care”. According to Mencap there are approximately 1.4 million people in UK affected by learning disabilities. Add to this all the “elderly hard working families” that have or are affected by a son, daughter or relative with autism or learning disabilities and you have got a sizeable chunk of angry voters.
So what’s the answer if you’re in my position. (It’s all happening on our watch)
The answer, in my opinion after a very long and stressful learning curve, is not to petition this Minister or that Minister, because they pass you from pillar to post and Parties will fudge and invent (expensive) commissioners, commissions or working committees that never conclude anything satisfactorily,
I think what we are all saying should be said together as one voice, I think the total number of voices are considerable and we should all sign up to this (no charge) .
We then agree an AUTISM MANADATE list of requirements that must be carried out (now).
This could include funding, a dethroning of Local Authorities judicial discretion and clarification of social service legal limits making them a service proper. etc
This AUTISM MANDATE would be presented to the main political parties prior to the next general election offering them the chance to pledge to include our demands into their policy in return for our vote.
If no party agrees we withhold our vote. If it is our moral duty to vote why would we vote for immoral representatives
We all know that politicians are desperate for every last vote.
Richard
Sadly this is just another load of window dressing following on from all the countless others before it. We have got to realise that it all comes down to finding ( bringing to justice ) the Controlling/Directing mind as they say in the Corporate Manslaughter Act. Until we do we are not going to stop this horrendous situation. There are so many parallels that can drawn that give rise to overwhelming public outcry once they have been uncovered. This is another of those instances, but this one is a far greater National scandal and bears the mark of National shame that will never be forgiven.
What is happening in practice is that when all this window dressing passes down to Local Authorities the Local Authorities are able to break the law or bend it using Judicial Discretion and get away with have a telling off or pay a nominal compensation (only to those that are able to mount a challenge in the first place and stay the course) rather than pay out the larger funding amount that is required. This is done at the expense of the vulnerable, and carried out with the use of sanctimonious, convoluted meaningless jargon.
We are all sharing the same experiences. We are all saying the same thing- but separately. We are all banging our heads up against a brick wall becoming frustrated, bewildered, angry, despairing almost radicalised. Whichever way and however you approach “them” (Local Authorities/Social Services/Learning Disability Partnerships) you arrive at zero or stay at square one during which long drawn out time you are tortured and then punished with the fallout of the consequences that “they” have created.
We are all going to carry on stressfully struggling through the ever increasing labyrinth of jargon and formulations, and bureaucratic hoops and stages, at the mercy of those despicable people that are exercising their discretionary powers this way, only to come full circle and end up back where we started, and having to repeat the whole stressful meaningless exercise yet again. All the while having to deal with an incredibly stressful learning disability lifestyle. Legally and morally we still have to go through the whole charade to verify our case even though the result is injustice. The RAS forms are rigged (by a person) with a factoring quotient that always gives a zero result !
Sadly it seems by all our experiences that all our efforts at bringing into reality the humanity that we are lead to believe is what makes us humans different are being
crushed by the people with no humanity and who have the power to do it.
This problem is systemic.
This systemic problem is made possible by the policy that drives it.
The policy comes from the Government policy.
The Government policy comes from the Government manifesto.
The Government manifesto starts as the election manifesto.
The election manifesto containing the policies is presented to the public at the general election.
If the public want the policies they vote for them
It’s simple, the public voted to cut welfare benefits, a term they understood as unemployment benefits by the way that pre-election discussions where always spearheaded. However, there is also a simple agenda, the Government is using the vote catching “get the unemployed loafers off benefits” and be like the rest of the “hard working people” by using the word Welfare as a Trojan Horse to include and cut Disability, Learning Disability, and Autism support funding.
However, those hard working people are the same people that have sons, daughters, spouses, family members who are suffering disabilities and are struggling against this despicable agenda and the despicable people that are employed to carry this out in the name of “care”. According to Mencap there are approximately 1.4 million people in UK affected by learning disabilities. Add to this all the “elderly hard working families” that have or are affected by a son, daughter or relative with autism or learning disabilities and you have got a sizeable chunk of angry voters.
So what’s the answer if you’re in my position. (It’s all happening on our watch)
The answer, in my opinion after a very long and stressful learning curve, is not to petition this Minister or that Minister, because they pass you from pillar to post and Parties will fudge and invent (expensive) commissioners, commissions or working committees that never conclude anything satisfactorily,
I think what we are all saying should be said together as one voice, I think the total number of voices are considerable and we should all sign up to this (no charge) .
We then agree an AUTISM MANDATE list of requirements that must be carried out (now).
This could include funding, a dethroning of Local Authorities judicial discretion and clarification of social service legal limits making them a service proper. etc
This AUTISM MANDATE would be presented to the main political parties prior to the next general election offering them the chance to pledge to include our demands into their policy in return for our vote.
If no party agrees we withhold our vote. If it is our moral duty to vote why would we vote for immoral representatives
We all know that politicians are desperate for every last vote.
Richard
Sara
I am in awe of everything you are doing at this terrible time. My son is learning disabled too, and is now seriously physically disabled and reduced to a very sorry state, all done by his LA carer, the damage done compounded by officers in a LA who would not listen to us. We went on our knees over the years long cinder track to the Ombudsman. The LA were fined pennies and put on the naughty step. All solicitors we contacted told us this was a civil action and even if we ‘won’ the LA would run us into wall for years, and any ‘justice’ would be minimal because of his learning disability. My son was not ‘believed’ and I was not ‘believed’ by the LA. The Ombudsman sat on fence. The LA worker was believed and promoted. All long life/joy limiting years compounding our grief and our impotence. My very best and kindest wishes. You are a brave and wonderful woman.
Sara,
I thank you for having the courage to keep going and to keep fighting.
I am genuinely terrified that one day,some bright spark with more power than sense will feel its right for my son (severely Autistic) to end up in one of those sink holes.
The law is out of reach of those of us who are most vulnerable, so they have no protection.
what kind of society are we living in???
we need a pro bono law firm, just specialising in LD cases who can claim the costs back from the ‘providers’ of the sink holes.
I would agree with you about the national scandal, but I am not so sure about the national outrage.
Steve Broach in his answer to Sara’s question as to why there was so much indifference defined it as limitless need and no money. But that does not make a whole lot of sense to me. Some people – Connor and others – are given terrible non care that cost a fortune. I read on Baili yesterday of a young woman who needed – and got – 3 to 1 care during the day, and 2 to 1 at night. Good luck to her and her family, and God knows what awful story lies beyond that – but how many of us could even dream of that level of care? In plain English, things might get a whole lot better if things were a bit less of a lottery.
When have you ever come across anyone who was even interested in what our family member actually needed? Slap a label of LD or mental health on someone and it all gets very theoretical. The whole thrust of Sara’s wonderful campaign is that they are people first and seeing them as an expensive headache from problem families of little value doesn’t work well.
The Guardian has daily articles about the wonders of Social Work. Why are most of us terrified of them? How has this tottering Kafkaesque edifice been built? I would agree that this Government has a lot to answer for, with its terrible, dishonest rhetoric. They might scrabble for votes if there was a public outcry but I don’t really see a lot of hope for change there. The misery of its victims is too fragmented and too easily hidden. I think maybe the public scandal is more likely to be fuelled by highlighting the expensive lunacy and inefficiency of the present set up. It cost a fortune to make the lives of Sara and the Neary’s so terrible.
We are with you Sara all the effing way X
It makes me so sad to read all these comments from parents, who feel they have been ignored (at best) by the professionals paid to serve them. I just wanted to say that although there are some really shit practitioners out there, there are also so truly remarkable social workers and LD nurses. I know this because I work with them.
There are countless situations when my colleagues and I have refused to make inappropriate placements that are suggested based of cost, tenaciously fought for care nearer to families and reported on and challenged via safeguarding, care practices that are undignified.
I bumped into the sister/carer of a lady with LD I worked with yesterday. Together we had fought against a proposal to move her 100 miles away because the nearer placement was £500 per week more. She hugged me and thanked me for all my efforts (which were successful), and the New Home card I had sent to her sister.
Yes, the #Winterbournepisstake is lip service but some of us are ‘doing the right thing’ anyways. Who needs a Concordat!
Sara has done a remarkable thing with 107 days, a rare and unique achievement, which has now crystallized a focus onto the so called guidelines controller/reviewers of the parliamentary committees etc and who she now realizes are completely despicable career clones. We are the people and the spirit of LB is us, we cant be snuffed out by them.
Mark’ Neary’s latest blog he writes the significant paragraph. –
“I think we have to stop waiting for the leaders and the social care world to show its humanity. It ain’t going to happen. Apart from some isolated (albeit powerful) examples, I don’t see any drive from within social care to truly serve the people they are meant to be serving. Service is dead. The drive, the humanity is coming from the families, ordinary people and the legal world. Coming together makes us very powerful – we’ve already seen lots of examples of the system feeling very threatened by that power. Good. This isn’t the time for observing niceties. This is the time for action. I’m sick to death hearing about culture changes being needed. Sod organizational cultures – let’s start applying the law. The human rights act. The mental capacity act. If your culture means you can’t apply the law, in fact you break you law, then you’re not fit to do your job. Let someone else take charge.”
Steve Broach/Kate Whittaker
I hope both Sara and Mark have read Steve/Kate’s ‘Using the Law to Fight Cuts to Disabled People’s Services’
This paper is intended to help campaigners – including disabled people and those supporting them – understand how the law can be used to help fight cuts to valued services in their area. The paper is intended to be read by those who do not have a legal background.
Further on they go on to describe the notion of the critical or substantial criteria of the LA’s. They also say that the only way in which a public body can lawfully stop providing a service to a disabled person is if a re-assessment is carried out which shows that the person’s needs have lessened or gone away. The only other way in which a public body may be able to withdraw services to an individual lawfully is if it has raised its eligibility criteria so the individual is no longer eligible (this was tried on our son, they tried to slip their own version of an assessment through as being the accepted one, crikey they know every trick in the book, in fact at every turn its a trick even down to insincere sincerity )
See also the Law Commission Report recommendations on the Regulation of Health and Social Care Professionals
So the conclusion is, taking Steve/Kate’s ‘using law’ (if permission granted) as the mandate we form a team (that word again) that will help bring together all the individual autism/ld complainants and vet their requirements to speak for each, with one legal voice to counter the LA’s legal games that they are playing in order to cut or avoid funding. “However, any individual or local group who is considering legal action in relation to actual or proposed cuts to services should not rely only on this paper but should seek specialist advice, including legal advice”, which we can do.
I agree with Pauline Thomas comments (Mark Neary blog) that the big charities have left us and the real world and platitudes from non affected people about the situation make me very angry. I am determined to fight them the LA’s, they operate by not being transparent and having what they hope is a hidden agenda. But we will make them aware that we represent all the complainants and that we represent a legal line drawn in the sand, that we know in advance where the are trying to go with their tactics and that we will name and shame each of these serial offenders. I realize there will not be a quick result, but we are relentless. So I would hope we could meet to plan to pool our strengths to push this agenda into action. Better together otherwise they will sanctimoniously try to pick us off one by one. Its up to us.
If we could get each family to donate a pound (not that they should have to), if we take one case at a time from simple to complex cases to people in crisis and get a core of voluntry and good practice paid workers that can give time and see a case through to train people up to the right and proper standards. MAKE SURE THE CARE IS PERSON CENTERED AND PRO ACTIVE. The trouble in this area any base wether it be a house or a centre is expensive to buy or rent lets get away from units and get into safe havens were we can let professionals and medics in if we need some advice or treaments but for the rest of the time are providing therapies that are alternative, with calm nuturing spaces to let people heal and engage in meaningfull activities. Lets cut stigma, say no to paying are taxes to dirty holes they are putting humans in and calling them medical settings!