Obituary-Jim Mansell

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From institution to the community in the UK: The distinctive contribution of Jim Mansel

Jim Mansell who died on 13th March 2012 was my friend for almost forty years. He was an able and committed reformer, policy analyst and academic. The learning disability community in the UK and overseas has lost a true champion.

I first got to know Jim while he was still a student at Cardiff University, at that time completing his Masters degree on the development of learning disability policy up to the 1971 White Paper, Better Services for the Mentally Handicapped. He had already had an impact on learning disability services locally, becoming Chair of Cardiff University Social Services (CUSS) and dedicating that organization to learning disability issues. He became involved in the Ely Hospital, which was located in Cardiff and had been the focus of an official enquiry into allegations of mistreatment and abuse in the previous decade[1]. As a member of Cardiff Community Health Council, he enjoyed making unannounced visits there at any time of the day or night. He spoke up for those unable to do so for themselves and was always courageous enough to take on authority. In 1974, he set up the CUSS group home in premises rented from Cardiff University, where 4 students lived alongside five ex-residents of Ely Hospital. It was possibly the first example in the UK of supported accommodation for adults with moderate and severe learning disabilities being arranged in ordinary community housing.

Our first contact arose because a delegation of health service planners from Cardiff and South Wales had gone to Wessex (a health authority in Southern England) on a fact-finding tour, looking at the provision for children and adults with severe and profound learning disabilities made under the Wessex Experiment initiated on the advice of Jack Tizard and Albert Kushlick. (I was starting my career as a researcher in Albert Kushlick’s research team.) The South Welsh team wrote what Jim and colleagues in Cardiff and we in Wessex considered to be a biased report arguing against the feasibility of community care and for the continuing necessity of special health service provision. So we collaborated to point up the failings of the report and make sure that our view was well-reported in the local South Welsh press. At the same time, Jim and his colleagues in the Cardiff Community Health Council produced a plan for a radical community-based redevelopment of existing learning disability services. Although never implemented, the backward step advocated by health service planners was averted and the radical nature of Jim’s redevelopment plan shifted perspectives and created the conditions for the ‘moderate’ NIMROD proposal (New Ideas for the Mentally Retarded in Ordinary Dwellings) to be given the go ahead. The NIMROD development became very important as it gave credibility to the model of service promoted by the King’s Fund’s An Ordinary Life initiative throughout the 1980s. It was also a forerunner of the All Wales Mental Handicap Strategy.

However, before NIMROD had become a reality, Jim had moved to join Judith Jenkins, a senior and experienced psychologist who had done her PhD in Kansas with Todd Risley, and me as part of the research team in Wessex. Although during the years that immediately followed we got some research done -  we wrote the papers in the special edition of Advances in Behaviour Research and Therapy that reported the results of the Wessex Experiment and we did a replication of ‘room management’ - much of the time was spent arguing our corner. It is perhaps difficult for people nowadays to imagine how contentious the debate about institutional reform was. The Wessex Experiment, although now seen as a transient, intermediate phase in moving towards genuine community housing, was an important test of the feasibility of comprehensive deinstitutionalisation. The research came under attack from some influential quarters. A confidential document written by Prof John Wing, called The Problem of Integration, which criticized the Wessex research, was circulating among policy makers and the Chief Scientist’s Office at the Department of Health. A joint Medical Research Council (MRC) and Department of Health panel headed by the head of the MRC, Sir James Gowans, and including John Wing and several other professors of psychiatry reviewed the future of the Wessex research team and concluded that it should be shut down. The Wing paper was leaked to us at about the same time as the MRC report on our future was delivered and Jim, Judith and I set about mounting a defence. We made the issue public and we wrote three documents: a critique of the Wing paper, a scientific response to the MRC report and, aided by Judith’s law lecturer husband, an analysis of the MRC report for deformation - and sent them to the MRC, the Chief Scientist and the Secretary of the Learning Disability Client Group at the Department of Health. We won a retrial; a review panel was reassembled and another report written, which in effect gave the research team a reprieve, at least for one more period of funding. We were very young but Jim was always good in a scrap: determined, optimistic and articulate.

Harry McCree had come to Wessex to be Chief Nursing Officer of the learning disability services because of the Wessex Experiment. He was an influential professional voice supportive of fundamental reform. He became Chief Nursing Officer of Winchester Health District in the 1974 NHS reorganization and, later that decade, he gave Judith, Jim and I the opportunity to move the reforms in Wessex on by developing ordinary housing provision for adults with severe and profound disabilities, including people with severe challenging behaviour. This was a chance to build a model service and base it on evidence of what worked. The result was the Andover Project. The three of us had similar views on what was needed. Clearly, typical housing was a pre-requisite for providing typical homes, homes that were well furnished and appointed was what most people wanted, and being local to people’s ties and connections and part of the community just made sense. But we were also convinced from looking at the earlier Wessex developments that one needed to guide staff to arrange the environment so that the people living in the houses were the key actors, running their own lives as much as possible. Judith’s PhD with Todd Risley had involved applying applied behaviour analysis principles to environmental design, in her case to the design of daycare settings for infants and toddlers in which the young children would be stimulated, engage in activity, be socially co-operative and learn. We were inspired to do similarly in Andover: to design the conditions by which adults with very limited skills and sometimes difficult behaviour would fully participate in the stuff of life in their homes and communities with the support they needed from staff, and continue to learn and find alternatives to behaving in ways that other people found challenging. We designed early forms of individualized planning, developed methods for behavioural assessment and skills teaching, taught staff to be aware of what they were encouraging by the way they distributed their attention to people and developed activity planning. And, as committed scientists, we planned to evaluate it all.

However, to our great disappointment, the insecurity of our position led to a break up of our research group before that evaluation was fully done. Jim left to go to the University of Kent to work on developing training for SE Thames Regional Health Authority and Judith left to resume her career as a clinical psychologist. Jim and I could have been rivals for the Kent job as I also put in an application, but I subsequently withdrew it deciding that I would stay and complete the Andover research. Meanwhile, Jim made a fantastic success of the Kent opportunity and before too long he had founded the Tizard Centre[2].

Jim was committed to applied research. He wanted to make a difference to people’s lives but his route for doing that was not only to articulate what was right but also to gather and distil the evidence to inform what was right. He was committed to services being designed on the basis of evidence and he was not shy of taking on the big issues. His experience from Andover informed two important contributions that the Tizard Centre made to continuing progress.

In the first, he established the Special Development Team, ably led by Eric Emerson and including Sandy Toogood who had run the first Andover house, to produce individualised plans for the resettlement of adults with severe learning disabilities and severe challenging behaviour from the SE Thames Region into local supported accommodation. The success of the development and the evaluation of its success underpinned the growing confidence that the long-stay institutions were no longer necessary. The experience gained, together with the input of other contributors, such as Tony Holland, informed the analysis contained in the Department of Health report, Services for People with Learning Disabilities and Challenging Behaviour or Mental Health Needs, colloquially known as the Mansell Report.

In the second, he recognised that there was a desperate need for staff training appropriate to the new non-institutional pattern of services. The Tizard Centre, under Jim’s leadership, has probably done more than any other university-based centre to disseminate effective ways of designing and running services. He and his staff have initiated the Bringing People Back Home training series, further training packages developed in collaboration with Pavilion, undergraduate and post-graduate academic courses for service leaders, the Tizard Learning Disability Review as a means of communicating policy-relevant evidence to the field and partnership arrangements with important service providers to develop and test ways of working.

Jim’s more recent contributions included being the driving force behind a European network concerned with deinstitutionalisation in countries which had not yet taken the plunge, a reissuing of the Mansell Report and policy guidance in relation to people with profound and multiple disabilities, as well as being a Commissioner for Social Care Inspection. Throughout, Jim remained grounded, maintaining a conviction that the quality of life of people who needed substantial support depended critically on the approach and skills of the people who supported them. What has become known as Active Support reflects this view. The elements of Active Support were based on research evidence about how to arrange activity opportunities with effective support so that people who could not do everyday things independently could still have a rich and active life. The elements were first brought together in the Andover houses although they were not called Active Support until Jim, Eric Emerson and I decided to use that term at a meeting in London years later. One of the distinctive achievements of the Andover houses was the high level of participation that the people living in the houses enjoyed. We had demonstrated this by measuring their engagement in constructive activity (as opposed to disengagement) by direct observation. Subsequently, we also demonstrated that, as deinstitutionalisation spread to other areas, similar people had much lower access to activity (and much higher disengagement) despite living in what should in theory have been better housing (i.e., for smaller groups and with more staff). We were both disappointed that the lessons of earlier developments had not been picked up and decided that research on effective staff practices needed to be revisited. So we rewrote Active Support, although not together and not in precisely the same way, trained staff and evaluated its impact. Jim implemented Active Support in a sustained partnership with the national service provider, United Response. In addition, he has helped spread Active Support to Australia through his consultancy there, which saw him become a Professor of Disability Studies at La Trobe University, Melbourne in addition to his Chair in Kent.

I will miss Jim. I have perhaps dwelt in this obituary on our early years when we worked in the same office together. But it was fantastic: exciting, almost outrageous in what we were taking on with so little experience. As Jim is reported elsewhere to have said about his early campaigning about the need to redevelop Ely Hospital: the idea that he might lack credentials for what he was doing “was actually a question that never occurred to me”. With his backbone, of course we could take on the combined might of the MRC, Department of Health Chief Scientist and eminent research psychiatrists over twice our age, and design and set up houses for adults with severe and profound learning disabilities and severe challenging behaviour at the same time. We had a ready understanding and, although we saw less of each other during his Tizard Centre days and did not find a way to collaborate, we still clicked when we saw each other again. I have a profound admiration for what he achieved. Naturally, what he achieved was helped by the colleagues he had around him, notably over the years, Hilary Brown, Eric Emerson, Peter McGill, Glyn Murphy and Julie Beadle-Brown. But that does not diminish his central contribution.

Jim Mansell (right) and David Felce


Professor David Felce

 

Director, Welsh Centre for Learning Disabilities, School of Medicine, Cardiff University and Immediate Past President of the International Association for the Scientific Study of Intellectual Disabilities (This e-mail address is being protected from spambots. You need JavaScript enabled to view it)



[1] A series of inquiries into scandalous institutional conditions between 1969 and 1978 contributed to the later policy decision to deinstitutionalize, but the Ely Hospital inquiry was the first.

[2] Named after Jack Tizard whose advice had initiated the Wessex Experiment and who had been government advisor at the time of the 1971 White Paper, Better Services for the Mentally Handicapped.

 
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