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Charles H
Nov 21 2013 20:58 PM Post #42

LEARNING DISABILITIES: A BOLD VISION - OR the ULTIMATE BETRAYAL?

Attempts to broaden debate and open up public knowledge and discussion would not be complete with reference to my frustrating, at times depressing, and certainly not inexpensive venture into self-publishing.
Having approached a number of established publishing companies without success or prospect of success in the foreseeable future I recalled a promotional article in the Books Section of a leading national paper that had caught my eye. This was not an advertisement but an attractive proposal that engendered considerable confidence in its fidelity from the reputation of the national newspaper concerned.
“If your dearest wish is to see your work – or the work of a family member or friend –in print, but you’re worried that a vanity publisher may rip you off to the tune of thousands of pounds and you don’t know how to self-publish, help is at hand.”
I willingly sought that help and found that for close on £500 I could benefit from a fast track service that would provide me with 5 copies of the book after which I could purchase books in small or large numbers on demand.
Ideal, I thought, £100 each for the first 5 books seemed a little expensive but the cost was justified by the comprehensive and elaborate backup service that was to be provided on an on-going basis.
I duly went ahead; the book was published in 2005 and the small initial run of 5 copies circulated to potentially influential reviewers. The content of the two most highly valued critiques was both highly encouraging and exciting. They both came from influential Mencap sources.
On the 9th September 2005 I received a positive critique of my book circulated as ‘Background Reading, New Series 44 August 2005’ from Brian McGinnis .
“Learning Disabilities: A Bold Vision or the Ultimate Betrayal: Charles Henley: UPSO: July 2005: I have had the unearned advantage of reading earlier commentaries from the author - who has a distinguished day centre history, which helps me avoid the very real risk of taking this as a simple "bring back our day centres" polemic. It is in fact a well argued statement of case for thinking hard about the sort of day centre "modernisation" that means scrapping them, while at the same time fully supporting greater access to employment, education, and community leisure resources.
The author argues, in terms of day centre history, that some centres pioneered what was later claimed by others as innovation; that centres as a whole were often poorly supported by senior management; that centres were blamed for failing, where it might have been more accurate to say that they were failed by policy makers and senior managers; and that those who disliked building-based approaches, and particularly disliked facilities specially for people with learning disabilities, have tended to blind themselves to what centres had offered, were offering and could offer.
I think the author's support for what might be described as a separate and specialist learning disability service is the weakest part of his case -partly because I think we have passed the point at which this might have been a runner, and partly because learning disability is often only one part of a person's "issues". Some of the other things the author says are equally forceful and a good deal harder to dispute. The ones I selected are:
• Paid employment for more people with learning disabilities is a wholly valid goal, but it is hard to see it being achieved for all the
very large number of people who have a day service place, or who
have nothing, at present.
• Some work enthusiasts seem to confuse paid employment with
therapy, and under-rate the inevitable toughness and inflexibility of
the working environment.
• Relying on community and commercial opportunities, and steering
clear of special buildings and special groups, could result both in
families having to shoulder even more responsibility and in people
losing contact with other people with learning disabilities without
gaining full inclusion in the sometimes non-existent and often not
very friendly general community.
• It would be great if every individual could enjoy support and other
resources for a life-long menu of wide-ranging personal choices.
It just doesn't seem that this is affordable and achievable. (Given
that human support is the major cost, it is hard to argue that special
support plus use of ordinary resources, on an individual basis, will
be cheaper/as cheap as collective special support in special places.)
• Small day centres/resource centres could narrow options rather
than extending them, unless they are firmly linked into a local
network of community resources that is both varied and accessible
- with individual support.
• Evidence from the present and past about what works and what
doesn't could give a firmer basis for new developments than
theories on their own - or indeed than projects with a very short
life-span or with very special reasons for their success.
This isn't a denial by the author of the importance of looking again at day services. It is a convincing insistence by the author that modernisation plans ought at least to look at how good things can be carried forward, at who is going to be covered for what, at sustainability, and at how to cover for risks without landing families with unwanted responsibilities. Arguably, we don't have a day services strategy as such because there is some optimism that we don't need one. If well-supported personal options could be guaranteed for everyone, then indeed we might not need "collective" solutions (though personal wish lists might include collective opportunities). Maybe we aren't there yet; and maybe we are not very likely to get there, In that case, Charles Henley is doing us all a favour by arguing against closing what we do have before there are any real guarantees of comprehensive and better alternatives.”
19th September 2005
Mencap Head of Campaigns and Policy also replied with specific comments detailed below.
“I have now had the chance to read your book 'Learning disabilities - a bold vision - or the ultimate betrayal!' i must say i found it a most interesting and stimulating book and I agreed with much of it but inevitably not all of it”.
“I think your description of the history and development of day centres is most useful and I fully accept there is a danger that in the rush to day centre modernisation of the throwing out the baby with the bath water. The comments in your foreword that 'there can be little doubt that day service provision is becoming diluted and day centres are closing' is undoubtedly correct. We very much share your concerns about this and it was for this reason that we produced a few years ago the report 'A life in the day7.”
“We were concerned that Social Services departments would use Valuing People simply as an opportunity to close down day centres without putting proper alternatives in place. For this reason we made it clear that no existing day centre should be closed down until robust _ alternatives are fully in place. In your book you describe this as being a meek proviso and either very naive or astounding. Whilst I fully understand where you are coming from in respect of this, I think you are being somewhat unfair.”
“To have opposed day service modernisation would have been frankly unrealistic and in any event, activities in the community are far better than activities in a closed and segregated environment.”
“We agree with you that buildings do have a role to play in the provision of meaningful day time activities for people with a learning disability, though there may be some debate over the size of them. You also state 'whilst building day services cannot provide an appropriate answer to meet all the needs of all people with a learning disability they should be seen as the starting point...' we would agree with this.”
“Finally, we are as concerned as you are with the erosion of services for people with a learning disability and the very real dangers of salami slicing of those services. Where we would disagree with you is in the revival of earlier proposals of a single service solution. The whole thrust of public policy has been rightly to ensure that people with all disabilities are properly included in mainstream activities rather than only being seen to be the responsibility of specialist services.”
“Thanking you once again for sending me a copy of your book, which I do believe, is a powerful contribution to the debate about services for people with a learning disability.”
I could not ask for a better launch pad from which to pursue a determined campaign - but for one major problem – the publisher recommended in glowing terms as a safe pair of hands by the Books Section of the major national paper did not live up to the honourable standards that this daily paper implied that he would provide.
The print on the first reviews was hardly dry before all of the elaborate promises started to fall apart; communication became evasive; the back-up system disappeared; I found myself in competition on the Internet with this publisher undercutting me whilst neglecting to fulfil his commitments. Any serious attempts to follow up to the Mencap reviews would have been futile. This self-publishing exercise had proved to be a campaigning disaster.
Apart from the financial outlay the real cost was to the future potential welfare of the most vulnerable section of our society and their carers. All available evidence indicated that Care in the Community support services were falling apart - an informed and objective debate was urgently needed. The sound reviews from two high level Mencap sources at last offered the right material to promote the arguments within the book and generate national discussion. But this unique opportunity to bring social injustices into the public domain for the benefit of the weakest but most deserving section of our community was lost.
I felt that I had not only been totally misled but my lengthy and detailed appeals to the editorial staff and then the Chief Executive of the national paper in an attempt to resolve increasing problems were frustratingly ignored. It was only when I wrote to the proprietor of the news group that I gained any hope of getting satisfaction as the Executive Managing Editor was instructed to make a response.
On the 28th February 2006 I first raised my concerns regarding the need for an investigation into the dubious business practices of this company so highly recommended by this newspaper Following further correspondence I eventually received a weak apology dated January 3rd 2007, with an admission by the Executive Managing Editor of his failure to effectively address the points I had raised. I saw no warnings in the Book Section that conveyed to potential self–publishing authors they should proceed with caution. When I received a letter dated 14th February 2008 from the Insolvency Service advising me that the publishers concerned were in Liquidation it came as no surprise; I could not help wondering just how many more potential authors had suffered the same financial and destructive experiences that I had within the two years that had elapsed.
A crucial opportunity to generate a meaningful national debate was lost thanks to the incompetence of the Books Section of a national paper and subsequent failure of its Executive Managing Editor to find a satisfactory solution to the problems that the Books Section had created. This newspaper did nothing to ameliorate the severe setback to my campaign – its Books Section even rejected a request I made for a review of the replacement book I was compelled to invest in containing the same content that has been so generously reviewed but was now out of print.
So much for the concern of elements of the media regarding major social issues - little wonder that the sales of the daily nationals are struggling and campaigners have to resort to long shots like E-petitions.
Further details recorded in the 'Research Notes' chapter in my new book put on record that Mr Robin Esser was the Executive Managing Editor and Lord Rothermere was the proprietor who actually responded positively to my requests for intervention.
CHARLES HENLEY
Nov 20 2013 10:53 AM Post #41

This site will be reopening later today - 20th November 2013
Homebase
Jun 02 2013 18:10 PM Post #32

This site is currently out of service. WILL BE REOPENED SHORTLY
Charles Henley
Jan 25 2013 4:04 AM Post #27
Location : Homebase

In a recent posting on this Bulletin headed ‘The Enemy Within’ I made a desperate appeal for all who have been affected by the consequences of Government policies regarding support for people with learning disabilities and their families to sign Government Petition: http://epetitions.direct.gov.uk/petitions/36834
As a consequence of this, and other appeals I have made in this respect, one of my contacts has drawn my concerns to the attention of her local MP, Amber Rudd, Hastings, who asked me for further details which I duly forwarded.
Ms Rudd has kindly responded and has now advised me that she is raising these issues directly with the Secretary of State for Health, Jeremy Hunt MP.
The numbers signing the petition are growing (thanks to all who have so far responded), but it is now more imperative that the extent of the problems should become undeniably obvious.
Once again I appeal to all who care – not just to sign the petition themselves but to lean on their friends, relatives, and all personal contacts – make the internet a powerful instrument of salvation for the most vulnerable and deserving.
Do not forget that whilst my personal focus has been on day care the debate I am seeking covers all forms of carer support whether day care, residential care, respite care, DLAs, and Direct payments of any shape or form.
Charles Henley
Jan 09 2013 18:55 PM Post #25

On the 30th December, 2012 Unpaid Family Carers (Facebook site) posted a link to an interesting element of demonstration RADAR protesting at the ‘Trojan Horse’ role of disabled charities in the Remploy Closures.
The context of this protest is summed up in the following:
RADAR (“Disability Rights UK”) is Remploy Trojan Horse
Posted on May 30, 2012 by JJ

REPORT: MAY 29TH DEMONSTRATION AT RADAR IN PROTEST AT “TROJAN HORSE” ROLE OF DISABLED CHARITIES IN CLOSURE OF 54 REMPLOY fACTORIES
Report of protest against the grotesque chaos of disabled charities – disabled charities – being used as Trojan horses to enable redundancy notices for over 2,800 disabled workers in 54 locations across the UK says GMB
Remploy disabled workers who face redundancy are in London from Monday 28th May for a Week of Action to coincide with the TUC Disability conference which starts in London Wednesday (30th May). See below for details of what is planned.
There was a demonstration this morning 29th May 2012 outside the offices of RADAR – now renamed Disability Rights UK- to protest that this organization and five others with the Sayce Report opened the way for the Ministerial statement on 7th March the House of Commons.
The Sayce report was used as the “Trojan horse” for closing 36 of the 54 remaining Remploy sites with compulsory redundancy for 1,752 people of whom 1,518 of these are disabled. The statement envisages the complete closure of all 54 factories in due course leading to 2,800 disabled workers jobs being lost.
The demonstration, with a large black horse to signify the trojan horse, took place outside the offices of Disability Rights UK12 City Forum, 250 City Road, London, EC1V 8AF. They set up tents in the green space opposite this office. Pictures are available from charlotte.gregory@gmb.org.uk .
Phil Davies GMB National Secretary said “Remploy Disabled workers facing redundancy protested that the Sayce Report, supported by RADAR, Mind, Mencap, Scope, RNID and Leonard Cheshire, is being used as a “ Trojan horse” to close the Remploy factories.
These six organizations started with an aspiration we all share where all disabled people are treated in an equal way in employment and that ideal state may lead to a completely different view of what support is required.
This is what happens when you make “the best” the enemy of the “good”.
You start with resolutions that will not be achieved in the short run. They are then pickled into a rigid dogma, a code, and you go through the years sticking to that ignoring real needs, and you end in the grotesque chaos of disabled charities – disabled charities – being used as Trojan horses to enable redundancy notices for more than 2,800 disabled workers in 54 locations across the UK.
Radar characterise Remploy as some out of date solution with attempts to stigmatise it as a form of ghettoisation and linking it to old institutional forms. In no way can modern day Remploy be characterised in this way”
Kevin Hepworth Unite National Secretary said “It is absolutely appalling that a disabled charity like RADAR can condone the sacking of disabled workers”
…………………………………..
Charles Henley
Jan 09 2013 18:09 PM Post #21

I responded on this Facebook site , Unpaid Family Carers, and several other associated groups with the following message:

Re: a recent posting on a carers’ website concerning the role of a RADAR, a Disability Rights organisation in the closure of Remploy factories despite strong and emotional objections by the disabled people concerned.
Whilst is is true that RADAR became the Trojan Horse that did for Remploy it should not be forgotten that the real culprits were the six charitable organisations that supported the Remploy closures in 2007
On the 7th Feb 2008 I circulated a detailed analysis to these six charities the folly of basing the Remploy closures on a fundamentally flawed ‘inclusion’ policy. I accused them of betraying their membership and copied this to Liz Sayce at RADAR.
Jo Williams (CE Mencap) replied:
“Thank you for your letter of the 7th Feb 2008 and your thoughts around Remploy. I have duly noted your comments”. Liz Sayce replied with a detailed explanation why RADAR considered open employment for disabled people a better option.
Mencap then did absolutely nothing to prevent the disastrous and tragic outcomes for disabled people that subsequently followed; Liz Sayce produced her Report in 2011 that sealed the fate of Remploy.
Following the LDC ‘Tell it like it is’ Report’ early 2008, I warned Liz Sayce against accepting the judgement of major charities that had lost their way regarding total inclusion policies and were exercising influence totally disproportionate to the interests of their membership; I expressed concerns for more severely disadvantaged people and the need to provide a continuum of opportunities for all levels of abilities not taken into account in her proposals; I added a copy of my response to the LDC constructively critical of its continued dependence upon a fatally flawed ‘inclusion’ dogma; I did not receive a reply.
Clearly, when Liz Sayce carried out her review and produced her recommendations for Remploy closures she could not fail to have been aware of the dubious and fragile background upon which the total inclusion policy was based; nor of the fatal effects that this was having on the decimation of crucially needed specialist and structured services.
Consequently a disastrous policy continues unhindered through a failure to learn from historical mistakes and a failure to carry out adequate and appropriate research; yet another example of the power of ‘fringe’ people to influence policies that warm the hearts of local authorities and others with their own personal agendas. There is no obvious sign of change or hope for the future – we are getting past the point of no return.
Perhaps someone can tell me why carers are so indifferent to the outcome of this continuing flawed policy fiasco when it is also so blatantly obvious that it could also similarly be called to account to answer for the Winterbourne View scandal? Why do so few carers lack the will and motivation to try to change it by the most direct and obvious route?
Homebase
Jan 09 2013 10:22 AM Post #19

THE ENEMY WITHIN. 9th Jan 2013
I have recently posted on various carers’ websites a series of postings concerning the consequences of failed one-size-fits-all policies concerning residential and day care support vital if people with learning disabilities across a complex spectrum of needs are to be enabled to remain in the community and enjoy fulfilling lifestyles.
The appalling consequences of a quarter of a century of the corruption of the original Care in the Community philosophies has led to the destruction of the Remploy organisation at the top of the level of abilities and conversely the scandal of the Winterbourne View exposures relating to people with challenging behaviour.
It grieves me to have to make comments that reflect on carers as I am aware that it is the carers on these sites that really do care about current trends and try to do something about it - it is my admiration and respect for carers of this calibre that keeps me involved.
Years of bitter struggle and sacrifices that so many have made to create a purposeful support service - a continuum of residential and day care opportunities and choice – has been systematically destroyed by politicians, bureaucrats, academics, and petty local government officials who use your children as pawns in the game of self-promotion, career advancement, financial rewards, and gain a battery of superficial honours and titles as rewards for failure.
Perhaps, most seriously, it is the in-fighting within the charitable organisations in their pursuit of their own agendas and Government funding that has been the most serious betrayal of trust with the suppression of support for wide and informed debate in the public domain. These are ‘the enemies within’ that could seal the fate of service and financial support for sound and equitable services for the most vulnerable for generations yet to come – it may already be too late!
I am convinced that only when these issues are brought into the public domain will a national debate expose the injustices that have been inflicted upon carers and their families - and reveal the waste of billions of pounds in pursuit of false doctrinaires for all levels of ability but particularly the severely disabled. For many years I have collected evidence charting responsibility for the spiral of decline but time is running out. Much of this evidence collected will remain available but much it will be of limited value and will just remain minute pieces of a jigsaw puzzle when I am no longer available to link the pieces together. I am only too well aware as birthdays pass at an increasing speed, and my own fulltime caring responsibilities increase, my active contribution days are numbered. Hence my repeated effort to get a groundswell of support for petition that calls for such a debate; for this is one means by which many more carers and sympathisers can contribute with a little effort.
This petition is about seeking the right signpost to the future where financial and human resources will be used to the ultimate benefit of people with all levels of disability – and not poured down into a bottomless pit.
Could I again draw your attention to Government e-petition: http://epetitions.direct.gov.uk/petitions/36834
Homebase
Jan 07 2013 20:54 PM Post #18

salvorrd - all constructive postings are welcome.
Adrian Crew
Dec 08 2012 14:29 PM Post #15

Testing Bulletin Board
Charles
Nov 15 2012 7:51 AM Post #13
Location : Base

Message sent to Community Care 14th November 2012
After the blaze of attention and sentiment over the Paralympics what has changed in the outlook for the most vulnerable in our society?

In his first public statement September 18th, Norman Lamb, the new Minister for Care Support did a Baroness Warnock ‘U turn’ and identified the root cause of the Winterbourne View outcome. He exposed what has been the biggest confidence trick in social history - weeks have gone past but nobody seems to have noticed!

Yet the one-size-fits-all fantasies doctrinaire woven into the fabric of inclusion/modernisation doctrinaires so readily accepted by policy makers, psychologists, charitable organisations, journalists and eventually the Government will still remain a threat to the learning disabilities population unless the insidious introduction of these initially well intentioned but flawed dogmas are objectively debated in the public domain with open access to all concerned.

For the past quarter of a century fantasies have been sold and ACCEPTED AS FACTS – THIS IS CRIMINAL – BUT IT IS BEING BRUSHED ASIDE AND INJUSTICES PERPETUATED UNCHALLENGED..

What can Community Care do to revive hope that Care in the Community can be resuscitated and survive?

More to the point - WHAT CAN YOU DO TO CONTRIBUTE TO THE SURVIVAL OF CARE IN THE COMMUNITY?
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