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This is your very first post. Click the Edit link to modify or delete it, or start a new post. If you like, use this post to tell readers why you started this blog and what you plan to do with it.
The last few weeks the Bethany scandal has uncovered and confirmed the bitter truth about the shallowness of the one-size -fits- all delusional policies that for the past 30 years have been proclaimed as being the answer to carers heartfelt prayers.
The clock has been turned back over half a century, starting from the 1980s. Despite a lack of sound evidence, a one-size -fits- all policy decreed that specialist and structured service support could be withdrawn from all levels of learning disabilities however profound, and all attendees at day centre could be found paid employment.
Was it successful? The success of this one-size -fits- all delusion can only be measured by the outcomes. Day centres and special needs units were closed by the dozen, the overwhelming number of former attendees remained jobless, carers found their formerly stable lives thrown into turmoil, and the little power they had experienced as a united force was demolished.
Thousands of families were channelled into a second one-size -fits- all delusion – the Direct Payments option.
Many welcomed this option, and why shouldn’t they when the terms on offer in the early days were so inviting? In the absence of ‘traditional services,’ others were pushed into enlisting whether they liked it or not.
When the Government seeks to change policies it can will be generous only as long as it is necessary. Universal Credit policy was introduced in 2013. since when different priorities have been determined. In July 2015, it was on record that 760,000 people for a whole range of reasons were claiming direct payments. Some will have already been assessed, others will eventually be assessed. They face an uncertain future to which the contents of an article in the Sunday Times 18th November, offers little reassurance.
Emily who since birth has been unable to speak, walk, or eat for herself and is now 19 has been bought up by her grandmother, Jean.
Last month Jean, 68, was told their joint income was to be slashed from the £720 a week, needed to pay for Emily’s 24 hour care and transport, to £342. Jean fears that she faces the prospect of having to sell her bungalow.
She says that “Emily can’t speak or eat. We feed her using a syringe to pump food into her stomach via a tube. She’s doubly incontinent and can’t walk, as I have told the universal credit officials”.
Despite such warnings, staff from the Department for Work and Pensions made Emily attend a ”work capability assessment “ at the local job centre in Retford, then sent staff to “review” her at her Day Centre. She was awarded £58 per week, but benefits worth
£520 per week were taken away. They were left with £342 per week, less than half of what they had been getting ,also with extra mortgage and transport costs.
After the Sunday Times intervened a civil servant offered Jean an extra £150 pounds per week.
Jean says “ even with the extra £150 are benefits are down by £200 a week under universal credits. I think we will still lose our home”
This situation would appear to be a consequence of moving from childhood to adult status. How ironic it is that once into adulthood, the Universal Credit allowances which claims to aim at “Rights”, ”Independence”, and “Choice” for all, should bring home the reality that the cash flow in the adult world just isn’t as accessible as it was sold to be in the earlier days.
This poses the question: has Emily exposed the flaws of the second one-size -fits- all delusion of Direct Payments, as effectively as Bethany did the first?
For the last month or so I have been researching the background to the deficiencies in the history of the development of services for people with learning disabilities. This was brought about when my attention was drawn to the increasing number of people who have set themselves as experts and are publishing information that it totally inaccurate and misleading. Although this came as no surprise, it deeply concerned me. Reputable bodies such as universities were accepting and passing on this information as factual. Although I have continued to draw the attention of many, particularly academics and charity executives, to the discrepancies between fact and fiction, this has been ignored.
The problem is that there is no reliable reference source to which serious researchers can get to know the truth concerning when and how things went so badly wrong. The timeline of learning disability history published on the Open University website and supported by many other reputable universities, misses out information on vital developments between 1970 and 2001 that for many thousands of vulnerable people were to be life changing events. This was a critical period when appalling mistakes were made that transformed successful policies into the disastrous state that exists with care in the community today.
I am currently finalising an intended monograph that will spell out the timeline of developmental history of learning disabilities day services as seen through the eyes of a practitioner. Inevitably this leads back to those publications I have previously held responsible, namely the King’s Fund Centre’s ‘Project Paper No. 50 ‘An Ordinary Working Life’ (1984), the Independent Development Council’s ‘Living like other people’,(1985) and East Sussex Social Service Department’s documents ‘Working it out’ and ‘Responses to working it out’ publications 1986/87.
Events and evidence supports the view that these publications were largely responsible for the decimation of services that followed. Information already in the public domain provides an interesting insight into the parts played by David Towell, a Fellow in Health Policy and Development, King’s Fund Centre, and Ken Young, Director of Social Services, East Sussex County Council, who took it upon themselves to circulate theories based on speculation and wishful thinking without apparently carrying out reliable and validated research. More to follow.
A heartfelt posting is going around at the moment that deserves much wider circulation. Based on a series of WordPress postings by FINOLAMOSS it is a tragic commentary on the perils of presuming that ‘inclusion’ provides the only acceptable solution to all who seek lifestyle security and fulfilment.
Thomas Rawnsley dead three years. Still no answers
it wasn’t the spewing yell of Hitler’s speeches.
it wasn’t the constant clatter of jackpot lines.
it wasn’t the thundering hail of bombs smashed
All that was required to enable the Holocaust
A narrative by David T Gore provides s reminder of the price that can be paid when evil prevails if the rest of us sit back and do nothing.
Sunday was the third adversary of Thomas’s death.
He was a fit 20 year old, born with Downs Syndrome , later labelled autistic..
Thomas’s abuse and death is a testament of our society, morality and humanity.
His mother was not allowed to stay with him during his last night on earth. Her access had been prescribed since he was 17.
She was not even allowed to be alone with him when they switched off his life support machine. No private rooms were available.
The only ‘kindness’ shown was an attempt to obtain his body parts.
Working full time, Paula was to bitterly regret her cry for help with a teenage Thomas.
Unknown to her, a yellow star was already next to Thomas’s name – Downs and autistic.
His fate was sealed.
Social workers came in, assessed, and were over critical of his behaviour – he had pulled down a curtain .
CAMHS got involved and he was medicated with halopidol and respiridol, an overdose made him fit.
Fluoxetine was added making him fly into hypnotic rages from which he recovered with terrible remorse., unaware of his actions.
As with all autistic and learning disabled, Thomas’s only support was his ‘ independence’ from his family.
So at 17, he was removed from his Mum, Dad and sisters to his own 24/7, 24 hour carer attended bungalow owned by Homeleigh Ltd, now bought by Cambian, complex .
But his ‘independence’ did not even afford him freedom from abuse.
For 6 months, a 4ft 10 inch Thomas was kicked by a large 54 year old experienced worker, into his bedroom , his fingers bent back with the words ‘lets see how many I can break this time ‘.
This was two years after Winterbourne View aired.
The Recorder said, ‘We have to respect those who care for our young disadvantaged’ .
Thomas was then removed from Homeleigh to an Adult Treatment Unit for more medication, as workers said he distrusted them.
Paula gave her job up to care for Thomas but couldn’t get him back.
As Thomas was worth too much – over £6,000 a week to ‘independent’/’community living’ as under 25, paid by LA. NHS and D of E.
And £9,000 a week to a mental hospital.
Thomas was the first inhabitant in his new ‘home’ Kingdom House in Sheffield, opened a month earlier, it had not yet been inspected by CQC, and was still half empty when he died .
My own daughter was to be taken there, the very day Thomas died, after stabilisation in a holding bay.
A care worker remarked to me, ‘They are rounding them up and making pin cushions out of them.’
But Thomas would not be beaten into submission, his spirit was indomitable, and he died.
The Coroner postponed his inquest in July 2016, to allow an investigation by NHS England .
This investigation would determine the remit and evidence of any subsequent inquest.
Already Paula had had to crowd fund to pay for a lawyer and toxicology reports.
NHS England commissioned Thomas’s Cambian ‘Care’ via Sheffield Clinical Care Commissioning Group from Sheffield Health and Social Care Foundation Trust, a private company since 2015.
So NHS England would be liable if it found Cambian caused , or contributed to Thomas death.
Although the tax payer Paula would pay the bill.
Below is a reminder of Thomas’s fate in pictures taken by Paula.
Think of the many not photographed , as deaths under MCA DOLs and MHA soar.
With just 1% even internally investigated and even less inquests will be held when Medical Examiners are appointed in April.
With no juries or legal aid available at inquests for those, like Thomas ,dying under a Mental Capacity Act Deprivation of Liberty Safeguards .
Paula’s words posted before Christmas,
‘This time of year isn’t just hard because my son isn’t here to spend it with(although that’s hard enough on its own). Its the memories of a child’s suffering(my child)of him crying for me and begging for help, its memories of him telling me people are hurting him, of people dismissing us when we were screaming out!! ‘
Follow up message to Caroline Dinenage, Minister for Adult Social Care and Disabilities.
Further to my email of the 19th February and my proposal that the terms of the Oxfam judicial review should be extended, I feel obliged to submit further justification.
There can be little doubt that the indiscriminate dismantling of vital support services for people with learning disabilities has left current and future care in the community policies in total disarray. Much trauma and distress for the families affected could have been avoided if significant lessons that should have been learnt from history had been taken on board.
Regrettably, therein lies another major problem that deserves closer scrutiny, the historical evidence relating to the most critical era in the history of support services for people with learning disabilities has by default or intent been omitted or blatantly covered up.
One has only to look at the ‘Timeline of learning disability history’ published by the Open University, with the approval of numerous other UK Universities, to recognise that there are glaring gaps in the period when sound evolutionary policies were being transmuted into ‘politically correct’ dogmas that have since proved to be disastrous.
This has been the work of a relatively small group of ‘would be pioneers’ who inherited a legacy from the real pioneers who had successfully set in progress the foundation for rational and achievable care in the community policy. A legacy that has since been decimated and thrown away.
Incredibly, the small group allowed themselves to be brainwashed by a few individuals who fulfilled their own limited agendas. But where were the mass of other intellectuals and academics who permitted this to happen at immense cost to the victims?
An extended judicial enquiry is surely warranted to explore thirty years of wasted financial and human resources, and more seriously, the human suffering that has arisen because of irresponsible responses to misinformation?
For the attention of Caroline Dinenage, Minister of State for adult social care.
Re Oxfam judicial review
It is very sad that a judicial review has become necessary under such circumstances, but a judicial review concerning the conduct of major charitable organisations dealing with vast amounts of taxpayers and voluntary public donations is long overdue.
As Minister of State overseeing adult social care, the Department of Health and Social Care, Caroline Dinenage has been given an impossible task. She has a responsibility, on behalf of carers, and in the interests of her new role, to press for an extension to the current judicial review on Oxfam. This should include the criteria upon which ALL charities appoint paid CEOs, and to the extent to which major charities have been allowed to misuse their resources and influential power recklessly. As a consequence, adverse influence on policy direction has directly threatened all levels of people with learning disability, particularly the most profoundly disadvantaged.
Extended correspondence with successive Mencap CEOs led me to point out to Janine Tregelles, current CEO, on the 31st January 2017, “…..that Mencap’s executive team comes over as a team devoted to accumulating money and controlling large numbers of staff as the corporate side of the business continues to grow”. It would seem that, as Mencap HQ has grown richer, service support options for its membership and fellow sufferers within the community have got increasingly poorer. Janine did not agree, hence my continued pressure for open debate in the public domain. Something is seriously amiss if the taxpayer, and the public who are constantly pressurised for voluntary contributions, are footing the bill for expensive corporations who now seem so out of touch with their original purpose for existing. What better option to restore sanity to future rational and achievable policies, than a judicial review before care in the community is irretrievably lost?
I have recently had personal correspondence with Gareth James, formerly the Lead for Dementia and Disabilities, who, although very polite and amicable, regrettably clearly did not grasp the complexity of the task with which he was burdened. Can there be the hope that Caroline will have a wider perspective?
The appointment of Caroline Dinenage as Minister of State overseeing adult social care, the Department of Health and Social Care could be the political ‘kiss of death’ for Caroline, or the first glimmer of hope for the 1.4 million families with members who have learning disabilities. It could well be that she will be the first Minister since Enoch Powell in the 1960s who has shown genuine concern for this vulnerable and disadvantaged section of our society.
But first, there must be recognition that care in the community is in terminal decline. The hemorrhaging of vital services over the years, and the cover up of the betrayal of these people by academics and major charitable organizations responsible for their welfare, needs to be scrutinized and debated. Will this happen?
Extremely doubtful, for to hand back responsibility for social care for people with learning disabilities to the Department of Health in the light of its past dreadful performance (Institutions and the ‘chemical cosh’), suggests that absolutely nothing has been learnt from social history.
For further insights and information, please refer to my website http://learningdisabilitiesproblems.co.uk
Emails to national Press January 2018
NHS/Social Care Policy Dilemma/ Summary
Rarely has there been a greater need for transparency, rarely has there been such an extended cover up. There are estimated to be about 1.4 million people with learning disabilities of all levels of severity and complexity in the UK. Along with their carers, untold thousands of these people have suffered grievously from the policy vacuum brought about and extended over many years by individuals and organisations who were charged with protecting and supporting them.Where openness should have been encouraged it has been suppressed, where the truth could have given hope it has been distorted. What could have been developed into a rational, comprehensive, financially sound, and equitable national care in the community policy has disintegrated into a debacle. Handing responsibility for Social Care back to the NHS is not a solution – unless Jeremy Hunt recognises how incongruous this is and sets up a separate division entirely from the medical/surgical model. Otherwise, if a society is to be judged by the way it treats its most vulnerable citizens the UK will have failed abysmally.
Attached is a summary embracing the broad events of the past half a century. This is supported by a wealth of information and documentation accumulated over many years. It is not for sale, but is available free to any well-motivated investigative journalist who believes that justice for these people will not prevail until the controversial issues that brought about such scandals as Winterbourne View are debated openly in the public domain. …………………….
In the 1950s/60s the ‘medical model’ was the order of the day – a combination of institutional care and medication – the ‘chemical cosh’, I believe it was termed. 50,000 adults and children were incarcerated in large 1000 plus institutions. The Health Service dominated responses to the needs of the learning disabilities section of our society Only about 4000 day care support places were available for those fortunate enough to remain in the community.
Now, in 2018, the NHS is again taking control of responding to the needs of people with learning disabilities, the principle of building large institutions has been approved by the government, and there is no clearly defined strategy for restoring meaningful day care.
The clock has turned back half a century yet there is hardly a bleat of protest. So, what has gone wrong?
In the 1960s it was accepted that the ‘medical model’ was a total failure and care in the community was the humane alternative. Through the efforts of Enoch Powell and humanitarian professional psychologists the process of enabling 50,000 people with all manners of challenging behaviour to escape from incarceration in institutions began in earnest. With only 4000 places being available at the time this was a mammoth task, the success of which is in no way appreciated today. Leading the way, dedicated Professor Alan Clarke, supported by his wife, Professor Ann Clarke, had by the mid-1970s encouraged and supported an extensive range of alternative options available for those in need of all levels of support and their carers. By the mid-1980s there was still much to do but a policy strategy had been set up that could form the basis for the development of an equitable national policy. But it did not happen!
Why did this not happen? Simply because the direction and determination of policy was taken out of the hands of dedicated experts by a group of individuals who had their own agendas but were too inexperienced to recognise their own limitations. And so, began the descent into the morass that care in the community has become. For 30 years the government has been taking advice from the wrong people, and for 30 years service users and their carers, by default or intent, have been victims of the biggest corruption of service policy in social history.
Until the extent of the betrayal of trust by the organisations and individuals (major charities and academics) who should have been fighting for their rights has been exposed, nothing will change. The government will continue to take the wrong advice and those individuals and organisations who have their own agendas will continue to give it.
The NHS is a medical and surgical resource and needs to retain and consolidate its identity as such – that is what the massive surge to protect the NHS is rightly about. The overall needs of people with learning disabilities will not be taken into account – the NHS are not and never will be a social care resource.
Carers will not get a fair deal until their needs are responded to by a service structure that fully understands their problems. Giving responsibility for learning needs to local authorities in the first place was a disaster – to leave it with the NHS could be catastrophic. Until there is an appropriate Department with its own Minister nothing will change for the better.
Charles Henley http://learningdisabilitiesproblems.co.uk