Monday, 16 December 2013

If it looks like a duck... Winterbourne View and institutions redux

If it looks like a duck… Winterbourne View and institutions redux

“If it looks like a duck, and quacks like a duck, we have at least to consider the possibility that we have a small aquatic bird of the family anatidae on our hands.” (Douglas Adams; Dirk Gently’s Holistic Detective Agency).

When you think of an institution, whether for people with learning disabilities or any other group of people, what image comes into your mind? For me, it’s the prototype of a spooky, Victorian set of large barracks-like buildings (with a chapel, of course) in sweeping, unkempt grounds. And it’s empty of course, in the slightly Marie Celeste way captured so well in @AbandonedPics.

Institutions have been on my mind a lot this year.

It’s 20 years since my first substantial research job, conducting a sort of systematic review (before we knew what systematic reviews were) of the evidence around the impact of deinstitutionalisation on the lives of people with learning disabilities. The evidence can be simply summed up – in almost every way, any other type of residential setting was better for people with learning disabilities than an institution. In fact, our argument then, as now, is institutions were so bad that comparing people’s experiences in other places to them was not the comparison to make, and that instead we should be judging people’s living arrangements against commonly held standards of decency, human rights and citizenship. Eric Emerson and I called the book ‘Moving Out’.

I was at a conference in Istanbul in May, where the Turkish government are pouring political will, energy (and money) into an institutional closure programme, with support from the Mental Health Foundation, Foundation for People with Learning Disabilities and the National Development Team for Inclusion, amongst others. As I was watching the presentations, I was firstly struck by the fact that Turkey didn’t seem to have that many institutions to close (and also in some areas had in effect a functioning direct payment process for families living with an adult with learning disabilities), and secondly that the institutional closure programme seemed to be going through similar stages to other countries (for example building specialist residential care facilities rather than going straight to supported living and beyond). I thought about these stages in progressive terms – apart from the prophets and seers who see the desired end-point clearly (and therefore get frustrated with everyone else), perhaps the rest of society has to go through a series of stages (almost in a Vygotskian ‘zone of proximal development’ way) of essentially broadening/deepening imagination about the rights and capacities of people with learning disabilities.

I was at another conference in Nijmegen in September, ostensibly about reducing the health inequalities experienced by people with learning disabilities, where there were a lot of trainee intellectual disability physicians (there is such a profession in the Netherlands) working in institutions. Even if they didn’t approve of institutions and had ambitions for an ‘ordinary life’ for the people with learning disabilities currently living within them, they described them as nice places for people with learning disabilities to live – physically pleasant settings, safe, with a sense of belonging for people and with activities for people to do. People with learning disabilities have serious problems to contend with in the UK, I thought, but at least we’ve moved beyond that.

Looking at this written down, three words come to mind; smug, complacent and wrong.

Wrong because in England, today, the institutions are not empty. They might not be big Victorian semi-rural piles any more (these seem to have become Trust headquarters, executive flats or housing estates). Instead they are usually smaller - either bland, newish-build complexes hidden away near to ring roads or in industrial estates, or converted houses found along little-used country lanes. They don’t call themselves institutions, they call themselves specialist residential services of various types (Assessment and Treatment Units, for example), and they can be provided by the NHS or the private sector. The latest census of people with learning disabilities, published by the Health and Social Care Information Centre http://www.hscic.gov.uk/pubs/ldcensusrep1213, reported that 3,250 adults with learning disabilities in England were inpatients in such services, virtually no change from the 3,376 adults in similar services in 2010.
Can we really call these places institutions? Erving Goffman, the sociologist nonpareil of institutions, in his 1961 book Asylums defined a total institution as “A place of residence and work where a large number of like-situated individuals, cut off from wider society for an appreciable period of time, together lead an enclosed, formally administered round of life.” Features of institutional routines include a complete breakdown of usual distinctions between work, play and sleep, so that all these things happen under one roof under a single authority; block treatment of residents; routines which act to depersonalise residents; rigid institutional routines; and maintaining a social distance between residents and staff. Even where restrictions on a person’s liberty may be necessary (e.g. in high secure services) this does not mean that the person has to live in a total institution.

For many of the inpatient units covered by the census, there are clues that many people with learning disabilities are likely to be living in what by Goffman’s definition are total institutions. According to the learning disability census, 60% of people with learning disabilities had been an inpatient in their current residence for a year or more, with 17.6% of people being resident for 5 years or more. For comparison, the average length of stay for people with mental health problems in NHS-funded (including independent sector) specialist adult mental health inpatient services was 64 days (2011/12) https://catalogue.ic.nhs.uk/publications/mental-health/services/men-hth-bul-1213/mhb-1213-ann-rep.pdf.

The census also reports that 18.2% of people with learning disabilities lived more than 100km from their notional residential postcode, and that for over a quarter of residents (28.0%) the provider organisation couldn’t even tell the census what the notional residential postcode was.

And these census figures don’t even include children (in 2011, 792 children with learning disabilities aged 4-15 were recorded as boarders at some form of residential special school http://www.improvinghealthandlives.org.uk/gsf.php5?f=17280&fv=18581) or adults in other forms of nursing care (2,035 adults with learning disabilities in 2012 http://www.improvinghealthandlives.org.uk/gsf.php5?f=17280&fv=18581) or residential care (34,275 adults with learning disabilities in 2012 http://www.improvinghealthandlives.org.uk/gsf.php5?f=17280&fv=18581). An unknown proportion of these people are also likely to be living in places that feel like total institutions to the people living in them.

My progressive view of hospital closure as a series of stages is/was also deeply complacent. Away from the statistics, it’s important to remember that the horrors of Winterbourne View were only one example that happened to come to light in a way that (fleetingly) caught the public attention. The behaviour of staff in Winterbourne View was strikingly similar to behaviours reported in the inquiries into Normansfield and Ely hospitals in the 1960s and 1970s, and since Winterbourne View other places have come to light where people continue to be abused and people die. We cannot claim to be post-Winterbourne View or post-institution. And it isn’t as if we can claim to have left behind ways of thinking about people with learning disabilities used to justify institutional practices. Alongside discourses on human rights and self-determination for/by people with learning disabilities, there are still powerful, parallel discourses on segregated services that are similar to those voiced by the Dutch intellectual disability physicians I mentioned earlier (which is where the smug comes in – who are we to tell anyone how it’s done, whatever the ‘it’ is…).

So why do these institutions by any other name continue to exist, and indeed in some respects thrive, as new units are being planned and built as I write? And why do staff behave as they do where abuse and neglect occur? It’s not as if we don’t know any better. Jim Mansell and a very talented team in Kent demonstrated in the 1980s that it was possible for people with learning disabilities and the types of challenges often used by specialist residential services to justify their existence to live fulfilling lives in the community, with the right, individualised support (see the revised Mansell report; 2007) http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_080128.pdf And a SCIE knowledge review, published in 2008, set out very clearly the evidence on the consequences of out-of-area placements and what can be done to provide better, local support to people with learning disabilities   http://www.scie.org.uk/publications/knowledgereviews/kr20.asp

It’s not even that these specialist residential services are cheaper - they are often more expensive than the cost of designing local, individualised supports.

In the reaction to the learning disability census figures and the one-year on Winterbourne View report, along with the anger, are attempts to understand why we are in this position. Trying to understand feels to me like peeling away the layers of an onion; there are different levels of explanation with no one core, ‘real’ explanation to be revealed – they are all important. With no claims to be comprehensive, some of these levels of explanation include:

Understanding the behaviour of staff. In these highly staffed settings, abuse and neglect cannot be put down to staff shortages. A long tradition of applied behavioural psychology has attempted to understand and shape staff behaviour in terms of contingencies (what is reinforcing and what is aversive for staff), but as Richard Hastings explains in his excellent blog it is also important to understand and work with the emotions and attitudes of staff engaged in working with people with learning disabilities http://profhastings.blogspot.co.uk/2013/05/winterbourne-view-will-happen-again-and.html

Understanding the organisational context. Staff behaviour doesn’t happen in isolation, and the organisational contexts staff are working in obviously have a major impact on how staff behave. There is substantial evidence about the organisational factors that are associated with staff burnout, such as working long hours in a job perceived to be low status, feeling trapped in the job, not being sure what the job is supposed to be and not getting support from other people. Organisational culture and leadership are obviously also crucial here, particularly in terms of openness to the outside world.

The physical environment of services. Although service providers often put a lot of emphasis on the purpose-built nature of their residential services, the effective ‘technologies’ for helping people with learning disabilities with various challenges to lead fulfilling lives are all about people, relationships and practices, not about buildings. If anything, the evidence suggests that the more a person with learning disabilities lives in a real home (small, living in neighbourhoods where other people live, with people they choose to live with, homely) the more likely it is that that person will live a fulfilled life.

The behaviour of service providers. It is clear that some providers of these services (whether independent sector or NHS) see themselves as responding to demand, are expansionist in their ambitions, and are certainly not in the business of putting themselves out of business. It is also clear that some providers do not have the leadership, skills, values and openness to the outside world required.

The behaviour of commissioners. Time after time, commissioners have been identified as a major reason for people with learning disabilities being placed in these services, for interlocking reasons. First, there is often a failure of commissioners to develop and commission the local, individualised, community-based services recognised as being most cost-effective. Second, commissioners often don’t have good information about the local population of people with learning disabilities they are serving, meaning that the needs of people with learning disabilities and their families often have to reach crisis point before commissioners take notice. Third, commissioners then commission reactively in response to individual crises, often on the basis of which specialist service has a place available at short notice. Fourth, commissioners fail to effectively monitor people who end up in these specialist services (either as individuals or collectively to help strategic thinking), resulting in a failure to develop effective local services for people to return to. At a time when commissioning is in upheaval, commissioning expertise concerning people with learning disabilities is in short supply, and services are facing severe resource constraints, this seems likely to get worse before it gets better.

Policy. The long hospital closure process in the UK had a number of policy aspects that are worth thinking about in the current context. First, the location of the hospitals in the NHS meant that there was a clear command-and-control structure, with politicians nominally at the top which, for all its faults, resulted in clear policy levers to be used. Second, there was money attached to make the local acceptance of people moving out of institutions financially attractive to local authorities and NHS services. Third, there was a reasonably clear sequential focus: stopping admissions, getting children out, then getting adults out. Fourth, there was a clear focus on institutional closure as the policy aim (with the result that community services needed to be developed for the people moving out), rather than starting from the point of view of developing community services first for people in hospitals to move into later. Finally, there was a recognition that it would take time. In all these terms, the environment for policy-makers in 2013 is far more difficult.

Beyond these layers of the onion, which are presumably all amenable to change, there are two further layers that I’ve been brooding on. These are about the broader position of people with learning disabilities within our society which make institutions possible, and I don’t really know what I think about them and how pessimistic I should be on the basis of them.

The first of these layers is the argument put forward by the historian Andrew Scull and others that the rise in institutions for people with learning disabilities (among other groups) in Victorian England was the result of rapid industrialisation and urbanisation. These changes resulted in people with learning disabilities becoming more ‘obtrusive’ (another Goffman term), being less likely to be economically productive in industrial waged economies relying on particular skills (e.g. reading, writing, numeracy), and in being more noticeable as a ‘problem’ in densely populated urban environments. In our society, it doesn’t take much to be obtrusive – just try walking down a city street continuously smiling at people and you’ll see what I mean. If the remaining institutions are a solution to this obtrusiveness, in terms of removing people from sight, then without changing the way that societies relate to people with learning disabilities the ecological niche currently occupied by institutions are likely to be filled by something similar.

The final layer relates to the work of Wolf Wolfensberger, who at times seemed close to a view that there is an almost collective unconscious view of societies that people with learning disabilities are, in @sarasiobhan’s words, ‘not fully human’. Is this true? If it’s true, can we change it?


A common reaction to the one-year on Winterbourne View report seems to be disappointment and anger, but also a lack of surprise. I wonder if any other people feel like I do, a sense of complicity. There was a remarkable generation of people who felt it their mission to close institutions for people with learning disabilities, who are nearing retirement age now. Perhaps my generation wanted to feel that this mission was complete, and we looked the other way while going on to other missions and other issues. Yet this mission is far from complete. Maybe the ultimate measure of its success is what happens to these 3,250 people, yes, but also what happens to all the young people with learning disabilities coming through, so that no-one would think institutions (whatever their new labels) are ever the solution. Can we get there? I genuinely don’t know.

14 comments:

  1. Wow and double wow, that's a blog post and a half Chris. In fact it's probably a hybrid of a blog post epic, a provocation paper and a call to arms/manifesto. It is dire that things remain as they are and unfortunately I think you've touched on something with the complacency, not just of those working in the field, but also of us fellow citizens who may look on in horror and shock but quickly move on to other endeavours.

    I wrote this 2.5 yrs ago immediately after Winterbourne View http://wp.me/pOLqj-is and honestly, I don't know that anything has really changed. Need to muse more before adding another comment, or blogging in reply, but it is beyond my comprehension that we are in the position we are in. That said I really appreciate you sharing your thoughts, the more we think the more we'll be able to improve things (I hope).

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  2. Really nice weaving together of pieces of evidence and a balanced overview Chris. Quacking stuff!

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  3. Such a good reminder of what has been happening behind some of our (complacent) backs. As someone who resettled people from long-stay hospital into ordinary housing in the N/West amidst a proper strategic decommissioning policy that worked against a strong framework of normalisation, I too was shocked to find behind my back new institutions had been rising apparently unchallenged. Worse too as I know that most people can be supported within the community in ordinary housing if we have well-trained staff who care and listen. We've seen how (often understandable) challenges to us have changed as people learn that support is FOR them and will stay with them and cares... and so they learn to trust. No wonder it's hard for them to do this when we see not only what institutions do to exercise power inappropriately but also recall how they also set the conditions for abuse.But in the 80s and 90s we had a clear values base; we had support from the top; we had specialist LA social workers and specialist community teams of multi-professionals supporting the development of skills. We've now got commissioners who not only do not have the skills and experience to know what it takes to support people with more complex needs but don't use the free consultancy of providers who do, for fear of being thought to "favour" them in some way. In addition they have unbelievable financial pressures from the government cuts which will amount to some 50% by 2018, and regimes which seem to think they have to tender for lowest prices even though there can be exceptions in care to European rules, AND we're supposed to be assessing and meeting needs individually. They also can't distinguish in the rush to the bottom between the impossible promises made by applicants in their bid for the business.... even though we saw one of the problems of the sector has been being owned and driven by hedge funds that don't have any interest in the clients or even in the UK but in profit and can easily move out and take their winnings leaving bust businesses if they don't produce. At the same time the funding regimes mean there's an unintended incentive for LAs not to pay out at high cost in the community when Health has to pay for assessment and treatment unit costs. I'm not suggesting it's deliberate but it needs sorting - health need to understand it is NOT buildings or even high cost psychiatrists who make the difference but properly assessed and supported services designed around the person. Like the rest of us, people with learning disabilities can need good skilled community services and local mental health service support for any acute episode. In my area, the psychiatric back-up has never materialised but the specialist community health services have gradually been eroded - so where has this money gone? There are some areas who still have some developed support for challenge. There are also providers who work well and have developed skills and training and have helped people who challenge to live successfully in the community. There should be a call for the decommissioning of these assessment and treatment units and learning from areas who have retained or developed good local community services that support people locally. We so badly let down people with learning disabilities to allow such services to rob them of important parts of their lives and frankly to be paying large sums of money which could be so much better employed in the community.

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    1. Thank you so much for this Rosemary. It shows really what needed to be in place for hospital closure to happen, and how difficult the current environment is for making this happen.

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    2. It is difficult but not impossible if there's the will. I always felt the previous hospital closures happened to a great extent as the government at the time saw savings from the massive costs of hospitals if only from the sale of the large London-circling hospitals. Maybe they need reminding and being made loudly accountable for wasting public money. Large amounts of money are being spent on the 3250 people stuck in these units - it seems sometimes health don't even know what they're spending. Margaret Flynn told me that one woman at Winterbourne was costing £10k per week!! Some areas are doing better. As you say we do know what works. A proper decommissioning plan should be able to show with some one-off frontloading how and when it would save... we do have costed examples of people living in the community - including people whose costs have come right down with the right support, but importantly we also know who the next people are likely to be without the right back-up - including children who challenge and we need to make both LAs, Government and Health aware of the costs for ever increasing unless they ensure community services are supported. It'd be good to have yours and others' support in getting this message across centrally

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    3. Thanks for this reply Rosemary. Absolutely, both the prohibitive cost of refurbishing the original institutions and the money that people thought could be raised from their sale seemed to be important.

      Does the very fragmentation of commissioners (so no one commissioner sees the aggregate national cost of these places) hinder making and using this very cogernt cost argument now?

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  4. A good summary and analysis of the issues Chris. We did almost get there in the North West, with some excellent community-based responses to people as people, combining inclusion, kindness and technical know how, and at no more cost (as if that is what really matters!) than the expensive private institutions that promote their dubious wares so assiduously. . Much of that is in jeopardy now as the cuts bite and services (including the one I led until March 2012) fragmenting and even being dismantled. But we have to keep plugging away, as you are here, and as Rob Grieg has in his recent post on NDTi, making it clear what works and what is right, building and maintaining alliances to achieve a credible government commitment.

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    1. Yes, absolutely agree Mark. It can and, in many places, pretty much was done for a period of time.

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  5. such a sad read, it is so evident that there are many people who have a strong belief in 'we can do better' so whats stopping us.
    I am saddened not only by these 'life-long assessment/treatment units' but also by the apparent lack of understanding what independent living should be about. Why are we still placing young people in residential care, to enjoy receipt of an 'allowance'??? Try as I do, I feel like a lonely voice trying to shout why supported living has to be a better choice - but its not what parents seem to want. Why not?
    I also struggle so much with 'day services', why is it ok to place someone in a day centre for 5 days a week? Families are still demanding this. I still hear 'PMLD can't work'. Why not, am I missing something here???
    I think Winterbourne is just one aspect of what is going so very wrong, but we still aren't achieving better life's even for those still living at home.

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