Thursday, 17 October 2013

Self-determination and the closure of Scope's residential homes



Scope’s announcement that it is embarking on a programme of closing residential homes faces two sets of criticisms.  For those campaigning for full social inclusion for disabled people, Scope can never go far enough or fast enough to close down institutions (schools, colleges and Homes) which are seen as sites of oppression and exclusion.  On the other hand, for many of those who live in what is their home – some of whom have lived there for over 20 years – there may well be justifiable fear of moving, and anger that a decision which fundamentally affects their lives has been taken without their involvement. Although residents and family members will be 'consulted' during the process of making the changes, there is no getting away from the fact that the decision to close was made without their involvement.



Setting the decision in not only its current, but also its historical context helps us to understand that we should be wary of assuming that laudable motivations necessarily lead to good outcomes.



Before exploring this, I want to make clear – as otherwise I know I am in danger of being misinterpreted – that I completely support Scope’s decision to close residential homes and, like many, I wish they had taken this decision years ago.



Today, Scope is criticised for running segregated education for disabled young people.  This is a long way from the origins of the organisation, when three parents and a social worker formed the Spastics Society in an attempt to give children with cerebral palsy – at that point deemed uneducable – a right to education. Today, Scope is criticised for not being a genuine ‘of’ organisation – i.e. run by disabled people.  Yet its beginnings are to be found in parents’ dissatisfaction with the way disability organisations of the 1950s were dominated by professionals and mainly concerned with research rather than disabled people’s opportunities. 



Similarly, it is worth remembering that another major provider of segregated services, the Leonard Cheshire Foundation, had its origins in an explicitly human rights framework. Both organisations, like many others which were founded in the period after the Second World War, set up segregated services – residential homes and special schools – as a reaction to the denial of opportunities for disabled adults and children.  While such services have become locations of social exclusion, the values motivating their founders were in fact very similar to the values motivating the fight for their closure today.



The parents who campaigned for education for their disabled children in the 1950s would have had no quarrel with Scope’s vision set out in its 2013 Strategic Direction, of “a world where disabled people have the same opportunities as everyone else”. But where, in the 1950s, segregated provision was seen as a means of achieving these opportunities, today we believe it is a major barrier.



Indeed, how can it not be?  The arguments being made by some against Scope’s decision to close a third of its residential homes actually demonstrates why such provision should have no place in disabled people’s lives today.  The decision itself illustrates the unequal power relationship which is inevitably created when someone moves into a residential home.  This is a service which provides what is at the core of all of our lives – a place to live.  Moreover, because it concerns people who need assistance to go about their daily lives, it is a service which determines what you can do each day, what opportunities you have, and whether you can make decisions over the most basic things as well as the most important things in your life.



Yet the decisions about whether people can continue to live in these Homes are made by others, not by the people living there. Those decision-makers are motivated by the best of reasons – to promote civil and human rights. They want to promote disabled people’s right to autonomy, to self-determination, but the decision-making process itself denies such right, as is illustrated by some of the responses to Alice Maynard’s blogpost about the decision. 



But this in the end demonstrates the fundamental correctness of the decision.  The way such residential provision is organised (and funded) sets up an unequal power relationship and we have to confront the fact that it is this unequal power relationship which is yielded in order to make the decision to close the Homes.


However, while supporting the decision, and the values behind it, we cannot trust the outcome. 



There are two major barriers in the way of good outcomes for the individuals involved.  One is the context in which the changes are being made.  As Scope itself points out, there is a social care crisis which currently means that almost 40% of disabled people receiving social care support are not having their basic needs met including eating, washing, dressing or getting out of the house.  And things are set to get worse. There is a very real danger that people will experience a reduction in the level of support they receive – being confined within the four walls of ‘independent’ housing with the bare minimum of support is not the outcome which anyone would want. As Mark Neary has pointed out in the context of the closure of day centres, phrases like “accessing the community” have been used to put a progressive gloss on what is, in reality, a dramatic decline of support. 



The second barrier is a stubborn lack of understanding about what ‘independent living’ means.  It does not mean living on your own, or even living in your own home.  It does not mean ‘doing things for yourself’.  Independent living is about full citizenship, and is most fundamentally about self-determination.  You cannot have self-determination if you cannot decide where you live, who you live with, and who provides you with daily living support.  Self-determination – autonomy – is a fundamental human right. The segregation and exclusion currently faced by many disabled people is a direct result of others making decisions on their behalf.   



Many of Scope’s service users have significant communication impairments and this can be an additional barrier to self-determination.  If you do not have people in your life who understand how you communicate your preferences, then you cannot even get anywhere near having self-determination.  In 2002, Scope published a Good Practice Guide for those working with people with communication impairments. It was written by disabled people from Essex Coalition of Disabled People who had provided training for both workers and service users in some of Scope’s residential homes, and was co-produced with them.   

It was, in fact, while delivering training in the Homes that it became apparent that the basic building block of enabling choice and control was often lacking. It was common to be told “He can’t communicate” or “She has severe learning disabilities and won’t be able to tell you anything”.  The lessons learnt – and the good practice guide – are as relevant now as they were then.   



The contradiction at the heart of Scope’s decision about its residential services – a contradiction which means the decision is both right and wrong – will only be resolved if what is put in place is underpinned by self-determination. And this goal has to be pursued for everyone.  Anyone can express a preference, whatever their level of communication or cognitive impairment – the responsibility is on us to find ways to understand those preferences. Unless this fundamental human right is realised, the outcomes of today’s decisions will only be criticised in the same way that the outcomes of the decisions of 50 years are today.

4 comments:

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  2. Scope says that the proposals to close will cost £3.8m in consultancy, support and advocacy costs, money raised by a generous British public. Why waste money on closing perfectly good homes, such as the Douglas Arter Centre in Salisbury, which houses nine residents with multiple disabilities and multiple needs? This is a home which the Quality Control Commission recently passed with flying colours. And parents praise. Surely investing these closure costs in improvements would be best? As for human right issues, having a family member who attends one of these Scope homes, we have made this choice with her. She, unlike some of the residents is able to communicate and over the years, has protested about various schools/ day centres she has attended (some of those schools when she was undiagnosed were not for the disabled). When she does complain, we work with her to make changes, speak to staff or change where she attends. I think it is rather ignorant to suggest that all residents do not make their own decisions and have no human rights, because contrary to your blog, some of them do make those decisions.

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  3. Thanks for your comment. I think you've misunderstood what I was saying. I was attempting to acknowledge that many residents want to continue living in the Scope homes, while at the same time acknowledging Scope's good intentions of wanting to use their resources in ways more suited to today's aspirations of and for disabled people (whatever their level or type of impairment). My knowledge of people living in Scope's homes (and Leonard Cheshire homes) is based on empowerment work that myself and a colleague did in the 1990s and early 2000s. We worked with both disabled people and staff to help create situations where people could exert choice and control, in full recognition that many staff were very committed to doing this. We also trained a number of others to work with staff in residential homes to help create situations where residents could have choice and control in their lives. At the same time, before I retired I also carried out research - some of it commissioned by Scope - which found that some of the residents in their homes were living unnecessarily restricted lives. It's a very complex issue and I had hoped that I had conveyed some of these complexities in the blog but I obviously failed as far as you were concerned, which I regret.

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  4. I agree with you in many ways, but Scope's closures are not giving residents independent living, by doing so Scope are handing over resident care to the council. Scope washing their hands of homes that they consider devalues their belief in independent living, is sadly creating worse off situations for residents, as they are not creating a solution, but passing these residents onto the council.As we know councils fundings have been cut and residents are being faced with being housed in different homes many miles from loved ones, or if elderly, in old peoples homes. Some residents who sadly have no family, will have no choice in where they are located.

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