Labelled and Locked Away

CASE STUDY

The name of the service user  has been changed.

SITUATION:

Michael Simmons is 36 and has lived in a number of long-term
institutions since birth. His mother, a single parent who had
learning difficulties, was never allowed to see him and died when
Michael was 10. No extended family has ever come forward.

PROBLEM:

With hospitals and long-term institutions closing, Michael was
struggling  to be placed within the community. The stumbling block
was that he had been labelled an arsonist. But one charitable
organisation decided it would accept Michael’s placement, intending
him to move into one of its homes in a residential area with a very
high degree of support. But staff were concerned about possible
arson and thus it was agreed that – with 24-hour care support –
Michael would instead move into a one-bedroom detached cottage in
the grounds of a rural, more isolated and larger care home. Michael
settled in well (he was used to and prefers the open space away
from people). However, on reading Michael’s enormous file in detail
his keyworker discovered that Michael’s “arson” history was but one
episode when he was 11: getting up late at night in his residential
special school, he burned some toast in the grill from which the
kitchen caught fire; it was extinguished quickly. The organisation
now wants to place Michael into the community as first planned but
Michael doesn’t want to leave his cottage.

PANEL RESPONSES:

Linda Walz

It may be that the inaccurate records have led to Michael
receiving the service he really wants. However, people with
learning difficulties generally have particular problems with
abstract thinking, and Michael’s lack of experience of life outside
an institution would make it difficult for him to make an informed
choice about where he wants to live.

Developing a person-centred plan would give Michael the chance
to explore and understand his history, and how it might affect how
he feels about himself now. It would allow those supporting Michael
to understand what his hopes and fears might be and whether he is
choosing to remain in the cottage because he is really happy there
or because he is unsure of the alternatives.

It would be helpful to work with him to tease out what he likes
about his isolated rural life and whether those aspects of this
lifestyle could be replicated in a different setting. If his fears
could be identified then it may be possible to reassure him or work
with him to give him the confidence he needs to confront them. It
would be helpful to gradually introduce him to wider social
networks and community facilities and to build up his experience of
making choices for himself. Choice-making is a skill developed
through experiences that have often been denied to people living in
institutions.

Michael has lived with the label of arsonist for many years
which has influenced the way people treat him. He may need some
help to understand that this was a mistake as well as support to
explore his feelings about this. He may well be very angry as he
realises the effect that this “mistake” has had on his life and
those working with him need to be aware of this and help him to
direct his anger. He should be given the opportunity to review his
notes with support and to arrange for them to be corrected.

Michael should be offered an advocate to support him in thinking
about where he wants to live and in correcting the notes, perhaps
to the point of making a formal complaint. If the outcome of the
person-centred planning and other work with Michael is that he
wishes to remain in the cottage this should be respected.

Mike MacCallam

Throughout his life Michael’s choices and opportunities have
been severely restricted because of him being “labelled” – first as
a person with a learning difficulty and, second, as an arsonist. 
It would seem that services have been too quick to place these
labels upon him, failing to recognise Michael as a person, and
having done so, then consigned him to a life of institutionalised
care.  We don’t know the extent of Michael’s mother’s learning
difficulty; however, Michael was a child and his mother was his
mother and for each to have been denied this relationship was a
clear abuse of their rights.

In a similar circumstance today one would hope that the emphasis
would be on enabling Michael’s mother to fulfil her role as a
parent with the appropriate support from others.  It should also
not be presumed, because his mother had learning difficulties, that
this would automatically be the case for Michael.

Having known nothing but institutional care from birth,
including residential school, Michael will have had little
opportunity to develop the social and cognitive skills of which he
might be capable.  At 36, Michael is a relatively young man, and
may have the potential to make great strides towards a more
independent lifestyle.

Using a person-centred approach, Michael could be supported to
think about how he wants to lead his life and what help he may need
from others.  It should be recognised that it may take many years
to overcome the learned behaviours from living in institutions.

Being wrongly labelled an arsonist has also deprived Michael of
many choices.  This serves to highlight the consequences not only
that inaccurate recording can bring, but also of a lack of respect
for Michael in that no one saw fit to review or challenge this
statement for almost 25 years, yet it has been used as the main
reason why he has been unable to move into community living.

The Date Protection Act 1998 allows an individual the right to
access information that is held about them.  Michael may wish to
exercise this right to review and correct the information on his
file, and the supporting organisation should consider using an
independent advocacy service to help him with this.

USER VIEW:

This story about Michael makes us really sad. It seems to us
that staff did not take the time to find out about Michael and his
life or, even more importantly, to ask him what he wanted when it
was time for him to move out of the long stay hospital, write
Gordon Celnik, Colin Gear and Sarah Jarmine.

Instead, staff got panicky when they heard he was thought of as
an arsonist.  They got rapped up in this label and made all of
their decisions based on this label and without asking Michael.
Because they got stuck on this label, they made a big mess of
Michael’s life. Now, they are rushing to try and fix it. But
Michael  seems like he is settled in his cottage and doesn’t want
to move. Staff need to respect this. 

Michael should have been asked what he wanted and what support
he needed. He should have had an advocate – if he wanted one – to
help him talk about these things. He should have been offered
support to meet other people with learning difficulties living in
the community or residential areas so he could see what this is
like. 

His keyworker should have read his file carefully before he was
sent off to the cottage. Not reading his file is a bit like how
people did not read the file on Victoria Climbie very well, and
look where sloppy work got Victoria – dead. His keyworker should
have known how our people so often have labels put on us that are
wrong or are not backed by evidence. Once we get a wrong label, it
sticks for life. You can’t get rid of it.

We can’t change the past, only be better in our actions now. So
what should happen? Michael must be given the choice of where he
wants to live. As much as we don’t like long-stay hospitals and
institutions and think they should be closed, we don’t want to see
our people dumped in the community without getting good support to
move out. If Michael wants to stay in this cottage, he should be
left there until he is ready to move or he has had the chance to
see how other people with learning difficulties live.

He should be given support to meet up with other people like us
who live in residential areas. There is a good chance that over
time he will want to move into a city. Or, maybe he would want to
move into a village which is more residential, but not as big as a
city. They must not rush Michael because it was rushing and
believing the label rather then the person that got everyone in
this mess to start with. Always remember: label jars, not
people!

Gordon Celnik, Colin Gear and Sarah Jarmine are members
of Milton Keynes People First, a self-advocacy group for people
with learning difficulties