Pointless policy

Historically, “welfare” policy has played a reprehensible role
in forcibly resettling people with learning difficulties and mental
health service users in segregated institutions and settings. The
consequences are still with us.

It has now been confirmed that the April 2004 deadline for the
closure of the long-stay “learning difficulties” hospitals set by
the white paper Valuing People will not be met. There are
growing fears that policy makers will flail about desperately in
search of quick fix solutions. We have already seen the
consequences of failing to make adequate and appropriate
alternative provision with “care in the community” for mental
health service users.

The real victims here are service users. This policy failure has
resulted in them being pilloried as a public threat. Mental health
service users currently have some of the most draconian legislative
proposals in modern times hanging over them.

Many have been left to lead wretched and lonely lives in high rise
flats and isolated bedsits. No wonder that the director of the
charity Crisis, which provides emergency services for homeless
people over the Christmas period, recently stated that two-thirds
of the people who it provides for are not actually rough sleeping.
Instead they are “lonely” and “vulnerable” people (many mental
health service users) who come to enjoy the company and
support.

Two personal snapshots of people with learning difficulties stay
with me from 2003. First, on holiday in Norfolk, queuing for a boat
trip on the Broads behind three people with learning difficulties
and their two supporters. Two had physical impairments and a lift
made boarding the boat a simple and speedy business for them. The
only comment I heard from other people was: “What a great idea that
everyone can come”. Thank God for disability discrimination
legislation – whatever its current limitations – and the disability
activists who won it for us.

Second, sitting having a cuppa in my local park and seeing a large
party of people with learning difficulties and their paid helpers.
It could have been a scene from half a century ago. Not a word,
gesture or touch exchanged by the workers with the service users.
Instead the workers chatted among themselves. This silent group
made its way in isolation along the leafy path and then got into
the special badged and segregated minibus. As it left, I watched
the service users turn their heads to look out of the window.

I have learned many things about services for people with learning
difficulties over the years. You can live in enormous or small
residential settings, or even your own home – and still be
institutionalised. Wherever you live, the workers (residential and
non-residential) can make all the difference, transforming your
experience for both good and bad. I’ve seen examples of individuals
who had previously been written off as having “profound handicaps”
or “challenging behaviour”, having their own home, gaining
abilities and living a life few would previously have thought them
capable of, with appropriate resources, sensitive support and
imagination. But I have rarely seen this become mainstream
policy.

I have learned that policymakers are much better at imposing
change, even when it is the opposite of what they previously
advocated, than responding to the particular wants of individual
service users. It isn’t just the particular policy that’s
important. It is how it is decided, developed and applied for each
single person. So removing people on an ad hoc basis from hospital
was never going to be a solution. It is likely to be as unhelpful
as putting them there in the first place. It is as lacking in an
evidence base as the medical arguments, which still surface, that
“some people” with learning difficulties need to be in a hospital
environment.

No one is saying that getting all people with learning difficulties
to be involved in making decisions about their lives will be quick
or easy. But it is possible. As James Edge of Values Into Action
wrote in 2001: “People who do not use speech or sign or do not
respond clearly to questions nevertheless express their likes and
dislikes through sounds, behaviour and expression.”

There must be no excuses for not involving everyone still in
long-term hospitals in making the best of the rest of their
lives.

Peter Beresford is professor of social policy, Brunel
University. He is active in the psychiatric system survivor
movement.