Belated catch-up. 

My apologies: on the 7th August I posted a similar blog on the bulletin of my own website: http://learningdisabilitiesproblems.co.uk   and on WordPress, referring to an email I had sent to the Department of Health for the attention of Sir Chris Wormald, Permanent Secretary of State. His, apparently, is the most powerful positon in the National Health Service.

Based on years of personal experience and ongoing research, this email referred to the appalling deterioration of provision of services for people with learning disabilities over the past 50 years. This was due to the power to control policy direction being taken out of the hands of experienced and caring people and given to others with little knowledge and experience. Whilst they may well have good intentions these intruders rarely have sufficient experience or insight to recognise the complexity of the widely ranging problems that need addressing. These are people I term ‘fringe people’, who most often also fail to recognize their own limitations

More of this later, the point I wish to make concerns the reactions to my postings. Although I was aware that the people most responsible for the decimation of UK services were intent on spreading misguided and irrational polices further afield, I had hoped that they had not been successful. As I have previously mentioned on my posting of the 13th August, on Wednesday August 9th I received responses from Germany, Switzerland, Norway, Netherlands, Australia, Canada, Brazil, and another from France on August 10th.

As the points that I am raising are largely ignored in the UK, except by a small band of dedicated and insightful supporters, it is interesting that internationally, with few exceptions, these messages were appreciative of being provided with basic awareness concerning the alarming direction of policies in the UK and how this came about.

I have so far failed to provide the further information I promised and will now try to set this right by posting a series of blogs posted earlier this year on my Charles Henley Facebook. These were intended to awaken UK carers to the sinister way that policies that were proving successful 30 years ago were undermined and decimated and have led to the decimation of support services and the risk of a return to further re-institutionalization.

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First posted 10th February 2017

The value and reputation of day centres has been taking a hammering over the past months. In the interests of looking at Day Centre issues from the carers point of view bear with me if I enlarge on my previous statement that the outlook for carers and their family members was better 50 years ago (when I first came into this work), than it is now.

For elderly parents the 1950s/60s era was a painful experience finding most of them spending 24 hours/7days of the week/52 weeks of the year looking after  disadvantaged family members rather than despatch them to a totally segregated and impoverished lifestyles in remote and overcrowded residential institutions.

.The running down of these institutions in the 1960s saw a governmental change of attitude with recognition of how dependent it was upon parental support to enable  these newly freed people to remain in the community.

Supported by Mencap {until the 1980s), carers groups pressed for and supported additional day centre capacity. For carers this meant 5 working days respite every week, some could take up jobs and others have a life of their own; they could be deeply involved in programme planning for their adult children, in the early days meals and transport being provided free. Day Centre Parents groups provided mutual support, and bonding with staff inspired confidence and continuity in joint training projects.

By 1980, not only did carers have continuous weekly support, but staff gave their time to run yearly holidays for the attendees and enabled carers to take an away yearly break themselves. Day Centres became vibrant community centres created by the input of positively motivated carers who also welcomed the introduction of sheltered workshops for the more able people.

Those experts leading evolutionary service policies at that time had the insight and experience to complete a policy that would meet the approval of carers of people with all levels of ability – but they were denied the opportunity

Turn the clock fast forward to 2017 and what sort of deal are carers getting instead? The pressure is so great for day centre places that families are having to struggle to get a day or two of respite whilst their offspring lack the continuity that specialist and structured services could provide.

Centres are being passed back to voluntary and privatised sources whilst personal budget holders are left to purchase services at random from possibly dubious and psychologically damaging resources. Individuals have had to resort to setting up private enterprises again along the lines of those functioning well in the 1980s. Mutually supportive day care and special care units have been phased out of a continuity of opportunities for the most profoundly disadvantaged, whilst sheltered workshops and Remploy have been terminated despite the strong resistance and protests of those who worked within in them.

Currently, there is no clear indication that an achievable national strategic  policy has been identified, nor how relevant the experience and qualifications are of those responsible for the present policy debacle.

In the 1980s carers saw and supported undeniably positive changes being put in place by experienced and caring pioneers. Today, they see the outcome of policies built on unproven dogmas and unrealistic expectations tearing rational care in the community apart.

For years I have believed that carers have been victims of the cruellest confidence scam in social history. That this continues leads me to cynically question whether this is all a part of a much deeper calculated process? Is the final objective to ensure that at the end of the day, the whole problem of taking care of the immensely complex problem is being dumped right back into the hands of the carers?

This could not possibly have happened in the 1980s when the strength of the unity of Day Centre families could have prevented it, but tactics being being followed currently have not only diluted this strength, but has set different sets of carers against other sets of carers. In this divisive situation, anything is possible.

 

Questionable alternative policies for people with learning disabilities.

On the 19th January, Simon Duffy, the Director of the Centre for Welfare Reform, made a policy presentation to a group of Commissioners responsible for financing services for people with learning disabilities based on the theme of ‘Who Put Out the Fire?’.

In a policy document published under the same heading he introduced emotive elements such as ‘ghettos’ in the drive for deeper ‘inclusiveness’ that he felt was fading.

Having had time to reflect on the wider content I noticed that there were several other issues where the accuracy of his statements justifying extreme inclusiveness could be called into question. I felt that these should be brought to his attention and append my submission and his response.

I submit this for general consideration for the benefit of all who may have read the Centre for Welfare Reform policy paper and perhaps assumed the content concerning ’inclusiveness’ was 100% accurate.

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Dear Simon,

Re: ‘Who Put Out the Fire?’

A little late, but I would like to comment on the views expressed in your talk to the commissioners responsible for services for people with learning disabilities in England on the 19th January.

You expressed concern that there no longer seems to be any significant passion or momentum for inclusion or for further deinstitutionalisation.  You seem surprised that “Things are beginning to roll backwards, and unless we change our behaviour, things will get much worse”.  This has been obvious to untold numbers of suffering carers, predicted over the years in reputable ‘trade’ journals, but generally widely ignored or suppressed by those who have set themselves up as ‘inclusion’ experts.

I have raised this issue with you at length before when pointing out that rolling backwards began 30 years ago when radical normalisation/inclusion dogmas were based on irrational and fundamentally flawed fantasies. Self-proclaimed experts ignored the judgement of the real international experts that the ‘inclusiveness’ being preached was totally inappropriate for profoundly or severely disadvantaged people.

You point the finger at Valuing People as partially responsible and I agree with you. To publish a paper that supported a flawed ‘inclusion’ dogma without coming up with defined alternatives and clear strategic guidance on how to achieve them was totally irresponsible.

I was pleased that you acknowledged that the 1960s and 70s were the times when inspirational leaders emerged, but you seem to have totally misled yourself about the historical role of Professor Wolf Wolfensberger who rightly has been accepted internationally as the most prominent champion of the rights of people with learning disabilities.

Wolfensberger gained his zeal from a year spent in England with Professors Jack Tizard and Neil O’Connor (1962-63) when he was highly impressed by the ‘spectacular achievements’ being made in England to get institution inmates into the community. But Wolfensberger has made it very clear that he rejected any suggestion that he believed in the ‘inclusiveness’ that was being promoted in his name. Significantly, to the contrary, he also supported the specialist and structured services that were successfully evolving in the UK in the 1970s/80s, under the leadership of Professors Ann and Alan Clarke. These were the true leaders who ‘challenged the norm’ and paved the way for community life to replace institutional care.

You refer to Mencap and other similar organisations ‘earning their leadership through a process of challenge and creation’ but this was not so. Clear evidence confirms when the King’s Fund Centre set out in 1984 to decimate specialist and structured services and introduce a one size fits all ‘get them all into paid employment and close centres’ policy, Mencap not only failed to challenge these bizarre proposals but supported them. With regard to paid employment for people with severe handicaps I quote a Wolfensberger  statement: “No matter what they say, it is lies, lies, lies, and more lies, Rehab programs and work training programs, very few people will end up with paid jobs”.

You also suggest that the Campaign for Mental Handicap played a positive role when, in fact, it was reinforcing negative proposals that could seriously decimate essential services.  Significantly, again, its proposals were based on wishful thinking and it failed to identify realistic and achievable alternatives.

You are quite right in acknowledging that the positive changes that began in the 1970s were led by people and professionals, starting from where they were then. “They got organising, supporting, and campaigning. That is how things really change”. You are so right, and it was their efforts that eventually enabled over 50,000 to leave institutions and experience a wider community lifestyle. Their policy too, was based on group homes, day centres, respite services, and care services, but it was an inspired quality option that offered a wider variety of choices and skilled dedication and commitment in the 1970/80s than is available in 2017.

I feel that your proposal that “the architects of new and inclusive communities will be the people themselves” is simply a forlorn hope. The pleas of those who have fought hard for decades to retain a continuum of opportunities through special needs units, day centres, resource centre concepts, sheltered workshops, Remploy, and even voluntary and paid employment have been completely disregarded.

In your opening statement, you comment that: “overall the passion that that used to exist to bring about positive change has evaporated. In fact, in some places, we see things going in to reverse”. The reality is, Simon, that this passion has not evaporated but has been relentlessly undermined and destroyed by people who lacked the insight, experience, and knowledge to recognise the difference between realistic and rational aspirations and impossible idealistic fantasies.

The problem is that academia and misguided intellectuals have mainly succeeded in wiping out of social history the 1970s/80s successful evolutionary period of history from which there was much to learn – not least from the people concerned. The attempts of the true leadership to open greater opportunities for people with learning disabilities to be enabled to lead more fulfilling lives in the community have been misinterpreted and destroyed, instead the clock has been turned back half a century.

“The kind of community that can welcome each of its members” that you envisage is a wonderful and commendable notion, but far from helpful when it detracts from the realities that carers and their children are having to face. Does not the current debacle that exists regarding care in the community outcomes surely confirm that pursuing an extreme form of well-meaning philosophy has negatively changed policy direction over the past 30 years?  Good intentions and the law of unintended consequences?

With best wishes,

Charles.

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I append Simon’s response to the above posting.

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Simon Duffy                                                                       6th June 2017 at 14.49

To: CHARLES HENLEY

Re: Who Put Out the Fire?

Dear Charles

I appreciate your point of view, even if I don’t agree with many of your precise judgements. I guess the joy of diversity is learning to live respectfully with differences of perspective.

best wishes

Simon
Simon John Duffy

 

And so, it goes on – one of the biggest scams in social history.

And so, it goes on – one of the biggest scams in social history – how the fate of an inestimable number of innocent victims with learning disabilities has been transformed and traumatised by the irrational, almost bizarre, speculation of otherwise seemingly intelligent and highly educated people. It is an unbelievable but complex story based on the abbreviated version that is outlined below. This is to introduce newcomers to the disastrous negative change in social policy brought about by unwise and irresponsible decisions which defy credibility.

As a former practitioner and independent campaigner, I have attempted to alert successive governments and major charities to the immense waste of human and financial resources that has arisen since sound basic care in the community policies were set aside. Eminent humanitarian pioneers with immense hands-on experience introduced rational evolutionary policies in the late 1950s/60s that eventually enabled 50,000 inmates to be resettled successfully from large institutions into community settings.

Good progress was being made until local authorities came to exercise full control of policy direction and implementation in the mid-1980s. Although they had been delegated this authority since 1971, initially implementation was left to experienced practitioners under the guidance of experienced pioneers. By the late 1980s this guidance structure was supplanted by radical advice from sources committed to extreme but questionable ‘normalisation’ theories. This precipitated a spiral of decline in service support that has led to the turmoil that currently surrounds existing care in the community policies.

A series of reputable publications by major charities have charted the increasing trauma that tens of thousands of families have experienced during recent decades. Clearly, the complexity of the problem has not been fully recognised and finding a solution has been passed into the hands of middle management administrators, charities, academics, and private enterprise speculators who have neither the knowledge nor experience to address such a mammoth task. This provides little hope for a return to the equitable, stable, and comprehensive support service that was in the process of being achieved over 30 years ago. In fact, verifiable evidence confirms that the outlook for people with learning disabilities is considerably worse now than when I came into this area of work 50 years ago.

The most vulnerable members of our society need and deserve a service influenced and implemented by leaders sufficiently experienced and knowledgeable to fully recognise the complexity of the problems that these people and their carers face. Only then will movement proceed towards providing a continuum of opportunities that offers individual fulfilling lifestyles and builds bridges towards closer involvement in ordinary community life. This will never happen whilst the current fragmentation of policy leadership and policy direction remain subject to the whims of local authorities and Commissioners. This surely provides strong justification for a positive response to the plea for the formation of a single service agency with its own delegated Minister.

Justice for People with Learning Disabilities

Reverse current direction of care in the community policies

Why is this important?

Recent Channel 4 ‘Under lock and Key’ documentary confirms that rational care in the community is being turned back.

Recent Channel 4 ‘Under lock and Key’ documentary confirms that rational care in the community is being turned back half a century
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Restore justice for the disabled
The coming election is an opportunity for carers to pressurize their potential MPs for dramatic change to humanitarian policies – but not only carers, but the general population at large who do not realize the intense pressure that their neighbours are under.
In my line of work, learning disabilities, I have seen this worthy section of our society cheated out of the quality of service they need and deserve.
Carers, desperately need the support of the general public, for parental commitment is not just for the relatively short time that we fortunate ones experience with children who eventually fly from the nest to lead their own independent lives, but for a whole lifetime. This can be into their 70s and 80s, when, sadly, too often they live in hope that their children will die before they do.
These people all, to a greater or lesser degree, need the stability and continuity of specialist and structured input regardless of location; there should be no post code lottery.
Many years ago, for a very brief time they had the prospect of a fulfilling service influenced by caring humanitarian professionals and implemented by dedicated practitioners. But this was not to last as influence and implementation of policies was taken over by local authorities and self-proclaimed experts who pressurized a one-size-fits all model of extreme inclusion.
The contention of the extremists was that relationships between people with profound or severe disabilities were of an inferior nature and against their best interests. They were not ‘valued’ people and would never become ‘valued’ people unless they were involved in community activities with ‘normal’ people and could learn from their role models.
However well-intentioned, this ‘normalisation’ concept was out of touch with reality. The overwhelming majority of these people were already within communities where they were ‘highly valued’. Their special needs were being met whilst they were encouraged to broaden out into the wider world if they had the wish and capability to benefit from it.
In pursuing their own agendas, the extreme inclusion lobby broke up happy and contented residential and day care community groups, deprived them of lifelong friendships, and plunged their lives and those of their carers into lives of loneliness and uncertainty. No effective research had been carried out, the extreme inclusion policy was based on unrealistic wishful thinking.
At the top end of the scale, the more able people became deprived of opportunities of sheltered employment in local authority workshops and Remploy which closed because the extremists contended that working with other disabled people “stigmatised and segregated them from the community”! Nobody fought harder to keep these places open than the people with disabilities who worked in them!
But nothing has been learnt, for the original flawed one-size-fits-all dogma has been superseded by yet another one-size-fits-all proposal that does not stand up to close scrutiny – the bespoke personal budget care package.
This would be a reasonable option for many if it was affordable but it is public knowledge that financial support for adult social services is under extreme pressure and cuts are already being made extensively. If, in fairness, this option would be available to the 1.4 million people all in need of support of some description, the cost of meeting demand is unimaginable. The highest amount I have seen on record is a budget of £650,000 per year to meet one person’s individual expectations.
Current policies are not solving current problems; there is already a lack of appropriate community support services available to enable about 1500 people locked into NHS care to be freed into the community within the next two years.
Billions of pounds have been poured into a deep black hole over the recent decades because policies have been influenced and implemented by more than 120 town hall administrators – this has now been extended by a substantial number of Commissioners.
The impending election offers an outstanding opportunity put an end to this utter waste, and demonstrate that a new government will put humanitarian values above party political needs. All levels of disability are under pressure and need consideration. There are no easy answers, but for those with learning disabilities historical experience has shown that there have been better solutions.
50,000 people were liberated from institutions when policies were influenced and implemented by experienced and caring leaders and practitioners. This period of development has been airbrushed out of history – but it needs to come back. There are still people capable of bringing it back and leading a single service agency with its own Minister that could revitalise the outlook for people with learning disabilities at all levels.
The forthcoming election provides an opportunity to assess the calibre of those seeking election or re-election. If we cannot get a cross-party mandate right for the most profoundly disadvantaged and deserving people in our society, what hope is there for the rest?