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.
