The new restraint: old chains in new guises

In my last blogpost I talked about what the research evidence does and doesn’t say about the lives of people with learning disabilities living in different kinds of places. I also talked about how the research evidence hasn’t kept pace with the corporatized world of speculative 48-bed ‘supported living’ establishments and other such ‘developments’.

[Odilon Redon, 1916, White vase with flowers]

I’ve been hearing quite a lot about these sorts of ‘supported living’ arrangements, what people’s lives are like within them, and what is being done to people to cut costs in the disingenuous names of ‘improving people’s quality of life’ and ‘reducing their dependence’. I’ve also been thinking about how Hillingdon Council have assessed Steven Neary as being subject to a ‘deprivation of liberty’ because he is consistently supported to go about his daily life.

Historically, one very powerful prism that has been used to understand what services are doing to people is institutionalisation. This is derived from the work of sociologist Erving Goffman in the USA, who 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.

In the UK in the 1980s and the 1990s quite a lot of research begun by Norma Raynes and colleagues investigated the extent to which people in long-stay institutions, and various community-based types of housing for people with learning disabilities, were subject to these institutional routines. Although long-stay institutions were always (unsurprisingly) institutional, and smaller, community-based housing services were on average less institutional, being in a small supported living service did not guarantee that your life wouldn’t be constrained by the kind of institutional routines listed above.

Looking at the circumstances people are in now, I think there’s a lot to still be taken from the institutionalisation way of thinking about things, but that applying it wholesale allows service providers and commissioners to wheedle their way out of the consequences of what they’re doing to people (‘Of course we don’t make everyone have a bath at the same time – people have choice about that’ etc etc).

Instead I’d like to propose that what we’re talking about here are forms of restraint. We know people with learning disabilities (both inside and outside inpatient units) can be subject to mechanical restraint (being placed in clothing, chairs etc that restrict people’s movement), physical restraint (being restrained by other people), seclusion (being locked in a room on your own), and chemical restraint (being prescribed unnecessary antipsychotics as a method of sedation). I think we can also talk about restraints on freedom. These might not be acknowledged as such, but these restraints can be seen in their impact on people’s lives. These restraints on freedom took certain forms in big institutional services, but very similar restraints on freedom are cropping up in new guises for people with learning disabilities today.

For example, Goffman talked about people in institutions living their lives under one authority. If a person with learning disabilities is in a ‘supported living’ service where the housing and support provider organisations happen to be the same or are closely linked, in practice this person is living their life under one authority. How easy would it be for this person to move house, or sack the organisation supporting them to find someone better? And if this person doesn’t have a job (highly likely), has very little money to spend, and gets very little support to do anything during the day that they want to do, these restraints add up to something possibly worse in some ways than an institution – from work, play and sleep under one authority to no work and precious little play, leaving a person effectively trapped in their home with nothing to do. A restraint on freedom.

Goffman also talked about institutions involving large numbers of like-situated individuals under one roof. These aren’t people choosing to live together under one roof because of shared liking, interests or ideals. They are people made to live under one roof due to decisions made by an external authority, on the basis of a bureaucratically defined ‘need’. Again, a 48-bedded ‘supported living’ complex, no matter how bijou, is doing exactly this, imposing severe restraints on people’s freedom to determine where they live and who they live with in living spaces that are private. However, these restraints can also apply in much smaller places too, if people have no say in which neighbourhood, village, town or city they live in, the style of their home, and whether they want to share with anyone, on what terms, and who the anyone is.

In terms of restraints on freedom described as institutional routines when people lived in big institutions, no doubt there would be strenuous objections from service providers and commissioners if I were to suggest that people with learning disabilities are subject to block treatment and rigid routines, although initiatives like the excellent Big Bed Time Audit done in Hertfordshire and Calderdale show that block treatment is alive and kicking in services for people with learning disabilities (soon to be published, but some tweets on it can be found here).

But what if people with learning disabilities in a supported living complex all have to be in their flatlets/rooms at a particular time at night? What if everyone supported by a particular service provider, across many different houses, all have to do the same 'work experience'? What if everyone with learning disabilities has to use their 'personal budget' in the form of a pre-payment card, only usable with a restricted set of 'approved' services? These are restraints on freedom in the form of block treatment, even if they are distributed across all the services provided by a particular organisation or across everyone living in a particular local authority.

The same is the case with rigidity of routines. What if people only get any support to go out and do stuff at fixed hours and days of the week, meaning that people have to leave a gig at 9pm (see Stay Up Late’s recent survey on this), or they don’t get to see a film at the cinema they want to because a support worker isn’t available when the film’s on? What if people get a home visit involving personal care, at a particular time, that isn’t long enough to get people feeling like they’re ready for action? For me, these are restraints on freedom in the form of being subject to rigid routines imposed by others for bureaucratic convenience, in new forms that are cloaked and officially deniable.

Perhaps most frightening to me is the way that services are increasingly being set up in ways that depersonalise people with learning disabilities and set up an ever increasing social distance between people with learning disabilities and others supposed to be there to support them. The role of people as supporters is being systematically eroded and being replaced by various forms of remote surveillance in the names of assistive technology or telecare.

Look at the ‘Just Checking’ website for one example of such technology being used in an increasing number of ‘supported housing’ services across England – there are many others too. Sleep-in staff are being replaced by ‘Just Checking’ technology, which as far as I can tell records whether people are opening or closing doors at night or are getting out of bed, with one Just Checking member of staff remotely keeping an eye on all this information from multiple houses. Quite what pattern of door opening and closing would merit an intervention, what this intervention would be, and what would happen if two people in different houses opened their doors inappropriately simultaneously, is unclear. As far as I can tell, I can’t see any evidence presented in the case studies on the website that people with learning disabilities prefer Just Checking to being able to talk to someone, or that it improves the lives of people with learning disabilities in any tangible way. There is lots of detailed evidence on cost savings, however. The front page of the site sets up the extreme depersonalisation and social distance involved – your options are ‘For A Loved One’ or ‘For Care Professionals’ – a ‘For You’ option doesn’t exist.

And how does a person with learning disabilities ask for help, or have someone to chat to if they’re worried about something? How do people have secure, ongoing relationships with people supporting them, to find out shared interests, do things together, grow and develop as people? To me this increasing social distance and depersonalisation are severe restraints on people’s lives, by not providing the human contact and respect that everyone needs to make the most of their lives.

Taking these together, I was thinking about Mark and Steven Neary, and how Hillingdon has decided that Steven’s excellent support to live the life he wants and to support him in growing and developing as a person constitutes a deprivation of liberty. Like Mark, I think it’s the exact opposite. Taking away Steven’s home, forcing him into some ‘supported living’ service with people he doesn’t know, taking away the people who know and care about him, would be subjecting him to severe restraints on his freedom.

Wherever people are living, I think a crucial test for any organisation commissioning or providing support is the extent to which their practices are acting as restraints on people’s freedom, in the ways I've tried to describe above and in other ways too. These restraints need to be broken just as much as other forms of restraint. If people were not being subject to such restraints, you would expect to see variation and diversity in how a population of people with learning disabilities are living their lives, as they become the authors of their lives rather than having the book of their lives written by someone else. Sounds good to me.

The ghost of evidence past, present and future - Stinky Pete speaks

I’m worrying about the increasing rate at which people contact me to ask if there is any evidence that small, community-based housing is associated with better lives for people with learning disabilities compared to care homes and institutions. My first realisation is that I’m now into the ranks of the academic Stinky Pete old-timers, whose fading memories are dredged for ancient scrolls beyond the reach of a SIRI request (“I did research on this 20 years ago, young grasshopper…”).

My bigger worry, however, is that this generational forgetting leaves organisations who should really know this stuff defenceless against waves of attacks on the very idea of independent living (in a disability rights sense) coming from some ‘service providers’ building 48-person ‘supported living units’ (see Mark Neary’s recent blogpost about this https://markneary1dotcom1.wordpress.com/2017/04/27/squeeze-em-in/ ) and local authorities looking for reasons to warehouse people on ground of economies of scale (see this NDTi blog from Rob Greig https://www.ndti.org.uk/blog/rochdales-transformation-of-learning-disability-services ).

So, a quick recap on what the evidence says. There has been loads of research about this across the UK and other countries, most of it linked to the closure of the big long-stay hospitals but some of it looking at different ways of supporting people with learning disabilities beyond long-stay hospitals. Most of this research, in the UK at least, is at least 10 years old.

The table below (from a systematic review by Walsh and colleagues, published in 2010) summarises what the research evidence from 67 research studies said at the time (I don’t think it would be much different now), either from studies that had followed people out of long-stay institutions (the ‘deinstitutionalization studies’) or from studies that had compared people living in different types of community-based housing (the ‘postdeinstitutionalization’ studies – never use one word when one REALLY LONG word will do instead).

There were/are a lot of gaps in the research evidence, but what is obvious from this table is that institutions are never, ever better in any aspect of people’s lives than community-based alternatives (the mortality evidence comes from one set of Californian studies where the methods used to derive the conclusions have been hotly contested). In a few areas of people’s lives (‘challenging behaviours’, for example), community-based housing support services are no better than long-stay institutions. But in most areas of people’s lives (like people using the skills they have, more choice over aspects of their own lives, doing more stuff inside and outside the person’s home, and people being more socially connected), life outside long-stay institutions is better.

Also, for many (but not all) aspects of people’s lives (like exercising more choice, more social connections, doing more outside the home, possibly more physical exercise), smaller supported living houses are better than larger residential care homes or group homes.

So far, so straightforward. But there a few things to remember. In the research evidence reviewed here, lots of important stuff (like people’s disposable income, or what people think of their neighbourhoods) was hardly measured. Using long-stay institutions as a basis for comparison also sets the bar very low – it doesn’t take much to show someone’s life is better than in an institution, although that person’s life may be way short of what they, you or I would consider to be a decent quality of life. 

A third thing is variation. There was very little variation across different long-stay institutions – people’s lives on the measures used in these studies were consistently not good (I’m trying to be measured here). In residential care homes and supported living services, however, there was a lot of variation in people’s lives across different homes supposed to be of a similar ‘type’, such that for some people life in a care home or supported living would be indistinguishable from life in a long-stay institution. Why do some people in similar-looking places have better lives than others? 

Unsurprisingly the biggest factor is how well people are supported to get involved, active, and do the things they want to do. It also seems that people who need more support to do stuff or people with ‘challenging behaviour’ are less likely to get support that enables them to have a really good life.

Is any of this relevant to where we’re at now? Well, yes and no. Although I can’t believe this needs to be restated, long-stay institutions are really bad places for people to be. Overall, it’s also the case that smaller is better. But living in an ordinary house is not enough – people need others to support them in ways that people actually find useful, rather than obstructive. To me, ‘specialist housing’, with rounded edges or whatever wannabe service providers are claiming is necessary for people with learning disabilities, really seem to be expensive and unnecessary – more decent accessible housing open to anyone where people with learning disabilities have legal rights as tenants or owners is much more efficient in all sorts of ways.

There are also an awful lot of gaps. When this research was done, the very idea of a 48-bed ‘supported living’ unit would have been seen as an oxymoron. As an excellent series of recent NDTi reports has shown (see https://www.ndti.org.uk/resources/publications/housing-choices-discussion-papers for the first one), old ways of classifying ‘service types’ are becoming in some senses meaningless, certainly to the people living in them. Is a 48-bed supported living unit an institution, an ensuite residential care home, supported living, an intentional community, or what? The only way to find this out is to find out what people’s lives are like, and how people are being supported to live their lives vs what barriers/restraints are being imposed on people that get in the way.

Research in the UK about this, with a couple of honourable exceptions, has severely dwindled and not kept pace with how services are changing. Perhaps even worse, why aren’t local authority commissioners collecting or demanding this kind of information before they start making disingenuous cases for warehousing people? Why aren’t more big service providers collecting proper information about the impact of their own services on people’s lives and how to improve what they do? These people claim to be specialists – well, show your evidence or shut up with your disingenuous quality of life talk as a cloak for disinvesting from people’s futures.

Reference

Walsh PN, Emerson E, Lobb C, Hatton C, Bradley V, Schalock RL, Moseley C (2010). Supported accommodation for people with intellectual disabilities and quality of life: an overview. Journal of Policy & Practice in Intellectual Disabilities, 7(2), 137-142.