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.

Wednesday, 9 October 2013

Are there certain things that we value which cannot be delivered by market forces?

There’s been a lot of welcome publicity these last few days about the increasing use of zero hour contracts for homecare workers, and of rushed 15 minute visits for people who need intimate personal care.  Last night on Channel 4 News Rochelle Monte, a homecare worker, talked of the huge turnover of staff caused by poor wages and conditions of employment. 

This reminded me of a question which the philosopher, Michael Sandel asked at a Labour Party fringe meeting last year: “Are there certain moral and civic goods that markets do not honour and money cannot buy?”

This is a fundamental challenge to many areas of social and economic policy, such as the re-organisation of the NHS, but it is particularly a challenge to social care policy.

The nature of our society is increasingly determined by policies based on the assumption that good choices are made and good services delivered through self-interest and financial incentives.  The 1990 NHS and Community Care Act ushered in the ‘purchaser/provider split’ in social care services and after more than 20 years of privatisation, it is the market which determines the nature and quality of care services, rather than moral or political decisions about what kind of lives we want for ourselves and our communities.

But are there certain things that we value which cannot be delivered by market forces? 

Can people who need help to go about their daily lives - help which involves intimate care, that enables someone to access the most basic human rights like privacy and communication - rely on the profit motive to deliver this assistance in a way which protects and promotes their human rights?  Giving and receiving intimate care is not the same as having your car serviced.  To rely on another person in such a way is inevitably associated with a vulnerability to abuse, unless the person providing the care holds and promotes values which in many instances are incompatible with the profit motive.  Maximising profit requires holding down wages, increasing productivity by reducing the amount of time spent on each task to a minimum, only investing in training to provide basic competence, and minimising regulation.

This is not to say that services run by public authorities are necessarily any better at delivering our human rights.  The devaluing of the lives of disabled and older people was manifest in the abuse and poor care standards of the old asylums and institutions.  The mistake was to replace them with organisations motivated by profit and answerable to their shareholders.  The desire to drive down costs leaves little room for the development and delivery of services which are motivated by values relating to the public good and answerable to their users.

The early campaign by disabled people for direct payments was always clear that giving individuals purchasing power was only a means to an end, not the end in itself.  Disabled people’s local organisations (Centres for Independent Living) promoted a value system which would challenge vulnerability to dependency and abuse, and instead develop empowering ways of delivering assistance.  But much of this was lost as organisations struggled to survive and the more traditional charities and private sector organisations competed for contracts in a commissioning process which values cost (‘efficiency’) more than quality.

As Michael Sandel said: “If market practices sometimes crowd out non-market norms and attitudes worth caring about, then, in order to decide where markets serve the public good and where they don't belong, it is not enough to consider standard economic efficiency considerations alone. It is also necessary to anticipate when values and attitudes worth caring about may be crowded out by market considerations, and then to ask how important are those values and attitudes to our society.”

When disabled people campaigned for independent living in the 1980s and 1990s, we were campaigning for a different value system to that which had dominated both statutory and charitable support services.  Our tragedy has been that the progress we made on independent living coincided with the increasing marketisation of public services.  While private sector organisations may often use the language of empowerment, the bottom line is whether they can make a profit out of us.

Earlier this year, the Equality and Human Rights Commission published Guidance on Human Rights for Commissioners of Home Care

These are the values which need to replace the pursuit of profit and the driving down of wages and working conditions.