People with learning disabilities have the right to live as
equal citizens and that includes the opportunity to work. OH nurses can do much
to make this happen, By Susan Hart and Jane Pettingell
The year 2001 was significant for people with learning disabilities. Thirty
years since the last White Paper, called Better services for the mentally
handicapped1 the much-heralded, Valuing people: A new strategy for learning
disability for the 21st Century, was launched2.
Although published by the Department of Health, Valuing people is the
product of several Government departments. Its parameters are wide, its
intentions clear. People with learning disabilities should live as equal
citizens enjoying the opportunities that everyone cherishes, such as
relationships, leisure, education and work, underpinned by basic values,
rights, independence, choice and inclusion.
The White Paper contains details of how the Government will achieve these
goals. One objective is to "enable more people with learning disabilities
to participate in all forms of employment, wherever possible in paid work, and
to make a valued contribution to the world of work"2.
It is apparent the Government believes entering paid work is achievable for
many, although by no means all people with learning disabilities, and this will
help lead to the goal of "social inclusion".
These developments will become increasingly relevant to occupational health
nurses. This article seeks to explain what is meant by the terms ‘learning
disabilities’ and ‘social inclusion’. It will also consider some of the ways
people with learning disabilities are entering paid work and, based on the
experience of a ‘job coach’, consider how OH professionals may be best placed
to offer effective support in the workplace.
What is learning disability?
In the early 1990s referring to people with ‘learning disability’ became the
term of choice when referring to those who had previously been labelled
‘mentally handicapped’. As a descripton it is both time and culturally
specific.
In the 1980s ‘mental handicap’ replaced ‘mental sub-normality’ which in turn
had replaced the more stigmatising term ‘mental deficiency’. In Australia and
New Zealand ‘developmental disability’ is used, and, surprisingly in the USA,
the term ‘mental retardation’ is still common. In the UK, the term ‘learning
disability’ is today largely interchangeable with ‘learning difficulties’.
There is sometimes misunderstanding between the terms learning disability
and dyslexia. Broadly speaking, a learning disability is sometimes said to be
‘global’ and as such may affect any aspect of a person’s life from
communicating, reasoning and thinking things through to an ability to
self-care, making relationships and handling money, etc. Dyslexia, by contrast,
is a difficulty in learning, usually in one or more of the areas of reading,
spelling and written language, commensurate with intellectual ability.
Down’s syndrome is one of the better known causes of learning disability,
but there are numerous other less frequently occurring conditions for which the
cause often remains unknown3,4. However, it has long been felt that the actual
cause of a learning disability tells us nothing of what is important about how
we can work with people effectively.
Although categorising ability levels and assigning ‘labels’ to people is no
longer considered acceptable practice, occasionally it is expedient to
generalise. Broadly, learning disability can range from mild, to moderate, severe
and profound5 although the ability of individuals varies enormously.
The most disabled people today are described as having high support needs,
with additional disabilities, such as motor impairment, sensory disabilities or
epilepsy. But the majority of people with learning disabilities are able to
achieve considerable if not total independence, and are able to communicate,
care for themselves, enjoy relationships and manage practical and domestic
skills. Some marry and successfully raise children6.
Organisation of care and support
Hundreds of people formerly resident in institutions now live in ‘ordinary’
community houses7.
In the new ‘mixed economy’ of care, people are supported in various ways –
for example, by services provided by the NHS, local authorities, and housing
associations. Many people have always lived at home or independently.
Social inclusion
In the institutions care delivery was highly routine, with individuals
mostly receiving the same basic care at the same time8. Now, increasingly the
focus is on user-centred services and the promotion of independence9. As
Valuing people explains ‘social inclusion’ seeks to ensure that people with
learning disabilities become part of the main stream.
"Inclusion means enabling people with learning disabilities to do
ordinary things, make use of mainstream services and be fully included in the
local community,"2 it states
These developments over the years have increasingly fuelled the belief that
people could enter paid work. In 1997 the Mental Health Foundation report,
Building expectations, specifically stated that "many people with learning
disabilities would like to seek work É it increases their income, their
independence, their sense of purpose and contribution, their status and their
self-respect"10.
People with learning disability entering paid work
It is anticipated that more people will be encouraged to seek paid work
through ‘supported employment schemes’, often run by local authorities, as it
is certain that existing day service provision is set to change2.
Work can often be the most important aspect of life for a person with a
learning disability, with many using the term work to describe the activities
they undertake in a day centre. Work is associated with able-bodied,
independent people, and being ‘like them’ can be very important for some
people. More significantly however, the enhanced self-esteem and financial
rewards are as important to people with learning disabilities as they are to
anyone else.
"I like meeting people, getting to know people and working with
different people."
"I work at B&Q. I am what you call a customer adviser in gardening.
I get paid monthly. I’ve been there about four years now. I had two interviews
and I get there on my pushbike."
"I stack shelves with two other ladies É I work nine to two three days
a week. I don’t get paid yet because I am on trial É I started eight months ago."10.
Supported employment schemes
These services match a person to a job they would like and are able to do. A
‘job coach’ learns the job and introduces the person to the work. This may
start with ‘travel training’ such as learning which bus route they will need to
use to get to work, as well as other factors about the job itself, such as
where to go for breaks and how to dress for work. Support in any aspect is
ongoing, fading only as the person’s ability and confidence grows.
People with learning disabilities in work
All people are different, with varying needs and abilities to communicate to
make their needs known. This equally includes people with learning disabilities
who may present some out of the ordinary challenges in the work environment.
It has been noted, for example, that some people may be reluctant to take
time off when they are ill, as they fear losing their job. It is not rare for
people to like their work so much they do not even notice that they are ill.
Routine activity is often important in their lives, and they may try to
continue working regardless of other circumstances.
Stress may present in unexpected ways, for example through ‘difficult’
behaviour, or behaviour which is out of the ordinary. In one instance a person
suddenly resigned from a job he enjoyed. It was found that he was becoming
unhappy about an aspect of his work, but did not know how to talk about it.
Once understood, this situation was addressed and the problem was resolved.
Social isolation can be a problem in the workplace. Although many people are
accepted as work colleagues, others may struggle to fit in, especially if they
are not particularly welcomed. In such a situation, a person with learning
disabilities may not have the skills and confidence to break down the barriers.
Bullying of a person with learning disabilities can be a problem, just as
for anyone else. This may not be by close colleagues or managers who get to
know the person, like them and value their work. But it could be the ‘lads’
from the packing department making comments or mimicking. People with learning
disabilities may not have the confidence to report the behaviour, which if left
unchecked can lead to them, like others, experiencing considerable distress.
Use your imagination
Supporting people who have learning disabilities often requires imaginative
approaches. An otherwise excellent employee with a learning disability always
took too long for her tea break. It was eventually established that she could
not tell the time. With her agreement she is reminded of the time by her
colleagues and she now promptly returns to her duties.
A man was supported to become a dishwasher in a Chinese restaurant. He could
do the job well. However, he became distressed because he could not understand
what the waiters were saying and began to believe they were talking about him.
In fact, they were speaking Chinese. It helped when the job coach intervened
and admitted she did not understand them either.
As outlined above many people with learning disabilities often have
additional needs, for example, because of epilepsy or sensory or physical
disabilities. Understanding idiosyncratic behaviour can be helpful (for
example, a person we know benefits from drinking Coca-Cola following a
seizure). The job coach is likely to have such information and be a useful
resource.
It is important to consider the person’s support network. Flexible working
times may be helpful where an individual relies on other people for transport
to work. Although willing, people may be unable to volunteer for extra hours at
busy times, unless they can be supported.
Processes reliant on the written word can be problematic for some people.
Confirming an appointment by letter or following up a meeting with notes may
not be helpful if the employee is unable to read. Some people may ask a carer
for help, but others may just put the letter in a drawer or throw it away.
It is important that occupational health assessments do not over-compensate
for people’s needs. It is helpful to remember that the person has lived with
the disability for a long time. If for example, they hold a piece of paper very
close to their face when reading, they have probably always done it like that,
and although ill advised under normal circumstances, it may be as well to
acknowledge this with them and resist any well-intentioned suggestions to
change the behaviour.
People with learning disabilities have life crises like everyone else
(relationship breakdown, bereavement, etc). However, some may find work
particularly difficult at such times, but may still keep coming for the reasons
outlined above. It is useful to take note of non-verbal cues when working with
the person and consider their behaviour. Poor grooming, looking unwell, a
change in regular routines, for example, may indicate a person is unwell or
unhappy, although they may not have said anything.
Sensitivity is vital when discussing the job with the person. A good example
of this concerns absence monitoring. A woman who had not had a day off sick in
her entire six years of paid work, was very unwell with ‘flu and was forced to
take a week off. By chance, her name appeared in an absence monitoring
exercise. Her manager took account of her record and knowledge of the
individual to understand that she would be distressed to be ‘spoken to’ about
her absence (which was known to be genuine) and bypassed the procedure.
Conclusion
Undoubtedly more people with learning disabilities will be likely to enter
employment in the years to come. Hopefully, most will settle well and become
valued members of staff. In many workplaces, the understanding, sensitivity and
support from occupational health professionals may well be central to such
successes.
The most frequently occurring reasons for the job not being successful are
the dislike of someone, journey difficulties or the job being too difficult.
References
1 DHSS (1971) Better Services for the Mentally Handicapped, Cmnd 4683, HMSO,
London
2 Department of Health, March 2001, Valuing People: A new strategy for
learning disability for the 21st Century (Cm 5086) White paper
3 Gates B (1997) Understanding Learning Disability, in Gates B ed Learning
Disabilities (3rd Edition) Churchill Livingstone, London
4 Watson D (1997) Causes and Manifestations, in Gates B ed Learning
Disabilities (3rd Edition) Churchill Livingstone, London
5APA (1995) Diagnostic and Statistical Manual of Mental Disorders (DSM111)
4th Edition, APA, Washington
6 Booth T, Booth W (1997) Exceptional Childhood, Unexceptional Children:
Growing up with parents who have a learning disability
7 Korman N, Glennester H (1990) Hospital Closure. Open University Press,
Milton Keynes, UK
8 Goffman E (1961) Asylum: Essays on the social situation of mental patients
and other inmates. Doubleday, New York
9 Kings Fund (1980) An Ordinary Life. King Edwards Hospital Fund for London
10 Mental Health Foundation (1997) Building Expectations 1997: Opportunities
and services for people with a learning disability. The Mental Health
Foundation, London
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Susan Hart is a clinical lecturer in learning disability at the European
Institute of Health and Medical Sciences, University of Surrey.
Jane Pettingell is principal manager, day services, with the London
Borough of Richmond upon Thames.
