The Delusion of Inclusion

CATCH UP No.6

First published my Facebook page 25th February 2017

The first posting appended is a comment from David Towell, a spokesperson  and former leading figure in the Kings Fund Centre around the late 1970s / 1980s when the action was taking place.

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David Towell. Those of us who have taken the trouble to read many of Charles’s very many postings over the last 30 years will certainly know by now that he is forever stuck with the idea that a 1977 pamphlet from the NDG should remain, 40 years later, the peak of our aspirations for the daily lives of people with learning disabilities. Fortunately, many people working locally, like Lawraine and her network have demonstrated that a better world is possible for Lawraine’s daughter and indeed everyone who can find a similarly supportive network, despite the hugely damaging effects of ‘austerity’ on people who need the help of publicly funded services. (Actually that is all of us.) Meanwhile the highest authority the world has created in the defence of human rights, the United Nations, has generated international support for a Convention, the UNCRPD, which Charles would doubtless describe as based on ‘extreme normalisation/inclusion dogmas’ whatever that means: it’s not, it’s based on the 1948 Universal Declaration of Human Rights.

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My response the same day on Facebook (25th February 2017

‪Charles Henley‪ An interesting response, David, but you are a little out of date. In my book: LEARNING DISABILITIES The Rise and Potential Demise of Structured Day Services for Adults with Learning Disabilities 1955 – 2005, sent to you April 2007, you will find I covered the later Declaration of Rights (1975) fairly comprehensively.

What I mean by ‘extreme normalization/inclusion dogmas’ are of the nature of the irrational proposals put forward by normally reputable organisations such as the King’s Fund Centre in 1984.and subsequently by the Independent Development Council in 1985. These encouraged the decimation of successful structured and specialist services including special needs sections in day centres by proposing that all of the attendees could be found paid jobs or spend up to 4 – 5 days per week for years at colleges of FE. I still await , as I have done for many years, your justification for such irresponsible proposals.

‪In the meantime, I add the comment made in my book with regard to the UN Declaration:‪ “It is worthy of note that whilst the UN declaration proposed that handicapped people should benefit from the right to have access to ‘a life as normal and full as possible’ it did not contend that this should preclude associating with their own peer groups. Nor did it imply that to share the company or activities of other handicapped people is demeaning or devaluing. It will later become apparent that these perceptions were, however, strongly held by some influential factions of the ‘normalisation’ lobby and were instrumental in supporting calls for extreme radical change. This major divergence of opinion was to become one of the major issues in subsequent debates – and still remains a central issue of dissention at this present time.”

‪You have been living in another world, David, I note that when you sought support 35 years ago you did not turn to the real hands-on international expert on ‘inclusion’ theories, Professor Wolf Wolfensberger (USA), but instead to another of the ‘thinking’ and ‘philosophizing’ breed.

‪There is still much to be debated if events affecting the interests of carers, their adult children, and the general public are to be to be explored and fair judgements made. I will be making my own comments on my facebook page and welcome you to join me with your own unmoderated comments. Charles Henley

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Direct Contact with Senior Government Leaders.

Last week I received a cordial response to my email of the 7th August to Sir Chris Mormald from Gareth James who is the Government Lead for Policy and Strategy /Dementia and Disabilities. Gareth outlined in detail why he believes the present policy to be on course and making headway. Unfortunately, although I do not doubt his sincerity and goodi ntentions, I fear he has been grievously misled. Accordingly, I have sent him the following response.

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Dear Gareth,

I thank you, and Sir Christopher, for your detailed and interesting response of the 20th September to the points that I initially raised. However, I regret that these do not allay my concerns that the current learning disability policy is representative of a rudderless ship heading for the rocks without a captain at the helm. The failure of your predecessors to exercise due diligence before accepting and implementing policy guidance, coupled with the failure of contemporary academics and charitable organisations to effectively explore and challenge questionable doctrines, has had catastrophic social and financial consequences. There is ample evidence to support the opinion that sound and viable policies were displaced by misguided and blatantly irrational theories and that the effects have been covered up for decades.

The core issue has been the distinction between ‘evolutionary’ and ‘revolutionary’ principles. The conviction held by practitioners and realists, based on the pioneering work of distinguished academics of the 1950s/60s, is that structured and specialist input should be applied where necessary to meet the needs of people with all levels of ability – this worked!  On the other hand, revolutionary academics and philosophers believe that a welcoming community will take care of all needs at all levels, mainly by getting everybody into paid employment – this has manifestly not worked!

The latter group could be termed ‘fringe people’ as, invariably, they have been involved in one or more aspects of very complex areas of need and fixated on these whilst ignoring the bigger picture. Yet it is this group that have had the power to manipulate policy direction for the past quarter of a century, and have now embedded a mind-set in their current peer group that perpetuates misguided idealism. Unless the fragility of their doctrines is exposed, this will continue to hold back any hope of progress towards a rational, viable, financially sound, national policy.

50 years ago, along with the Scandinavian countries, we were recognised as world leaders in this field. Today, recurrent scandals such as Winterbourne View, which were predictable and avoidable, emphasize just how low our international reputation and standards have sunk because of politically correct speculation.

For many years, I have appealed to influential individuals and organisations, personally and through publications in professional journals, for an objective and informed debate in the public domain. As recent events confirm that the ‘fringe’ element are still ominously active and influential, I no longer consider this to be the solution. The amount of human suffering and waste of taxpayers’ money are of such magnitude that surely the irresponsibility of your predecessors should be called to account, and carers and frustrated practitioners should be enabled to have their voices heard.

You have a critical role within which you are dependent upon accurate and verifiable feedback. Regrettably, it is patently clear that even, at the highest levels at which conferences are taking place, the government continues to be misled by the distortion of the developmental history of learning disability policies. I now believe it is in the interests of all concerned that former damaging misconceptions should be rectified and the role of ‘fringe’ elements critically scrutinised. It would appear that something like a Judicial Review would provide a more appropriate solution.

Yours sincerely,

Charles Henley

Catch Up No 5 The Delusion of Inclusion

 

Charles Henley
First posted on Facebook 23 February ·2017
Further to yesterday’s facebook posting – “who supported the King’s Fund Centre in the early and later 1980s”?
This refers of course to the KFC proposals in 1984 that getting all people regardless of severity or profoundness of learning disability into paid jobs would justify the withdrawal of specialised and structured support. This would include special care units within day centres.
The answer raises many questions that have never been effectively debated with the outcome being a failure of successive governments to restore stability to a formerly rational care in the community policy.
The KFC gained its initial main support from Mencap, followed shortly afterwards by local authorities (LAs), and ever since by the support of a succession of consultants to whom LAs have turned for guidance. (Much more to follow on this later.)
The painful truth is that there are no longer recognised experts on policy direction such as the Professors Jack Tizard, Neil O’Connor, Alan and Ann Clarke and Herbert Gunzberg who promoted genuine inclusion policies so effectively in the formative years of care in the community. There remains just very few followers of their calibre and quality, but they are overwhelmed by a mass of misleading information and lack of support from influential sources.
Local authorities, having disposed of their experts in this field, especially experienced mental welfare officers now turn to individuals and organisations that have set themselves up as ‘experts’ in the vacuum that followed. Yes, there are real experts in areas concerned with specific aspects of learning disabilities who rightly deserve recognition – but not concerning policy direction.
The current state of policy direction speaks for itself as it appears to move away from the values of hands-on experience and come under the domain of philosophers with a wealth of imagination.
Hence the need for open debate so that the voices of genuinely concerned carers can be heard. In this respect, I still await a response from Mencap re my proposal that they sponsor an independent debate in the public domain!
In the meantime, as my next posting will outline,, I am prepared to use my own facebook page as an interim option to raise further questions about how seriously carers have been misled and their family members deprived of choice

CATCH UP No 4 The Delusion of inclusion First posted Facebook February 22nd 2017

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Charles Henley The Delusion of Inclusion
Before referring to the connection between the central items mentioned on yesterday’s posting I must point out that the process of change of policies takes time – years in fact.
As an instance, current policy shambles are hardly testimony to the success of ‘Valuing People’ (2001), which, despite the attempted resuscitation, ‘Valuing People Now’ (2009), appears to have done little in fifteen years to avert or remedy the effects of the Winterbourne View scandal – or halt the continuing spiral of decline in service support.
Time then to return to the remarkable progressive advancement in day service modernisation between the publication of National Development Group Pamphlet 5 (1977) and the totally misleading and denigrating publication of the King’s Fund Centre’s, ‘An ordinary working life’ (1984) – a mere 7 years. This exposes and confirms the fragility and danger of the foundation upon which current extreme normalization/inclusion dogmas have been built – not just nationally, but internationally!
The King’s Fund Centre working group had clearly not fully read or absorbed the extensive work carried out at the Hester Adrian Research Centre – or carried out detailed research of its own. Although the King’s Fund Centre’s advisory panel were aware of the potential risks of re-institution being a high possibility they still encouraged the decimation of services vital to the wellbeing of the most severely and profoundly disadvantaged victims of today’s policies.
More tomorrow; who supported the KFC in the early and later 1980s?

The Delusion of Inclusion – Catch Up No.3

 

First posted Facebook 21st February 2017

The Delusion of Inclusion – will it be exposed in time to reverse the ultimate termination of care in the community?
And so we roll into 2017 with daily debates reminding us constantly of the chaos that surrounds social care funding, and the seemingly total failure of the NHS/local government organisations to identify a clear strategy to enable inmates in NHS and ATUs to escape from truly segregated establishments.
Every week that goes by ensures that carers and their families become more entangled in the web of duplicity that current policy makers have created to meet their own agendas – yet, amongst the carers there are sadly “none so blind as those who do not want to see”!
Those people most profoundly and severely affected still have most to lose as the “delusion of inclusion” continues to control policy direction. This is inevitable until the historic values preached and practiced by the original pioneers of rational care in the community policies are resurrected and valued for what they can offer – especially to those in ATUs and NHS beds.
So far, I have only drawn attention to the bizarre intervention of the King’s Fund Centre (KFC)I in 1984 that gave extreme normalisation/ inclusion dogmas unjustifiable and irresponsible credibility. This has grown so much out of proportion internationally there is need to look closer at its origins. The KFC document at the time was so irrational that it would have been treated with contempt and bypassed had it not received highly dubious and unwarranted support and publicity. Mencap and other local authorities have much to answer for in this respect. More tomorrow.
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In closing today, I must mention a positive aspect of social history which will have a great deal of relevance with regard the information that is yet to follow. It is significant to note that whilst the proposals of the KFC were based on fantasies and conjectures, the successful development of day services in the 1980s was based on extensive research much of which was carried out at the Hester Adrian Research Centre, Manchester University in the 1970s under the supervision of Professor Peter Mittler.
Two highly important publications that followed were ‘A national survey of Adult Training Centres in England and Wales, (1977), and National Development Group Pamphlet 5 (1977) which gave extensive and detailed advice regarding the future modernisation of day centres.
This advice was warmly welcomed and acted upon by progressive day centre management with remarkable results. The negative outcome and the consequences that were to arise through the intervention of the King’s Fund Centre and its manipulation of the role of the National Development Group are open to question.

Injustices – Catch Up No.2

First posted 14th February 2017

Today I have partially updated the Bulletin Board on my website with information that raises questions about the issues that should be seriously worrying carers. They are questions that need to be answered if there is to be true justice for the most vulnerable section of our community. They will not be answered if carers who have been victims allow those who are responsible for their predicament to get away unchallenged.
It is now two weeks since I sought answers from Mencap. Early days, undoubtedly, for Mencap has a lot to account for. Ample evidence confirms that Mencap have not only been fully aware of the predictable outcome of the demise of rational care in the community, but they cooperated with the King’s Fund Centre over 30 years ago to set in motion the chaos that ongoing policies have become.
For years, I have argued on various debating platforms and in the media to let the public and carers know how effectively they have been duped, but without success. The principle reason is that the people who created the problem are those that have the power to distribute or suppress relevant information and they have used it unscrupulously. My website has been available for years and all charities have been aware of the means of access to it but to little avail.
The future bleak outlook will only change when carers recognise how blatantly they have been cheated and take full advantage of any opportunity to debate controversial issues in depth to reach balanced judgements. This is obviously not happening and will not happen until there is a sharing of verifiable information between carers groups.
In the meantime, I still await a response from David, the spokesman for the King’s Fund Centre group, for his justification for setting in motion the one-size-fits-all answer to care in the community support. Basically, it was to scrap all specialist and structured services like special needs units, day centres, and sheltered workshops and the like, because his group thought that even the most profoundly and severely and complexly disadvantaged people should be found paid and open employment!
Need I remind you that all the specialist resources from special needs units to Remploy have been decimated yet few extra jobs have been created in the 30 years since this extreme ‘inclusion’ policy took over from the successful policies that were in place before. Neither will they be created in future because this proposal was not built on research but on the wishful thinking of a group who had limited in-depth awareness of the complexities of the learning disabilities section of our society – and were out of touch with the real world that the rest of us live in.
I would ask all carers to just reflect on how much their lives have been affected by changes brought about by misinformation and emotive campaigning like the ‘segregation’ and ‘stigmatisation’ lies. But be warned, just as these past falsehoods are being recognised they are about to be replaced by yet another emotive buzz work, look out for it – ‘GHETTOS’. Please feel free to circulate my views if only to open up another aspect of the complex social problem that has yet to be resolved, and feel free to circulate my website details.

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.