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

 

Author: charlesahenley

Following a varied career starting with 4 years as a city office worker, 4 years service in the RAF both as ground staff ad flying duties, 16 years working for IBM Time systems division as a service engineer, a short spell as a production line supervisor, before returning as service manager to another US business machines corporation who had taken over IBM Time systems division in the UK. The nature of this work brought into contact with day centre establishments for people with learning disabilities and in 1966 when radical and progressive policies were awakening I changed career direction. In the years that followed I worked for five different authorities at centres ranging in size from 24 to 190 attendees of all levels of ability and saw remarkably progressive policies being introduced in the first 20 years for the benefit of the attendees and their carers. Sadly, as a consequence of local authorities gaining full control of policy implementation from 1990 onwards, service support went into a spiral of decline that has made debacle of the rational principles of care in the community. There is now a vital need to take responsibility for service implementation away from local authorities and the NHS and grant it to a single service agency under the direction of its own Minister. Without an urgent change of direction, the current dire situation can only worsen.

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