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.