David Thomas, Honor Woods Working With People With Learning Disabilities - Theory and Practice 2003

Working with People with Learning Disabilities
of related interest
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Working with People
with Learning Disabilities
Theory and Practice
David Thomas and Honor Woods
Jessica Kingsley Publishers

London and New York
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1988.
First published in the United Kingdom in 2003

by Jessica Kingsley Publishers Ltd
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Copyright © 2003 David Thomas and Honor Woods
Second impression 2003
Third impression 2004
Library of Congress Cataloging in Publication Data

A CIP catalog record for this book is available from the Library of Congress
Thomas, David, 1962 Apr. 24-
Working with people with learning disabilities : theory and practice/David Thomas
and Honor Woods
p.cm
Includes bibliographical references and index
ISBN 1-85302-973-4 (pbk : alk paper)
1. Learning disabilities. 2. Learning disabled children. I. Woods, Honor, 1950-II.
Title.
RC394.L37T46 2003
362.3’8--dc21
2002043373
British Library Cataloguing in Publication Data
A CIP catalogue record for this book is available from the British Library
ISBN 1 85302 973 4
Printed and Bound in Great Britain by
Athenaeum Press, Gateshead, Tyne and Wear
Dedication
To Mary, Harold, Jill, Emma, Amie, Ben

and Laura, and to John and Ben
CONTENTS
Acknowledgements 8
Disclaimer 8
Introduction 9
1 What is a Learning Disability? 11
2 Application of Theory 33
3 Anti-Discriminatory Practice
and Anti-Oppressive Practice 45
4 What is Normalization? 65
5 Communication Methods 81
6 Advocacy, Empowerment, Participation and Choice 99
7 Universal Human Experience in the Lives of People
with Learning Disabilities 117
8 Values, Ethics and Contrasting Approaches:
Person Centred and Behavioural 141
9 Practical Theories and Methods 177
10 Society’s Influences on Practice 215
11 The Way Forward 243
Conclusion 259
References 261
Subject Index 273
Author Index 286
ACKNOWLEDGEMENTS
We would like to thank all the people that have helped and supported us throughout
the process of writing this book. In particular, and at the forefront, we would like to
thank our immediate families and friends for their understanding and support. Each
has played a crucial part through their encouragement, time spent listening to ideas,
reading and debating. A very special thanks is extended to Mary, Greta and Jill for
their time and inspiration given so readily. We would like to thank the many people
with a learning disability who have provided us with information, understanding
and insight and have taught us so much. The support provided by the publishers has
been greatly appreciated and their guidance on how to transform ideas into a
manuscript and then into a book has been invaluable.
DISCLAIMER
The case studies used within this book are based on realistic working
situations; however, the people appearing in the studies are all fictitious. Any
resemblance to people living or dead is purely coincidental. The authors
have been meticulous in making certain that confidentiality has not been
breached.
Introduction
‘Learning difficulty’ or ‘learning disability’, which term should be used?

This is a difficult question to answer and one about which views vary. Ideally
people should be referred to by name and not be labelled with a definition
that encompasses many different ability levels. In the 1980s the term
‘learning difficulties’ started to replace the use of the term ‘mental handicap’.
The use of learning difficulties emerged essentially from the Warnock
Report which introduced it as a term to embrace all children with special
educational needs. In part, its introduction focused on being more positive
and reducing stigmatization. The term was generally applied to children in
education; however, there were and still are some who apply it to adults.
Later, learning disabilities became the definition more regularly used in
relation to adults. In reality the terms ‘learning disability’ and ‘learning
difficulty’ are, to an extent, used interchangeably to describe someone who
has ‘intellectual functioning that is more limited and is developing or has
developed more slowly than is the case for most of the population’ (Thomas
and Pierson 1996, p.201). The debate over definitions and labels will
continue; however, we will use the term identified by the Government and
used by many others. Therefore throughout the book we will predominately
refer to people with learning disabilities. No offence is intended to people
who prefer to use the term ‘learning difficulties’.
Working with People with Learning Disabilities: Theory and Practice was con-
ceived during the authors’ working relationship as practice teacher and so-
cial work student studying for the Diploma in Social Work. Both authors
have a particular long-term interest in the field of learning disabilities and
have diverse practical experience in residential, day care and community
based services.
Over a number of years both explored theories and their transferability
to direct working practice and identified the difficulties in finding appropri-
ate literature that placed theory into learning disabilities based practice.
Some texts examined theoretical perspectives, whilst others focused on peo-
ple with learning disabilities and various aspects of their lives. A combina-
tion seemed to be missing and thus the idea for the book was developed.
9
10 WORKING WITH PEOPLE WITH LEARNING DISABILITIES
The book is written to be used in two ways. One as a book, the contents
of which make a journey which starts from the initial understanding of a
learning disability. It moves through the process of theory to practice, look-
ing at oppression, discrimination and the use of different theories leading to-
wards a way forward in using theoretically based practice.
The book can also be used as a text that can be dipped into as required,
each chapter standing on its own. As different areas of study or work are un-
dertaken, specific chapters can be used. Case studies are given in most chap-
ters and are presented in a way that draws evidence and reasoning from the
general theories being discussed. Each case study highlights how theory can
be used to inform and underpin practice and thus positively support and em-
power people with learning disabilities.
The authors have considered not only the practice teacher and student
roles but the diversity of people who may use theory to inform and underpin
practice within the field of learning disabilities. It appeared logical to write a
book that could be used as a learning tool for students and a learning guide
for practitioners. The book is consequently aimed at any person who is ac-
tively involved with, or has an interest in, people with learning disabilities.
For example, people within:
• social care
• social work
• nursing
• voluntary sector care
• private sector care
• university and college social care, social work and nursing courses.
It is hoped it will also be of interest to anyone who may have a family
member or friend that has a learning disability and wants to understand in
more depth some approaches that are used in care and support. Whilst they
predominantly focus on the social model of care, case studies are used that
are applicable to all sectors of the readership.
The book therefore is designed to be broadly accessible and a practical
guide to a variety of theoretical perspectives and their application. It also
gives references enabling a deeper insight into areas as required. It is hoped
that each chapter will provoke thought, raise questions and enable develop-
ment of the care and support roles.
The authors have aimed to show the importance of theory informing
practice and how this can enhance personal and professional development.
1
What is a Learning Disability?
INTRODUCTION
In this initial chapter we will explore what is meant by a learning disability
from a variety of perspectives. The exploration will start with a definition
and to offer contrast will identify names and descriptions used over the
previous 100 years or so. Through this we hope to develop an understanding
of how some terms previously used to describe learning disabilities are still
apparent and in use today. The implications of using outdated terminology
in the present complex care structure will be explored.
Consideration will be given to the medical and social models of disabil-
ity as each holds its own values and powers, both positive and negative. The
influence of the different models will be examined and the effect they have
on people with learning disabilities highlighted. The methods used to diag-
nose learning disabilities and some relevant terminology will be explored.
The need to categorize and label a person in a given model and the attendant
potential for discrimination will be considered. Two case studies based in
practice settings will be used to illustrate some issues raised in this chapter.
WHAT IS A LEARNING DISABILITY?

To begin the exploration of what is meant by a learning disability we will
give an initial definition: ‘the Government-approved term for intellectual
functioning that is more limited and is developing or has developed more
slowly than is the case for most of the population’ (Thomas and Pierson
1996, p.202). As the quotation indicates, a learning disability is the
terminology used to label people that function at an intellectual level that is
significantly lower than the average level of people in society. Many different
forms of terminology have been used in the past. The labels and titles used
have changed many times over the past century and the changes have been
11
driven by several influences. These have included ideological considerations

of the time and through developing theoretical conceptions challenging and
exploring the way people with learning disabilities are thought about and
cared for. Subsequent legislation has tended to reflect such changes.
We hope that understanding the evolution of the labels used will provide
insight into the changing attitudes of today’s society towards people with a
learning disability. We have chosen to consider the evolution of terminology
over the past 100 years and recognize that more could be learnt from look-
ing back further into history. It is not intended to give a definitive historical
guide, rather an overview of terminology and its development. We will high-
light some of the terminology used and show how it has been reflected in
various pieces of legislation.
In the early part of the 1900s the term ‘feebleminded’ was often used to
describe people with learning disabilities. This was reinforced in 1908 with
the Report of the Royal Commission on Care and Control of the Feebleminded (Royal
Commission 1908). The introduction of the Mental Deficiency Act in 1913
used some similar terminology such as ‘feebleminded’ but additionally de-
scribed people as ‘idiots, imbeciles and moral imbeciles’. The terminology of
‘moral imbecile’ was changed to ‘moral defective’ in the Mental Deficiency
Act of 1927.
In the post war years the Beveridge Report (1942), Social Insurance and
Allied Services, promoted a sense of collective responsibility. This had limited
impact on people who were ‘moral defectives’. The promotion of the medi-
cal model of control and care at the time reinforced the custodial nature of
many institutional hospitals. This approach continued for some years. The
findings highlighted by the 1954–57 Royal Commission on Law Relating to
Mental Illness and Mental Deficiency were startling. In 1952, there were over
54,000 in institutions with 70 per cent of people having been retained in ex-
cess of five years (HMSO 1957). In this report many areas of care were
criticized including educational opportunity, care facilities and release
opportunities. Terminology used in the summing up makes interesting
reading:
The idiot, the imbecile and feeble-minded are an integral part of the hu-
man race; their existence constitutes an unspoken demand on us. The
extent to which we guard their right to the fullest and most useful life,
the extent we guarantee to them maximum freedom which they can en-
joy and the extent to which we help their families to give them the love
they need, is a measure of the extent to which we ourselves are civilised.
(HMSO 1957)
WHAT IS A LEARNING DISABILITY? 13
Even though the idea was positive the terminology used remained, from
today’s perspective, negative and discriminatory.
In the USA in the 1950s the term ‘subnormal’ was introduced. This was
followed by the vogue description of the time, ‘backward’. In 1946 the As-
sociation of Parents of Backward Children was founded and as this associa-
tion evolved it changed its name and is currently known as Mencap.
The Mental Health Act 1959 used the terms ‘subnormal’ and ‘severely
subnormal’. In the 1970s the terminology ‘the mentally handicapped’ came
into use. Handicapped was used as a term to identify people unable to look
after themselves, requiring support or charity from others. In 1972 the Brit-
ish Institute of Mental Subnormality was formed; this has now been changed
and is known as the British Institute of Learning Disabilities, often referred
to as BILD.
In the 1980s ‘people with mental handicap’ became the preferred term
of those in power. For the first time acknowledgement was given that people
with learning disabilities were firstly people. The introduction of advocacy
and the People First movement in the mid-1980s brought people together
and started the process of enabling people with learning disabilities to have a
voice. At that time the consensus of people with learning disabilities was to
be called ‘people with learning difficulties’. This term is still used and is gen-
erally applicable to children in education. However, this term still does not
escape criticism; the main concern is its vagueness. A learning difficulty may
not necessarily be related to people who function at an intellectual level that
is significantly lower than the average level of people in society. A conflict
arose between the labels placed upon people and what the people themselves
wanted to be called.
In 1990 the Department of Health officially adopted the term ‘people
with learning disabilities’. This has been predominantly used since that time
even though many individuals and advocacy groups have challenged it. The
original wish of the advocacy groups and self-advocates was recognized by
the Central Council for Education and Training in Social Work (CCETSW
1992). This was effected by using the term ‘learning difficulties’ throughout
the paper that looked at new services for people with learning disabilities.
PRESENT LEGISLATION
Terminology used to define a learning disability will now be explored in
relation to legislation (legislation is covered in more depth in Chapter 10).
The key piece of legislation that underpins community care is the Na-
tional Health Service and Community Care Act 1990. Specific terminology
such as learning disabilities or learning difficulties is not used in the Act, as a

different way of describing people is given. In this the generalized term of
‘vulnerable’ is used to identify people who should receive assessment. To
find out how ‘vulnerable’ is defined requires use of a different piece of legis-
lation, outlined below.
Section 29 is a part of the National Assistance Act 1948 and provides a
definition of ‘vulnerable people’:
Persons who are eighteen or over who are blind, the deaf or dumb, or
who suffer from mental disorder of any description, and other persons
aged eighteen or over who are substantially and permanently handi-
capped by illness, injury, or congenital deformity or such other disabili-
ties as may be prescribed. (National Assistance Act 1948 in Brayne and
Martin 1997, p.280)
This wording shows how many of the terms used in the past century are still
apparent in practice now. Other legislative material used within the learning
disabilities framework such as the Chronically Sick and Disabled Persons
Act 1970 rely on the same definition of Section 29 clients to identify
whether eligibility criteria are met. The Department of Health (1993)
endeavours to provide some definition of what is meant by ‘deaf, dumb and
handicapped’. If you have a particular interest in this area, it would be worth
obtaining a copy of the circular.
The above legislation illustrates the development of derogatory and ste-
reotypical terms over time and how these terms are still being used. The
power of using and imposing such labels as ‘dumb’ or ‘handicapped’ should
not be underestimated. Awareness of the power issues involved will support
the ongoing challenge to the oppression and discrimination faced by people
with learning disabilities.
MODELS OF DISABILITY
The definition of disability has mainly come from two perspectives, medical
and social. It is useful to understand the difference and the theories
underpinning each. This will place them in context and enhance under-
standing of many issues raised throughout this book when we look at
medical and social need. Each definition uses the term ‘disability’; this can
relate to physical disability or learning disability. We will look at the
definitions and focus specifically on a learning disabilities perspective.
The medical model of disability

The model most often used to define disability during the 20th century was
predominantly developed through the paradigm of Western medicine.
Medical understanding has also been reinforced by religious beliefs and the
broader scientific underpinning that medicine has evolved from. These have
played a part in the development of what ‘has become known as the medical
or “personal tragedy” model’ of disability (Drake 1999, p.10).
This model relies on ‘the understanding of a person’s problem, behav-
iour or condition in terms of illness, diagnosis and treatment’ (Thomas and
Pierson 1996, p.220). The definition essentially refers to the location of dis-
ability in the person, not necessarily in strictly medical terms, but as a charac-
teristic of the person. The medical model ‘has been criticised as leading to
fragmented help being offered according to specialisations which treat cli-
ents as problems rather than as whole beings’ (Payne 1997, pp.21–22).
Through treatment by the medical profession or related professions that im-
plicitly accept the medical model, aspects of the whole person may be
neglected.
In the 1970s the World Health Organisation (WHO) developed a way of
differentiating between ‘impairment’, ‘disability’ and ‘handicap’:
• impairment: the loss of physiological or anatomical function. The
functions of the body or its structure
• disability: the impact of the impairment on everyday life
• handicap: the social disadvantage that the disability caused.
This mainly focuses on how the body works and neglects to consider the
non-medical causes of disability. Additionally it appears to suggest that if a
person does not fit into the same category as the majority then the person has
an ‘abnormality’ (Oliver 1990). The diagnosed impairment is often per-
ceived as the cause of the disability. Oliver reinforces the concern that this
approach places the disability as the property of the individual and can only
be resolved through medical or therapeutic intervention (Oliver 1990,
1996).
This begins to highlight the power held by the people who diagnose or
categorize using criteria that have been developed against what is seen and
accepted as normal within society. People who have had their presenting
characteristics medically defined as a disability have to live and survive in a
society that has been built on the social norms of the majority. If the environ-
ment and society were better able to adapt to different needs then people
with disabilities would be less disabled by society.
The social model of disability can be used to explore this further.
The social model of disability

In the 1970s the Union of Physically Impaired Against Segregation,
otherwise known as UPIAS, was formed. In particular, this group challenged
the medical model of disability and its definitions of impairment, disability
and handicap. UPIAS suggested the following:
• impairment: ‘lacking part or all of a limb, or having a defective
limb, organism or mechanism of the body’
• disability: ‘the disadvantage or restriction of activity’ caused by the
contemporary social organizations that take very little account of
how physical impairments may exclude someone from accessing
the majority of society
• handicap: was ignored by the Union and not seen as worthy to be
included.
(Union of Physically Impaired Against Segregation 1976 pp.3–4)
The Union’s focus on disability looked at the impact that society had on
restricting people that were not like the majority. It challenged the norms
and values that society held, looking at aspects such as the accessibility of
buildings and public transport. If society did not meet the needs of all the
people in it irrespective of their physical ability and their mental intellect,
then it was society that was causing the disablement, not the medical
condition used to explain the function of the person’s mind or body.
The contrast between the medical and social model of disability

To aid consideration of the contrast between medical and social models we
will provide some initial thoughts about each. We are suggesting these as
general ideas and not necessarily specific in every given situation.
The benefits of the medical model may include:
• making a medical diagnosis
• ongoing research into disability
• increasing the understanding of specific diagnosis
• promoting higher expectations of individuals with a disability after
a diagnosis has been made
• providing a diagnosis that may be used to support funding of care.
The medical model may limit its consideration of the whole person with a
disability, either directly or indirectly, for a number of reasons, based on such
factors as:
• the focus remaining on diagnosis through academic medical
insight
• treating people as medical cases that need to be cured
• focusing mainly on continuing to strive to eliminate impairment
and disability
• the thought that physical or mental impairment is the cause of
disability
• labelling, stereotyping and subsequent stigmatization
• lack of inclusion of the person, ‘drawing on a “medical model”:
acting as an “expert” who decides what to do without reference to
the people concerned’ (Thompson 2000, p.134).
A social model of care and support has many positive attributes that
empower people with learning disabilities; these include:
• focusing on the person and not the disability
• challenging social exclusion within the wider society
• focusing on the environmental and social barriers excluding people
with a disability from mainstream society
• understanding the need for informed medical diagnosis and health
care support
• acknowledgement that even with barriers removed, issues
associated with impairment and chronic illness will continue to
need addressing
• presenting a continual challenge to institutionalized oppression
and discrimination.
The social model can also be challenged since reliance on this model alone
might:
• not be fully realistic and may be seen as an idealistic approach
• restrict the opportunity for diagnosis and miss the opportunity to
help inform and understand an individual’s medical situation
• restrict funding due to lack of medical diagnosis.
The above suggestions about the two models are in no way intended as a
definitive guide. Some omissions may be identified by the reader that
promote discussion or criticism. The aim, however, has been to show the
impact, whether positive or negative, that both models can have on people
with learning disabilities. A medical model of disability should not be
confused with health care provision or practice. Enhancing a person’s ability
through health care intervention should promote and enable well being and
is an important part of enabling a person within society. Health care and
social provision are complementary in making appropriate provision for
people with learning disabilities. We will highlight this by considering the
support a person may require in practice. A health care and social skills
assessment may be required to identify the care and support needed. A
health care assessment would look at health needs, take diagnosis into
account and include appropriate medication and therapeutic treatment. A
social model assessment might look at the broader aspects of care, the social
environment, what the person’s choices are, where the person might live, the
level of care and support required and social opportunities. Joint working,
health care and social care assessments may be required to ensure full
assessment, funding and support is given to meet individual needs.
People who provide medical care may provide some level of social sup-
port or care and people who provide social care may work towards meeting
health needs. The medical model and social model of care are two different
approaches that go towards explaining the impact of disability within soci-
ety. Through having an understanding of each and how, to an extent, they
overlap, a more informed approach to practice can be taken.
THE CLASSIFICATION OF A LEARNING DISABILITY

The classification of a learning disability (mental retardation) includes a
combination of factors, and these factors include both medical and social
aspects:
Mental retardation is a condition of arrested or incomplete develop-
ment of the mind characterized by the impairment of skills and overall
intelligence in areas such as cognition, language, and motor and social
abilities. Also referred to as intellectual disability or handicap, mental
retardation can occur with or without any other physical or mental dis-
orders. Although reduced level of intellectual functioning is the main
characteristic feature of the disorder, the diagnosis is made only if it is
associated with a diminished ability to adapt to the daily demands of
the normal social environment. (WHO 2000)
If someone is assessed as fitting the above description, that person would

usually be diagnosed with a learning disability (mental retardation). The
American Association on Mental Retardation (AAMR) offers the following
definition which makes the criteria clearer:
Mental retardation refers to substantial limitations in present function-
ing. It is characterized by significant subaverage intellectual function-
ing, existing concurrently with related limitations in two or more of the
following applicable adaptive skill areas: communication, self care,
home living, social skills, community use, self direction, health and
safety, functional academics, leisure and work. Mental retardation man-
ifests itself before age 18. (AAMR 1992)
Significantly sub-average intellectual functioning relates to an intelligence
quotient (IQ ) test score of 70–75 or below on a standardized individual
intelligence test. The term ‘related limitations’ refers to a person’s limitation
of adaptive skills. The 1992 AAMR definition moved on from the concept of
identifying a person’s level of mental ability by only using an IQ test. It also
considers patterns of limitations by looking at how a person functions in a
variety of situations in everyday life. The AAMR definition does not limit
itself purely to intellectual and adaptive skills assessment. A multidimen-
sional approach is used to aid consideration of a person’s ability to include
four different dimensions: present growth, environmental changes, edu-
cational activities and therapeutic interventions.
The AAMR’s concept of intervention and support refers to resources and
strategies that can be provided to a person with mental retardation to enable
them to enhance their independence, productivity, community presence and
personal satisfaction. Support may be provided through technology,
individuals, agencies or services. Eight types of support function are
described:
1. befriending
2. financial planning
3. employee assistance
4. behavioural support
5. in home living assistance
6. community access and use
7. health assistance
8. teaching.
One of four different levels of support would be identified using the AAMR
concept:
1. intermittent or as needed support
2. limited support, needed regularly but for a short period of time
3. extensive support
4. pervasive support.
The AAMR draws together the above concepts and provides a three step
procedure for classifying and identifying the required support:
1. to determine the eligibility for support (IQ 70–75 or below, onset
prior to the age of 18 and significant disabilities in two or more of
the adaptive skill areas)
2. to identify the strengths and weaknesses and the need for support
across the four dimensions (present growth, environmental changes,
educational activities and therapeutic interventions)
3. to identify the kind of support and the intensity required for each of
the four dimensions.
(Adapted from Hawkins-Shepard 1994, p.2)
This concept highlights the diversity of information that is required and

used to help identify a learning disability (mental retardation).
Human functioning, disability and health are drawn together by the
WHO to provide a structured explanation and framework. Their Interna-
tional Classification of Functioning and Disability deals with:
functional states (i.e. mobility, social integration, etc.) associated with
health conditions. It recognises the fact that a diagnosis of diseases and
disorders, while important for public health needs, is not sufficient to
describe the functional status of the individual and also to predict,
guide and plan the various needs of such an individual. (WHO 2000)
The overall aim of the international classification ICIDH-2 is to provide a
structured and coherent frame and language to describe ‘human functioning
and disability as an important part of health’ (WHO 2000). Functional states
that are associated with health conditions are considered at different levels:
• at body level: functions of the body systems and the body
structure
• at an individual level: simple to complex activities performed by a
person
• at a society level: simple to complex areas of the person’s life, the

society the person is involved with or has access to and societal
opportunities.
A person’s immediate and general environment is also considered.
ICIDH-2 is a multi-purpose classification designed to serve various dis-
ciplines and different sectors. It aims:
• to provide a scientific basis for understanding and studying the
functional states associated with health conditions
• to establish a common language for describing functional states
associated with health conditions in order to improve
communications between health care workers, other sectors, and
disabled people/people with disabilities
• to permit comparison of data across countries, health care
disciplines, services and time
• to provide a systematic coding scheme for health information
systems.
(WHO 2000, p.2)
There are many people with learning disabilities who were diagnosed prior
to the changing of definitions and methods of assessment discussed above.
Many people may have been assessed predominantly through IQ testing.
Some case files and records may show an intelligence quotient (IQ ), mental
age (MA) and chronological age (CA). It is important to recognize that
mental age does not describe the level of ability and the nature of the
person’s life experience or capability to function within society or comm-
unity living. Mental age is derived from chronological age and intelligence
quotient, and thus a fixed mental age cannot be given, as this will vary with
chronological age. To enable a better understanding of the levels we will
briefly describe the five categories that were often used: borderline, mild,
moderate, severe, and profound. We will highlight the difference between
each classification identified through IQ testing as these are often referred
to:
• Borderline is measured within the IQ range of 70–80. This would
be characterized by the person having had some learning
difficulties at school. In adult life the person should be able to
have good social relationships, be a part of, and contribute to,
society as a whole.
• Mild is measured within the IQ range of 50–69. This would

predominantly be characterized as above.
• Moderate is measured within the IQ range of 35–49. This would
be seen as someone who had very identifiable developmental
delays in their childhood. The person should have been able to
learn and develop some skills of independence in areas such as
self-care, communication and learning skills. An adult would need
varying levels of appropriate support to be able to function in the
community.
• Severe is measured within the IQ range of 20–34. The need for
continuous support is very likely.
• Profound is measured by an IQ of under 20. This level of IQ would
show that there are severe limitations in self-care, communication
and mobility. The need for long-term continuous care would most
likely be essential.
(Adapted from Grossman 1983; Holt, Kon and Bouras 1995)
The AAMR and the WHO definitions and approaches used to identify a
learning disability draw together the medical model IQ testing and social
model adaptive functioning. The complex nature and the changing face of
classification remains a prevalent issue and one that will continue to impact
on people with learning disabilities.
HOW MANY PEOPLE HAVE A LEARNING DISABILITY?

As classification is often both difficult and complex it is hard to gain an
accurate figure of how many people there are with learning disabilities. In
the 1980s The Arc (1982) identified that approximately 2.5 to 3 per cent of
the general population have a level of learning disability. This was reinforced
in The Arc’s report and the World Health Report in 2001, where as many as
three out of every 100 people are thought to have some level of learning
disability (The Arc 2001; The World Health Report 2001). It would be
possible to go to each county and check how many people are known to
social services and to health services. This, however, would not give an
accurate picture as many people may not receive services.
We will briefly provide some published figures for the UK. The DoH re-
searched and estimated that in 1992 there were between 120,000 and
160,000 adults in England that had a severe or profound learning disability
(DoH 1992). Many people who have a mild or moderate learning disability
may function without the services providing support. In 2001 approxi-

mately 210,000 people in England have a severe learning disability and 1.2
million have a mild or moderate learning disability (DoH 2001a).
In Scotland there is limited detailed information about the number of
people with learning disabilities. However, it is estimated that three to four
people for every thousand have a profound or multiple disability and twenty
people out of every thousand have a mild or moderate learning disability.
This equates to approximately fifteen to twenty thousand people in Scotland
with a learning disability (Scottish Executive 1999).
In Wales the Learning Disabilities Advisory Group suggests that there
are approximately four to five people per thousand with a severe learning
disability. This equates to approximately 10,800 people with a severe learn-
ing disability living in Wales. People with mild learning disabilities have
been estimated at twenty five to thirty people per thousand population
(Learning Disability Advisory Group 2000).
In Northern Ireland we were unable to locate a comparative document to
those above. In discussion with the consultation team for Improving Civil
Rights for Disabled People (Northern Ireland Executive 2001) we were told
that no similar document was yet produced; however, it was suggested that
the figures would in all likelihood be comparable to those of the UK
mainland.
Mencap state that there are ‘nearly…one point five million people with a
learning disability living in the UK’ (Mencap 2002, p.1). The Foundation for
People with Learning Disabilities (2001) suggests that between 580,000
and 1,750,000 (1–3% of the population in the UK) have a mild learning dis-
ability and between 230,000 and 350,000 (0.4–0.6%) have a severe learn-
ing disability. These figures lend insight into the overall numbers of people
that have some level of learning disabilities living within the UK. With the
improvement in medical knowledge and people living longer the number of
people with learning disabilities will continue to increase.
WHAT ARE THE MAIN CAUSES OF A LEARNING DISABILITY?

The causes of learning disabilities can be divided into two areas, ‘genetic’
and ‘environmental’, although these may at times overlap (AAMR 1992;
Russell 1985). A learning disability can be caused by any condition that
impairs the development of the brain either before birth, during birth or
within the childhood years. It has been suggested that several hundred
different causes have been discovered. However, even with so many causes
identified the reason remains unknown for approximately one-third of the

people that have a learning disability (The Arc 2001).
The causes of a learning disability may relate to:
• genetic disorders, e.g. phenylketonuria
• chromosomal deviations, e.g. Down’s syndrome, Fragile-X
syndrome
• cranial malfunctions, e.g. hydrocephalus
• congenital factors, e.g. maternal disease, substance exposure,
prematurity, perinatal concerns
• psychosocial and environmental factors.
These causes can be explored in greater depth in medical journals, research
documents and through the work of The Arc, BILD, Mencap and various
support groups and societies.
LEARNING DISABILITIES AND MENTAL ILLNESS

It is important to reinforce the difference between a learning disability and
mental illness as these are often confused even in today’s society. We have
explored the terminology of a learning disability in depth. In contrast a
mental illness can be explained as abnormal feelings, thoughts and
behaviour which can lead to an inability to function in everyday life. These
are conditions that with medical intervention and medication may be
improved and alleviated. Recognizing the difference between mental illness
and a learning disability avoids misconceptions.
At the beginning of the 1900s people with either of these diagnoses
were frequently confined in the same institutions. As time has moved on, dif-
ferent services have developed including institutional care and today’s sepa-
rate service provision. Many social service departments have separate mental
health and learning disabilities teams enabling a better understanding of the
different needs. Even though a learning disability and mental illness are dif-
ferent it should not be overlooked that a person could have both.
As discussed there are many different syndromes and diagnoses that are
found within the learning disabilities field. It can be useful to have an under-
standing of specific conditions in order to improve the support and care role.
Additional information relating to specific diagnoses and medical and social
implications can be found in many medical and social work journals, texts
and reference books.
LABELLING
In this chapter we have explored how diagnosis and classification when
identifying a learning disability takes place. Such classification often creates
a label as a means of identification. The label may be ‘learning disability’ or
of a particular syndrome; whatever the label is, it can impact upon a person
throughout his or her life. We will now consider this in more depth.
Being labelled
Labels can be placed on individuals as well as groups and the impact and
implications of being labelled may be far reaching and should not be
underestimated. Labels can be seen as both positive and negative. They have
the potential to create negative influence, to stigmatize and affect the person
who is labelled. Some of the causes of oppression and discrimination
associated with the labelling process will be highlighted.
Consideration will be given to the need for labelling in order for a per-
son to receive a service. An assessment needs to take place and a diagnosis
made of, for example, learning disabilities or mental health for the purposes
of service allocation. A person not only has to be labelled to receive many
support services but also has to face the impact of being so labelled. These is-
sues will be explored by investigating labelling theory.
Labelling and its background

Initially we will explore what is meant by a label and consider the power of
labelling. One definition of a label is: ‘[Something] attached to an object
giving information on it…to classify…to describe’ (Hawker and Hawkins
1996). The label placed on someone may be there to provide information to
others about that person, to categorize them, to identify who they are or
what they do. Each person can carry a multitude of labels. These may include
labels that identify ethnic or cultural background, family position such as
husband, wife, partner, parent, brother, sister and child. They may also relate
to class, work, employment or student status. Specific job titles such as
‘nurse’, ‘social worker’, ‘care worker’ may have the same effect. Each label
informs others of who and what we are and a level of expectation will usually
be attached to the various labels.
Many of the labels just mentioned will largely be seen as positive. In
reality labels are not always positive; this may be due to personal interpreta-
tion or society’s perception affected by stigma and stereotyping. Labels such
as ‘unemployed’ or ‘single parent’ may have some level of stigma attached by
some people and not others. The impact of labels such as ‘sex offender’ may
have lifelong implications. This is not intended as a guide to the hierarchy of

labels or those that are positive and negative; it is intended to provoke
thought about the diversity and power of labels. Each of us may perceive la-
bels in different ways. This will be affected by our understanding of the label
and, to an extent, if we know the person or not. Labelling is not an exact
science but open to interpretation and misinterpretation.
Within the health and care fields labels are often placed on a person to
categorize a condition and to help identify whether services should be
provided. The label of learning disabled is not placed on a person to be
deliberately negative. However, being identified as having a learning disabil-
ity, and being called something that reinforces and informs others of this,
does not appear to be particularly supportive or empowering.
Thomas and Pierson offer a different perspective with their explanation
of labelling and labelling theory. ‘The process whereby people holding posi-
tions of power or influence sometimes attribute generalized negative charac-
teristics to particular categories of individuals, tending to produce or amplify
those behavioural characteristics attributed’ (Thomas and Pierson 1996,
p.200). This definition places a strong emphasis on the power that a person
holds when placing a label on someone else. By considering the origins of
labelling from its sociological perspective a clearer understanding of its part
in today’s care work can be gained.
Becker (1963) and Lemert (1972) were key people in the development
of labelling theory. Becker (1963) explored the links between the sociologi-
cal perspective of ‘symbolic interactionalism’ and labelling. Symbolic inter-
actionalism (Blumer 1969; Mead 1934) considered the way in which
understanding and explanations materialize through the study of interac-
tions of people. They explored the meanings given to bodies, feelings, situa-
tions and the wider social worlds in which we exist. Much of the work
focused on a person’s deviance from society’s ‘normal’ expectations. If a per-
son deviated from the normal, then society often treated the person in a neg-
ative or oppressive way. The idea that deviance was caused by society’s
oppressive responses to people’s labels gained acceptance in the 1960s and
1970s (Rosenham 1973).
Goffman (1961) looked at labelling in terms of how and why people
were defined by others, and explored the effect of the labelling process on
people’s subsequent behaviour. Goffman suggested that labelling essentially
creates deviance or abnormality because the individual adjusts their behav-
iour to that of the label. Becker (1964) and Lemert (1967) considered devi-
ancy theory in the broader context of any person or group that deviated
from the ‘normal’. Society’s responses to people with a learning disability
may not be against specific deviant behaviour but in response to deviance

from the accepted societal norm.
The link between sociological understanding and the impact of label-
ling can be used to explain some aspects of human and social behaviour.
Becker (1963, 1964) raised the following points:
• Human behaviour is influenced to a high degree by the social
expectations that others have on individuals and groups.
• Though labels can operate as a negative process they do not
always successfully explain deviant behaviour.
• Labels used in a widespread way increase the likelihood of
stereotypical conceptions of particular categories or groups of
people which can lead to exclusion through ignorance, mistrust or
misinformed understanding.
• Institutional labellers such as state agencies and those in control of
health and social welfare possess power to place labels on people
that can have a radical influence on their lives.
Becker suggested that people in a position to label others must always
consider the impact of that labelling. This included the power held by the
person placing the label, the impact of the label on the person and how this
might affect his or her acceptance within society.
The stereotyping and stigma faced by people with certain labels that are
still prevalent today are reinforced by media coverage, bad press and, at
times, ignorance. The term ‘mentally handicapped’ is still heard on the tele-
vision and read within news reports. The difference between learning dis-
ability and mental illness is often confused, increasing the level of stigma and
stereotyping both groups may face. The labels ‘learning disabilities’ or
‘learning difficulties’, although perhaps today’s politically correct descrip-
tions, may be derogatory. Rowitz described this terminology as ‘a nice catch-
all phrase to explain anything relative to mental retardation’ (Rowitz 1974,
p.265). The terminology of handicapped, mentally impaired or retarded can
conjure up pictures that restrict or show ignorance of the true abilities of the
person labelled. This reinforces the idea that it is often ignorance or misun-
derstanding of given labels, or the wider restriction of society in response to
them, that may oppress or cause discrimination.
The placing of labels

We have touched upon why labels are placed upon people and will go on to
explore some of the issues further. Many of the labels that describe people
who have a learning disability have derived from medical definitions.

Historically the label of ‘mental impairment’ was used and this can be found
in policies and legislation that are in use today. For example, it can be found
in legislation such as the National Assistance Act 1948 and the Chronically
Sick and Disabled Persons Act 1970 (Brayne and Martin 1997) (see Chapter
10 for more information about legislation). Oliver (1990) suggests that the
mere fact that a medical definition is used to describe disability only achieves
marginalization and dehumanization of the person.
The impact of being classed as disabled is another label that can affect
people with a learning disability. Disablism considers the impact of func-
tional disability by focusing on the combination of ‘Social forces, cultural
values and personal prejudices that marginalizes disabled people, portrays
them in a negative light and thus oppresses them’ (Thompson 1997, p.107).
People with a learning disability can face both disablism and discrimination
due to the label they are given. They can be further disabled and discrimi-
nated against by the confusion of mental impairment and mental illness. Per-
ceptions around and acceptance of these labels can increase pressure upon
the person. Multiple oppression may occur through additional labelling as-
sociated with gender, age, culture or race. An understanding of labelling the-
ory can help unpick the implications of the names, descriptions and titles
given to people.
We mentioned earlier that the initial work of social interactionalism and
labelling focused on deviance from the normal. Wolfensberger (1972) un-
dertook work that focused on ‘normalization’ (see Chapter 4). Labels such as
‘learning disabled’ are given to people because their functioning ability and
IQ are lower than ‘normal’. A person is diagnosed as physically disabled if
unable to achieve what ‘normal’ able bodied people can achieve. Any criteria
that relies on a label being placed, which is measured from a ‘normal’ stand-
point, is fraught with danger. This concept looks at adjusting the person in
relation to the majority. It may continue to promote the exclusion of people
who are not measured as ‘normal’.
Who has the right to decide the definition of ‘normal’and how it is mea-
sured? Care and support providers are often involved in the process that de-
cides what label to give someone. This may be defined by medical or social
criteria. Whether or not a service is provided may hinge upon the label given
to that person which best describes their medical condition or need and how
that person fits into specific eligibility criteria. However, labels can also be
helpful in accessing services, claiming benefits, diagnosing illness and ac-
cessing correct treatment. It is also worthy of consideration that many of the
tests and criteria used to diagnose and label are measured from specifications
that are white, middle-class and western European (Baxter et al. 1990). This
may further oppress and discriminate through racial and cultural bias and
should be taken into consideration when providing support. Whatever label
is placed, the person should remain central.
The label placed on a person can have a major impact on how the indi-
vidual copes or is accepted within society. However, without various labels it
would be difficult to access many of the services restricted by rigid eligibility
criteria. By considering and understanding the impact and power of label-
ling the risk of stigmatizing or marginalizing can be reduced.
We have explored some of the complex aspects of the medical and social
models of disability. The relevance of each model and their intertwining
when providing care is an intrinsic part of working in the learning disa-
bilities field. The impact of classification and labelling has also been
explored. The following case studies will highlight aspects of these per-
spectives in a practice context.
CASE STUDY ONE

Ivan referred himself and his son Serge to social services as he was finding it
increasingly difficult to cope with Serge. Serge required a variety of support
to enable him to function and participate both at home and in the
community. Ivan also knew he himself would soon have to go into hospital
for an operation and wished to pre-empt a crisis when this occurred as he
clearly could not leave Serge on his own at home.
An initial assessment was undertaken by a social worker. The family were
unknown to social services and the social worker was unsure whether Serge
had a learning disability or not. The social worker contacted the GP who
had no definite diagnosis for Serge. In consultation with Ivan and the social
worker the GP referred Serge for a fuller medical assessment and diagnosis.
Application in practice
Ivan was struggling to cope with his adult son. Ivan’s two other sons had
recently left home and without their support and presence Ivan felt in-
creasingly isolated and overwhelmed. The family were not known to social
services; until this time they had always supported Serge within the family
group. The family had come to live in Britain when Serge was already an
adult so there were no childhood records of him. The problem for the social
worker lay in the fact that without a diagnosis she could not allocate Serge’s
case to a specific team and thus it would be difficult to access resources for
Serge and Ivan.
In this instance even the resources of social services relied upon the
Western medical approach, the medical model, of needing a diagnosis to en-
sure eligibility before structured support could be put in place. It would have
been theoretically possible for the social worker to make an assessment of
need without the formal diagnosis by talking to Serge and Ivan and others
involved. This however may not fit within the protocol and procedures and
subsequently not be acceptable in the face of restricted resources and budget
allocation. The diagnosis gave credence and enabled allocation to a specific
team and the subsequent arrangement of a care package.
CASE STUDY TWO

Evalyn had lived in the family home with her parents and later with her
niece Lillian. Evalyn was 58 years of age and had become increasingly
forgetful. In the recent months she seemed confused at times, forgetting the
names of some of those familiar to her and the names of some common
objects. Evalyn had also become aggressive on a few occasions, which was
most unlike her usual even temperament. She also started to wander in the
night, on two occasions had left the house in her nightdress, and had been
found by passers-by.
Lillian began to find it increasingly difficult to cope with Evalyn and her
friend suggested she contact social services for help. Lillian explained the sit-
uation to the duty social worker, who arranged for an initial assessment visit
to be made by someone from the learning disabilities team. It was also ar-
ranged that Lillian have a carer’s assessment in order to look at her needs.
At the assessment they all agreed a suitable care package to support
Evalyn at home. At this point the social worker suggested that Evalyn should
see her GP again in order to get a formal medical assessment and firm diag-
nosis in relation to her medical support needs. Evalyn was referred to a spe-
cialist for further investigation and diagnosis. When this was complete it was
confirmed that Evalyn had Alzheimer’s disease.
To receive a social needs assessment Evalyn first had to have some form of
label, in this instance learning disabilities. She could then be assessed by the
community learning disability team. As main support provider Lillian had
the label of carer placed upon her, thus enabling a carer’s assessment to be
undertaken.
Due to the increased risks Evalyn was presenting through medical

causes, it was necessary for her to have a specialist medical assessment and to
be diagnosed and labelled as having Alzheimer’s disease. This enabled her to
access additional funding and thus additional support. It also meant that the
community psychiatric nurse became involved and could further support
both Evalyn and Lillian.
In this case Evalyn was 58 years old before she became known to social
services and formally labelled as having learning disabilities. This was done
with the positive intention of assessment to provide a support package. Ulti-
mately, Evalyn having the additional label of Alzheimer’s disease helped
Lillian to understand some of her behaviour and support needs. It also en-
abled Lillian to gain the support of the community psychiatric nurse and to
be put in touch with a carers’ support group, all of which proved positive for
Lillian and her care of Evalyn.
CONCLUSION
We have identified what a learning disability is and shown that its classi-
fication is by no means a straightforward process. Consideration of aspects
of diagnosis and classification enables a more structured understanding of
the developing approaches for working with people with learning dis-
abilities. Whilst classification and labelling may enhance understanding and
enable care provision, the impact of such classification and labelling can be
powerful, discriminatory and oppressive. By listening to people with a
learning disability we can work towards a greater holistic understanding of
the impact of being labelled learning disabled.
It is important to remember that whatever title, label, diagnosis or syn-
drome has been given to a person that they are firstly that – a person. It is not
about concentrating solely on meeting the needs identified through specific
diagnosis or classification, it is about spending time to get to know and un-
derstand the person holistically.
Key points
• Learning disability and learning difficulty are two descriptions
used to mean the same thing. There is an ongoing long-term
debate about which, if either, should be used.
• There are many other terms and descriptions used to describe
people with a learning disability; these are especially found in
legislation. Many of these terms are outdated and unacceptable
in today’s society.
• There are various degrees of learning disability; these are
identified through IQ testing and functioning assessments.
• A medical model perspective locates the disability in the person
– not necessarily in strict medical terms, but as a characteristic of
the person.
• A social model perspective focuses on the person’s social needs
and focuses on how individuals can be supported within society.
• The process of care between the two models is different and an
awareness of the impact of each is important.
• Labelling theory has its origins in sociological perspectives.
• Labels can be both positive and negative.
• Everyone has some type of label placed on them; for example,
mother, son, colleague, friend, nurse or care worker. Many of
these labels may be perceived as positive.
• Labels can lead to the stigmatization and stereotyping of people;
for example, labels such as ‘learning disabled’ and ‘mentally ill’.
• Legislation plays a part in reinforcing definitions and labelling
people. Some pieces of legislation used today in the learning
disabilities field are over 50 years old and contain archaic
terminology.
• At times labels are required to enable a person to be categorized
to gain financial support.
• The impact and power of labels should not be underestimated.
2
Application of Theory
INTRODUCTION
In this chapter we will explore the importance of developing an under-
standing of what theories are, the diversity of where theories may originate
and how they can be used. We will introduce three of the main theoretical
perspectives, social science, psychology and political science, that provide a
structural framework for many of the theories that are used to inform day to
day social and health care practice. Throughout this book we seek to
demonstrate how theories can link directly to practice and the benefits of
using them in a variety of applications. The importance of knowledge and
theory being integral to practice is reinforced when considering the Central
Council for Education and Training in Social Work criteria. ‘It is essen-
tial…that students…demonstrate that they not only know about a range of
social work methods and theoretical approaches, but that they can select and
make skilled use of them in their practice’ (CCETSW 1996, p.17).
We will explore how support and practice can become informed support
and practice through the use of a theoretically based approach. Following
chapters will go on to explore specific theories and their use in day to day
practice. Two case studies will be provided, one to illustrate how theories can
be used to inform practice, the other to illustrate the importance of develop-
ing informed practice using reflective learning underpinned by theory.
WHAT IS MEANT BY THEORY?

One definition of theory is: ‘a set of ideas formulated to explain something;
opinion, supposition; statement of the principles of a subject’ (Hawker and
Hawkins 1996, p.333). In the dictionary of social work, theory is described
as ‘a set of propositions or hypotheses that seek to explain phenomena’
(Thomas and Pierson 1996, p.380). Both definitions place an emphasis on
33
theory being developed from ideas, drawn together to formulate an ex-

planation. If a theory is to have credibility and be accepted then two things
appear common to its success: the credentials of the person or people
suggesting the ideas and some form of proof either through testing or
research that validates the concept. The likelihood of having the know-
ledge, skills and financial ability to fund the research required to develop a
theory may belong to only a few – those with knowledge, resources and
time. This raises an issue that theory may in reality only be suggested and
created by a limited amount of people. If this is the case then those able to
develop a theory may hold a position of power over those to whom the
theory will be applied.
An understanding of the origin of a theory can provide insight into the
perspective from which it comes. For example, theories based on medical or
social need, developed for political reasons or for advancement of a specific
area of study. Whether theories take into account diversity, ethnicity, race or
culture may also impact upon their validity. These factors all have relevance
to the development and reasons for theories being created.
Many of the theories that have a relation to social, medical and health
care come from a social science perspective. We will briefly consider some of
the different areas of social science that have provided theoretical perspec-
tives which can be used in the learning disabilities field.
SOCIAL SCIENCE
There are various disciplines associated with the term ‘social science’. We
will highlight three that have particular relevance: sociology, psychology
and what is sometimes referred to as political science. Sociology and an area
of political science, social policy, are explored in more depth in Chapter 10.
Sociology
It is not an easy task to find one explanation that clearly and fully describes
the diversity of sociology and sociological studies. An explanation formed
through reading and interpreting many authors’ perspectives is that socio-
logy is a study of the social structures that surround us, what they are, what
they do and how they have evolved. The study of sociology focuses on
people’s different life experiences within these social structures. Expla-
nations of structural influence through social class, gender and race can all be
made with an understanding gained from sociological studies.
Sociology enables and informs an understanding of the social institu-
tions and relationships that affect individuals and groups. Sociology has
APPLICATION OF THEORY 35
highlighted patterns of inequality that have affected and impacted on those

within society. It presents different perspectives of social forces and provides
insight into issues of social stability and social change. Sociology can also
provide explanations on the nature of deviance.
Sociological studies can inform us on a variety of issues:
• culture and society
• culture and behaviour
• socialization
• norms and values
• status and role
• theories of society
• views of human behaviour.
(Haralambos and Holburn 1991, pp.2–18)
This reinforces an argument that the area of study of sociology is immense

and deserves further consideration. Other texts provide information in the
context of social work (Dominelli 1997b), and care provision for people
with learning disabilities (Iphofen and Poland 1998).
Psychology
Psychology can be described as the scientific study of behaviour and of the
mind. This includes the mental processes that are undertaken by each of us,
including memory, thinking, perception, understanding, social relationships
and social interaction. Specific psychology for social care and social work
will not be explored in depth here; other texts undertake that task (for
example, Messer and Jones 1999; Robinson 1995).
Psychology is able to offer conceptual and theoretical insight that can
have an impact on social care and support work. Many different theories or
therapeutic strategies are used in the care and support of people with learn-
ing disabilities. Often there is not an awareness of the links these approaches
and methods have to psychology and psychological research. Some of these
theoretical approaches and methods of working are:
• systems theory
• crisis intervention
• loss and bereavement
• group work
• counselling
• psychotherapy
• behaviour modification
• social interaction work.
(Adapted from Herbert 1981)
In many working situations more than one theory can be used to inform and
enhance practice. For example, following a crisis situation; insight may be
gained from the use of systems theory and, subsequently, counselling may be
helpful once the crisis has been worked through. Using theories from
different disciplines can also inform and enhance practice.
Political science
Political science focuses on studying power and the distribution of power
within different types of political systems. Aspects of political power might
include:
• the sources of power
• how power is exercised and used
• how constraint is achieved
• how control is operated
• those that win and those that lose power struggles.
The diversity of those involved in policy making includes various political
institutions, political parties, the state and interest groups. Political systems
may also be influenced by such institutions as the European Union and
worldwide political agendas. All have relevance to how policy creation may
influence and affect people with learning disabilities, either directly or
indirectly.
Political science and policy making can be explored specifically in rela-
tion to disability policies. As discussed in Chapter 1, the medical and social
perspectives of disability affect the way policies are created. Medical per-
spectives often hold power in setting criteria and accessibility to services de-
fined by specific policies created by the state. ‘Human values and aspirations
are realised by an exercise of power channelled through some process, sys-
tem or conduit and that which converts understanding and definitions of
disability into tangible policy is the state’ (Drake 1999, p.18).
In the case of disability policy, a commissioned piece of research or spe-

cific area of inquiry is usually carried out. This may result in a Green Paper,
which is a format for discussion about a policy that the Government would
like to become a piece of legislation. When all the comments received have
been studied, the paper is returned and becomes a White Paper; this is put
forward before Government as a Command Paper. It will contain specific
measures that are intended to become law. The Bill then has to be discussed
in both the House of Commons and the House of Lords. This is undertaken
three times, each having a committee stage and a report stage in each House.
The Bill is read through line by line and any negotiated amendments will be
made. If the Bill passes through both Houses it goes for Royal Assent and
then is passed into law as an Act of Parliament. There are other methods by
which a Bill may be put forward, either by backbenchers of the governing
party or from an opposition MP, if they have been successful through ballot
in introducing the proposal. Bills may relate to health care, social care, bene-
fits entitlement or education, all issues that can have a direct effect upon peo-
ple with learning disabilities.
We wish to highlight the potential and real power that is held by Gov-
ernment and suggest that it may be better understood with a knowledge of
political science. This then underlines the influence that the Government
and those holding power have over the rest of society. The people affected,
in this case people with learning disabilities, have little chance to challenge
policies and their effects, although they may have an opportunity to be part
of a consultation process. Further study on policy relating to disability can be
found, for example, in Drake (1999) and Priestley (1999).
SOCIAL WELFARE AND PRACTICE

Sociology, psychology, political science and many of the theories developed
from these main perspectives can be used to explain and provide insight into
situations that occur in day to day practice. For example, understanding
political science can inform the practitioner as to why certain policies and
structures are used in various aspects of care. Legislation has influence over
how services are provided, resources that are available and financial ex-
penditure. Policy and legislation play a vital part in informing everyday
practice and underpinning social welfare provision.
Midwinter (1994) suggested that social welfare consists of ‘four com-
mon threads by way of solution’:
…some balance of public and private provision is normally to be found;

there are compromises as to whether the services are organised centrally
or at more local levels; there are constant debates as to whether treat-
ments should be delivered personally, at home, for instance, or whether
recipients should be treated in institutions; there are likewise decisions
to be made about making provision in cash or kind. (Midwinter
1994, p.1)
The above threads can be seen as pertinent to the learning disabilities field.
The number of places that are provided by the statutory sector and those
provided by the private and voluntary sector are all dependent upon
funding. The management of fund holding is likely to affect the amount of
money available to meet the medical, health care or social needs of a person.
Fund holding may be managed jointly between health and social services or
independently by one or the other. The rights of someone to receive care at
home may be restricted by resources affecting the availability of home care
support, housing rights and benefits that can be claimed. A reliance on
voluntary or family support to enable a person to continue living in the
community may mean the funding is decreased. This may lead to an
inaccurate guide to the real cost of community support. The complexity of
social welfare provision, the limitations of resources and the benefits
structure can impinge upon the rights of individuals and their care.
The nature of welfare provision in society and how society itself has de-
veloped holds a key to how services are provided, the number of services
available and subsequent limitations. The influence on society of political
ideals and other external factors at any given time impact upon the provision
of social, medical and health care. These are reliant on realistic funding to
meet the needs of the people being supported. Services are often resource
led, the resources available are identified and the person needing a service
will be fitted in accordingly. We suggest it is preferable to work in partner-
ship and jointly assess need, identify the support systems required and then
provide a needs-led care package. As the last one hundred years of care for
people with learning disabilities has shown, a service-led process has been
the norm.
Understanding the origins of theories and why they have been developed
plays an important part in enabling practice to become informed practice.
INFORMED PRACTICE
Thompson (1996) explains the principles of theory and practice in health
and social welfare settings. A core issue suggested by Thompson is that of
informed practice. The benefits of using an informed approach are summed
up as necessary to:
• do justice to the complexity of the situations social and health care
workers so frequently encounter
• avoid assumptions, prejudices and stereotypes that can lead to
discrimination and oppression
• lay the foundations for a developmental approach, one which
permits and facilitates continuous personal and professional
development
• ensure a high level of motivation, challenge and commitment.
(Thompson 1996, pp.1–2)
Informed practice is suggested as being achieved through what Thompson

refers to as ‘thinking and doing’. The idea comprises the notion of learning
from experience. When people undertake practice they should think about
how they have been working and reflect on their practice. This can be
achieved by thinking about:
• What went well?
• What did not go well?
• What are the reasons it did not go well?
• What could have been done differently?
• Why should anything be done differently?
When considering what could have been done differently or better, the use
of one or more theories may highlight how aspects of work could be
improved next time. This provides the opportunity to learn from experience.
A reflective approach enables practice to be explored and adapted to meet
the needs of the person being supported and to provide insight into areas of
oppression and discrimination that need challenging. This should lead to
‘improved levels of practice; increased opportunities for job satisfaction; a
basis from which to justify decisions made and actions taken; continuous
professional development’ (Thompson 1996, p.111).
THEORY IN PRACTICE
Theory can provide guidance and insight to inform and aid reflection and
analysis of practice. Specific theories can provide a structured approach to
working that can promote confidence and understanding for care and
support workers. In some working environments the workers may be left to
work predominantly on their own where practice may not frequently be
observed or examined. This could lead to an environment mainly reliant on a
‘we have always done it this way’ approach rather than a theoretically
informed approach. Goffman (1961) wrote of the ongoing institutionalized
behaviour of support and care workers through a learnt behaviour strategy,
rarely challenging or questioning working practice or ethical issues that
surround care:
Social workers [and care workers of any description], to be truly effec-
tive, need to be constantly asking why. It is in this quest for understand-
ing about, for example, why situations arise, why people react in certain
ways and why particular interventions might be utilised, that theory
informs practice. (Coulshed and Orme 1998, p.9)
Each person and situation should be seen as individual; however,
knowledge, skills and the understanding of theories can be used to inform
and enhance all aspects of practice.
The first case study that follows will illustrate the application of theory
and provide an example of how individual theories discussed later in this
book can be used to help practice become informed practice. The second
case study will reinforce the benefit of reflecting upon and analysing how a
person is supported and of using theory to inform the development of
practice.
CASE STUDY ONE

Four young people had recently moved from residential school into a staffed
house in the community. They were all students on full-time courses at the
local college. A few weeks into term the staff noticed that the four residents
were finding it difficult to get up and get ready for college in the mornings.
The staff attributed this to too many late nights and decided to instigate a
10pm bedtime for the residents during the week. This would then enable
them to get up earlier and get to college on time.
This case study can be considered from a variety of perspectives. The wider
picture of care and support in residential homes within the community can,
in part, be explored through sociological theory. There are many socio-
logical studies that have been undertaken that look at the structure of society
and the expectations of people within it. For example, there are studies on
care provision and how people should be supported, educated and, at times,
controlled.
Psychological theories can inform and lend insight into why people be-
have in certain ways. Every person has some level of learned behaviour or
family scripts informing him or her of the ‘best’ way of doing things.
Looking at the practice in this case study, to the staff it appeared that the
‘best’ way of doing things was for the residents to go to bed earlier. Through
the staff ’s family scripts, they had learnt ‘early to bed, early to rise’ and im-
posed this upon the residents. The staff ’s approach, however, did not allow
the residents to learn from their own experience. If the residents had been
able to continue their late nights and experience the consequences of late-
ness or absence from college they may have been able to adapt their habits
accordingly. However, it should also be considered that the social care remit
to provide a safe and supportive environment might, on occasion, require
protection and control to minimize the risk of harm. Balancing rights and
risks requires working in partnership with the individuals involved.
In this instance the staff had oppressed the residents and discriminated
against them as adults by their imposition of a 10pm bedtime (see Chapter
3). The staff were aware of college expectations concerning attendance but
their practice did not allow the residents to learn this for themselves. If the
‘learned’ approaches had been evaluated and used in conjunction with theo-
ries such as role theory (Chapter 9) or social learning theory (Chapter 8),
then more informed practice may have taken place.
CASE STUDY TWO

Mtembe had been key worker to Jacob for six months. Jacob had limited
verbal communication and used Makaton to communicate. Jacob had
become increasingly frustrated in his general communication in recent
weeks leading, on occasion, to him hitting himself.
Mtembe brought Jacob’s case for discussion at the staff meeting to look
at how the work was approached and reflect upon the methods used and
how they could be improved. On reflection it was clear to Mtembe that he
did not have enough knowledge about communication methods to provide
the required support. Mtembe needed to inform his practice and adapt his
ways of working. Thus he requested to attend a communication course to
improve his ability to work with Jacob. On the course Mtembe learned to
look more widely at aspects of communication including the use of symbols
and computer software. He also learned about environmental and other bar-
riers to communication.
Through Mtembe’s reflection about Jacob and his communication needs he
had identified factors that could be improved. Mtembe was fairly fluent in
Makaton but recognized certain staff were not; it was not a signing
environment. When the staff team discussed their approaches, incon-
sistencies were identified in the systems (Chapter 9) around Jacob and a more
uniform approach was decided upon when working with him.
Through reflection upon his work Mtembe thought that a better under-
standing of communication methods (Chapter 5) and of possible barriers
that restricted communication would improve his knowledge and skills. This
informed practice would enable him to be a more effective key worker to Ja-
cob. Mtembe was thinking about his own and others’ practice, what worked
well and what did not work so well and what could be done differently.
Mtembe thought about what he had learned and used these ideas in
partnership with Jacob and staff to enhance Jacob’s quality of life. Mtembe
was thinking and doing, using theory to enhance practice. From the doing
they could decide what was most helpful to Jacob and what was not so help-
ful and further modify practice. Thus, support and practice became informed
support and practice.
CONCLUSION
The use of theory is summed up by Payne (1997):
…theory is practically useful, and…its variety and confusion can be or-
ganised and understood. The relationships and oppositions between
theories provide a context in which their value can be assessed against
one another, and against the modern social context in which they must
be used. (Payne 1997, p.71)
An understanding of what a theory is and the diversity of theories that can be
used in day to day practice has been suggested. The benefit of the use of
theories is twofold: meeting the needs of the person who is being supported
and as a way of learning. Theories are important in developing personal
understanding and insight into providing effective care that can be assessed
and validated in its delivery. We have looked at theory informing practice
and the use of an underpinning theoretical framework. We will progress
chapter by chapter to provide a more in-depth theoretical framework that
can be used when working with people with learning disabilities.
Key points
• Theories originate from many different perspectives and are
tried and tested methods of explaining and informing given
situations.
• Theory can be used to provide insight and guidance and to aid
reflection upon and analysis of practice.
• Theories can be used to inform practice by providing an
understanding about different ways of working and supporting
people with learning disabilities.
• More than one theory can be used at a time.
• Theories discussed in this book can be used to help inform
practice with other groups such as older people, those with
mental health issues and children and families.
• Social work and health care training bodies reinforce the
importance of theory being used to inform and underpin
practice.
3
Anti-Discriminatory Practice
and Anti-Oppressive Practice
INTRODUCTION
Anti-discriminatory practice and anti-oppressive practice are terms often
heard within care and support work. In this book we are focusing on people
with a learning disability, but we must stress that the principles discussed can
be applied and used to inform practice in other fields of care work.
In this chapter we will start by briefly exploring some of the underpin-
ning ideas that help to highlight issues of discrimination and oppression. We
will go on to explore what is meant by discrimination and oppression. This
will be achieved by considering some of the forms each can take. Exploring
these different forms will develop a focus upon the impact each can have.
The information gained will subsequently provide and reinforce an under-
standing of how a theoretical framework can be used to promote an
anti-discriminatory and anti-oppressive approach.
The idea of anti-discriminatory and anti-oppressive practice is funda-
mental; it should underpin day to day practice and will consequently be used
throughout the book. The importance of this as an intrinsic part of practice
will be emphasized as this chapter unfolds. An anti-discriminatory and
anti-oppressive approach will be placed in a practice context of working
with people with learning disabilities through two case studies.
UNDERPINNING IDEAS
An understanding of issues relating to discrimination and oppression has
predominantly developed from sociologically based studies. Some psycho-
logical work has further informed specific situations. Sociological explan-
ations of the structure of society provide insight and an understanding of the
impact created by difference. For example, insight is gained through studies
45
undertaken on race, deviance, sexuality, gender and class. Within any

structure where there is difference, power bases may be affected. Majority
and minority groups develop and attitudes between different groups may
conflict. Such conflict could then lead to discrimination and oppression.
Payne (1997) discusses the impact of sociological studies on our under-
standing of discrimination and oppression and subsequent anti-discrimin-
atory and anti-oppressive practice. We intend to explore the concepts of
discrimination and oppression and show their impact upon care and support
work with people with a learning disability.
DISCRIMINATION AND OPPRESSION

To introduce this section on discrimination and oppression we will explore
what is meant by the terms. Discrimination is the unfair or prejudicial
differentiation or treatment of individuals or groups of people. Discrimi-
nation is found in all areas of society and faced by many people in a variety of
different ways. Through discrimination, judgements may be made about
individuals or groups of people. These judgements may be made from
non-relevant criteria, criteria which may, however, be predominant within
society.
Oppression describes the unjust treatment of individuals or groups of
people through the exertion of power, both individual and structural. Power
is used to implement unfair judgements, often widely, over specific people or
groups within society.
In this chapter we will explore perspectives of anti-discriminatory and
anti-oppressive practice in a practice context. A definition of each will be
given; this will provide a basis from which to understand how discrimination
and oppression can be identified and subsequently challenged. Anti-
discriminatory practice: ‘A term used widely…to describe how workers take
account of structural disadvantage and seek to reduce individual and institu-
tional discrimination particularly on grounds of race, gender, disability,
social class and sexual orientation’ (Thomas and Pierson 1996, p.16).
Anti-oppressive practice ‘attempts to confront or resist injustice or the abuse
of power. Anti-oppression can refer to either individual or personal experi-
ence and to structural arrangements’ (Thomas and Pierson 1995, p.19).
As the chapter unfolds we hope these definitions will become more
accessible. They will be placed in the context of social and care support
within the learning disabilities field and practical applications will be used to
support understanding. The definition of anti-discriminatory practice given
above raises the issue of the multiplicity of people and groups that may be
ANTI-DISCRIMINATORY PRACTICE… 47
affected through race, age, gender, disability, class and sexual orientation.
This type of discrimination is sometimes referred to in the context of an
‘ism’.
‘Isms’
An ‘ism’ can be used to group descriptions of people who are affected by
discrimination and relates to an ideology of superiority. The supposed
superiority is of one group over another and is imposed on those ‘inferior’
groups. Such imposition is often used as a method of trying to justify
oppression and unfair judgements on others. We will explore some of the
isms and examine how they can be used to provide an understanding of areas
of discrimination.
Racism relates to discrimination against people from different races, eth-
nic groups and countries, and against some collective groups within society.
The discrimination can be manifest in people’s ideas, attitudes and behav-
iours. The discrimination is supposedly justified because the oppressing
group of people believe in a presumed inherent biological superiority over
those that are oppressed. Ageism focuses on discrimination and prejudice
against people due to their age. Bytheway describes ageism, highlighting its
diversity: ‘Ageism is about age and prejudice…it appears in all sorts of situa-
tions and affects people of all ages’ (Bytheway 1995, p.3). Sexism relates to
discrimination on the grounds of a person’s sex or gender. It particularly fo-
cuses on the discrimination and oppression of women by men and the male
dominant attitudes found within parts of society.
Over time other isms have developed. Classism relates to the effect of
discrimination and oppression through class hierarchy. The conflict arises
where one class believe themselves superior and oppress people of another
class. Disablism, sometimes spelt as disableism, relates to the impact of dis-
crimination and oppression on people who are seen as disabled in compari-
son to the majority of society. Thompson describes disablism as ‘the
combination of social forces, cultural values and personal prejudices which
marginalises disabled people, portrays them in a negative light and thus op-
presses them’ (Thompson 1997, p.105).
Other areas of oppression occur that do not necessarily have a specific ism to
their name. We will highlight some of these to underline how wide the issues
of discrimination and oppression are within society. An individual’s sexual
identity may have an impact on how they are, or are not, accepted. If a
person is a male homosexual, lesbian, bisexual or transsexual this may have
an impact on how they are viewed and accepted by society. Different values
or beliefs may affect how a person is treated. Equal opportunities policies are
used by some employees as a way of reinforcing that people should not be
treated differently due to their sexuality. Although acceptance may be
increasing in society, the discrimination and oppression faced by a person
due to his or her sexuality needs to be considered and challenged. A person’s
religious beliefs may affect others. Expectations through religious under-
standing may be deliberately, or inadvertently, placed on others. Religion
and religious beliefs can be fundamental to a person’s life-guiding actions
and moral principles. This in turn can create a level of cultural normality
where different cultures, religious beliefs or non-religious beliefs may not be
accepted or understood.
The language used by a person may not be understood or accepted in the
wider society. An example of this could be a first language that is different
from the majority. Languages often link closely with ethnicity:
[Ethnicity]…relating to or characteristic of a human group having ra-
cial, religious, linguistic and certain other traits in common…relating
to the classification of mankind into groups especially on the basis of
racial characteristics. (Collins Dictionary 1986, p.524)
Within different ethnic groups communication used may differ through
dialects and localized language which can vary from region to region.
Through these differences marginalization of individuals and groups may
take place.
The culture of a person or a group also has an influence. Culture com-
bines a shared understanding, a way of seeing things, of thinking and a way
of carrying out tasks. ‘The character and validity of a culture is to a large ex-
tent language dependent. Language helps to preserve traditions, shape
modes of perception, and profoundly influences patterns of social inter-
course’ (Carter and Atchinson in Hume and Pryce 1986, p.18).
Any factors that relate to a person being perceived as different from the
majority increase the possibility of discrimination and oppression. This ex-
tends to groups as well as individuals and this type of discrimination and op-
pression is prevalent and can be seen on a daily basis on the news and within
media coverage. The media has a great amount of power in reinforcing stig-
matization of people and groups. The methods and style used for reporting
on issues relating to mental health is a good example of the media’s power to
stigmatize. Often mental illness is portrayed as schizophrenia, paranoia and
associated disorders related to murders or major criminal acts. This rein-
forces the notion that all people with schizophrenia or paranoia are likely to
commit heinous crimes, which is clearly far from the truth. The negative
response to mental illness is both discriminatory and oppressive to the per-

son who has issues of mental ill health. Labels such as mentally ill, schizo-
phrenic and paranoid hold a tremendous power over the people so labelled
and how they are perceived. Labelling is explored in more depth in Chapter
1.
Discrimination and oppression are often found when considering peo-
ple with learning disabilities. In part this may relate to the confusion be-
tween mental illness and learning disabilities and also the way people with
learning disabilities have been perceived over time. Thompson suggests four
distinct models that can be used to inform society’s views and provide un-
derstanding of how people with a learning disability are perceived: ‘The
threat to society model; the medical model; the subnormality model; the spe-
cial needs model’ (Thompson 1997, pp.151–152).
The first model illustrates the predominant view of society at the begin-
ning of the 20th century. The view that people with mental impairment were
‘morally deficient’ was reinforced by the eugenics movement, and the
perception of them as a threat to society and its social norms increased
discrimination and oppression against people with learning disabilities. This
increased to the point of institutionalization and segregation. The second
model links to the National Health Service in the 1940s. Britain’s response
to mental impairment was such that it was seen as a medical ‘problem’ that
could be controlled through medical intervention. The medical model of
care and control became dominant. The third model relates to the measure-
ment of mental impairment and the ability to achieve educationally. An IQ
test could be used to diagnose a learning disability and to identify whether
the IQ level was below ‘normal’ (see Chapter 1). If it was below normal then
subnormality was diagnosed. The fourth model considers integration into
society but relies on the identification of the special needs of an individual.
The special needs model highlights people’s difference and thus barriers
against integration may be erected. People are fitted into society and society
does not adapt or change to accommodate them.
Thompson suggests that elements of each of these models may affect
current societal attitudes. Each could play its part in explaining the reason
for discrimination and oppression towards people with a learning disability.
‘What all these models have in common is a tendency to marginalize and
disempower, to a greater or lesser extent, people with a mental impairment’
(Thompson 1997, p.152). Another type of discrimination and oppression is
found within the structure of society. Issues of poverty, mental illness and
homelessness may be seen as the person’s fault; there is a ‘blaming the victim’
attitude towards these inequalities. Banks (1995) highlights a further issue
using an example considering the ‘colour blind’ approach. If all people, no

matter what their colour were treated with equal rights and choice, then in
theory all people would be treated the same. However, this does not take
into consideration ethnic or cultural difference or needs. A colour blind ap-
proach can dismiss the importance of respecting an individual’s identity and
of learning and understanding the implications of difference. Banks chal-
lenges equal opportunities policies that have such statements as ‘everyone
will be treated equally irrespective of race, gender or religion’. This type of
statement does not ‘recognise institutional or structural discrimination and
therefore do[es] not recognise the need for positive action to promote
change’ (Banks 1995, p.39). Multiple discrimination and oppression can
occur which then have further impact upon the person or group. If someone
is disabled and elderly, black and lesbian, white and male homosexual and
disabled then the discrimination and oppression they face increases. This
could have a major impact on the person concerned and how he or she man-
ages living in society.
The multiplicity of discrimination and oppression and its effects upon
people or groups is extensive. We have identified only some of the ways it
can occur, but by doing so hope to have emphasized the need for, and impor-
tance of, an anti-discriminatory and anti-oppressive approach. It is impor-
tant, however, to be aware that discrimination and oppression can occur in
many different forms.
TYPES OF DISCRIMINATION AND OPPRESSION

We will now explore and highlight some of the forms that discrimination
and oppression may take and give brief explanations of them.
Prejudice relates to an opinion formed beforehand; it is often unfavour-
able and one which is based on inadequate facts. Prejudice is the holding of
such opinions and using them to reinforce intolerance or dislike for people
of a certain culture, race, religion, sexuality or ability. An example could be of
a group of motorcyclists being asked to leave a pub in the belief that they
would cause trouble.
Stereotyping is characterized by a standardized image or understanding
by the majority of a social group. Stereotyping fails to take into account the
complex nature of individuals and attributes homogeneous images, often
derogatory.
Marginalization can be seen as the process that relegates a person or
group to the margins of the majority or mainstream. Being out of the central
focus can make the person or group marginalized appear unimportant and to
hold little, if any, significance. A person who uses a wheelchair and is not
able to access the local night club due to the physical barriers created by
stairs and doors, is marginalized.
Covert discrimination is usually not obvious to the person being discrimi-
nated against. For example, when someone with a learning disability applies
for a job and the employer rejects that person based on his or her learning
disability but says it is because the position is already filled. Another exam-
ple of covert discrimination is that of accommodation being advertised and
the caller being told the accommodation has been let when it has not, be-
cause the advertiser has a prejudice against the caller’s accent, dress or looks.
Overt discrimination is openly done. An example of this may be found in
pubs with signs saying, ‘Travellers will not be served’. Another example of
overt discrimination is that of accommodation-to-let postcards in windows
that state people on benefits need not apply.
Positive discrimination is permitted when it is used in the context of educa-
tion, teaching or welfare to meet the special needs of a person or a particular
group. An example would be advertising for female-only staff to work in a
teenage mother unit.
Discrete discrimination may occur, for example, when a woman goes for a
job interview and is asked about her intentions regarding marriage and chil-
dren but a male candidate is not asked the same question. The treatment of
one person less favourably than another due to colour, race or ethnic origin
are other examples.
An example of indirect discrimination is when there is a requirement for
someone to speak English where a person using a different first language
could carry out the job equally well.
Individual, group, institutional, structural and societal discrimination can oc-
cur. Studying the feminist perspective of social work in authors such as Tay-
lor and Daly (1995) can provide a valuable insight into the developmental
process of oppression. Taylor and Daly considered the historical develop-
ment of women’s roles as being subservient to that of men, this being preva-
lent in many aspects of life such as social convention, law, and medical and
religious practice. This is another example of the power that can be held by
one group in society over another.
Some areas of discrimination and oppression have been challenged by
sections of society, and legislation has been introduced to try to address
them.
LEGISLATION
Various pieces of legislation have been introduced over time as part of the
ongoing battle against discrimination and oppression.
The Sex Discrimination Act 1975 was set up to eliminate discrimination
in relation to gender. This focused on employment, education, housing,
goods, facilities, services and advertising. A main part of the Act supported
women who faced discrimination through marital status when applying for
employment and when jobs were being advertised. The Act was updated by
the Sex Discrimination Act 1986. The Act made it illegal to discriminate on
the grounds of a person’s gender and applies to both men and women.
The Race Relations Act 1976 was set up to promote good and positive
relationships between ethnic groups. The ideal was to combat and alleviate
racial discrimination. The Commission for Racial Equality was formed
through this legislation. The Commission was set up to investigate alleged
discrimination with the aim of ordering organizations to amend their poli-
cies and practice.
The Disabled Persons (Services Consultation and Representation) Act
1996 was intended to make improvements for people who had physical dis-
abilities, learning disabilities and issues of mental health. The Act was to sup-
port assessment, representation, consultation and service development.
Unfortunately not all sections of this Act were implemented, probably due to
cost implications.
The Criminal Justice Act 1991 required the Home Secretary to provide
and publish annual information to support the justice administrative system
in not discriminating on the grounds of race, sex or any other ‘improper’
grounds.
The Disability Discrimination Act 1995 was introduced to alleviate dis-
crimination on the grounds of disability, it being defined as ‘a physical or
mental impairment which has a substantial and long term adverse effect on
ability to carry out normal day to day activities’ (Disability Discrimination
Act in Brayne and Martin 1997, p.416). It is unlawful to discriminate on
grounds of disability in employment, except for education, the police, the
armed forces, the prison service and any firm that employs less than 20 peo-
ple. Discrimination should not occur in services such as shops and restau-
rants and in property selling and letting. This piece of legislation appears
weak in challenging discrimination. It may well highlight some of the issues
and start to challenge and alter culture but does not appear powerful enough
to abolish it. In Hansard the Act is described as ‘riddled with vague, slippery
and elusive exceptions making it so full of holes that it is more like a colan-
der than a binding code’ (Gooding 1995).
The Children Act 1989 provides specific instruction to authorities stat-
ing they must give regard to racial groups. When making day care arrange-
ments for children or selecting foster parents, racial needs must be taken into
consideration. The decision has to be made with the best interest of the child
at the forefront of concern. This means that a child may or may not be placed
with a person of their own racial background or nationality.
The Children (Scotland) Act 1995 focuses on the rights of children and
the responsibilities of adults and public bodies to provide care and protec-
tion for them. The Act encompasses the broad principles of commitment to
children made under the United Nations Convention on the Rights of
Children and the European Convention on Human Rights.
The National Health and Community Care Act 1990 requires planning
at community level. Services are to be devised that meet the needs of the
population. The statutory authority has a duty to plan and provide an assess-
ment of need; however, it is at the discretion of the authority whether or not
to provide services. Therefore the needs of minority groups may not be met.
The Human Rights Act 1998 was intended to create a cultural shift
focused on individual rights. The intention appears to be far reaching,
including playing a part in the decision making of Government and legal
systems. The understanding that people with disabilities have the same
human rights as any other person is not something that society has histori-
cally been supportive of:
The withdrawal or restriction of medical services, the abuse and de-
grading treatment of disabled people in institutional care, and preju-
diced judgments…are just some of the areas where the Human Rights
Act may help disabled people live fully and freely, on equal terms with
non-disabled people. (Daw 2000, p.i)
The Disability Rights Commission will work with other organizations
towards achieving equality. At the moment the effectiveness of this legi-
slation is being observed. Until challenges are made to human rights
violations through the court system and legal decisions are given clarifying
such violations the full impact of the Act cannot be accurately judged.
The Adults with Incapacity (Scotland) Act 2000 introduces a new struc-
ture of supporting people who do not have the capacity to make decisions
for themselves due to mental disorder or an inability to communicate.
Doctors will be involved in assessing capacity, completing certificates of
incapacity and treatment. The Act recognizes that incapacity is not an ‘all or
nothing’ situation and that some adults may be able to make simple or
straightforward choices. However, some may not be able to decide on more
complex issues involving money, property or their own personal welfare.
The Act introduces new provisions that will enable adults with incapacity to
maximize their ability, encourage the development of new skills and ensure
that whatever intervention is provided it is the least intrusive possible. This
may help to challenge many issues of oppression and discrimination faced
by ‘Adults with Incapacity’.
The majority of agencies, statutory, voluntary or private should have
their own policies and procedures to challenge discrimination and oppres-
sion within their specific practice. These should be readily available to en-
able them to be studied and implemented.
We hope to have shown that discrimination and oppression occur in
many different forms and legislation has been implemented to try to chal-
lenge these. However, the limitations of the legislation, the weakness of
wording and restricted implementation all indicate that this has not been al-
together successful. The majority of the issues discussed so far in this chapter
are pertinent to working with people with learning disabilities. Working in
an anti-discriminatory and anti-oppressive way is far from easy in a society
and legislative framework that frequently does not support equality. In the
next sections we will start to explore methods that inform working in an
anti-discriminatory and anti-oppressive way and practice examples will be
given in case studies.
INFORMING, DEVELOPING AND USING AN

ANTI-DISCRIMINATORY AND ANTI-OPPRESSIVE APPROACH
There are various theories that can be used to inform an anti-discriminatory
and anti-oppressive approach. The first theory that will be explored and
used in the context of people with a learning disability will be Thompson’s
PCS Analysis (Thompson 1997).
The PCS Analysis provides a clear and understandable method of
considering discrimination and oppression in the context of personal,
cultural and societal levels. Thompson describes the interlinking and over-
lapping of each and how one can inform, impinge upon or relate to another.
To emphasize this approach Thompson’s explanations will be quoted and
the link between the three highlighted:
P refers to the personal or psychological; it is the individual level of

thought, feelings, attitudes and actions. It also refers to practice, individ-
ual workers interacting with individual clients, and prejudice, the inflexi-
bility of mind which stands in the way of fair and non-judgemental
practice. (Thompson 1997, p.20)
We are each individual and have our own beliefs and values. These may have
developed through learning over our lifetime and may at times be seen as no
more than common sense. However, each belief, value and attitude will have
been learnt, and to a varying extent reinforced, until it becomes intrinsic in a
person’s individual value structure. Values may have been learnt from a
variety of sources including parent or parents, schooling, neighbourhood or
through culture and religion. The structure of society, political influence, the
media and worldwide actions may all influence personal beliefs and values. A
person may have learnt not to talk to people who are homosexual or to stay
away from people who appear or act differently through mental illness,
learning or physical disability. This type of personal learning may vary
tremendously between different cultures and through ethnicity, religion and
individual upbringing.
Personal development is influenced by the culture that we live within.
The cultural norms and expectations can influence an individual to conform.
Culture can place a heavy influence on the forming of opinions, beliefs and
values. This can subsequently guide actions and how behaviour and percep-
tions are understood. This leads into the C of Thompson’s PCS Analysis.
The C encompasses personal beliefs and values:
C refers to the cultural level of shared ways of seeing, thinking and do-
ing. It relates to the commonalities – values and patterns of thought and
behaviour, an assumed consensus about what is right and what is normal;
it produces conformity to social norms… (Thompson 1997, p.20)
In each culture certain social and cultural values will be exercised. These
values influence our individual perceptions of what is acceptable and how
we treat certain people. Cultural views can underpin how we act towards
people with disabilities, people of other races, ages or of a different sex.
Learnt personal views and wider cultural influences may lead to discrimi-
native and oppressive attitudes. Thompson emphasizes that P views are not
always influenced by cultural views but that personal values and beliefs need
to be explored within the cultural structure.
The P and C level in turn are encompassed by the S level:

S refers to the structural level, the network of social divisions: it also relates
to the ways in which oppression and discrimination are institutional-
ized and thus ‘sewn in’ to the favric of society. It denotes the wider level
of social forces, the sociopolitical dimensions of interlocking patterns of
power and influence. (Thompson 1997, p.20)
The structure of society includes the complexity of social division and the
powerful influence of social acceptance. Class, gender, age and disability can
all be affected through social division and the power of society in deciding
what is acceptable, which groups of society require support and which do
not. Society influences cultural views, which may in turn impact upon
personal values and beliefs. Thompson suggests that the three levels at which
discrimination and oppression operate need to be understood and the way
they affect each other acknowledged.
Having awareness of the different types and ways that discrimination
and oppression can occur is a starting point in the process of anti-
discriminatory and anti-oppressive practice. It is important to examine per-
sonal views and beliefs to see if they are negative or condone discrimination
and oppression. At a personal level there is a greater ability to challenge and
re-evaluate practice. A worker can challenge discrimination and oppression
at a cultural level but the ability to succeed in changing attitudes becomes
more limited. The wider the context in which discrimination and oppression
are challenged, the more difficult for the individual it can become. Neverthe-
less, as individual workers a part can be played in the important task of pro-
moting anti-discriminatory and anti-oppressive practice:
This involves individuals playing their part in challenging collectively
the dominant discriminatory culture and ideology and, in so doing,
playing at least a part in the undermining of the structures which sup-
port, and are supported by, that culture. (Thompson 1997, p.23)
There are other theories and methods that can inform understanding and
ways to challenge discrimination and oppression. Dominelli’s (1997a) work
enables consideration and strategy development in challenging discrimi-
nation in the context of racism. Dominelli suggests eight ‘avoidance
strategies’ that occur as ways of not having to deal with racism. We would
like to suggest that these strategies can be transferred and, to an extent, used
to look at some of the avoidance tactics used when considering attitudes
towards people with learning disabilities:
1. Denial – a refusal to accept that people are discriminated against for

having a learning disability.
2. Omission – the non-acceptance of disability, saying everyone is
equal and thus ignoring the implication of the learning disability.
3. Decontextualization – accepting discrimination happens, but not in
their lives or locality, it is a problem elsewhere, not here.
4. The colour-blind approach – treating everyone the same and not
seeing and accepting each person for the individual she or he is.
5. The ‘dumping’ approach – blaming the person with a learning dis-
ability for the discrimination faced.
6. The patronizing approach – accepting people with learning disabili-
ties for their ways as they cannot help being the way they are.
7. Avoidance – not wanting to get involved in the debate of discrimina-
tion and equality.
8. Exaggeration – if we have an equal opportunities policy in place
everything will be fine.
(Adapted from Dominelli 1997a, pp.72–73)
Consideration of these eight avoidance strategies raises awareness of how

they may be used every day to discriminate. This type of reflection upon
discrimination and oppression can be a powerful tool in identifying and
challenging it.
Banks (1995) reinforces the argument that anti-oppressive practice is, to
an extent, achievable through challenging structural oppression:
…that is, challenging the systems of beliefs, policies, institutions and
culture that systematically discriminate against and demean women,
Black people, differently abled people, lesbians and gays, working class
people and other oppressed groups. (Banks 1995, p.114)
Dalrymple and Burke’s (1995) work on drawing together various thoughts
and ideas includes the work of Norton (1978) who suggests development of
a practice model that involves the worker and client in partnership, both
committed to working toward change with the purpose of achieving a
greater level of equality within society. Working in partnership could
include: developing individual ideas, achieving change, influencing society
and challenging political action so that discrimination and oppression can
be addressed within the wider society.
The importance of and need for an intrinsic value base that promotes
equality through an understanding of the structure of discrimination and
oppression is clearly highlighted within the requirements for nursing evi-
dence based practice (UKCC 1992) and social work training (CCETSW
1989, 1995, 1996).
Why is a value base needed?

We will initially highlight the importance of values and having an informed
value base to underpin practice. Values and beliefs can be both implicit and
explicit and they underpin the ways that things are carried out. Values
determine what people think ought to be done, and are intricately linked
with moral and ethical codes, whereas beliefs are what people think is or is
not true. Values and beliefs contribute to shared meanings, understandings
and expectations which are distinctive to a particular group and are passed
on to new members (Louis 1980). It is with these links in mind that the
importance of a structured, tried and tested value base is reinforced. Various
professional training courses state the requirement for a clear value base to be
used to enable the development of evidence based practice.
Within nursing training the need to develop evidence based practice is
highlighted. The UK Central Council for Nursing, Midwifery and Health
Visiting (UKCC) states:
As a registered nurse, midwife or health visitor, you are personally ac-
countable for your practice and, in exercise of your professional ac-
countability, must maintain and improve your professional knowledge
and competence. (UKCC 1992, Clause 3)
The value requirements identified in 1996 by CCETSW for social work
training help to reinforce the importance of a sound and structured value
base in practice. The rules and requirements state that a social worker’s
practice ‘must be founded on, informed and capable of being judged against
a clear value base’ (CCETSW 1996, p.18). The values identified are as
follows:
• to identify and question their own values and prejudices, and their
implications for practice
• to respect and value uniqueness and diversity, and recognize and
build on strengths
• to promote people’s rights to choice, privacy, confidentiality and
protection, while recognizing and addressing the complexities of
competing rights and demands
• to assist people to increase control of and improve the quality of

their lives, while recognizing that control of behaviour will be
required at times in order to protect children and adults from harm
• to identify, analyse and take action to counter discrimination,
racism, disadvantage, inequality and injustice, using strategies
appropriate to role and context
• to practise in a manner that does not stigmatize or disadvantage
either individuals, groups or communities.
(CCETSW 1996, p.18)
These must all be ‘consistent’ and require ‘thoughtful integration’ into

practice (CCETSW 1996, p.18).
Thompson’s PCS Analysis, Dominelli’s avoidance strategies, CCETSW’s
value base and the importance of using evidence based practice can all
provide insight and understanding. We will illustrate the use of anti-
discriminatory and anti-oppressive practice through the following two case
studies.
CASE STUDY ONE

Iyawo was 70 years of age and lived with her niece, Adaku; both were
African-Caribbean. Adaku was unexpectedly rushed into hospital with a
serious medical condition. This meant that Iyawo, who had a learning
disability and could not manage to live alone, was placed in emergency
respite care in an older persons’ home.
Iyawo seemed to settle in without too much distress. She joined in social
activities with other residents and said she liked her room. Iyawo was given
support in personal care including bathing and washing her hair. After
washing her hair, the combing of the hair afterwards caused problems as
some broke off during the process and the member of staff did not know
how to plait or twist the hair in Iyawo’s usual manner. Over the week Iyawo’s
skin also became dry and noticeably patchy at the elbows and knees. In addi-
tion, Iyawo told staff that she missed her niece’s home cooking and asked if
she could have some food prepared in the same way as at home.
Iyawo was admitted in an emergency and at that time thought was not given
to her cultural needs as finding her a bed took precedence. Iyawo was visited
by a social worker once she was safely placed but her personal care needs
were not raised as a specific issue by her or by the residential staff.
The staff in the home were all white and did not have experience of the
cultural needs of an African-Caribbean person. They were without experi-
ence in how to offer appropriate personal care for Iyawo. None of this was
questioned by them or by management staff. They had wrongly assumed
that the regular shampoo found in the bathroom would be suitable. They
had also assumed they would be able to comb Iyawo’s hair in the way they
tended to the other residents who were white. They were then unable to style
Iyawo’s hair which left her looking unkempt and took away her dignity.
Due to staff not thinking about Iyawo’s cultural needs, she was discrimi-
nated against both in her personal care and in her diet. Iyawo may have used
the regular shampoo, but in fact at home used a specialist shampoo and con-
ditioner which should have been checked out. At home Iyawo also always
used body oil to condition her skin after bathing and this also was neglected.
Iyawo was expected, along with the other residents, to choose from the
two main meals on offer, although this did not take into account the type of
food she particularly enjoyed and was used to at home. Whilst this was not
intentionally done, the lack of thought about her cultural needs meant that
Iyawo did not receive the appropriate care that she was entitled to. Lack of
thought about practice resulted in discrimination.
CASE STUDY TWO

Heinrique had recently moved from a residential home in another part of the
county into a specially adapted house for people who used wheelchairs. He
liked his new home and had formed a good friendship with another person
in the house. Heinrique was able to continue to attend his college course and
joined a local youth club. Before the move Heinrique had regularly attended
church and this was important to him.
In his new locality the local church of his denomination was reached by
a flight of steps and there was no wheelchair access. Due to lack of suitable
transport, Heinrique also needed to be accompanied by a member of staff to
enable him to get to and from church and the staffing levels did not allow for
this.
Heinrique was oppressed and discriminated against in several ways. As a
person with learning disabilities he was not accepted by some people within
his local community or by some people in wider society. As a wheelchair user
he was also denied access to many places due to inaccessible kerbstones and
doorways. Additionally, there were no local taxis that were wheelchair
accessible to enable him to go out independently without staff.
Heinrique required support but resources were limited and did not allow
for a regular one to one ratio to enable him to attend church. Nor was he able
to attend his preferred church due to the inaccessibility of the building.
The local vicar was able to offer Heinrique the opportunity to attend a
service she held in a local residential home once a month. This was accepted
but did not prevent the discrimination faced by being unable to access the
church building and church services. Additionally, it meant Heinrique
having to rely upon others for support when he would have preferred
independence.
CONCLUSION
Various types of discrimination and oppression have been explored and isms
have been considered. Theoretical approaches that go towards explaining
and challenging the structure of discrimination and oppression have been
highlighted. These provide a framework that suggests how anti-discrimi-
natory and anti-oppressive practice can be continually developed.
In reality, care and support workers can challenge discrimination and
oppression but are, to an extent, restricted by the legislative and structural
framework of care provision. The promoting of rights, choice, positive edu-
cation and awareness in society must play a key part in achieving equality.
The following points may help in reflecting upon practice in a positive,
person-led way, taking into consideration the power that comes with a care
or support role:
• The ability to recognize and challenge discrimination in a positive
way.
• Having a universal commitment to equality within the learning
disabilities field.
• Understanding the misuse of power.
• Having access to anti-discriminatory practice training.
• Being aware of the need to use non-jargonistic language.
• Remaining open and critical to personal working practice.
• The use of theories such as Thompson’s PCS model to understand
how inequalities and discrimination feature in social circumstances.
• The use of advocacy and consultation groups through independent

advocacy services.
• An awareness of the conflicts of duties and powers working within
the NHS and the Community Care Act 1990 and other relevant
legislation.
(Adapted from Thompson 1997)
These perspectives can help to provide part of the structure that is required
for realistic anti-discriminatory and anti-oppressive practice. They are just
some of the ways that anti-discriminatory practice can be worked towards
and should be an intrinsic part of everyday practice. The consequence of not
practising in such a way and of the person being diminished or treated in a
tokenistic way is powerfully summed up by Thompson:
…practice which does not take account of oppression and discrimina-
tion cannot be seen as good practice, no matter how high its standards
may be in other respects. For example,…intervention with a disabled
person which fails to recognise the marginalised position of disabled
people in society runs the risk of providing more of a disservice than a
service. (Thompson 1996, p.10)
Key points
• Discrimination and oppression can take many different forms.
Sometimes it is clearly visible and at other times subtle and more
difficult to identify.
• Discrimination and oppression can be faced by people for many
reasons, e.g. due to race, colour, culture, gender, age, class,
ability, religious views and sexuality.
• Personal, cultural or societal views and understanding can
impact on the level of discrimination and oppression a person or
group of people may face.
• There is legislation that challenges aspects of discrimination;
however, legislation does not support all people and all
situations.
• Theories can aid understanding and subsequently inform the
challenging of aspects of discrimination and oppression.
Theories can be used to underpin the majority of care and
support work undertaken within the learning disabilities field.
• The value base suggested as an underpinning to social work
training highlights the need for anti-discriminatory and
anti-oppressive practice to be an intrinsic part of care and
support work.
• Informed, evidence based practice is crucial.
• Anti-discriminatory and anti-oppressive practice needs to be an
integral part of everyday practice.
4
What is Normalization?
INTRODUCTION
In the 1970s and 1980s, normalization was a theory of great influence
informing the field of learning disabilities. Today it still holds an important
place in explaining how learning disability services and care provision have
developed. In this chapter, brief consideration will be given to what is meant
by normalization and where the idea originated. We will then go on to
explore in more depth what impact normalization and related theories have
on today’s care structure. This chapter is not intended to be a definitive
guide, rather an introduction to the concept of normalization. Two case
studies will be used to help place normalization into a practice context.
NORMALIZATION AND THEORETICAL LINKS

Wolfensberger provided a statement of the normalization principle as: ‘The
utilization of culturally valued means in order to establish and/or maintain
personal behaviours, experiences and characteristics that are culturally
normative or valued’ (Wolfensberger 1977 in O’Brien 1981, p.2).
Thomas and Pierson provide their definition of normalization as ‘a con-
cept (originating in Scandinavia and further developed in North America)
that emphasizes the desirability for people with learning disability to live a
lifestyle as close as possible to the norms of the surrounding society’
(Thomas and Pierson 1996, p.249). Normalization is a concept that focuses
on people with learning disabilities being able to live and function within
the same structural norms as the rest of society. This may be a sound ideal and
one desired by many people including those who provide support and care
services. However, identifying the ultimate goal desired does not make it any
easier to achieve in practice.
65
The ethos and principle of normalization originated in Scandinavia and

focused on the need for services to be available for people with learning dis-
abilities so that they could have similar lifestyles to others (Bank-Mikkelsen
1980; Nirje 1969). Wolfensberger (1972) developed the theoretical basis of
normalization from a different perspective. In North America, Wolfens-
berger used deviance theory as a way of explaining the stigma faced by
people that were seen as different and often perceived in negative ways
within society. Wolfensberger (1983) went on to develop his initial thinking
and reformulated normalization as ‘social role valorization’, which stressed
that people should be able to occupy socially valued roles within their
communities. This was described as: ‘The creation, support and defence of
valued social roles for people who are at risk of devaluation’ (Wolfensberger
and Thomas 1983). The notion of being able to undertake social roles and
then fulfilling those roles is of key importance. Wolfensberger stated:
It is a well established fact that a person’s behaviour tends to be
profoundly affected by the role expectations that are placed upon him.
Generally people will play the roles they have been assigned. This
permits those who define social roles to make self-fulfilling prophesies.
(Wolfensberger 1972, pp.15–16)
Eight general roles that may be applied to people who are part of dis-
advantaged groups were suggested by Wolfensberger and Thomas:
• subhuman organism
• menace
• unspeakable object of dread
• object of pity
• holy innocent
• diseased organism
• object of ridicule
• eternal child.
(Adapted from Wolfensberger and Thomas 1983)
Wolfensberger and Thomas suggested the possibility that such terms could
devalue and label people and consequently could be used as powerful social
influences and methods of control. If people are treated in a particular way
by society according to the label placed upon them, they may face opp-
ression and discrimination (see Chapter 1 for labelling theory). If people are
WHAT IS NORMALIZATION? 67
seen as ‘objects of pity’ or as ‘eternal children’ they may be treated in a way

that does not enable them to develop a new role; they may not have the
opportunity to move on from the restrictions created. Although
Wolfensberger developed his ideas about social role valorization, in some
quarters this was criticized as complex (for example, Brown and Smith
1994). However complex the ideas, they have been influential in
developing understanding and changing perceptions about people with
learning disabilities and the sort of opportunities that should be available to
them.
As in some other countries, the principle of normalization was used in the
UK by people endeavouring to act in the interests of people with learning
disabilities. Additionally, there were other factors that influenced change to
the way care was being provided – factors such as the quality of care
provision and the political pressure faced over the high cost of hospital
based care. Thus, a combination of these aspects played a part in influencing
change to the structure of care provision in the UK. These ideas can be
studied further, for example, through the works of Emerson in Brown and
Smith (1998), and Race in Malin (1987).
NORMALIZATION IN THE UK
During the 1960s and 1970s in England and Wales there were scandals
reported of neglect and abuse that had occurred within ‘hospital’ settings,
Howe Report (Department of Health and Social Security 1969). The
normalization principle played its part as a factor in identifying and
persuading policy makers and relevant professionals to reject long stay
hospital based services in the UK for people with learning disabilities (Kings
Fund Centre 1980). Additionally, other factors, including the belief that
community care would be a cheaper option, reinforced the need for change.
The emphasis was placed on services needing to deliver a high quality of life
for people with learning disabilities. This would supposedly be achieved by
reproducing the lifestyle that was experienced by people who were
non-disabled. This would be realized if:
• day to day living was achievable
• progression through the course of life took place
• there was the ability to choose and have self-determination
• there was the opportunity for equality in economic standards.
Emerson summed up normalization thus: ‘Normalization becomes a state-

ment about how services can reflect the basic rights of people with learning
difficulties in an Egalitarian society’ (Emerson in Brown and Smith 1998,
p.3).
In the UK, much of the work undertaken by academics and policy mak-
ers in the field of learning disabilities focused on the concept of ‘An Ordi-
nary Life’. The idea of An Ordinary Life was proposed by the Ordinary Life
Movement (Kings Fund Centre 1980). The initiatives and principles were
based on the idea of ordinary homes in ordinary houses in ordinary streets
rather than hospitals and hostels. It also included the understanding and ac-
ceptance that people with learning disabilities have the right to live as others
do within their local community; to share in using ordinary facilities and to
widen educational, work and leisure opportunities.
Community living
The ideas of An Ordinary Life helped to pave the way for the development of
services, which enabled many people with learning disabilities to move into
and live in their ‘ordinary’ houses. We now see many different models of
living within the community. These range from people with their own
tenancies to individuals living in houses with 24 hour staff support, and all
the designs for living in between. Unlike hospital or large group living, this
range of housing options better promotes choice and inclusion and better
enables people with learning disabilities to live ‘in the mainstream of life’,
thus achieving part of the Kings Fund goal (1980).
Allen (1994) highlighted that although the initiatives of An Ordinary
Life had a considerable impact on the way residential services were provided
they did not have equal impact on day care service provision. We will now
briefly highlight the development of day services to enable an understand-
ing, and the impact of ideas influenced by the normalization principle.
Day care provision

In the 1960s, the need for day care provision within local communities for
people with learning disabilities was highlighted through legislation. The
Mental Health Act 1959 (in Scotland 1960) gave local authorities the power
to provide day care services within the community. P.Williams (1995)
identified that by the 1970s many Adult Training Centres, often referred to
as ATCs, were set up in most local authorities. These day centres offered
often in excess of one hundred places for people and the main focus was
industrial training. Over time, the value of ATCs was questioned by some; it
was thought that they provided limited opportunity and the work carried
out was often mundane and repetitive. There were also concerns of exploit-
ation due to the minimal monies offered for the tasks completed (Allen
1994). The National Development Group (1977) was a body set up by the
Government to advise on policies in relation to people with learning
disabilities. Recommendations were put forward for ATCs to become ‘social
education centres’ and to focus on people’s education, social and daily living
skills. In line with the development of day services, legislation was also
developing and guiding the way forward.
The White Paper Better Services for the Mentally Handicapped (DHSS and
Welsh Office 1971) and the Scottish counterpart (Scottish Home and Health
Department 1972) were published, setting targets for change and the devel-
opment of community based services. The English and Welsh Office recom-
mended an expansion of day care places. In 1970, there were approximately
26,400 places available. The recommendations suggested that this should
increase to over 75,000 during the following 20 years. In part, the increase
was supposed to enable people leaving the long stay hospitals to receive day
care; however, the targets were never achieved. There were two factors that
played a part in this: first, the difficulty in releasing monies from hospitals
and, second, the changing views, rights and roles of people with learning
disabilities within society. O’Brien was key in highlighting and suggesting
how their rights could be better enabled and achieved.
The work of O’Brien has had considerable impact upon the ideas and
development of community based services in the UK and internationally.
O’Brien suggested the notion of ‘five accomplishments’ that should be
aimed for and ideally met by community based services. These five accom-
plishments are described below and each is followed by an explanation of
how it can be related to practice within the learning disabilities field.
O’Brien’s Five Accomplishments (Adapted from O’Brien 1987a)

Community presence
People with learning disabilities who have supportive networks and who are
able to be active in the life of the community through work, leisure or just as
a part of it are more likely to have positive roles within the community. This
can safeguard against being treated in negative ways by society. This
accomplishment refers to the many positively valued roles they may under-
take within society such as consumer, employee, friend and neighbour.
Choice
A basic and fundamental right is to have autonomy and control over
decisions about all aspects of life, day to day issues and about major life
events. Promoting the rights of people with learning disabilities and treating
them with respect and dignity is a core activity for the caring services. It
means making sure that opportunities are provided for them to learn about
and exercise their rights, to learn how to choose effectively and accountably.
Competence
People with learning disabilities should have the opportunities to develop
skills and reach their full potential. This relates to how the caring services
assist them to use the same facilities, be in the same places, and do the same
sorts of things as other people, at the same times of the day, week and year. It
requires effort to ensure that they are visible in valued ways at home, work
and in leisure.
Respect
This refers to the rights of people with learning disabilities to be able to have
a valued role within society, to have opportunities to develop their roles, to
learn and grow in the sense of their full humanity, from skills and social
competence to feelings and self-awareness. To be competent in a range of
ways helps in other areas of life and increases the chances that they can
contribute to their own and others’ lives.
Community participation
A key feature of community life is that a person develops a wide variety of
relationships with a range of people, from casual acquaintances and neigh-
bours, to deep, warm friendships and lifelong partnerships. It is necessary for
the caring services to find ways that people with learning disabilities can be
supported in developing an extensive network of others to interact with, in
positive and meaningful ways. It is about being an active participant in
everyday life.
O’Brien’s five accomplishments can help guide the process of integration
and inclusion with people with learning disabilities. They highlight the
importance of people with learning disabilities being supported in having
their own social networks, living accommodation, relationships, and work
opportunities similar to others in society. Ties and Connections: An Ordinary
Community Life for People with Learning Difficulties. (Kings Fund Centre 1988)
highlighted the need for paid employment in preference to tokenistic

‘pocket money’ payments and it also highlighted the need for access to
education. Another key issue was the importance of people with learning
disabilities being treated in a manner that was appropriate to their
chronological age, not their mental age as identified through, for example,
IQ testing. With this in mind, the philosophy developed that they should be
supported to speak for themselves and to take a level of risk in achieving
their aims and objectives. This could be achieved in part through them
making informed choices either with or without assistance or additional
support.
O’Brien (1987a) highlighted the complexity of normalization and
choice and provided some suggestions as to how they could be achieved:
Choice is the experience of autonomy both in small and everyday
matters (e.g. what to eat or what to wear) and in large, life-defining mat-
ters (e.g. with whom to live or what work to do). Personal choice
defines and expresses individual identity. Without focused effort to
increase available options and provide support for decision making,
people with severe handicaps will be passive and without voice or the
ability to escape undesirable situations… People with severe handicaps
can challenge others’ ability to detect personal preferences; some may
depend upon a guardian to choose their interests. Valued activities will
increase the variety and significance of the choices that a person makes.
(O’Brien 1987a, pp.177–178)
The development of advocacy services (see Chapter 6) such as People First
motivated and highlighted the rights of people with learning disabilities to
have a say in the way their lives developed. This was a clear progression from
the role of a paternalistic social care movement (Croft and Beresford 1990).
It was also a move away from the medical model of care and control (Smith
1990). The principle of normalization and the subsequent work of O’Brien
have been widely adopted by many of the care and support services for
people with learning disabilities. Using these models as guidance, the work
undertaken upholds the importance of choice and inclusion as central
components in the accomplishment of effective services. Social care pro-
vision for people with learning disabilities during the 1980s and 1990s
showed that the principle of normalization has not been free from problems
when put into practice. We will go on to identify some of the difficulties and
limitations of the perspective.
SOME DIFFICULTIES WITH NORMALIZATION

We will provide some brief examples that highlight some of the difficulties
in achieving a structure that ensures that people with learning disabilities
will be able to undertake a full and active part within their own community.
The right of people marginalized by society to be supported and enabled to
have equal opportunities within society is critical. However, this in itself is
one of the difficulties of the concept. It raises the question whether it is the
services that negotiate the parameters of normalization rather than the
people themselves. This leads on to issues of power, where the power lies and
if this needs to be challenged.
Normalization offers a theory of how to improve services. As services
are controlled by professionals, normalization has enabled profession-
als to retain a key role in the debate…it has enabled professionals to
adapt to deinstitutionalization by developing new models of practice. It
therefore continues to legitimize their authority. (Chappell 1992, p.40)
The Disability Discrimination Act 1995, established to promote and protect
the rights of people who are seen as disabled, is an example of legitimized
authority. The act is flawed by unmeasurable terminology, such as ‘normal’
and ‘reasonable’. The Act relies on the use of the term ‘normal’ to decide if
needs are identified: ‘A physical or mental impairment which has a
substantial and long-term adverse effect on ability to carry out normal
day-to-day activities.’ (Disability Discrimination Act 1995 in Brayne and
Martin 1999, p.416). A person with learning disabilities has a right to be
able to participate in normal activities. However, the way normal activities
are identified and defined may be contentious. If such a person needs specific
care and support that is normal for them, then this should be available.
Should people be excluded from receiving services due to the wording of the
Act? The term appears to rely on majority normal in preference to individual
normal needs. The same argument could be put forward about social norms
and the need to fit within them. Social norms will vary, and consideration of
different groups and cultures may increase the complexity of thinking about
this. In the UK, current social norms may focus predominantly on white
Western philosophies and this could further devalue a person with learning
disabilities who is black or from a different minority group or culture
(Blaxter, Hughes and Tight 1998). This highlights the importance of
considering minority groups and the impact of structural norms upon them.
Structural oppression that restricts people from minority groups is
apparent in many different areas of society. Support or care workers are faced
with dilemmas in day to day work where they are expected to help people
‘fit into’ available services:
…the role of [support or care workers] in challenging it [structural op-
pression] is emphasised, in practice much of the work they do is about
helping people with disabilities ‘conform’ to what is accepted as ‘nor-
mal’ behaviour. (Banks 1995, p.116)
The power that care and support workers hold in adapting someone to fit
into society’s norms should not be underestimated. If the person does not
conform and adapt they may not be seen as successful in the normalization
process. The appropriateness of people being excluded from receiving care if
they do not conform to what is considered normal is clearly questionable.
This can also be considered in the wider context of society’s barriers; for
example, a lack of awareness and understanding by those in society of the
needs of people with restricted mobility may have adverse effects upon less
mobile individuals. Additionally, the physical barriers found within society
may impede day to day living. Examples of physical barriers include
buildings and transport that do not have wheelchair access. These barriers
accentuate the difficulties of fitting into the norms of society. The ideo-
logical base of beliefs and attitudes needs fundamental change to promote an
inclusive society, to enable and support people with learning disabilities to
have fulfilling roles and equal rights.
ROLES AND RIGHTS

In Chapter 9 we will highlight the impact of roles, perceived or real. The role
that someone is perceived to undertake can impact upon them. A person’s
role may affect the success of inclusion and can seriously impinge upon a
person’s rights. The labelling or stigmatizing of people as different or
deviant can be detrimental:
…instead they are to be seen as full members of society, to be treated as
anyone would wish to be treated, albeit with extra support and
assistance. It follows that treatment methods must be ones which
people offering the treatment would find acceptable for themselves.
(Brigden and Todd in Todd and Gilbert 1995, p.142)
People with learning disabilities should have the same rights as others; for
example, in making informed choices about the sort of care to have, where to
live and what to do during the day. When people are empowered and
develop self-determination they should have the right to decide what they
want or need. Real empowerment includes the full involvement of people

with learning disabilities throughout the process of deciding what is wanted
and needed. Real inclusion needs to address the poverty and inequality
faced within society’s structures and not just focus on services to support
inclusion. The marginalization of tasks such as providing shelter and
accommodation at night and recreation during the day time (Fulcher in
Barton 1996) needs to be challenged. There is a need to move forward from
tokenistic normalization of day and night time care to that which is fully
inclusive: day to day living that allows and enables people with learning
disabilities to integrate fully into society. As part of the process of full
integration, there may be occasions when decisions made by people with
learning disabilities are considered inappropriate or potentially harmful.
Support and care workers need to give careful thought to decisions
where the personal choice of individuals may be overruled. Negotiations
should take place with the individuals concerned. In some instances, there
will be multi-disciplinary negotiation and decision making. Each may play a
part in overruling decisions of people with learning disabilities and place
constraints or restrictions. For example, if a person’s choice entails abuse, is
potentially harmful to the individual or to others, contains a high risk or is
life threatening, the decision to overrule the individual clearly may be appro-
priate. At times, a legal duty will be apparent and intervention guided by leg-
islation will be required. However, the informed choice of individuals is of
paramount importance and needs to be supported within the legislative
framework. The legislative structure is constantly changing and in Chapter
10 we provide some examples of how legislation is playing its part in pro-
moting inclusion and participation. Advocacy is an important process in en-
abling informed choice and supporting people in achieving their rights to
gain independence within society. The principles of advocacy and empower-
ment will be explored further in Chapter 6. This process is often very effec-
tive as a method of diminishing power imbalances. This can start to be
achieved by looking at how voluntary advocacy services, independent of
health and statutory provision, support empowerment, participation and in-
clusion. Enabling people to make informed choices, so that they be included
in decision making and be involved in service development, is central. Those
providing care and support must have equal commitment to the process of
inclusion as this is of key importance to its success. Advocacy services have
been playing an important part in enabling some service users to move for-
ward the service that they receive.
In 1998, the Social Services Inspectorate found that many more oppor-
tunities were becoming available within day care services. These included:
• attendance at further education colleges

• using leisure facilities in the community: swimming pools, gym
and leisure centres
• running cafés
• supported employment
• other work related opportunities
• involvement with community based volunteer workshops
• small, rural, community based day services.
These types of day time activities help promote independence, respect,
choice and community presence and clearly reflect the importance of the
work of normalization in general, and in particular, the work of O’Brien.
O’Brien’s five accomplishments are an important reminder of the need to
check constantly that the rights of individuals are being met and that
opportunities to develop the maximum independence possible are available.
We felt it important to try to sum up what normalization is about and
also what it is not about. Whilst researching we found an explanation pro-
vided by the Faculty of Health and Community Care.
Normalization is about:
• the way that you treat people
• the way that you talk to people
• the things that you call people
• the activities that people have access to
• the buildings that people live in.
(Faculty of Health and Community Care 2002, p.1)
Most importantly, however, normalization is about treating people with

disabilities in ways that show they have equal value and worth to you.
Normalization is not about:
• making people normal
• giving people treatment
• changing the individual.
Tyne and O’Brien (1981) have identified many of the difficulties faced by
people with learning disabilities. The Faculty of Health and Community
Care suggests that the principle of normalization can help ‘to break the
vicious circle’ faced in day to day living by:
• changing others’ expectations
• giving greater exercising of rights and responsibilities
• encouraging more decision making by service users
• encouraging more self-advocacy.
We will now place the principle of normalization into a working context

using two case studies. The first will provide an example of where it would
have been more empowering to have used O’Brien’s accomplishments to
inform practice. The second case study will focus on normalization, and the
positive attributes in promoting and developing self-esteem and self-
confidence.
CASE STUDY ONE

Melina lived in a residential home that provided care for six adults with
complex needs. Melina used a symbol board to communicate. Melina’s aunt
was her closest relative, visited frequently and attended reviews and
meetings to support her. The home Melina lived in was the only one in the
area that provided a service for people with multiple disabilities. The home
had recently undergone major change through being taken over by a
different service provider with its own management structure.
Melina seemed less happy, unsettled and appeared quite withdrawn to
her aunt. In discussion with staff, Melina’s aunt discovered that with the
management changes there had also been changes in the workers’ shift
patterns and working practices. The key worker in Melina’s bungalow had
changed.
After careful communication with Melina, her aunt was able to establish
that Melina was generally upset by so many changes. She was specifically up-
set due to the change of her key worker and at no longer being able to attend
her social club.
Whilst some people had been consulted, Melina and the other residents in
her home had not been consulted about the changes that took place. The
changes had been imposed upon them as part of a strategic plan in that
locality. They had been informed of the changes before they occurred but
the reality of how this would affect them was unknown at the time.
As the service users had not been part of the consultation process, their
choice and interests had not been promoted. One of the most important peo-
ple in Melina’s life, her key worker, had been changed without consultation
and without Melina having a say in the process, which upset her greatly. That
Melina had not attended her club was due to staffing levels over the summer,
which therefore affected her ability to get out into the community.
Melina was in a position of depending upon others to meet her needs.
Through her aunt’s intervention, Melina’s wishes were listened to more care-
fully. A plan was made to enable a handover time to say goodbye to her pre-
vious key worker and for Melina and her new key worker to get to know
each other.
On this occasion Melina was treated in an institutional way and was re-
stricted in the service she received through having little available choice. Af-
ter the event and following her aunt’s intervention, recognition was made of
the amount of changes Melina and other residents had had to cope with as
part of the strategic plan. If the principles of O’Brien’s five accomplishments
had been considered and had underpinned practice, then Melina may have
been better empowered and included. She could have played an active role in
the process of change instead of being made a passive recipient.
CASE STUDY TWO

Sid and Reggie were good friends and had lived for 12 years in a residential
home housing 16 people. Over time they had seen other residents move on
to group homes and houses in the local community and decided they also
wished to do this. Sid and Reggie contacted their local advocacy service for
support. They were at first seen separately by members of the advocacy unit.
Later, at their request, Sid and Reggie were then jointly supported by an
advocate to discuss this issue with residential staff and later with a social
worker from the local team.
Through meetings with their advocate, they were enabled to talk
through their hopes and fears concerning a move and were advised of their
rights. Sid and Reggie considered the type of housing they wanted that in-
cluded having a garden, as both were keen gardeners. If possible, they
wanted to be near the bus route so they could be as independent as possible.
Their advocate helped them consider what options were available and the
time this process might take.
The community support team were involved, and through talking to Sid
and Reggie and assessing their skills and abilities they worked in partnership
to identify aspects of support needed. Through this process, they were able
jointly to identify the level of support Sid and Reggie would require when
living in the community. The process also stimulated independent actions
such as Sid joining a Budgeting for Beginners class run at a local college.
Over a year later Sid and Reggie moved into supported housing run by a
housing association in their local area. They have been settled there for five
years and their only regret was not starting the process sooner.
If the process that Sid and Reggie went through is looked at in terms of
O’Brien’s five accomplishments then it was, in the main, successful. In terms
of status and respect, Sid and Reggie had their own network of friends and
acquaintances that they had built up over time. They were active in their
local community and participated in it as valued members socially, through
work and through their daily presence.
Sid and Reggie were able to make informed choices and had autonomy
and control over the decisions made. They were strengthened in this
through the process of advocacy and had support from residential staff and
the community support team. Their interests were respected and they were
supported to think through the process of moving and to look at different
aspects of exercising their rights.
Sid and Reggie were valued in different areas of their lives. Sid was val-
ued at work and Reggie at the day centre, and socially both participated in
the same places and same ways as others in the local community, according
to their personal choice. The wish to move on came from Sid and Reggie;
they had opportunities in their lives for growth and development, which had
strengthened their skills, social competence and self-awareness. These op-
portunities had enabled them to network further and indeed had led them to
their local advocacy unit for support.
Sid and Reggie had an active life in the community and friendships
through some of the clubs to which they belonged, including the local foot-
ball supporters’ club. They had relationships in different forms: their
long-term friendship, friendships with others within and outside the resi-
dential home, friends and acquaintances at their clubs and as valued custom-
ers at local shops. Sid and Reggie were part of their community and
participated in that community.
CONCLUSION
Many texts can be found that explore the principle of normalization in
greater depth and some of these have been highlighted during this chapter.
This introduction to normalization has been written as a way of exploring
the idea, to acknowledge both its positive attributes and its shortcomings.
That society needs challenging, educating and developing to enable equality
for people with learning disabilities is the underpinning message. We believe
that this needs to be considered from birth, through childhood, schooling
and into adult life. The processes and structures that promote exclusion need
to be identified, recognized and challenged.
Key points
• Normalization was a dominant theory in the learning disabilities
field in the 1970s and 1980s. Although times have moved on, it
can still provide insight into a variety of service development
ideas.
• Normalization played a part in the development, recognition
and importance of integration and inclusion and reinforced the
belief that people with learning disabilities should have the same
rights and roles as others to live within society and be part of it.
• Society needs to adapt and change to support and enable people
with learning disabilities to live within the mainstream.
• Five accomplishments were suggested by O’Brien: community
presence, choice, competence, respect and community
participation (1987a). These have provided an underpinning and
guidance for service development and support.
• Advocacy, empowerment, participation and involvement are key
issues when considering making informed choices about life.
Having the opportunity to make informed choices and to be a
valued member within a community is a fundamental right of all
people with learning disabilities.
The continual development of advocacy, empowerment and inclusion plays

a key part in promoting and supporting equality within society. The idea of
moving on from looking after people with learning disabilities to working
with them is crucial.
5
Communication Methods
INTRODUCTION
In this chapter we aim to explore different aspects of communication. We do
not, however, intend to explore in any depth how communication develops
or give an overview of communication theory as this is a vast area and one
that could not be satisfactorily achieved within the remit of this book. Many
other authors have undertaken the task of exploring developmental commu-
nication and developmental theory and we will signpost some of the
relevant texts. We intend to focus predominantly on the practicalities and
methods of communication in practice. Communication can take many
forms including written and spoken word, signing such as British Sign
Language (BSL) and Makaton and use of word boards. Non-verbal commu-
nication such as body language can extend from the full use of the body and
a whole range of facial expressions, to communication through a single
movement or flutter of the eye. Each method can be enhanced through
knowing the person being supported, befriended or cared for and under-
standing individual needs and styles of communication.
Effective communication can be restricted by various barriers, including:
power imbalance, lack of confidence, fear, anxiety, place and expectations of
those involved. We will explore some of these barriers and suggest ways that
they can be challenged and overcome.
Throughout the chapter we will promote the need to be flexible and
adaptable in approach. The ability to listen to the person with a learning
disability and to use relevant services that have a clear knowledge about
communication is important. We will highlight alternative and additional
methods that can enhance communication. Two case studies will be used
that will place the importance of effective communication in a working
context.
81
GENERAL COMMUNICATION
The reason for approaching communication in a general context is to
reinforce the diversity and range of methods that may be used by people
with learning disabilities. Some individuals may require specific support that
enables their communication needs to be recognized and met. Each person is
unique and differently abled, and fully supported communication should
enable participation in all areas of life. We will start by considering what is
meant by communication.
‘Communication – the exchange of information, or the use of a common
system of symbols, signs, behaviour, etc for this’ (The New Penguin English Dic-
tionary 2001, p.278). In today’s society communication is associated with
the exchange of information through a variety of methods. Exchanges occur
through speaking, writing, use of pictures, diagrams and computer gener-
ated images, each one dependent on the information to be exchanged. The
diversity of methods used for information exchange are often commonly as-
sociated with the use of machines or electronic aids:
• mobile phones
• text messages
• faxes
• electronic mail (e-mail)
• data transfer
• computer disks
• CD ROMs.
These different forms of communication and their individual usage may vary
across the world. Within some areas of society and within some developing
countries the use of electronic aids may be limited; reliance may be upon
word of mouth, the written word, radio communication, visual sign or
sound. All methods are dependent upon those who use them and societal
expectations, and can be affected by financial and resource constraints.
Each method of information exchange has value in individual situations
such as personal, family, social, educational or business. Communication
takes place all the time in a variety of contexts – it is the methods used that
differ. There are many barriers that can restrict successful communication,
some of which are given below:
COMMUNICATION METHODS 83
• limited verbal communication or ability to sign

• being unable to read or write
• not speaking the same language
• inability to access and/or use services or equipment such as
telephone or computer systems
• a lack of awareness or understanding of the many different forms
communication can take
• physical disability restricting the communication processes such as
writing, using a word processor or getting out and about
• a visual or hearing impairment
• the lack of ability to concentrate and focus on communication.
Many methods of communication are taken for granted in our day to day
living such as an ability to hold a conversation or telephone each other.
Understanding some of the restrictions that may impede the process
provides a basis for promoting and increasing good communication. If
restraints to effective communication are identified then ways of reducing or
removing these barriers can be sought.
HOW DOES COMMUNICATION TAKE PLACE?

As discussed in the previous section, communication can be carried out in a
multitude of ways. None of the methods highlighted are, in principle,
excluded from use by people with learning disabilities, although the person’s
ability may restrict use of some methods. Many people with learning
disabilities use speech, write, use computers and mobile phones; however,
not all are able to make use of what is often taken for granted by many people
in society. Another aspect to be considered is the process of developmental
learning. By exploring aspects of developmental learning we can begin to
understand how we learn to communicate and the implications if develop-
ment and learning are restricted.
The developmental process can be considered from a variety of perspec-
tives, including those of Birch (1997); Daniel, Wassell and Gilligan (1999);
Davenport (1996); Rosengreen (2000). Communication difficulties within
the learning disabilities field can be explored from a childhood perspective
(for example, Gaag and Dormandy 1993) and from an adult perspective (for
example, Law and Parkinson 1999).
We will provide two examples of how an understanding of developmen-

tal learning can lend insight into communication. A study carried out by
Trevarthen and Richards (in Davenport 1996, p.30) related to a sample of
five babies being studied for an hour a week during the first six months of
life. The study identified the communication differences between babies ly-
ing in the cot looking at overhead mobiles to those in contact with their
mother. The toys were explored and played with, but they observed a ‘sort of
conversation with their mother’:
• From two months of age the babies would open their mouths
when their mothers spoke to them. No sound was emitted.
• At approximately four months the babies and mothers took turns
in communicating – one speaking, the other quiet. When the
mothers stopped speaking the babies made sounds.
• This continued and developed not only as a method of gaining
care but as a mutually enjoyable experience. The body and face
were used in communicating, moving in time with what was
occurring. This is referred to as ‘interactional synchrony’.
(Adapted from Trevarthen and Richards in Davenport 1996, p.30)
Stern (1977) looked at the use of face to face behaviour, holding eye contact,
looking away, smiling and moving head and hands in time with what was
being said. Stern suggested that this behaviour all related to fun and mutual
enjoyment of the communicating experience.
These explanations of developing attachment and communication all
relate to a child who can see, hear and has the mental ability to develop in
line with the majority of children in society. What these studies neglect is
disability and the impact of disability upon development and commu-
nication. As mentioned, other studies provide further insight into these
issues; for example, from a child perspective (Gaag and Dormandy 1993)
and from an adult perspective (Law and Parkinson et al. 1999). We suggest
that the developmental process of a person and the individual’s opportunity
to develop can help inform how that individual has learnt to communicate.
Eye contact, head or hand movements, hearing and concentration may be
affected for people with learning disabilities. The person’s individual
communication style and ability needs to be identified and understood. Thus
having an understanding of development and the effect this may have upon
communication can play a part in removing barriers to effective
communication.
METHODS OF COMMUNICATION ASSOCIATED WITH CARE,

SUPPORT AND EDUCATIONAL WORK
We wish to identify some of the methods of communication found in our
practice experience. This is not an exhaustive list but we hope that it will
reinforce the idea of the many different ways that communication takes
place.
Verbal
Many people labelled as having a learning disability are able to hold a verbal
conversation. The learning disability may have only a minimal influence on
the ability to communicate. People with a profound or severe learning
disability may be able to use specific words or short phrases or sounds to
mean words. Support and care workers need to consider methods and
options for promoting effective communication for people being supported.
British Sign Language (BSL)

In our experience of working in the learning disabilities field we have found
BSL to be used in limited ways. Those who were taught and had used it from
birth through having deaf parents were notable exceptions and as signing
was their first language they were both confident and fluent in it. What they
often lacked later was a signing environment where they could express
themselves and be understood. The use of either single or two hand spelling
and signing is reliant on dexterity, fine motor control and co-ordination. It
also requires the ability to remember and to be able to spell out words or
string many signs together. BSL also uses the movements of the hands, eyes,
face, head and body that are watched and deciphered by the people
communicating. Clearly this is not a method accessible to all.
Makaton
Makaton is a licensed type of sign language that appears to be used
predominantly by people with a learning disability. Licensed type refers to
one that is registered and often has a copyright; software, books, educational
packs and the licence have to be purchased. Makaton is particularly used
with people who have limited verbal expression and it makes use of a limited
amount of signs underpinned by BSL. The specially selected vocabulary is
considered as the most essential and useful in providing basic
communication. Makaton is structured in stages of increasing complexity. It
follows a pattern of language development; the first stage provides signs to
express essential needs. Subsequent stages expand vocabulary and more

complex language is introduced.
Makaton is an important and useful method that can be used to facilitate
learning and to indicate wants and needs. An example of this could be learn-
ing the sign for drink and subsequently using it to get a drink. It is useful to
consider who decides which words and signs someone has the opportunity
to learn. In our experience Makaton is generally used to reinforce verbal
communication.
Paget–Gorman sign system

This is a more sophisticated manual sign language used with people who
have hearing difficulties or specific language disorders.
There are some formats of communication more associated with people who
have some level of visual restriction.
Braille
This is a system that uses embossed or raised dots on a paper; each set of dots
represents a letter of the alphabet. Braille consists of two levels: grade one is
where each word is fully spelt out and grade two uses contractions to explain
groups of words that are frequently used. This alleviates the need to spell out
each word. Braille relies on the ability to be able to feel, and move the fingers
over many dots and understand their meanings.
Moon
Moon is a form of tactile reading used by people with visual impairment and
uses a simplified version of the Latin alphabet. This method is sometimes
used as a way of communicating with people with a learning disability and
visual impairment.
Bliss
Bliss is a symbolic communication system designed for people who have
limited speech and hand functions. The system can range from very basic to
quite sophisticated and is often used before moving on to more complicated
methods of communication. The symbols are often set out on a board and
their meanings relate to the individual using Bliss. The indication of the
symbols may be made by hand, fingers, eye contact, pointers or electronic
aids. Sometimes the symbol might be quite different to the actual word’s
meaning; for example, the symbol might be of a cat but the word that is
meant is animal. It is therefore very important to be aware of the meaning of

the symbols to that individual.
Word boards
Electronic word boards or keyboards are a further development of the Bliss
concept. The signs pressed can spell out the required words onto a screen, or
may be attached to some form of voice synthesizing unit. A speaking unit
enables the person’s chosen signs to be voiced. There are many different
ways that these can be operated: with a hand, finger, pointer and attachment.
With the fast moving development of technology new ideas are emerging
that may further enhance the effectiveness of electronic communication.
Body language and non-verbal communication

We all use non-verbal communication, perhaps far more often and in many
more ways than we realize. Body language is apparent through gesture,
expression and posture. Other non-verbal communication may extend wider
than this; for example, to the clothes we wear. People may dress differently
for different occasions. What is worn for an evening out, to attend court, or
to go for a walk may be different. People dress for specific purposes and also
for a specific look; it may be to achieve respect, look important, or to make
the person feel more confident. Our mode of dress may provide unspoken
information about us, our profession, standards or attitude.
Non-verbal communication is usually specific to the setting and those
who it is between. A quick glance at a close friend could mean something
quite different from the same glance to a stranger. The meanings of
non-verbal communication are dependent upon the shared social under-
standing and relationship of the people involved and of the situation.
Argyle suggested that non-verbal communication can serve many differ-
ent purposes:
Assisting speech – Such as emphasising important words by stressing
them heavily, and saying them more slowly than other words.
Replacing speech – For example, shrugging the shoulders to say ‘I
don’t know’.
Signalling attitudes – Such as adopting a bored facial expression when
forced to listen to someone whose opinion you are not interested in.
Signalling emotions – Such as hugging a close friend that you haven’t
seen for some time to express your pleasure at seeing them. (Argyle
1975 in Hayes 1996a, p.514)
There are various ways that non-verbal communication can be achieved,

including:
• facial expression
• eye contact
• posture and gesture
• proximity
• dress style.
(Adapted from Hayes 1996a)
If this particular area of communication is of specific interest, more can be

learnt by reading appropriate texts that study the psychology of
communication.
Widget
Widget is a licensed computer software program that provides a method of
working with symbols. It enables words that are typed into the computer to
be reinforced with a picture above them. The program also has a speech
facility so that when words are typed they are heard through the computer
speakers. A written document can be read by the computer either as a
sentence, paragraph or in its entirety. The range of pictures available is fairly
extensive which enhances its use. The program appears to be used more
often in educational settings than in social or medical ones.
There are other methods of communicating that have not been mentioned
here that may suit different individuals and their circumstances. Exploration
of different formats can promote communication tailored to individual
needs.
Exploring the environment where communication takes place can pro-
vide insight into how it may impact upon an individual. For example, a per-
son may be able to sign but others within the environment may be unable to.
Thus the non-signing environment inhibits the individual’s communication
style. The use of assisted and augmented communication is dependent upon
the environment and a working example to reinforce this is given in case
study one.
We will now go on to explore support facilities that can enhance
communication.
SUPPORT FACILITIES
There are various support facilities that can be found either within the
expertise of a person or in a developmental programme aimed at increasing
communication opportunities.
Interpreting
The use of interpreters can be beneficial in promoting and opening
communication channels. In a multicultural society we may work with
people whose first language is not English and it is important to effectively
communicate. This may be achieved through the use of an interpreter.
Interpretation services extend to people who use different forms of
communication. This can include specialist signers in BSL, Makaton,
deaf-blind signing, or in reality most of the communication methods already
highlighted.
There are particular issues that can cause dilemmas whilst using inter-
preters, so their use should be carefully considered (Freed 1988). An inter-
preter is useful as a channel for communication between two parties.
Confidentiality, neutrality and providing accurate interpretation of the tone
of the interaction and of the information being discussed are all critical as-
pects of good interpretation. The person being supported may be put in the
situation of having to share personal information with the interpreter as well
as the worker or supporter involved and this could affect the conversations.
An interpreter may have a personal view of the information being given;
however, a trained interpreter would be aware of this and remain neutral in
accurately relaying information. The use of an independent interpreter can
obviously have an advantage over using family members or people from the
person’s community. The independence provides objectivity, autonomy and
confidentiality. Consideration of cultural expectations is important as these
can have an impact and influence upon the work being undertaken (Ahmed
1990).
Speech therapy
A speech therapist is an expert in assessment and diagnosis, treatment and
support of communication and aspects of feeding. A formal assessment and
observation are combined to identify the nature of the support that is
required. These might include aspects such as:
• pre-language skills – skills required that underpin the first words

spoken
• language – focusing on the use and understanding of words
• sound systems – focusing on the sounds and composition of words
that are used when communicating
• articulation – looking at how the lips, tongue and facial muscles
are used when speaking
• fluency – looking at how speech is structured and how it flows
when being used
• voice – whether a voice is present or not, the quality of the voice
and subsequent success in its use.
Speech therapists work with individuals and groups with the purpose of
enhancing certain skills. This work is often achieved through games and by
using the particular interests of those being supported. If the use of verbal
communication is problematic then the speech therapist may look at
alternative systems. We have discussed some of these earlier in the chapter –
systems such as Bliss, Makaton, Paget–Gorman and BSL.
Physiotherapy
A physiotherapist works towards optimizing the physical function of an
individual. This is achieved by facilitating and developing fine motor and
sensory performance and co-ordination. The physiotherapist can assess and
analyse movement and work with physical aspects such as neuromuscular,
muscoskeletal, cardiovascular and respiratory symptoms. If someone is
supported in developing or improving his or her fine motor control,
breathing, or eye to hand co-ordination this can then assist communication.
Physiotherapy intervention can include the treatment of acute clinical
conditions such as respiratory problems and orthopaedic injuries. Through
motor and sensory stimulation a person’s mobility, positioning, balance and
co-ordination may all be improved. Physiotherapists also undertake group
work to stimulate social awareness and interaction. Many of the above
activities could be seen as having little to do with communication; however,
all could be relevant to its enhancement.
Occupational therapy
The role of the occupational therapist, as that of the physiotherapist, may not
be immediately apparent when considering communication. The occu-
pational therapist is a specialist in identifying the ability of a person to

undertake everyday tasks. These may include:
• interpersonal and social skills
• activities involved in having a job
• occupational activities
• activities for daily living
• management of personal needs.
Occupational therapists use their training and skills to enable people to
develop an awareness of themselves and their environment. This in turn can
promote and increase confidence and independence. A learning environ-
ment that is informal and encourages concentration is ideal for a develop-
ment or interaction programme to be carried out. Such programmes can
include:
• daily living activities such as housework, self-care, hygiene,
dressing
• assisted activities such as shopping, budgeting, use of transport
• use of equipment and environment adaptations
• work skills training
• use of cognitive skill; personal development.
In each of these programmes communication between the person and the
occupational therapist has to take place, some of which may be used purely
to achieve the designated task. Other programmes may relate to finding the
most appropriate way to communicate and then supporting the individual’s
skills development. This may include looking at various types of augmented
and assistive communication technology and assessing, introducing and
monitoring the use of the equipment.
A combination of specialist supports can help in promoting and developing
communication. Each situation needs to be assessed and the most appro-
priate and least restrictive method of providing support used. The benefits of
developing confidence, self-esteem and self-worth play their part in prom-
oting a person’s ability to communicate.
In addition there are a variety of therapies using different media and
methods that also promote communication skills. Art, drama and music
therapy can be used in enabling learning and development. The use of these
therapies encourages communication, role play, imagination, relaxation and
group interaction. The methods and way the sessions are used can be
adapted to the needs of individuals and can be used with people of different
abilities. The aim of these therapies is to develop physical and mental re-
sponses, promoting confidence and communication. By their very nature
these therapies are not dependent upon the ability of individuals to verbalize
their feelings. Self-expression through different methods is an important
way of promoting inclusion. As with many services the cost and availability
may vary depending upon the locality. A wider exploration of the support
and resources available may be necessary.
Listening
Listening is another aspect of interpersonal skills, a key part of commu-
nication. Finding different ways to enable effective communication is
obviously important, but holds little value if the information being ex-
changed is not heard. Listening skills require both a cognitive and social
dimension. The cognitive part is about the listener understanding what is
being said. This understanding must include the overall context of the
conversation and the specific relevant details. The listener being able to
understand these details is not the only or final issue. The listening ability
needs to include clarifying the information received with the person
concerned, and making certain that it has been fully understood. The social
skills aspect focuses on enabling the person being supported to commu-
nicate and, if required, discuss relevant issues. This needs to be done in such a
way that all the relevant information is shared and that important parts are
not ignored. McLeod (1993) suggests that cognitive and social skills can be
combined to inform our understanding. This is about making connections
between what you see, what you hear and what you do when commu-
nicating. This may include such aspects as:
• empathy
• body language
• facial expression
• body posture
• appropriate encouragement and reassurance to the person
providing the information
• accurate and clear listening
• hearing what is actually being said
• summarizing and checking the information
• monitoring what is being said

• evaluating your own intervention, checking it is supporting and
not leading or influencing the information being given
• giving time and having patience to work at the person’s own speed
and not to rush them.
(Adapted from McLeod 1993)
In the use of a task centred approach (see Chapter 9), Reid and Epstein
(1972) suggest that communication and listening are founded on two
principal approaches: being systematic and being responsive. The systematic
approach focuses on the ability to keep the person being supported working
at the task in hand, thus enabling the targeted problem to be resolved. The
responsive nature of the approach relates to being empathetic and enabling
the person to be truly involved in the process.
The two approaches mentioned above highlight the importance of
active listening and hearing what is being said. When working with people
with learning disabilities flexible and adaptable methods are required.
Getting to know the person and his or her communication style is a key issue
in identifying how to maximize listening and interpersonal skills.
BARRIERS TO COMMUNICATION AND THEIR REMOVAL

Throughout the chapter we have highlighted potential barriers to successful
communication. So much relies on the flexibility and adaptable nature of the
support and care workers. Within the present care context where many
services have to be bought from care providers, money may restrict the
availability of resources and some resources may be scarce in a particular
area. Having an awareness of the different ways of enhancing commu-
nication is a major step forward in removing some of the barriers.
When we communicate it is usually related to something we have seen,
heard, thought, felt, need or want to find out. Communication involves
reciprocal giving, assimilating and responding to information. When we
receive information we need to evaluate it and then respond to it; this process
enables feedback to be given. The person who has received information can
then undertake the same process. This exchange will, to an extent, be
affected by beliefs, values and perceptions (Nelsen 1980). If the information
we have been given is misunderstood, or our values and beliefs distort the
meaning of it, then feedback could increase the confusion between the
parties communicating. This type of situation can lead to an information
processing block. The majority of actions that a person takes can be seen as
methods of communicating. Verbal and non-verbal methods of communi-

cating are not the only way a person can ‘say’ something; consideration
should be given to silence and absence. If we are totally silent or even absent
from, for example, a meeting that we should have attended, our actions can
be interpreted by others. Our silence or absence conveys a message which is
open to interpretation. Consider a person who becomes mute following
trauma or abuse – the lack of spoken communication may in itself speak
volumes.
Lishman (1994) suggests ways that communication can be enhanced by
developing working relationships:
• being genuine
• showing warmth
• having acceptance
• providing encouragement
• giving approval when required and appropriate
• having empathy
• being able to be responsive
• sensitivity.
(Adapted from Lishman 1994)
There are many different ways that communication can be undertaken and
understood. However, it is not only the methods that are important for its
success, it is also the skills of listening and working in a way that ensures
equality. The way information is processed, the evaluation of beliefs and
values and how a person listens and talks are key issues in using communi-
cation methods in practice. Information given should be listened to carefully
and checked that it has been heard correctly. Likewise information given
should be accessible and understandable to those involved. Combining a
thoughtful approach with relevant support should ensure equality and
inclusion. The awareness and use of other theories can also help in this
process.
Communication has strong links to many other theoretical approaches.
Systems theory and the interaction of the systems a person functions within
will be affected by communication. If a person is unable to effectively com-
municate with or understand other people within a system then he or she is
likely to become marginalized or excluded (see Chapter 9). Some aspects of
behavioural work rely upon the interpretation of what a person
communicates. The decision to undertake behavioural change may be con-

sidered in light of the information gained through discussion or observation
of an individual. If the communication has been one-sided or the person’s
views misunderstood then the use of behavioural approaches may be ques-
tioned (see Chapter 8). In considering people’s roles and role theory, if indi-
viduals are perceived as unable to communicate in the same way as the
majority then their role in society may be affected. Subsequently, a person
may be excluded from particular social or working roles and thus be denied
access to some areas of society (see Chapter 9).
We will now explore aspects of communication through the following
two case studies.
CASE STUDY ONE

Kim had attended residential school from the age of 11 years. The school
used BSL in conjunction with speech to create a signing environment.
Having finished school Kim attended college for a further year. She then
chose to attend a day centre for three days per week and additional training
sessions with the disability employment adviser. Kim hoped to gain paid
employment.
Kim found the transition to the day centre somewhat difficult. Only one
other person from her college was joining her in the move. Kim found it hard
to integrate with the established groups. She also found communication
frustrating as some people did not readily understand her speech and few
people within the day centre used BSL. Day service staff had also noticed her
isolation and had looked at ways of including her more. These issues were
discussed at Kim’s six week review.
Identifying the communication difficulties experienced by Kim was im-
portant. The environment that Kim had moved into was not one that readily
used BSL; the impact on her was profound. The six week review enabled
joint discussion of how the situation could be improved. Kim’s base group
within the day centre was changed to one where the staff member had level
one BSL and was keen to undertake level two. Joint signing better enabled
Kim’s inclusion and encouraged issues of importance to her to be discussed.
Kim also joined a group facilitated by a staff member and speech therapist as
part of a multi-disciplinary approach. The group focused on the personal
interests of members and enhanced communication. The speech therapist
was also able to identify some individual speech work with Kim.
With Kim’s consent, her base group worker contacted both her previous
college and school to gain ideas of improving communication. It was evident
that in the wider systems of education and social services that similar meth-
ods were not being used. It was disabling to Kim to have come from a sign-
ing environment to one which was not predominantly signing and this
caused frustration. The lack of conformity between services needed to be ad-
dressed, to look at continuity for those moving from one service to another
and at removing barriers to communication.
CASE STUDY TWO

Yasmin was behaving in a way that challenged people in the day centre she
attended and this was unusual for her. Yasmin had very little speech but
could communicate in several ways. She could make sounds indicating
pleasure and displeasure and was able to indicate preferences by using her
own pictorial book, photographs and by pointing to people or objects. A
day centre staff member tried to talk to Yasmin to establish what was upset-
ting her but was unable to find out. She then discussed the situation with
Yasmin’s parents. They too had been experiencing difficulties with Yasmin
and she had hit her mother on two recent occasions. Yasmin’s parents said
they would like some help as they did not know what else to try. Yasmin was
referred to her community learning disabilities team for support.
The worker took time to assess the situation and consider the systems
surrounding Yasmin. He spent time with Yasmin, her parents and day centre
staff. He visited Yasmin both at home and at the day centre to see if there
were any obvious clues to the situation. He spent time looking at Yasmin’s
photographs with her and realized she was indicating one particular photo-
graph showing her sitting in a garden. He then investigated this further and
discovered that this photograph showed Yasmin at the children’s respite unit
that she no longer attended. Further discussion with her parents and staff in-
dicated that Yasmin’s changed behaviour had started fairly soon after this re-
spite care had ended and her new respite care had begun.
Yasmin could not speak her unhappiness at no longer attending a favourite
respite unit or the loss of her friends there. She communicated her un-
happiness through her actions both at home and in the day centre. This was
recognized through careful work with her. The worker particularly spent
time in getting to know Yasmin, building a relationship and communicating
with her. He also took the time to talk to everyone else involved.
Through this process of building a relationship and better understand-

ing, working in a holistic way and not focusing solely on the aspect of be-
haviour, the worker was able to identify the cause of Yasmin’s distress. He
was then able to work out a plan with Yasmin and her parents to try some dif-
ferent options for respite until she found an alternative that suited her.
Yasmin’s non-verbal communication had been powerful in effecting change.
CONCLUSION
There are two concepts that we would like to look at as a conclusion to
communication: these are the dissemination of information and the way to
move communication forward.
Disseminating information
Some of the intricacies of communication and ways of enhancing it have
been highlighted. These can then be taken a step further. Organizations,
whether social, medical or educational, need to provide information about
their services. This needs to be quality information. There is no point writing
pages of service specification if it cannot be read and understood by the
people for whom it has been written. The information needs to be in
accessible formats. These may include video with signing, audio, large print,
picture and word and picture format. It needs to explain the function of the
agency or service and what can be provided. The information should not use
jargon or be written in a way that prevents it being understood. What we are
suggesting is that real meanings are not obscured by the latest vogue
terminology. Information should be presented in a clear format that avoids
the chance of misunderstanding.
Health and social care agencies need to develop effective channels to en-
hance communication. Collaboration and working towards a joint goal of
easily accessible information is important. The involvement of people with
learning disabilities in developing this process is of paramount importance.
They are the experts in understanding their communication needs. Commu-
nication and its importance in social care practice can be studied in more
depth through the work of, for example, Banks (1995), Coulshed and Orme
(1998), Nelsen (1980,1986), Payne (1997) and Trevithick (2000).
The way forward?

The prioritizing of information as being accessible and understandable for as
many people as possible, independent of someone else supporting them,
promotes equality and the opportunity of making informed choices. The use
of people independent of social and medical care services can be important
in providing objectivity. Advocacy has increased dramatically over the past

few years and its value and importance are acknowledged within the
learning disabilities field. At times, someone independent of the services
being provided can get to know the person in more depth and in a different
way than service providers. With the advocate’s involvement within the
assessment process the person can often be supported in a way that enables
better representation to be made. In Chapter 6 we explore advocacy in a
wider context.
Understanding the many different forms of communication will ulti-
mately be empowering for people with learning disabilities. This in turn will
help to challenge the oppression and discrimination that can be faced in day
to day living and lead to non-tokenistic inclusion and equality.
Key points
• Communication takes many different forms and is not solely
about verbal communication used by the majority of people
within society.
• Learning to communicate is part of developmental learning. If
the developmental process is restricted then communication may
be affected; however, this does not mean that a person is unable
to communicate.
• An awareness of the barriers that might restrict successful
communication is critical.
• Within the learning disabilities field there are many recognized
methods developed to enable communication; these include:
signing, picture format and computer programs.
• There are a variety of people trained to help others to increase
communication skills, and their specialist knowledge and
training can be invaluable.
• Listening is a critically important part of communicating; if what
is said by a person is not actively listened to, then the
communication taking place holds little value.
• There are a variety of specific theories that can provide insight
and help inform this area of study.
• Working closely with a person, by getting to know the
individual and how he or she communicates, is a key factor to
success.
6
Advocacy, Empowerment,
Participation and Choice
INTRODUCTION
In this chapter we will initially introduce and then explore the concept of
advocacy, highlighting the various ways that it can be used. The link
between advocacy and empowerment will be made and consideration will
be given to how both can be used as practical methods of helping and
supporting someone with learning disabilities. These methods may include
empowering the person, supporting participation and providing the oppor-
tunity to make informed choices – thus enabling more control of his or her
life. The ultimate aim of the approach is to make sure that the voices of
people with learning disabilities are really heard and not just acknowledged
as a tokenistic gesture.
The development and practical application of advocacy and empower-
ment will be considered and the barriers that are often faced explored. The
links as to how advocacy and empowerment can play an important part in
many theoretical approaches will be made. Two case studies showing advo-
cacy and empowerment enabling participation and choice will reinforce the
use in practice.
WHAT IS ADVOCACY?
One definition of advocacy is: ‘the representation of service users’ interests
in order to improve their situation’ (Thomas and Pierson 1996, p.11). It is
important to note that the representation can come from many different
perspectives. Before exploring the different forms that representation can
take, we wish to consider the development of advocacy. There is a difference
between ‘independent advocacy’ and of people advocating within the remit
and guidelines of their jobs and working to their codes of practice. Payne
99
(1997) suggests that ‘advocacy’ has particular links in its origin to the legal
profession. Solicitors and lawyers take on the role of being an advocate for
the clients that they are representing. Payne also identifies the advocacy role
as intrinsic to some professional codes. ‘For example, UK professional codes
enjoin nurses to undertake advocacy in the sense of raising problems in the
resourcing or management of services which might lead to detriment to
their patients’ (Payne 1997, p.267). In these examples the power can be seen
as very one-sided and mainly held by the person with the skills and abilities
to deal with the relevant information. A lawyer has the professional training
and has the knowledge to guide the client through the legal process. An
understanding of the law, court procedures and legal expectations all play a
part in that particular advocacy role. A nurse may personally see aspects of
care that are not meeting the patient’s needs. The concerns raised could then
be taken by the nurse to identify the need to management. In each example
the decision to represent the person predominantly lies with the
professional, although patients and carers may make their own
representations. This type of representation is being undertaken as part of
the person’s job and role and is not advocacy in the true context of
‘independent advocacy’ support.
In the 1980s much of the focus for advocacy was directed upon promot-
ing the ability and increasing the quality of care and life for people in the
fields of mental health and learning disabilities. There was an increase in
awareness of advocacy and its uses as it became more widespread. This was
linked to the changing views concerning long-term institutionalized care.
With the increase in understanding of human rights and society’s greater
awareness of hospital based institutional care, the style and remit of care pro-
vision was challenged. The proposed introduction of community care and
the move away from institutions reinforced the importance of people having
their views and wishes heard. The advocacy development work undertaken
in the field of mental health played a part in informing and supporting advo-
cacy in the field of learning disabilities. The difference between mental
health and learning disabilities must not be confused as they are, of course,
each very different.
In the UK the United Kingdom Advocacy Network (UKAN) was formed
by mental health service users as a way of supporting others with mental
health needs. One of the ways of achieving this was by providing advocacy
support. The Mental Health Task Force worked with and listened to people
who were using mental health services. The aim was to understand what
worked well for service users and what was less successful for them. This was
seen as a major step in being able to develop services that met the individual’s
ADVOCACY, EMPOWERMENT, PARTICIPATION AND CHOICE 101
needs. To achieve this in more depth a user group representative organi-

zation was set up to carry out in-depth research: the Task Force User Group.
This group commissioned UKAN to draw up a code of practice for
advocacy.
The code of practice was drawn up following ten regional conferences in
which service users took the opportunity to speak out with their views and
thoughts. This identified four key areas to be considered:
• to inform and involve user groups
• to enable managers to understand the qualities that meaningful,
independent, user-run empowerment and advocacy projects might
be expected to establish and maintain
• to clarify the roles and functions of groups, advocacy and advocacy
workers, in order to extend and strengthen advocacy
• to be used as a nationally recognized and approved basis for user
training of both staff and users.
(King in Conlan et al. 1994, p.1)
The advocacy code was subsequently adopted by UKAN in 1994 and used
in their advocacy handbook (Conlan et al. 1994). The work undertaken by
UKAN and others played a key role in informing other areas of service
provision of the development of advocacy services. In summarizing the
variety of ideas and views of advocacy, it appears that the main focus is
representing the interests, needs and wishes of people who may be perceived
as powerless in society. Their interests, needs and wishes are represented to
those who hold power and who control how care, support and social
inclusion are structured in society. The development of advocacy in the
learning disabilities field can be studied in greater depth through the work
of Gray and Jackson (2001).
The definition given earlier by Thomas and Pierson (1996) suggests that
advocacy relates to the representation of people. This definition needs to be
expanded upon as representation can come from a variety of perspectives:
family, friends, partner, key worker, social worker, nurse, doctor – the list
could go on. Very importantly, the list should also include self-repre-
sentation; it is critical to acknowledge that self-advocacy is a realistic con-
cept for many people with learning disabilities. People can be empowered to
be able to speak up for themselves. With the many different people that can
take on the role of representation there is, of course, the risk of conflicts of
interest and of personal agendas. This will be discussed later in the chapter.
Representation and advocacy work hand in hand with empowerment,

which we will now briefly explore. This will be followed by a look at some
of the different forms that advocacy and empowerment can take.
EMPOWERMENT
Empowerment is defined as: ‘…concerned with how people may gain
collective control over their lives, so as to achieve their interests as a group,
and a method by which social workers [and other care providers] seek to
enhance the power of people who lack it’ (Thomas and Pierson 1996,
p.134). Payne’s explanation also includes the issue of power and its part
within empowerment: ‘Empowerment seeks to help clients gain power of
decision and action over their own lives by reducing the effect of social or
personal blocks to exercising power and by transferring power from the
environment to clients’ (1997, p.266).
Empowerment has direct links with methods of working that aim to
achieve equality for minority or other oppressed groups. In the 1970s a radi-
cal social work approach was proposed as a method of challenging the op-
pression faced by some groups in society. With a greater awareness of the
needs and interests of minority groups then equality could be worked to-
wards. Empowerment as a theory provides a framework that supports an un-
derstanding of the discrimination, oppression and devaluation faced by
some minority groups. These groups could include people with learning dis-
abilities and people with issues of mental health.
Feminist and anti-racist perspectives can be used to explain the princi-
ples of empowerment in practice. An understanding of the issues of power –
who holds power and how it is used – is key to the success of empowerment.
Without first identifying where the power lies, the ability to enable others to
take power is bound to be unsuccessful. Without power people may not be
able to make their needs and wishes heard. The decisions about what to do,
when to do it and how to do it remain with others.
Without empowerment a person may remain helpless. Learned helpless-
ness was a process suggested by Seligman (1975), who carried out research
on how animals and humans learn. Further ideas about learned helplessness
have been developed by Barber (1986), who considered it in the context of
social care. Payne provides an explanation of how learned helplessness may
occur:
If people have important experiences which show that what they do

does not affect what happens to them, they form the expectation that
their actions will generally not produce any useful results. Their capac-
ity to learn useful behaviour in other situations becomes impaired. Peo-
ple may lose motivation, become anxious and depressed and poor at
thinking and learning. (Payne 1997, pp.283–284)
If people are rendered powerless at making decisions and over what happens
in their lives, then they may go through a process of learned helplessness.
This will have a major impact on their lives. Barber (1986) suggests that
people who have gone through this process need to be able to experience
being in control and achieving successful positive outcomes for their lives.
Barber referred to this process as ‘environmental enrichment’. We suggest
that enrichment can, in part, be achieved through the process of
empowerment.
One example of gaining enrichment can be explored through the work
of Ahmed. Ahmed (1990) suggests that service users should be supported on
a one to one basis, or through groups facing similar oppression within soci-
ety. The aim is to empower the person or group, to enable them to take
greater control of their lives. The need to sometimes use advocacy that will
support and empower oppressed groups within society was suggested by
Ntebe (1994) as an important part of a radical model of support and care
practice. The link between advocacy and empowerment is reinforced as a key
factor in achieving participation and choice.
We will now explore some ways that advocacy support can be provided
and how the idea of empowerment should be intrinsic to these approaches.
DIFFERENT TYPES OF ADVOCACY

There are various ways that advocacy support can be provided and people
enabled. Many of the styles that are mentioned in this text are not
predominantly thought to be related to the learning disabilities field. By
introducing and briefly explaining some of the advocacy styles, the aim is to
raise an awareness of the diversity of advocacy and empowerment in
practice. The different types of advocacy are not in any specific order as each
holds its own importance and relevance in different situations.
Citizen advocacy was first developed in the 1960s in North America
(Wolfensberger 1977). Citizen advocacy focuses on people who have a keen
interest in helping and supporting people who perhaps do not have family or
friends. The aim of citizen advocacy is to enable people to be represented so
that they are not socially excluded and so that their needs and wishes are
heard. The support is provided predominantly in a voluntary capacity to
give independent, objective support. There are many voluntary advocacy
agencies that advertise for volunteers, carry out checks on potential advo-
cates, train them and supervise their supporting role.
A valued citizen who is unpaid and independent of human services so-
cial workers creates a relationship with a person who is at risk of social
exclusion and chooses one of several of many ways to understand, re-
spond to and represent that person’s interests as if they were the advo-
cate’s own. (O’Brien 1987b, p.3)
In the 1970s the approach was introduced in the UK and started to be used
more within the changing role of social care and support for people with
learning disabilities. The need for ‘professional’ advocacy services continued
to become more apparent (Croft and Beresford 1990). The term
‘professional’ was used in the context of an independent service that had
training, standards, a code of conduct and an operational framework. It did
not mean an employed professional such as a nurse or social worker, as these
would not be independent due to the nature of their work. The need for
advocacy to be underpinned by principles that genuinely value the person
and do not compromise the role are, of course, critical. There are many
different types of advocacy support that have developed from the initial idea
of citizen advocacy. Recognizing that clear principles guide quality
advocacy and empowerment is important. We will go on to examine some of
the various forms that advocacy support can take.
One to one advocacy (as citizen advocacy is now frequently referred to)
is often used with people who have limited verbal ability and are more reliant
on others to voice their views, needs and wishes. A longer term advocacy
partnership may be set up so that someone independent can get to know the
person requiring support. The time spent by the independent advocate with
the person being supported and with others who have influence in that per-
son’s life may highlight specific issues that need addressing. As the advocate,
it is hoped, gains a good working relationship and understanding of the per-
son’s needs, he or she is better able to put forward views developed from the
working knowledge. This enables the person’s voice to be heard, albeit
through a third party. The individual need for an advocate can be varied and
one to one support can occur in many situations. It may take place when
someone is moving from hospital care to another style of living, trying for
employment or lacks family support.
Group advocacy is sometimes known as collective advocacy or ‘class ad-

vocacy’ (Wolfensberger 1977). The principles of group advocacy lie in a
group of people working together for a similar cause. These groups may be
international, national, regional, local or within small community settings.
Trade unions are one example of a group of people that campaign and, if re-
quired, legally represent their members. An example of a group voice within
the learning disabilities field is Mencap. Many other organizations support
specific groups. They campaign, represent and fight for the rights of people
associated with particular forms of learning disabilities. These groups also
highlight issues for people with learning disabilities in general and bring
them to the attention of the public. There are many different forms of advo-
cacy groups, both large and small, and the principles of people’s rights are
intrinsic throughout.
With the development of many housing association supported living
projects, supported living advocacy groups have emerged. More people with
learning disabilities are able to take on their own tenancy in housing projects
designed and developed to meet specific need. There is a need for people to
be able to voice their opinions. Advocacy groups provide the opportunity for
people to compare the success of supported living and to jointly challenge
any areas that are causing concern. This is a valuable way of developing and
monitoring the projects by the people who actually use them.
Community advocacy groups are also being set up; predominantly they
are for people with learning disabilities who live within the community.
They are for people who may live with their parents, families or carers, have
their own housing tenancies or live in their own homes. Community advo-
cacy groups provide a forum for people to meet and discuss issues that may
affect day to day living and draw together a voice to challenge discrimina-
tion and oppression faced. Sometimes these groups are facilitated by an in-
dependent person, at other times they may be run by the members of the
group. Whatever format is used, community advocacy groups provide an im-
portant facility to support community living.
Of course, not all people with learning disabilities live within supported
living or hold their own tenancies. Many people live in residential units run
either by social services, health, private or voluntary agencies. Advocacy sup-
port is available to many people in their residential units. Home visiting ad-
vocacy focuses on an independent facilitator visiting perhaps once or twice a
month and supporting the residents in discussing issues and seeking change.
The day to day running and service development of the residential unit can
be informed, guided and to an extent directed by those who are using the
services. A similar process occurs in many of the day centres that operate for
people with learning disabilities. These are sometimes referred to as user

forums. Whatever the name used the process is clearly about empowerment,
participation, inclusion and choice.
Self-advocacy groups can be found in any of the above examples of
advocacy work. A self-advocacy group may be facilitated by an independent
support worker working in a voluntary or paid capacity. The important
factor is the independence of the support worker from the other services in-
volved. Some self-advocacy groups focus on the people belonging to the
group running it themselves without independent support. The organiza-
tion People First has played an important part in the development of self-
advocacy. Self-advocacy is also something a person can undertake without
being part of a group. Self-advocacy involves more than just communication;
it is about trying to achieve change. Self-advocacy involves more than just
having choice; it is about having real choice. Real choice can only be made if
it is based on having all the relevant facts to enable informed choice. Choice
also involves individual responsibility and the recognition that choices have
an impact on the individual and others. Self-advocacy is about balancing in-
dividual rights and responsibilities in achieving choice and change.
Other forms of individual advocacy may at times be required. If a person
wants to deal with personal issues, family issues or make a complaint then a
group setting may be an inappropriate place to do so. If the person is unable
to self-advocate then an advocacy support system may be required. Should
such issues cause distress for the individual then some form of crisis support
may be required.
Crisis advocacy is often provided after a request is made for independent
support following some form of crisis. This may result from many different
situations and predominantly focuses on people’s need for support, informa-
tion and care during a time when they may feel they have little control over
their lives. Crisis advocacy may be required following bereavement, eviction,
arrest or change in health. These very different factors each present a partic-
ular time of difficulty for the individuals concerned. If specific issues relate
to legal factors then legal advocacy may be required. Macmillan (1937) sug-
gested that it is the legal advocate’s job to present information to the relevant
people in a way that the person him or herself would have done if he or she
possessed the skills and knowledge to do so. This would still seem to hold
true today. Of course, people do not only need support during times of crisis;
support may be an important part of managing day to day living.
There are other types of advocacy services and support systems available
in a variety of settings and we cannot cover them all. What we have tried to
do is to show how advocacy is present and used in the care and support of
people with learning disabilities. Advocacy plays a key part in empower-

ment and subsequent participation and choice. We will now explore its use
as a practical method of working.
ADVOCACY AND EMPOWERMENT AS A PRACTICAL METHOD

Bateman (2000, pp.47–61) highlights the importance of principled advo-
cacy; these principles are:
1. Always act in the client’s best interests.
2. Always act in accordance with the client’s wishes and instructions.
3. Keep the client properly informed.
4. Carry out instructions with diligence and competence.
5. Act impartially and offer frank, independent advice.
6. The advocate should maintain rules of confidentiality.
These principles can be seen as fundamental when using advocacy in
practice. Without a clear framework from which to inform practice, negative,
oppressive or discriminatory support could occur. It would be unrealistic to
expect advocates to be so well informed that they could undertake any
element of support on their own. Advocacy is also about joint working,
taking into consideration confidentiality and being able to find the expert
knowledge required to inform any given situation. ‘Advocates…need to
recognize when outside help is required and to know the limits of their
expertise’ (Bateman 2000, p.56). An inclusive approach working with the
person requiring the advocate and with other people that can provide the
knowledge in meeting need is crucial. An inclusive approach is a way of
enhancing participation. Croft and Beresford (1994) reinforce the view that
people have the right to be involved in the decision making process that
affects their lives. An involvement in this process is fundamental to the ethics
of good social and health care practice. The principles of Croft and
Beresford’s (1994) participatory practice are reinforced through four
elements:
• empowerment
• control
• equipping people with personal resources
• organizing the agency to be open.
Empowerment focuses on being able to take charge of the decision making

process that affects an individual’s life and to challenge oppression. Control
is gained through identifying and deciding upon individual need which, it is
hoped, leads to the planning of needs-led care packages and resources. The
ability to take power and develop confidence, self-esteem, self-worth,
knowledge and skills, is a key principle of advocacy, empowerment, partici-
pation and choice. Advocacy and empowerment are not just about the
individual and should be considered within the wider society. Social and
political rights that are not being met, and are identified by people that are
oppressed and discriminated against within society, should be acknow-
ledged and play a key part in the development of care and support services
(Oliver 1996).
Having explored the principles of advocacy and empowerment and their
use and benefit as a practical method of working, we would now like to place
these in practice. This will be done by looking at how advocacy can be used
as part of practice within the learning disabilities field.
ADVOCACY IN PRACTICE
An advocate is someone who is independent of services and free from any
conflict of interest, someone not in the paid employment of statutory social
or health services. Often these are voluntary advocacy organizations or those
that are independent but receive joint funding from social and health care
services. The funding should not create conflict of interests as the organi-
zation’s voluntary state supports its independence.
An independent advocate allocated to work with a partner should be
able to offer impartial support. The first loyalty of the advocate should be to
his or her partner, not to a group, relatives, carers or the people who provide
services. However, a joint working strategy is not ignored and plays an im-
portant part in the secondary role of the advocate. The advocate should
check that the person really wants to receive advocacy support. If communi-
cation issues make consent difficult then the advocate would need to work
with the wider systems around the person as a way of reinforcing the appro-
priateness of the advocate’s role.
If the advocacy partnership begins and communication issues make ad-
vocacy difficult, the advocate may ask questions on behalf of the person and
make sure that the person’s rights are safeguarded. As the partnership devel-
ops the understanding of the advocate about what his or her partner wants
should become clearer. This then, it is hoped, leads to the partner being able
to gain more independence and their voice in stating their needs and wishes.
We suggest advocates should strive to enable their partners to:
• communicate what they want to say
• make decisions for themselves
• play an active role in their own lives
• have choices
• obtain their rights
• be able to express feelings and thoughts.
The purpose is to value the individual for the person he or she is, widen the
individual’s experience and promote participation and choice. Advocates
should support their partners to speak up and to do things for themselves
wherever possible. If this is not possible the advocate should ensure that his
or her partner agrees to the advocate speaking or acting on his or her behalf.
The key tasks of advocacy support are:
• to make sure a person is supported in speaking up
• to make certain the person’s voice is heard
• to make sure that the person knows his or her rights in order to
work towards gaining entitlements
• to remove barriers that restrict a person being able to move
forward in life
• to make sure that the person receives the services that he or she
needs.
Any of the above actions could be provided through the different styles that
advocacy support takes: self, group and one to one/citizen advocacy. Each
style can provide invaluable support in meeting people’s needs, helping them
gain control over their lives, in participating and making informed choices
on aspects of day to day living.
We will now look at some of the difficulties, potential barriers and
restrictions that can occur when using advocacy and empowerment in
practice. By doing so we hope to provide an understanding of how people
being supported can receive the maximum opportunity to participate, be
involved and take control of their lives.
BARRIERS AGAINST ADVOCACY, EMPOWERMENT,

PARTICIPATION AND SUPPORT
Advocacy is not an infallible system; the lack of advocacy facilities and the
weakness of legislation are not particularly supportive in the overall picture
of advocacy and empowerment. In this section we will consider some of the
possible conflicts and difficulties involved in advocacy support.
If a person is in the role of social worker, nurse or support provider, he or
she is not independent and therefore not in a position to provide independ-
ent advocacy support. However, the occasion may arise that an independent
advocacy service or individual support is not available and a position of con-
flict could then occur. If a service user asks a residential worker or nurse to
provide support in making a complaint about the residential home lived in,
then he or she would be obliged to do so as part of the duty of care. Realis-
tically, without the independence that an advocate brings, a role conflict may
occur for the worker which could make it difficult to fully support the indi-
vidual concerned. There may be other situations where role conflict could
occur for the worker providing support and this could affect issues such as
relationships, independent living and cultural and religious choice. Policies
and procedures may also restrict the flexibility of approach. This could be
specifically relevant when considering risk assessments. The rights of an in-
dividual to undertake an informed risk might conflict with the organization
being concerned about being held responsible if something goes wrong. In
any of these situations the benefit of an advocate who is independent of the
service provider can be seen.
The issue of independence is taken a step further when considering
self-advocacy groups. Members of self-advocacy groups may be people with
a mild to moderate learning disability who can articulate well for themselves.
If some of the group have more restricted abilities and are less able to articu-
late their wishes, then a power imbalance may come into force. The same ar-
gument could, of course, be made about independent people supporting
groups. The structure and membership of each group needs to be considered
when thinking about the success of advocacy work.
Legislation acknowledges advocacy and empowerment. However, it is
not particularly supportive of it in practice. Kemshall and Littlechild (2000)
discuss the principles of involvement being an integral part of the core
mandate for social services. Alas, legislation is not forthcoming in putting
the acknowledged requirements into practice as a legal duty. Government
guidelines regarding care management and assessment clearly state that
service users should have independent advocacy support available to them.
However, the reality is that advocacy remains a limited resource (Simons

1993). Sections 1 and 2 of the Disabled Persons (Services Consultation and
Representation) Act 1986 set out the rights of authorized representatives of
disabled people. This sounds very positive and supportive of the principles
of advocacy. Unfortunately, these sections have never been implemented.
Other examples that illustrate the weakness of current legislation can be
found (Kemshall and Littlechild 2000). The legislative weakness does not
provide a satisfactory reason to stop challenging discrimination and oppres-
sion through advocacy and empowerment. There is a need to provide advo-
cacy support for people from many different groups; these may include racial
and cultural groups, those of different ages and abilities. People have the
right to have their voice heard and an independent person to provide rele-
vant support. Although lack of resources and funding may limit the setting
up and development of independent advocacy services, the need for advo-
cacy should continue to be highlighted. Through the need being demon-
strated, additional funding can be argued for and secured.
GUIDING PRINCIPLES
Throughout this chapter we have talked about how advocacy can be used,
the importance of empowerment and the fundamental right of people with
learning disabilities to participation and choice. Advocacy and empower-
ment can have a direct involvement with many theories and approaches
discussed in this book. We will briefly explore how advocacy and empower-
ment can be considered in the context of three theories covered in other
chapters.
If communication took place and a person was unable, for whatever
reason, to be involved in the discussion or in negotiating choice then disem-
powerment would occur. Finding the most appropriate and least restrictive
way of communicating with a person is a form of empowerment (Chapter 5).
Sometimes people are unable to communicate in the same way as the major-
ity and extra time and support may be required. Individuals may need some-
one to advocate for them and help their voices be heard or arrange
appropriate support networks to be set up. This type of involvement can
promote the right of participation and choice.
When using a task centred approach (Chapter 9), the need to empower
people so they are able to take a measure of control over the tasks they want
to undertake is critical. Task centred work focuses on participation and the
need for individuals to make choices about how they intend to approach a
situation. If individuals face difficulties in considering the tasks ahead then
an advocate or advocacy support may play a key part in helping them move
forward.
If a person is facing concerns or anxieties over his or her role (Chapter
9), then advocacy based support can sometimes be useful. For example, if a
person is facing conflict within the family setting concerning attending col-
lege, an independent person could work with the individual to help explore
how the situation could be moved forward. The advocacy role could help
empower a person to make choices.
We are not suggesting that advocacy is an infallible way of ensuring that
empowerment, participation and choice happen. We are, however, suggest-
ing that advocacy and empowerment can play an important part when con-
sidering ways of supporting people with learning disabilities in their day to
day lives.
We will now put advocacy, empowerment, participation and choice into
practice using two case studies. The case studies will demonstrate the use of
advocacy concerning a tenancy and one involving day to day care. Our aim
is to demonstrate the diversity of situations that advocacy can support.
CASE STUDY ONE

Rita had lived all her life with her sister and mother. Their family home was
owned by the local council. Rita had an independent life, being employed
and having friends and a social life. She belonged to a local community
advocacy group for people with learning disabilities.
When Rita’s mother died her sister, Angela, then held the tenancy for
their house. Rita wished to have her name put on as joint tenant but her sister
said the council would not do this. Rita took this problem to her community
advocacy group where it was discussed. Some group members held joint ten-
ancies with the local council and explained to Rita this was an option. The
group thought about why Angela had said it was not possible. Some thought
Angela might want the house for herself. They felt the best thing for Rita to
do was discuss the subject of a joint tenancy again with Angela now she
knew it was possible. One group member offered to support Rita in doing
this and she accepted the support.
Angela was surprised when the subject of a joint tenancy was raised for a
second time by Rita and her friend. Angela explained she had said it was not
possible as she did not want Rita to worry about being liable for payment of
rent. Once Angela realized that Rita understood about a joint tenancy, she
suggested they go to see a housing officer together.
By having a forum in the community advocacy group, Rita was able to voice
her concerns about her rights to tenancy and gained relevant information
which she then used in discussion with her sister. Participation in the group
enabled Rita to test out her ideas and gain support, knowledge and insight
from others. Rita was then herself able to raise the issue with Angela for
further discussion. Rita was able to make an informed choice about wishing
to take on a joint tenancy and with it the responsibilities it involved. Whilst
Angela had believed she was acting in Rita’s best interest she had actually
been denying her the opportunity to choose and participate. What Rita
demonstrated, using the support and empowerment of her group, was that
she had a voice, understood the responsibility of her choice and that she was
the best person to know what was right for herself.
CASE STUDY TWO

Gerry was a citizen/one to one advocate for Albert, a man with learning
disabilities living in a home for older people. They had built up a partnership
since just prior to Albert’s move from the hospital he had lived in for many
years. Albert enjoyed Gerry’s support and visits, particularly as he had no
remaining family.
During one of Gerry’s regular visits he checked with Albert to see if it
was all right to talk with staff to see how things were going and Albert
agreed to this. The staff described Albert as having been difficult and of hav-
ing had two moments of anger in the afternoons. Gerry discussed the recent
events with Albert. Albert said he was fed up because he was trying to follow
the sport on the television in the lounge and every afternoon this was inter-
rupted by an activity. Gerry asked Albert why he did not watch the sport on
the television in his room. Albert explained that if he was not in the lounge
then he did not get a cup of tea.
Gerry then went back to the staff to discuss the issue. He thought Al-
bert’s ‘outbursts’ were understandable given the situation. He negotiated
that Albert could have afternoon tea served in his room so that he could
watch the sport in peace and quiet.
Gerry represented Albert’s wishes and supported him to gain his rights.
Gerry questioned the institutionalized rules of the home and promoted
flexibility to meet Albert’s wishes. Gerry also advocated on Albert’s behalf,
pointing out that Albert’s behaviour had been the product of an inflexible
system and he thought this unfair.
Through building up a relationship over time and by networking with

people in Albert’s social systems, Gerry had built up knowledge and under-
standing. Gerry’s representation enabled insight into a problem that was
caused by the system and enabled the problem to be resolved in a satisfactory
manner for Albert.
CONCLUSION
The right to be able to take control and make informed decisions about day
to day living and other aspects that affect the life of a person should be
fundamental. Decisions can be small or large and cover mundane issues such
as what to eat or wear, through to life changing decisions about relationships
or style of living. These decisions are taken for granted by the majority of the
population but such choices are not always available to people with learning
disabilities. The barriers that restrict integration should always be chall-
enged, as anti-oppressive and anti-discriminatory attitudes are critical in the
ongoing battle for inclusion and equality.
Thompson (1997) provides a powerful explanation of the use of em-
powerment to promote and achieve greater equality within society:
Perhaps the central concept in the development of anti-disablist prac-
tice is that of empowerment. Traditional approaches to disabilities [in the
context of this book, learning disabilities] continue to disempower peo-
ple…to deprive them of aspects of control over their own lives. They
are disenfranchised by marginalization, isolation and dehumanization
at a personal level through prejudice and misdirected pity; at a cultural
level through negative stereotypes and values; and at a structural level
through a society dominated by capitalist notions of ‘survival of the fit-
test’ and charity for those who are ‘handicapped’ from competing. Em-
powerment amounts to working alongside disabled people to help
overcome and challenge the oppression they experience. (Thompson
1997, p.130)
Thompson goes on to suggest that this is achievable through the use of
person centred work, by developing the confidence of the individual and
through the use of advocacy to help promote and reinforce the right to
inclusion and equality within society.
In this chapter we have discussed how advocacy and empowerment can
help to support and promote participation, choice and inclusion. The role of
advocacy and the different ways it can provide support has been high-
lighted. One important aspect to consider is that whilst a person is being
supported the supporter still holds the majority of power, due to the nature
of the relationship. We believe that self-advocacy and self-empowerment
are the ultimate goals as, when achieved, people have greater control over
their lives:
…advocacy and empowerment represent an ideology of treatment
which is radically different, or at least is experienced differently by cli-
ent and, perhaps, worker. However, power given by a worker leaves the
power with the worker. Clients must take power, and it is the role of so-
cial work to organise the institutional response which makes this possi-
ble and accepts it when it occurs. (Payne 1997, p.284)
Key points
• Advocacy can be used as a way of enabling people to speak up
for themselves. This can be achieved through spending time
getting to know people’s views, by supporting them to speak up
and by representing them.
• Advocacy support can take many different forms, e.g. citizen,
group, community, individual and crisis.
• Empowerment focuses on people taking control and being able
to make decisions about things that they want to do and factors
that affect their lives.
• Participation focuses on the rights of people to be fully involved
in their lives, both in decision making and doing. It is about not
being excluded from everyday issues or places due to level of
ability.
• Choice should be a fundamental right for everyone and not
restricted by society’s barriers and attitudes.
• Advocacy, empowerment, participation and choice are not
infallible. Legislation, society’s structures, attitudes, prejudices
and ignorance can all hinder the process of people with learning
disabilities being fully accepted.
• An ongoing commitment to enable people with learning
disabilities is fundamental to all aspects of care and support
work.
An awareness of the position of power and the need to work towards

maximizing the person’s own skills should be ongoing. It is important to
re-examine the way we think about, talk about and treat people and to
identify ways to enable all people to ‘speak’ for themselves.
7
Universal Human Experience in the Lives

of People with Learning Disabilities
INTRODUCTION
Whilst this book predominantly explores the application of theory to
practice when working with people with learning disabilities, the theories
discussed are not always designed specifically for working with this client
group. In this chapter we are going to consider two universal human
experiences not always readily associated with people with learning dis-
abilities: sexuality, and loss and bereavement. Each individual’s sexuality is
an intrinsic and defining aspect of the person. Loss and bereavement are
faced by each person at some point in life. The way that sexuality and loss
and bereavement are understood and approached may vary greatly from
person to person. In this chapter we intend to highlight the importance of
supporting and enabling people with learning disabilities to be as fully
involved as possible with their own life experiences. We aim to highlight
how theoretical knowledge and understanding of the universal human
experiences of sexuality and loss and bereavement can be used in practice
settings through the use of case studies.
SEXUALITY
INTRODUCTION
A person’s sexuality needs to be recognized and accepted as an integral part
of the complex characteristics of human existence. However, within the
learning disabilities field this does not always appear to be the case.
Literature can be found that provides information about sexuality and
learning disabilities, but this often seems to focus on disability and sexuality
from the perspective of it being a problem. We will endeavour to explore this
117
perspective and also look at other implications for practice when working
with people with learning disabilities.
We will start to explore the links between sexuality and gender and the
influence of historic and current social pressures. We will look at the rights of
people to their own sexuality, sexual relationships and sexual health. We will
also examine some of the restrictions, safety structures and aspects of protec-
tion created by policies and legislation. By doing this we aim to enhance un-
derstanding of some of the complexities in working with issues of sexuality.
A BRIEF HISTORICAL PERSPECTIVE

In recent years many Government policies, initiatives and legislative changes
have, to an extent, challenged the way support and care are provided for
people with learning disabilities (see Chapters 1 and 10). The current
community based philosophy of care has moved away from the institu-
tionalized care synonymous with the large hospitals established around the
beginning of the 1900s. We will briefly explore the impact of living in these
hospitals upon the freedom, dignity and sexuality of those who were
institutionalized. The Mental Deficiency Act 1913 placed a duty upon all
local authorities to certify ‘mental defectives’ and set up certified institutions.
One of the schools of thought that supported this type of care in the early
decades of the 1900s was that of the Eugenic Society. Eugenic comes from
the Greek eu meaning ‘well’ and gens meaning ‘to produce’. Eugenics referred
to the manipulation of breeding to ‘improve’ the population. By having
control over people in large institutional settings, staff could make sure that
the ‘feebleminded’ did not ‘repeat their type’, thus producing ‘a degenerative
stock’ (Barker 1983). In the 1930s the Campaign for Voluntary Sterilisation
began. The amount of sterilizations that were carried out is difficult to
identify, whether they were voluntary or compulsory even harder to est-
ablish. In 1934 the Brock Report recommended sterilization as the best way
of managing the control of birth by people who were mentally deficient. The
power held by those able to make decisions about other people’s lives can be
clearly seen.
Many accounts can be found of the segregation that was used, including
separate wards, day time separation at work and even when socializing:
UNIVERSAL HUMAN EXPERIENCE 119
You couldn’t mix with the men. You could go to a dance but you’d have
men on one side, women the other. You could dance with them, but
they had to go back, men one side, women the other side. Even in the
dance hall there were two loads of staff in the middle. (Cooper in
Atkinson, Jackson and Walmsley 1997, p.25)
This level of control and segregation is still remembered by many people
today. This includes care and support workers and the people with learning
disabilities who were placed in the hospitals and institutional settings.
Goffman looked at how the institutionalized way of life can continue when
staff and patients move on from that environment (1961). The changing
policies and legislation over the following decades and the introduction of
Community Care have led to the closure of many of the large institutional
hospitals.
The move from institutional care to community based care has not been
unproblematic. The issues of segregation, control and restrictions are still ap-
parent in some areas of care; residential units catering for men or women
only are an example of this. At times it may be argued that these are in the
best interest and safety of the people being supported. However, this can still
restrict and impinge upon the rights of individuals. This oppression has been
highlighted and challenged by the development of advocacy services (see
Chapter 6). Many advocacy groups have argued against and highlighted the
restrictions placed by the ‘establishment’ (Bateman 2000). This type of ad-
vocacy work has increased the awareness of the marginalization still faced
by people with learning disabilities. It has also raised awareness of the con-
trol that can still be exerted through the medical, social and political com-
plexities of care provision. This control continues to play a part in the issues
surrounding sexuality.
WHAT IS SEXUALITY?
Sexuality can be explained in various ways, such as: ‘Sexuality is not a simple
or uniform phenomenon: it embraces many aspects of human existence’
(Horrocks 1997, p.1). Gender, sexism and sexual discrimination can all be
seen as relevant to sexuality as well as the right to have sexual feelings and
sexual relationships. We will briefly explore gender, sexism and sexual
discrimination and then go on to look at sexual feelings and relationships in
more depth. Through this exploration we hope to provide some initial
thoughts around the subject and aid consideration of some of the complex
issues around sexuality.
Gender is described as ‘one’s sex, …classification corresponding to sex’

(Hawker and Hawkins 1996, p.130). It identifies that male and female are
different with respect to gender. Gender requires further consideration when
talking about people who are transsexual, also referred to as transgendered.
Gender also contains ‘the social and psychological characteristics attributed
to men and women’ (Thomas and Pierson 1996, p.157). The sex of someone
is identified through a biological and medical process, whereas gender is af-
fected by the wider social definition. Within society certain social expecta-
tions, often stereotypical, are placed on the male and female roles. This can
be the cause of oppression, discrimination and conflict.
Sexism includes perspectives such as inequality, oppression and discrim-
ination predominantly caused through male dominance. Weber (1947)
talked about male ‘patriarchy’ and described the dominance of men within
the family. This has been extended in later years to include the power of men
in society as a general issue. This is drawn together in the explanation given
by Bullock and Stallybrass: ‘a deep-rooted, often unconscious system of be-
liefs, attitudes and institutions in which distinctions between people’s intrin-
sic worth are made on the grounds of their sex and sexual roles’ (Bullock and
Stallybrass in Thompson 1997, p.39). Ascribed expectations may be placed
upon individuals according to gender or gender stereotyping. These expec-
tations may not be in accordance with the individual’s views or wishes.
It is important to consider how we treat gender roles in our support
work. For example, within day care, the majority of places on the working-
or gardening-type projects may be mainly taken by men. Those taking cook-
ery, health and beauty may predominantly be women. A person’s choice
must, of course, be taken into consideration; it may be an individual’s deci-
sion to participate in particular sessions. However, it would be empowering
to make sure that choices are available and that stereotyping does not occur.
The Sex Discrimination Act 1975 (Brayne and Martin 1997) was imple-
mented to try to address some of the inequalities associated with gender is-
sues: these included aspects of employment, education, housing, facilities,
goods and advertising. It is questionable whether the Act has been able to
achieve all of its aims and objectives in promoting equality between the
sexes. It has, however, given us a framework within which to address some
forms of inequality and discrimination.
It is again worthy of note that the idea of double (or multiple) discrimi-
nation may occur whilst working in the learning disabilities field. Discrimi-
nation may already be faced by people with learning disabilities and
additionally through sexism, racism, ageism and disablism. The impact of
multiple discrimination and oppression should not be overlooked; aware-

ness of these factors enables challenge of them to be made.
SEXUAL FEELINGS AND SEXUAL RELATIONSHIPS

People with learning disabilities should be accepted as people who have the
same capacity for loving as others in society. Loneliness and isolation may
occur through the lack of opportunity to have loving relationships. There is a
need to recognize the importance and complex nature of human rela-
tionships; without doing so we may ignore aspects of the whole person.
People should be allowed to have their own sexual feelings and to have
sexual relationships. This, of course, needs to be within the bounds of
legality and between consenting adults. In no way are we supporting illegal
sexual activity, such as under age or abusive sexual relationships. The issue of
consent and associated factors often cause concern to the support worker.
Some of the following questions may need to be considered:
• How do we know if these people are consenting?
• Do they both really want the relationship?
• Do they have enough information to be able to make an informed
choice?
• Is it my role to give information?
• What if pregnancy occurs?
• What if the relationship is abusive?
• How should I support a same sex relationship?
• How will parents or carers feel?
• What will other people’s perception be?
• What anxiety is there about them having a sexual relationship?
• What if it conflicts with religious or cultural beliefs?
• What are my beliefs and values and will they influence how I
provide support?
• Will it be contravening agency policies or legislation?
Strategies and safeguards need to be in place to support and protect the
individuals involved. Downs and Craft (1995, 1997) provide a framework
of strategies and ideas of how support can be provided, in particular to
people with profound and multiple impairments. Other aspects of sexuality,
such as staff training and rights and responsibilities, are addressed by, for
example, McCarthy and Thompson (1997, 2001).
When considering sexuality and sexual rights another aspect that re-
quires attention is
that under the Sexual Offences Act 1956 it is an offence for a man to
have sexual intercourse with a woman knowing her to be ‘of arrested or
incomplete development of mind, which includes severe mental impair-
ment of intelligence and social functioning’. Staff encouragement, or
merely allowing it to happen, could be deemed ‘aiding and abetting’
such an offence. Thus it may be crucial to determine the degree of sever-
ity of…[a woman’s] mental disability, though in practice this legisla-
tion, intended to protect from abuse or exploitation, runs counter to
developments in awareness of the sexual rights of people with learning
difficulties. It will still be important, however, to establish that…[a
woman’s] participation is voluntary and that…[she] is not being
abused… (Braye and Preston-Shoot 1997, p.134)
With such legislation in mind, consent is clearly an important issue. The
Human Rights Act 1998 may affect individual cases concerning sexuality
and consent; time and case law will provide further insight.
None of the questions or issues raised above are particularly easy to an-
swer. They do, however, highlight the importance of empowerment, of get-
ting to know the person involved with well and the need to believe in the
rights of people with learning disabilities. If any of the above issues raise
concerns, a multi-disciplinary approach may be taken in a decision making
process. Ultimately the issue of consent may have to be decided by the court.
These are important aspects in the protection of vulnerable adults.
Joint working, for example, with the community nursing teams can be
beneficial. Access to sex education, and sexual health and safety awareness
training, through Health Action or local colleges may also prove helpful. In-
dependent advocacy support could be used to enable the person’s views to
be put forward. As a support worker or carer, an awareness of legislation and
agency policies is essential to ensure work remains within the legal bound-
aries of a role. Some agencies provide specific guidelines on how to give sup-
port in relation to issues of sexuality.
A person wanting or having a same sex relationship should, in theory,
have the right to be supported. However, it is critical to be aware of and work
within the legal framework that encompasses this aspect of care provision.
Same sex relationships may impact upon how care and support is provided.
For example, two men wishing to have a sexual relationship may be treated
or supported in a different way to two women. We will explore this further,

as male homosexuality may be seen as a greater threat to workers’ attitudes
than lesbianism. We will now look at some issues relating to male homosex-
uality and identify how it may impact upon practice.
Some of the legislation on male homosexuality used since the 1880s
will be considered. This legislation includes the Criminal Amendment Act
1885, which criminalized all forms of sexuality between men, whether this
was in public or private. More recent legislation includes the Criminal Justice
and Public Order Act 1994 which specifies the age of consent between men.
Lobby groups such as Stonewall continue to fight for gay and lesbian rights.
At the present time partnership rights are being sought for people in same
sex relationships: the right to be recognized as a couple and to have the same
rights as partners in heterosexual relationships. For example, housing and
pension rights or entitlement for partners of people in specific employment.
Some councils have now started to recognize partnership rights. From 5
September 2001 the Greater London Authority introduced a scheme
enabling any couple, same sex or otherwise, to register their partnership.
This is an example of the continual striving for legislative recognition of
same sex relationships.
Legislation will continue to change concerning male homosexuality and
its acceptance. Thus the level of care and support that can be legally provided
may also change. There are other texts that explore issues of legislation and
male homosexuality in a greater depth: e.g. Brown (1998); Gooding (1992);
Jeffery-Poulter (1991); Wilson (1995).
An historic resistance to accepting homosexuality is well recognized and
affects many people. Heterosexuality is frequently identified as the key to
sexuality: ‘Heterosexism is a deeply ingrained set of ideas and practices both
within and outside social work’ (Thompson 1993, p.135). A person’s under-
standing, values and religious beliefs can also affect how homosexuality is
perceived. Personal beliefs can impact on responses to male homosexuality,
as it may make aspects of gay male sexual activity be perceived as either mor-
ally wrong, or socially unacceptable. As explored earlier, legislation may also
compound this by making certain actions criminal. This must, to an extent,
inhibit or threaten the role of care and support. As a worker, the level of ac-
countability and the risk of crossing the divide between legal and illegal sup-
port may restrict practice. All these aspects can impinge upon practice and be
perceived as a threat when considering care and support concerning male
homosexuality.
We are not suggesting that women wishing to have lesbian relationships
are free from such restrictions of care. However, ‘There has been no
equivalent legislation in relation to lesbian sexual activity, as it has never

been legally acknowledged in law…’ (Brown Cosis 1998, p.25). This may
enable care and support workers to feel less threatened by legislation when
supporting women in same sex relationships. In contrast, Brown Cosis iden-
tifies other perspectives that may restrict and influence the work with, and
support of, lesbians:
…in practice, social work agencies tend to deal with lesbians in one of
two ways. Either the woman’s specific needs as a lesbian remain
unrecognised and ignored, or her lesbianism becomes the central
preoccupation, the prism through which her every word and action is
interpreted. (Brown 1992, p.201)
An awareness and understanding of the different issues and perspectives
affecting lesbians can help inform practice and challenge oppression and
discrimination.
There are some publications that can inform this area of work in greater
depth. In particular, the material concerning training packages for support
staff written by McCarthy and Thompson raises many pertinent issues.
These include the importance of:
• acknowledging that many people who have same sex relationships
do not necessarily perceive themselves as homosexual
• the care worker being open to discussion of same sex relationships,
to enable confidence, and a non-prejudiced response needs to be
recognized. This is particularly important when trying to provide
information to men about safer sex.
(Adapted from McCarthy and Thompson 1992)
It is important to acknowledge that general understanding, public responses

and, to an extent, legislation are continually changing in relation to male
homosexual and lesbian relationships.
Whether heterosexual, gay or lesbian there is a risk that a relationship
may be abusive. It is critically important to make certain that any relationship
is not an abusive one, that people are consenting and that care and support is
provided within the legislative framework. Legislation may appear oppres-
sive and discriminatory in some situations; however, it is also there to try to
provide guidance and a legal structure that protects those at risk of abuse.
The balance between supporting relationships and providing protection
from abuse is often far from easy and requires careful consideration and
monitoring.
Sexual relationships that are illegal or abusive must be dealt with in the
appropriate manner. If at any time there is concern that there is an abusive sit-
uation it is critical that the line manager be informed immediately and appro-
priate action taken. Many agencies and organizations have policies that
cover adult abuse and sexual abuse. Consultation of the relevant policies can
provide guidance. An understanding of abuse and possible signs that abuse is
taking place is a critical tool to have as a care and support worker, whether
providing educational, social or medical care. Low self-esteem, depression,
difficulties in developing and maintaining relationships, emotional disor-
ders, injury or self-injury can all be an indication of abuse (Corby 1993;
Finkelhor 1990; Trevithick 1993). Any concerns that abuse may have taken
place, or be taking place, must be addressed immediately and the person be
supported appropriately. A client centred approach involving empathy, con-
gruence and unconditional positive regard (see Chapter 8) can often em-
power the person in working through issues of abuse. Time, patience and
sensitivity are required in helping a person who has been abused work
through the emotional issues (Copley and Forryan 1997; Corby 1993;
Doyle 1997).
It is important to consider that abuse can be sexual, physical, emotional
and financial and can occur at any age. Many other texts have been written
that consider abuse and suggest methods of intervention. Child abuse issues
can be studied through the work of, for example, Corby (1993) and Doyle
(1997). Abuse against people with learning disabilities has been researched
and guidance can be found in the work of, for example, Brown and Craft
(1989) and C. Williams (1995). Elder abuse has been studied by, for exam-
ple, Action on Elder Abuse (1995), Bennett and Kingston (1993) and
Bennett, Kingston and Penhale (1997). Having an understanding and
awareness of aspects of abuse can promote supportive intervention to pre-
vent its continuance. The importance of such supportive intervention for the
individuals involved should not be underestimated.
We will place some of the aspects discussed in this section into a working
context through two case studies.
CASE STUDY ONE

Stefan and Barbara lived in the same supported housing for over six years.
They initially formed a close friendship that deepened over time. They
decided they wanted some advice concerning a sexual relationship as they
were confused about some issues. Barbara was also particularly worried
about getting pregnant and wished to know more about contraception.
Whilst able to give some advice and information, the residential staff
asked Stefan and Barbara if they would consider a referral to the community
nurse who had specialist training and knowledge. With their agreement they
were also referred to their local advocacy unit for further support. Barbara’s
parents were not happy with the relationship; they were concerned that
Barbara might be being pressurized into a sexual relationship. They dis-
cussed this with the residential staff.
For the staff involved one of the main issues in supporting Barbara and
Stefan was that of ensuring they were both making an informed choice
about their relationship. Issues were discussed with them separately on
several occasions to identify their individual understanding, perspectives
and wishes. Stefan was able to readily communicate his thoughts, concerns
and questions, but for Barbara this was less straightforward due to her
spoken communication. The staff had to establish that Barbara was con-
senting and that there was no abuse taking place. They took the time to
establish what she wanted and discussed options of representation or an
independent advocate to work with her.
The referral of the couple to the community nurse for advice enabled
Stefan and Barbara to look at their relationship in more depth. They were
able to think about and discuss many aspects of it. The referral to the advo-
cacy service was another way of ensuring both Barbara and Stefan were able
to individually explore their needs concerning sexuality, make informed
choices and alleviate further any risk of abuse. With Barbara’s permission the
residential staff also worked with Barbara’s parents to support them in un-
derstanding her rights to a sexual relationship. The staff were able to explain
that the purpose of having an individual advocate was about ensuring in-
formed choice for Barbara and a further safeguard for her.
A key issue to be considered is the aspect of confidentiality. Most of us
are able to enjoy privacy concerning personal and sexual relationships.
Barbara and Stefan not only needed to discuss theirs with residential staff
but also with the community nurse and their advocates. It may be embarrass-
ing enough to share such information with one person let alone three or
more who may become involved, however positive the reasons. It is also
worthy of note the power and influence that parents and carers may still have
when their adult children are in residential or other forms of care. We recog-
nize it is very important to listen carefully to parents’ and carers’ views and
concerns. We also think it is vitally important to make sure we are listening

to and advocating for the person with learning disabilities.
CASE STUDY TWO

Monique and Freda shared a supported group home with two men for
several years. Initially they all got on well and went out together socially.
Later, Monique and Freda formed a lesbian relationship. With their rela-
tionship strengthening and through spending more time together, the
friendship with the men in the group home diminished. In the end Monique
and Freda decided they wished to move into their own accommodation in
the community. They spoke about this with their key worker, Alistair.
Alistair arranged for them to see a housing officer to discuss moving.
They returned with forms that needed completion and sought his help.
Monique and Freda wanted accessible accommodation where they could live
together and were not particularly bothered about the type of accommoda-
tion. Alistair advised them to ask for two bedroom accommodation and sup-
ported them in filling out the forms accordingly.
Monique and Freda were then written to by the housing officer to say
that the wait would be more than two years for two bedroom accommoda-
tion. They spoke to Alistair and said they would be happy with a one bed-
room flat. Alistair advised them to wait. They were not happy with this and
went to see the group home manager. They discussed what had happened
with her and she supported them in talking to the housing office and in
modifying their application. They were then advised of a much shorter wait-
ing list.
Alistair had a problem with Monique and Freda’s wishes. He was not able to
acknowledge their lesbian relationship as this was in conflict with his
religious and personal beliefs. His advice was based upon his personal values
and not on the promotion of his clients’ rights to self-determination. Alistair
was disadvantaging Monique and Freda through his advice to them.
Although Alistair supported them in seeing a housing officer, they had
not realized his advice had disadvantaged them. The women did not initially
get the best advice due to Alistair’s bias around homosexuality and lesbian-
ism. That Monique and Freda sought help from the group home manager
brought these issues to her attention. Taking into consideration Alistair’s re-
ligious beliefs, the manager was then able to give Alistair appropriate super-
vision and look at suitable training for him on aspects of work with sexuality.
CONCLUSION
Supporting individuals within the learning disabilities field on issues of
sexuality can be difficult, but should not be avoided. It is important to know
where to access information to improve the support given. The perceived
balance may be a fine one between supporting a happy sexual relationship
and being involved in an abusive situation. Joint working and inter-agency
support are crucial. Working closely with the people being supported,
actively listening to what they say and acknowledging their rights and
responsibilities will help the situation. As previously discussed, it is im-
portant to be aware of the policies and procedures of the organization.
Above all, consideration needs to be given to the right of people with
learning disabilities to have fulfilling relationships.
Key points
• Sexuality is an integral part of the complex characteristics of
human existence.
• Sexuality and gender roles are both affected by historic and
present day social expectations.
• People with a learning disability should be entitled to their
sexuality, sexual relationships and sexual health as are other
people in society.
• Legislation provides a safety structure to protect vulnerable
people against abuse and inappropriate sexual activity.
• Legislation can restrict some people, in particular male
homosexuals, to their right to have a same sex relationship and
to receive support and guidance equal to that available to
heterosexual couples.
• Informed choice is critical within all relationships.
• Any concerns of possible abusive situations must be dealt with
immediately in an appropriate manner. This may be effected
through the guidance of managers, policies and procedures of an
agency, legislation or by police involvement.
• Joint working and inter-agency support can play a crucial role in
enabling a person to achieve his or her right to sexuality and
safe, respectful sexual relationships.
LOSS AND BEREAVEMENT

INTRODUCTION
It is important from the outset of this section to emphasize that by loss and
bereavement we do not refer exclusively to death. We wish to address the
wider context that may include the loss of personal ability, a place of work,
home or friends. It is also worth noting that staff working in hospital,
residential, day care or community settings often change jobs or places of
work. It may have taken time to build up a working and trustful relationship
with the person being supported. As the carer moves on this is often a loss to
the person who is cared for. We will explore some aspects of loss and
bereavement and how a person may be affected by this.
Much literature can be found that explores loss and bereavement, partic-
ularly through death (Parkes 1972; Philpot 1989; Worden 1991). However,
relatively little appears to specifically relate to people with learning disabili-
ties (Luchterhand and Murphy 1998; Oswin 1991). Hollins and Sireling
(1994) provide books in a pictorial format to explore loss and bereavement.
This section will explore some theoretical perspectives that were predomi-
nantly written to focus on loss through death. We aim to suggest how this
knowledge can be used in supporting people with learning disabilities in
various situations of loss and bereavement.
WHAT IS LOSS AND BEREAVEMENT?

Bereavement is the loss of a close and often personally significant rela-
tionship. This may be of a relative or friend and may be through death or
change of circumstance. Feelings of loss usually accompany bereavement,
change and separation. Grief is what we feel and mourning is the process of
expressing our sorrow and adapting to our loss. A description of the function
of grief is given by Buckman:
Grief is all about letting go and saying goodbye. There are many differ-
ent theories about precisely what it does, but the theme most often re-
peated is of the survivor letting go of her attachment to the person who
dies, and, by doing that, becoming able to make attachments to other
people in the future. (Buckman 1988, p.89)
Each bereavement is different, each of us will grieve in our own way. Though
we experience bereavement individually there is a process which people go
through when they are bereaved. This journey of grief is not an easy or
straightforward process, but one with advances and regressions, each person
taking their time in working towards recovery. This process is not a

prescribed pathway or rigid set of stages to be strictly undertaken; rather it is
a personal journey, towards readjustment and redefinition.
People with learning disabilities suffer loss and grief with the same
range of emotions and reactions as the population as a whole and their needs
should be fully considered. What is required by the carer, worker or sup-
porter is an awareness of the bereavement process. There is a need to under-
stand the time it may take and the individual’s need for sensitive support to
enable full participation and expression throughout his or her personal
journey.
In this section we will explore this further and look at how theory can be
used in practice to support people with learning disabilities through the loss
and bereavement process.
LOSS AND BEREAVEMENT, THEORY AND PRACTICE

People with learning difficulties have a right to grieve, they need op-
portunities to mourn, they need time to recover, and sensitive support as
they go through the normal reactions of grief such as anger, weeping
and depression… (Oswin in Dickenson and Johnson 1993, p.297)
This explains what may be an ideal but is not always put into practice.
Initially we will explore some of the theoretical underpinnings of the
process a bereaved person may undertake. There are various models and
theories around the stages of bereavement and what a person may
experience.
Worden (1991) suggests that four tasks of mourning have to be accom-
plished for equilibrium to be established:
Task I: To accept the reality of the loss.
Task II: To work through to the pain of grief.
Task III: To adjust to an environment in which the deceased is
missing.
Task IV: To emotionally relocate the deceased and move on with life.
(Worden 1991, pp.10–16)
A similar process is described by Leick and Davidsen-Nielsen (1991) and

Scrutton (1995). We will discuss the process as outlined by Worden and will
not solely focus on death, but open the approach to other forms of loss and
bereavement.
Task I: To accept the reality of the loss

Bereaved people need to accept the reality of the death or loss. Shock and
disbelief are often expressed in this initial phase. Individuals may describe
themselves as numb with shock or disbelief.
If the loss is through death the funeral will take place and there may be
comfort in the rites of passage of religion or custom. There may also be a
sense of unreality at times. Bereaved people may experience a sense of both
believing and disbelieving the loss and with this mixture of emotions their
behaviour may sometimes appear contradictory. Searching is part of the task
of the acceptance of the reality of loss or death. Bereaved people may search
in familiar or special places, in the faces of a crowd, and may also dream of
the deceased. They may talk to the deceased and imagine they are present. If
the fact of loss is not fully accepted and worked through then a future event
may trigger feelings of the original loss. This triggering event may have no
apparent significant link to the original bereavement. The original loss will
need to be accepted and worked through in order to be able to move forward
in life.
Task II: To work through to the pain of grief

Bereaved people need to acknowledge, feel and experience the pain of grief
to accomplish this task. He or she will pass through a range of emotions,
sometimes seemingly conflicting, in experiencing the pain of their grief.
These emotions include sadness accompanied by crying or sobbing, feelings
of anxiety, anger, guilt and remorse. Pangs or feelings of grief have been
described: ‘a pang of grief is an episode of severe anxiety and physiological
pain’ (Parkes 1996, p.43).
Task III: To adjust to an environment in which the deceased is missing

To achieve this bereaved people have to redefine their roles in life, adjust
their perception of who they are and what they do, and learn new skills. The
person who has died or left may have undertaken many roles in the life of the
bereaved such as carer, housekeeper or budgeter. The bereaved may there-
fore have to learn new skills to cope and manage in the future. At first
bereaved individuals may not readily succeed in undertaking these new tasks
and roles and this can lead to feelings of helplessness and failure. In
gradually dealing with these events and by continuing to attempt new
things comes the acquisition of knowledge and skills to enable moving
forward. Some people we have worked with in the process of bereavement
have discovered liberation in learning new skills that they had not pre-
viously had the opportunity to learn.
In some cases people with learning disabilities who are bereaved may
have to adjust to another person taking on some roles of the deceased. Ad-
justment needs to take place in a variety of situations, not only following a
death: when the main care provider has left home, when a long-term key
worker changes job, or a residential home is shut down.
Bereaved individuals may have in some way felt themselves partly de-
fined through the person’s role or status in life and will need time to adjust to
no longer being defined in such a way. ‘Not only do the bereaved have to ad-
just to the loss of roles previously played by the deceased, but death also con-
fronts them with the challenge of adjusting to their own sense of self ’
(Worden 1991, p.15).
In redefining self and through acquiring skills comes the discovery of
new strengths and abilities. In time an ability to manage the roles previously
fulfilled by the deceased is learnt, or a new person fulfilling that role is ad-
justed to.
Task IV: To emotionally relocate the deceased and move on with life
Having reached the place and time to move forward in life, bereaved
individuals have spent time and energy in acceptance, mourning, adjusting,
learning, acquiring skills and growing in new ways. This part of the journey
is where bereaved people are able to identify a place inside themselves where
memories of the deceased or person lost are held. The person who has gone
is not forgotten; they remain loved or remembered, yet there is room to move
on.
Exploring these tasks highlights the necessity of a flexible approach when
providing support or care following a loss. There is no set time for mourning.
A consensus appears to be that the process will take about two years,
sometimes less, sometimes more. Each person’s experience of loss is diff-
erent. The period of mourning will depend upon the strength and nature of
the attachment and how long it takes to work through. Recovery does not
mean having to forget – it is about acceptance, adaptation and moving on.
SOME REACTIONS TO GRIEF

Sadness is experienced but is not always manifestly obvious to others. For
some people there may be crying, weeping and sobbing. The pain of sadness
is experienced.
Anger in realizing the reality of loss may be expressed in different ways.

There may be anger directed at the deceased for abandoning the bereaved or
against someone or something for allowing this to happen. Anger may be
expressed against hospital staff for not saving the life of the deceased; it may
also be expressed against friends or relatives for not understanding, or just
because they are there.
Anxiety can occur, with the bereaved person uncertain as to whether he
or she will be able to cope with the future. Anxiety may also take the form of
concern about the prospect of the person’s own mortality, or concern about
remaining sane following the loss or death of the loved one, special person
or way of life.
Guilt is frequently expressed following the loss or death of someone we
love; guilt for not being there at the end, for not being able to alter the chain
of events, for surviving. Given time and the ability to work through these
feelings, by describing what the bereaved person actually did, may help di-
minish such feelings of guilt.
THEORY TO PRACTICE
When supporting people with learning disabilities through a bereavement
there are various aspects to consider. Our suggestions are based on the
bereavement process outlined above and on personal experience. This is, of
course, not a definitive approach. Each person must be seen as individual and
supported in a way that is appropriate to his or her need.
If the loss relates to death there is not a right way of providing support;
this applies to most situations of loss and bereavement. The following mate-
rial explores ways of working after a death; however, the principles could be
transferred and used in many situations of loss.
It may be useful to have time to consider how to break the news, the
words to be used and where this will take place. When breaking the news it is
important to use clear and accessible language. It is best to use language that
has no other meaning; words such as ‘died’ and ‘dead’. If using sign lan-
guage it is just as important to ensure there is no confusion of what is being
said. In using such phrases as ‘gone to sleep’, ‘gone on a journey’ or ‘passed
away’ mixed messages can be given. Such phrases may only serve to confuse
people who have been bereaved in leading them to believe that the deceased
will wake up from that sleep or return from the journey. Clear language best
supports the person with a learning disability to accept the reality of the loss.
The person needs to be given time to take in what has been said. The be-
reaved person may wish for a time of quietness or to ask questions and may
not take in the answers all at once. If the situation is of a death, the person
may ask to see the body and seek support to do so. Sensitive listening plays
an important role. Some people gain comfort from expression of religious
beliefs and may ask about heaven or other belief. It may be useful to clarify
what that means to the individual and to support him or her to explore the
issue. It is important to give time and undivided attention to the bereaved
person.
The importance of the genuineness of the supporter or worker – the
respect demonstrated and the kindness shown – should not be under-
estimated. Although support workers do not know how bereaved individ-
uals feel, they can demonstrate empathy for their situation and feelings. This
can be strengthened further by not making assumptions, by active listening
and by ensuring adequate time is given to the person. In looking at the role
we take, Spall and Callis say:
Perhaps the most important thing that can be said…is that there are no
right words to say. There is nothing that anyone can say that will make
it right or make it better. Often just being there with the bereaved is
more valuable than anything we might say. What is said is often forgot-
ten anyway, but the sense of ‘presence’ may be treasured for a long time.
A touch of hand or an expression of care can often be more powerful
than a whole host of words. (Spall and Callis 1997, p.78)
INVOLVING THE PERSON

Some people with learning disabilities may not readily or instantly under-
stand the concept of death or other loss. This, of course, does not stop them
from feeling the bereavement. It would be wrong to assume people are not
feeling a loss because they are unable to easily express it. People will absorb
their loss over time in their own way and they need to be included in the
mourning process to come to terms with and express their grief.
It is critical for helpers to realize that adults with mental retardation do
not have to understand the concept of death to feel loss. They are likely
to experience loss and grief if people previously close are no longer in
their lives. This will happen regardless of their understanding of death.
(Luchterhand and Murphy 1998, p.17)
Each person is different and has different needs. As a worker or supporter,
one of the fundamental points to consider is how best to enable the bereaved
person to actively participate in the bereavement process. Who does it make
it easier for if someone with a learning disability is excluded from part of the
process of mourning? It is difficult enough to be bereaved; it is even more

difficult if no one speaks of it or if a person is excluded from the process of
grief and mourning.
It may be appropriate to support individuals in planning the entire fu-
neral or it may be appropriate to consult their wishes and act on their behalf.
Whatever the case, the importance of ensuring the participation of bereaved
people with learning disabilities is of paramount importance: it is their loss.
EXPRESSIONS OF GRIEF
Following a loss people may suffer disruption to their usual patterns. There
can be disrupted sleep with symptoms such as disturbing dreams and night-
mares, and also fear of going to sleep. Eating patterns may change and loss of
appetite frequently occurs. Loss of concentration, confusion and feelings of
anxiety can occur. Individuals may become restless and this may take
different forms; some people pace up and down whilst others may take to
walking long distances. Repetition and wishing to go over an event or
explanations are common behaviour in the process of working through
grief.
There can be increased physical ill health with a wide variety of symp-
toms such as stomach upsets and asthma. Whilst symptoms are a common
occurrence, they should be noted and checked. People may well need extra
support in taking care of themselves and steps may need to be taken to pre-
vent self-neglect. In recognizing these factors we can support individuals
through the process and can be reassuring.
SOME DIFFICULTIES WITH THE PROCESS OF GRIEF

Denial of the reality of death or loss may occur early on in the bereavement
process and is part of a self-protection strategy. Continuing denial may lead
the bereaved person to become stuck and that will in turn delay the full
process of mourning. There can be delayed grief where the loss is acknow-
ledged but the emotions have yet to be worked through. Ultimately, this will
delay the healing process until those emotions have been released and
experienced and the pain of grief felt. If a person does not adapt to the loss
then he or she may not learn how to adjust to life without the deceased or
learn the skills necessary for adjustment.
Some people choose not to put themselves in the position of being hurt
any further. Despite working through their feelings and emotions and
adjusting to the environment without the deceased, they cannot cope with
loving again as an aspect of their new life. Chronic grief occurs where peo-
ple are unable to adapt to life without the deceased, lost person or way of life
and see no future for themselves. Some lives may be preoccupied by memo-
ries and by missing the person with an intensity of feeling.
Usually with support the people can work through their bereavement.
Sometimes individuals may become stuck in the process and it may be possi-
ble to help by suggesting tasks or by supporting visits to a particular person
or place. On some occasions more specialist help such as grief counselling
may be required, to enable the person to work through their thoughts and
feelings.
Aspects of loss and bereavement will now be placed into a working context
through the use of two case studies.
CASE STUDY ONE

Mary was in charge of an evening shift in a residential home. She received a
call from a local person saying there was a man with Down’s syndrome
sitting in her front garden. The man would not talk to her or get up, it was
very cold and she was concerned about him and asked if it was someone
from the home. Mary said not but offered to come and talk to the person.
Mary introduced herself and spent time talking to the man to enable
mutual trust and confidence. Mary suggested that he might like to phone
somebody and he returned with her to the residential home. After some time
and careful communication, Mary discovered that the man’s name was Joe
and that he lived in a local group home. Whilst waiting for someone to col-
lect him, Joe kept saying ‘Dad’ but would not or could not elaborate further.
It transpired that Joe’s father had died about two months previously. His
family had thought it best if he did not attend the funeral as they did not
want him upset and were adamant about this. Searching is a part of the early
process of grief and it would seem that Joe had been literally searching for
his father. He had become lost, upset and confused and ended up sitting
downcast on a stranger’s lawn.
Joe had been excluded not only from the funeral arrangements, but also
from the funeral itself. His family had believed this to be in his best interest.
Taking this course of action left Joe bereft of participating in the process of
saying goodbye and in the funeral proceedings. He had not been part of the
group of mourners of both family and friends and by his exclusion had be-
come further confused.
Following this event Joe’s key worker, Annie, helped alleviate the imme-
diate situation by further talking through with Joe what happens when
someone dies. She used some illustrated books borrowed from the commu-
nity nurse to help explain to Joe in more detail about death and loss. She left
them with him to look at and to ask any further questions when they next
met.
Annie also supported Joe by encouraging his family to talk to him about
his father and their happy memories as well as their sadness at his death. Joe’s
brother was asked to support Joe to put a memory book together, and
through this they were also able to share their grief and further explore their
loss. Annie also took Joe to visit his father’s grave and to lay his chosen
wreath upon it.
Joe had a right to grieve, to say goodbye and mourn his loss, and this was
the beginning of the process of accepting the reality of the loss. It may have
been a less confusing process for Joe if he had been able to fully participate in
the funeral and its arrangements from the beginning of the bereavement. By
discussing issues, asking questions, visiting the grave and with support from
his brother, Joe was able to begin his grief work. He started to work through
the process of bereavement and begin his personal journey of grief.
CASE STUDY TWO

Charmaine was 55 years of age and had always lived with her mother in the
family home. Her sister Mandy had moved away to another part of the
country many years before. Charmaine worked part time in a local factory
that she walked to from home. She enjoyed cooking and housework and
attended a local drop-in club one evening a week. Over time as her mother
had become frailer, Charmaine had taken on more of the carer’s role,
performing domestic tasks and shopping, through to accompanying her
mother on hospital appointments. They were extremely close and did not
have an extensive social life outside home.
Charmaine’s mother suffered a major stroke and was admitted to hospi-
tal. Following this, she did not fully recover and continued to need nursing
care and was consequently admitted to a local residential home. Charmaine
seemed to understand the reasons for her mother’s admission and to accept
the situation. She discussed the issues about her mother with the hospital so-
cial worker and was also supported by her social worker from the local com-
munity team. Charmaine seemed to cope well, and although she was
sometimes weepy and quiet over the following months, showed no signs of
undue distress. She seemed to adapt well to living on her own and any help
she sought was on a practical level.
During a routine visit from her social worker about six months after her
mother’s move to residential care, Charmaine started shouting and blaming
the hospital for her mother being ‘taken away’. She also blamed the social
worker for allowing this to happen and her sister Mandy for living away and
not doing anything about it. She was angry at being left to live alone at home
and angry about not being able to care for her mother.
An explanation for Charmaine’s anger can be found within the context of
bereavement theory. She was still in the process of both working through her
feelings of loss and of adjusting to her loss. She missed her mother terribly
and had not been able to express this fully to anyone. She had put her
mother’s needs first and not expressed her own needs.
Charmaine, although consulted about her mother’s move to residential
care, felt powerless in the situation. She also lacked her mother’s constant
companionship. She wanted her mother to be well cared for, but did not
want someone else to care for her as well as she could.
Charmaine was able to relieve her pent-up feelings by expression of this
anger, although she did not do this as a conscious measure. She was then able
to express her feelings of loss of control of her situation and to explore her
needs more fully. She was someone who needed kindness, understanding
and support to work through her bereavement and to safely work through
her feelings of anger, which she herself found quite frightening.
CONCLUSION
Loss and bereavement are complex issues requiring thoughtful support. This
is highlighted by Schwartz-Borden:
Along with the need for focus comes the need for balance. The be-
reaved must achieve some balance that allows them to experience their
pain, sense of loss, loneliness, fear, anger, guilt, and sadness; to let in
their anguish and let out their expression of such anguish; to know and
feel in the very core of their souls what has happened to them; and yet to
do all this in doses, so they will not be overwhelmed by such feelings.
(Schwartz-Borden 1986 in Worden 1991, p. 47)
It is hoped that by having more knowledge and understanding of the under-

pinning theory, the worker or care supporter will be empowered to be more
supportive and empathetic. Having a realistic understanding of the process
and emotions involved in the experience of loss and bereavement will
enhance support and be of greater use to the person.
Key points
• Loss and bereavement are not only about death, they may also
encompass loss of health or way of life, change of work or
residential setting and through the loss of familiar people.
• Each bereavement is different; however, there is a process that
most people will experience.
• People with a learning disability suffer loss and grief with the
same range of emotions and reactions as the population as a
whole and their needs should be fully considered.
• People with learning disabilities have the right to grieve, mourn,
receive support and be given time to recover.
• Support should be provided in a way that is appropriate to the
person’s individual needs.
• There are a number of theories that can be used to help
understand the process of loss and mourning.
• Respect and consideration is needed for different cultural and
religious processes of mourning.
8
Values, Ethics and Contrasting

Approaches: Person Centred
and Behavioural
INTRODUCTION
In this chapter we will start by looking at values and ethics that inform and
underpin care and support work and go on to consider two contrasting ways
of working, a person centred approach and a behavioural approach. Some
underpinning ideas of a person centred approach will be explored and in
contrast some behavioural approaches will be looked at. In exploring
behavioural approaches, consideration will be given to what is meant by
behaviour, how behaviour is learnt, and some of the different ways that the
approach can be used. Aspects of power difference and potential issues of
control will be highlighted. Our aim is threefold: first, to highlight the
importance of practising using a sound value and ethical base; second, to
briefly explore aspects of person centred and behavioural approaches; and
third, to reinforce the need to consider the implications of working in
specific ways.
Values and ethics, person centred work and behavioural approaches will
all be placed into a practice context using case studies.
VALUES AND ETHICS

INTRODUCTION
In this section, we will briefly explore values and ethics in practice. We will
look at what is meant by values and ethics, and their influence in care and
support work. Consideration will be given to the intricacies, conflicts and
difficulties involved. Various aspects of the intrinsic nature of values and
141
ethics within care and support work will be explored. Two case studies will
be used to highlight issues discussed in this section.
VALUES
One definition of values is given as ‘a belief that something is good and
desirable. It defines what is important, worthwhile and worth striving for’
(Thomas and Pierson 1996, p.390). This appears a sound explanation of
what values should be about; however, are values really as easy and
straightforward when put into practice? Banks (1995) highlights some of
the difficulties that are associated with the concept of values.
‘Values’ is one of those words that tends to be used rather vaguely and
has a number of different meanings. In everyday usage, ‘values’ is often
used to refer to one or all of religious, moral, political or ideological
principles, beliefs or attitudes. In the context of social work, however, it
seems frequently to mean: a set of fundamental moral/ethical principles
to which social workers are/should be committed. (Banks 1995, p.4)
Values are intricately involved in the role of care and support. Activities
undertaken in care and support are influenced by the views of people in
society and expectations of how care should be provided. The values of the
society we live in influence our thinking, our actions and, to an extent, policy
and legislation.
Another aspect to consider is that each of us will have our own beliefs,
views and values. These beliefs, views and values will come from a variety of
perspectives and be influenced by each individual’s experience. Our race,
cultural background, family history, perceived position and gender all play a
part in how we view the world and each situation. There is a need to be aware
of our personal value bases and to think how we might influence others. The
influence we exert may be deliberate or inadvertent.
If we allow our personal value base to impinge upon someone we work
with or support this may be both oppressive and discriminatory. Thomp-
son’s (1996) PCS Analysis considers the aspect of personal beliefs as central
and the easiest to challenge. These personal beliefs are surrounded by cul-
tural views and all are encompassed by society’s views. He suggests that the
place to start is by challenging our own personal views, then, when individ-
uals have developed a sound personal value base, to move on to challenge
cultural and societal views.
In principle, this appears a straightforward process, but how is a sound
value base identified? In discussion of social work values, Banks outlines and
VALUES, ETHICS AND CONTRASTING APPROACHES 143
explores some influential principles adapted from Biestek (1961), which

are: ‘Individualisation; purposeful expression of feelings; controlled emo-
tional involvement; acceptance; non-judgmental attitude; user self determi-
nation; confidentiality’ (Banks 1995, p.26). These principles can be used to
inform our thinking about the meaning of values and how we encompass
them in our work. Banks proposes that ‘respect for the individual person as a
self determining being’ (1995, p.27) is a key theme running through all the
above principles. If we take this key theme in relation to work with people
with learning disabilities, theoretically we start with a sound basis for
practice. Whatever a person’s ability, each individual has the right to self-
determination, and it is part of the role of the care and support worker to
endeavour to find ways to best support the person in achieving this. Much
care and support work is about promoting rights and choices. This may vary
greatly from an individual’s right to choose what to wear or what to eat,
through to the promotion of independent living and the right to take risks.
With such a promotion of rights comes the enabling of learning through ex-
perience for the person with a learning disability, and the ability to learn
from both successful experiences and from mistakes. With the right to make
choices also comes the learning about being accountable for those choices.
Careful consideration needs to be given to how accountability is explained
or conveyed in relation to self-determination and choice.
Banks goes on to suggest that a second key theme is ‘“individualisation”
the recognition of each user’s unique qualities based upon the right of hu-
man beings to be treated as individuals with personal differences.’ (1995,
p.27). Treating people as individuals with personal differences may seem an
obvious statement, but this is not always evident in practice. Assumptions
and generalizations about people with learning disabilities are sometimes
made in ignorance or for the sake of expedience. Such assumptions or gener-
alizations need challenging as part of the process of valuing each individual
and as part of valuing difference. In this way, we reinforce values in practice
and their importance to our work. We will go on to explore some of the prin-
ciples outlined above in our section on person centred work.
There are various interpretations of value bases; however, for the pur-
pose of this section we will use the value base identified by what was known
as the Central Council for Education and Training in Social Work
(CCETSW 1998). The value base suggested by them is still used as an intrin-
sic part of the training undertaken by potential social workers. The sug-
gested values are to:
• identify and question their own values, and their implications for
practice
• respect and value uniqueness and diversity, and recognize and
build on strengths
• promote people’s rights to choice, privacy, confidentiality and
protection, while recognizing and addressing the complexities of
competing rights and demands
• assist people to increase control of and improve the quality of their
lives, while recognizing that control of behaviour will be required
at times in order to protect children and adults from harm
• identify, analyse and take action to counter discrimination, racism,
disadvantage, inequality and injustice, using strategies appropriate
to role and context
• practise in a manner that does not stigmatize or disadvantage
either individuals, groups or communities.
(CCETSW 1998, p.7)
Many aspects are encompassed in this value base. It recognizes difference

and diversity such as ethnicity, culture, gender and sexuality and promotes
the rights of individuals. It places the values in the context of the wider
society in acknowledging there may be competing rights and demands. It
promotes the importance of challenging discrimination whether it be
against an individual, group of people, or a community. Using such a value
base should promote good practice in day to day work.
In looking at our value base, we also need to consider our position
within the system or organization in which we work. Our individual posi-
tion and accountability as a member of that system or organization may in-
fluence us. This position is likely to affect the relationship we have with the
person with whom we are working and power imbalances will almost inevi-
tably exist. The culture of the organization may also influence our values in
practice. Tensions can arise between what we wish to do, think we should do
and what our role permits us to do. Our value base may influence our think-
ing in promoting a person’s rights to a particular service, therapy or form of
care but the guidelines or criteria of our organization may not allow for this.
This may become a dilemma for us and the person being supported. Profes-
sional dilemmas may also arise from the conflicting needs of individuals
within a family, household or other intimate setting. It may well be impossi-
ble to promote each person’s rights equally in a given situation even when
recognizing and addressing the complexities of competing rights and

demands.
Davies (Davies, Howe and Kohli 1999, p.3) provides another aspect to
think about when he suggests that social work values could be helpfully re-
defined in terms of what the client values. The definition of what is of value
then lies with the client and goes towards addressing the power imbalance.
Perhaps in multi-disciplinary work such a definition could be more widely
applied, whether in social work, educational or health settings?
Thinking about values is a complex business, which presents us with
many challenges and dilemmas. We need to remain aware of our personal
value base and to practise with fairness, sensitivity and consideration. In
thinking about how we practise, Howe sums it up thus: ‘…hence the need
for tolerance, and I think above all, compassion. Compassion encourages un-
derstanding, it encourages flexibility; it discourages rigidity and makes us
cautious about too much moral certitude’ (Davies et al. 1999, p.31). Having
explored some aspects of values, we will now briefly look at ethics.
ETHICS
One definition of an ethical code is:
…a body of guiding principles for professional organisations to set the
standard for good practice in relation to service delivery, client and pro-
fessional relationships, and relationships between the professional and
other occupational groups. (Thomas and Pierson 1996, p.140)
Ethics and values are intertwined and one informs the other. The British
Association of Social Workers (BASW) has produced a code of ethics for
social workers and this can provide a basis for consideration for anyone
associated with the care and support of people with learning disabilities. The
code suggests a framework for practice. This is a useful tool to enable us to
think about our practice. The code of ethics links closely to the value base
outlined earlier. The ethical guidelines suggested are:
• To value and treat each person with dignity.
• The need to encourage the self-realization of each individual
person with due regard to the interests of others.
• To relieve and prevent hardship and suffering.
• The need for individual practitioners to develop and improve their
skills.
• The constant evaluation of methods and policies in light of

changing circumstances.
• The worker has the right and duty to bring to the attention of
those in power, and of the general public, ways in which the
activities of government, society or agencies create or contribute to
hardship.
• These guidelines must all be balanced against the professional
responsibility of the worker to the person being supported.
(Adapted from BASW 1996)
The ethical framework looks not only at the individual but also at the wider
context of society and the interplay between them. The issue of an ethical
base in the wider context of society, and specifically in social work, can be
read in greater depth in various texts: for example, Banks (1995); Clark
(2000); Gensler (1998); Hugman and Smith (1995).
The principles of ethics and values are not too hard to understand; however,
placing them into practice can sometimes prove both intricate and difficult.
We wish to highlight some of the possible areas of conflict and difficulty that
may occur.
ETHICAL PROBLEMS AND DILEMMAS

Banks (1995) suggests that there are three fundamental issues involved in
ethical problems and dilemmas:
• Issues around an individual’s rights and welfare – a user’s right to make
his or her own decisions and choice; the social worker’s
responsibility to promote the welfare of the user.
• Issues around public welfare – the rights and interests of parties other
than the user; the social worker’s responsibility to his or her
employing agency and to society; the promotion of the greatest
good of the greatest number of people.
• Issues around inequality and structural oppression – the social worker’s
responsibility to challenge oppression and to work for changes in
agency policy and in society. (Banks 1995, p.13)
One example of an ethical dilemma about an individual’s rights and welfare
may concern the person’s benefits. The individual may wish to take control
of his or her own benefits and decide how they are spent. The carer may
deem the person with learning disability’s benefits to be part of the

household income and calculate it as such in the household accounting.
Promoting the rights of the individual may require skilful negotiation when
a family lives in relative poverty and depends upon the individual’s benefits
to ensure bills are paid.
There are many situations that can challenge and place values and ethics
in conflict. There are the issues of accountability to the client, the organiza-
tion and the public, and where our duty should lie. These issues need careful
consideration before action is taken. We will use case studies to place some of
these aspects into practice situations.
CASE STUDY ONE

Damon was in his forties and lived in the family home with his parents, Alice
and Owen. Damon had regular respite care in a local residential hostel.
Damon attended a local drop-in centre fairly regularly. Owen had dementia
and Alice found it increasingly difficult to cope with supporting both her
husband and Damon. The community psychiatric nurse was involved in
supporting the family concerning aspects of Owen’s dementia.
After some months, Alice felt unable to cope any longer and contacted
social services. Initially, Alice and Owen were visited by a worker from the
team for people over 65. Alice talked about feeling she was in an impossible
situation. She wanted both Owen and Damon to remain at home but even
with support going into the home felt overwhelmed. A worker from the
learning disabilities team was also involved and visited Damon and his
parents.
Damon’s expressed choice was to remain in the family home with his
parents. Damon’s father would not even consider having respite care.
Damon’s mother was physically and emotionally drained and becoming ill
herself. She felt something had to change; she needed to be alleviated of
some of the demands of care. More regular respite care was arranged for
Damon and further support put into the home, but ultimately this was not
enough.
Both Damon and Owen wished to remain at home but both could not.
The social workers and nurse had to support the family through this di-
lemma. Each person had to be listened to and his or her wishes heard. If Al-
ice were to continue caring for either Owen or Damon then the other would
have to live elsewhere. Alice felt torn. The team helped by acknowledging
the difficulty of Alice’s position and by supporting her to think through the
options available in making this exceptionally difficult decision.
Alice finally decided that she must care for Owen at home and thus Damon
would need to move. Her decision was made in the recognition of her own
mortality and the wish to see Damon settled with appropriate care and
support for the long-term future, which at that point was not an option in the
family home. Damon was very upset and thought this unfair and that his
wishes had not been properly considered. His social worker spent time
discussing this with him and trying to help him find positive aspects of his
other choices for the future.
In valuing choice, then ultimately whose choice should be respected? It
was impossible to promote each person’s right to choice equally within the
family situation. In order to improve Alice’s quality of life, Damon’s quality
of life had to change, not necessarily for better or worse, but change, never-
theless. However, each person was consulted, respected and treated as a
unique individual.
CASE STUDY TWO

Sebena, a young Asian woman with complex needs, had lived in a private
sector, purpose built house for two years. It was some distance from her
family home. Sebena’s family visited as often as possible but had to rely on
public transport. Sebena had never felt properly settled since moving into
the house and her family were not entirely satisfied with the standards of
service available. They felt that despite the promises made on admission, the
quality of care was barely adequate and that Sebena’s cultural needs were not
always considered. They were also very concerned about the high staff
turnover at the home.
The family met with a worker from the local learning disabilities team to
explore what choices Sebena had concerning where she was placed. The
worker then visited Sebena to explore her wishes and options.
In reality, if Sebena wanted to stay within distance for her family to visit
regularly then she had no other real choice of home that could meet her
needs. If she chose to move further away then there were other possibilities;
these would also depend upon the available finances to fund the change.
What the worker could do was to investigate the concerns expressed by
Sebena and her family and to deal with these appropriately. She was also able
to alert Sebena and her family to their right to complain and to discuss their
concerns with the county’s inspection and registration department.
The worker was in a position of offering support to challenge the exist-

ing provision to offer a better service. She was not able to promote a real
choice of alternative accommodation to Sebena if she was to stay within vis-
iting distance of her family.
CONCLUSION
It is important to question the values and ethics that are used to underpin day
to day practice. By doing this we work towards evaluating how practice is
provided and measure the standard of delivery. Whilst working within the
framework of values and ethics the person being supported must remain the
central focus.
Clark suggests eight rules for good practice. We would like to conclude
this section with these and suggest they be used as an underpinning frame-
work when considering values and ethics:
• be respectful
• be honest and truthful
• use a sound knowledge base and relevant theory based skills
• be careful and diligent when working
• be effective, helpful and supportive
• practise in a legitimate and authorized way
• be collaborative and accountable
• be reputable and creditable.
(Adapted from Clark 2000)
It is useful to consider each of these rules and reflect upon how they link
with our own value base. This may lead to an enhanced awareness of values
and ethics and their role in the development of practice.
Key points
• Values and ethics should be an intrinsic part of care and support
work.
• A sound and recognized value and ethical base is critical for
providing quality care.
• The CCETSW provides a value base that is still used in the
training of social workers. It provides clear insight and structure.
• Our own beliefs or views could impact upon a sound value base.
Recognizing and testing our individual values against a
recognized framework enables validation of working practice.
• There will be a variety of external pressures that may challenge
and impinge upon values. Reflection using a recognized value
base and ethical framework can help in the validation of care
and support work and promote anti-discriminatory and
anti-oppressive practice.
A PERSON CENTRED APPROACH

INTRODUCTION
A person centred approach, particularly in the field of counselling, is often
associated with Carl Rogers (1951, 1961, 1980). The approach played a
part in the development of social work in the 1950s and the ideas and
terminology are still influential in informing today’s practice. The use of the
ideas associated with a person centred approach may help us to consider
different perspectives of people’s actions and behaviour to better understand
and support them. These ideas and their relevance will be explored through-
out this section and will be illustrated in practice by two case studies.
A PERSON CENTRED APPROACH IN MORE DETAIL

As Rogers developed his style of work and person centred approach he
moved away from many of the established ideas and beliefs of the time. For
example, he moved away from working in a directive way, developing a
non-directive approach. Rogers struggled with and debated behaviourist
psychology; he believed in more than an ‘unbreakable chain of cause and

effect’ (Rogers 1980, p.56). Rogers believed in the importance of human
choice: ‘I have come to realize that the basic difference between a behavior-
istic and a humanistic approach to human beings is a philosophical choice’
(Rogers 1980, p.56).
Rogers worked in a non-directive way, promoting the counselling rela-
tionship as one that sees ideas of self as central. He demystified the therapeu-
tic relationship and endeavoured to make it accessible to others (Thorne
1992). Mearns and Thorne, in describing the relationship between the client
and counsellor, say:
…the client can be trusted to find his own way forward if only the
counsellor can be the kind of companion who is capable of encouraging
a relationship where the client can begin, however tentatively, to feel
safe and to experience the first intimations of self-acceptance. (Mearns
and Thorne 1998, p.6)
These ideas can be transferred and used to inform practice in a wider context
than solely a counselling one. These ideas can apply to care and support
work where enlightened practice can encourage the person to work towards
self-acceptance and self-determination. Other people have developed a
variety of interpretations of a person centred approach. England (1986)
suggested that social work was a form of ‘art’ in its approach. Wilkes (1981)
made clear links to Kantian philosophy and the rights of users to their
freedom from interference and pressures of social work intervention. Howe
(1987) suggested the importance of a ‘client centred’ approach, one that sees
the person first and not as subjects to be treated or controlled. Each
interpretation could be explored further; however, we will remain with our
focus on the work of Rogers.
Some ideas central to Rogers’ person centred approach, ‘conditions of
worth’ and ‘the locus of evaluation’, will now be briefly explored. This will
be followed by consideration of three of the core conditions of person
centred work: congruence, unconditional positive regard and empathy.
These will be considered within the ideal of respect for the person. Areas of
possible conflict and difficulties in using the approach will also be explored.
Conditions of worth
A person learns that to be regarded positively it may be necessary to behave
in a certain way. If particular behaviour invokes a critical response then the
person usually learns that this behaviour needs adjusting or adapting in
order to gain approval. Conditions of worth are imposed through inter-
actions with parents or carers. If a child is told by the parent or carer that it is
bad to show anger then a condition of worth has been imposed. To be loved
and approved of, the child learns to live up to the conditions of worth
imposed by adjusting, not showing the anger felt, or by denial of the
feelings of anger.
From such interactions a self-concept and sense of worth is developed.
Distress is caused by a tension between the real self and the self-concept. In
extreme cases where many conditions of worth are imposed, the person may
try to live up to them by denying his or her own thoughts and feelings and
this can then be extremely limiting to the individual.
A person-centred practitioner understands distress and disturbance in
terms of conflict between the real self, usually referred to in per-
son-centred theory as the organismic self, and the self-concept. The lat-
ter is the constructed, internalized, sense of self and the denials and
adjustments the individual makes to gain the approval and positive re-
gard that are essential for emotional well being. (Mabey and Sorenson
1995, p.25)
A person may decide to express his or her own thoughts or feelings and, by
doing so, risk disapproval or ultimately rejection from the very person from
whom approval was originally sought. In dealing with such distress and
conflicts, the individual may seek the support of a counsellor to work
through these feelings and conflicts. In person centred counselling it is one
of the core conditions of the counselling relationship that unconditional
positive regard is given to the client. The importance of unconditional
positive regard is explored later in the section.
Locus of evaluation
Those who have experienced positive regard and approbation in their
relationships will develop an ‘internal locus of evaluation’. There is a
personal strength and confidence to judge the individual’s own behaviour
and place it in the world. The person is able to say, ‘This is what I want, this is
right for me.’
On the other hand, those people who have had many conditions of
worth imposed upon them will rely on others for endorsement and be less
able to trust in their own judgement. They will rely upon an ‘external locus
of evaluation’.
In many ways the level of dependence on an external locus of evalua-

tion is a reliable criterion for determining the presence of psychological
disturbance. Disturbed people constantly betray the lack of an internal
locus and turn desperately to external authorities or find themselves
trapped in a paralysis of indecision. (Thorne 1992, p.33)
The above quotation may generally hold true; however, if we place it in the
context of work with people with learning disabilities it may not prove so
straightforward. On occasion, some people with learning disabilities may
constantly refer to external authorities or seem to be trapped in indecision.
This may not necessarily be due to the imposition of conditions of
self-worth. It may be due to the nature of the learning disability or it could
be due to the lack of opportunity to experience decision making and the
making of judgements for themselves throughout their lives. The opport-
unity to develop these skills and learn to fully participate and be included
may be required rather than the need to work on a damaged concept of self.
If all aspects are considered then a truer picture should emerge.
THE CORE CONDITIONS

When using a person centred approach there are core conditions that are
considered essential in promoting change. As supporters, workers, nurses or
social workers we are clearly not therapists; nevertheless, the knowledge and
use of the core conditions is both relevant and recognizable and should
underpin our work. The three core conditions to be addressed in this section
are:
• congruence
• unconditional positive regard
• empathy.
Congruence
Congruence is also known or described as genuineness, authenticity or
realness. When congruent with someone we do not hide behind a role, title,
profession or position of expertise. There is no discrepancy between words,
actions and emotions; responses given match what is felt inside. There is an
openness and equality in the relationship and a build up of trust. The
recognition that the supporter or worker is fallible enhances the congruent
relationship. Congruence does not involve inappropriate self-disclosure or
offloading by the worker or supporter on to the person being supported.
The worker needs to remain self-aware and be able to acknowledge neg-

ative as well as positive thoughts and feelings (Thorne 1992). In exploring
congruence, Rogers said:
Though this aspect of congruence is actually a complex one, I believe
all of us recognize it in an intuitive and common sense way in individu-
als with whom we deal. With one individual we recognize that he not
only means exactly what he says, but that his deepest feelings match
what he is expressing… (Rogers 1961, p.282)
The same applies to those in the field of care work: being open about
feelings can help to build up trust and mutual respect. People with learning
disabilities, as is true of the majority of the population, experience con-
gruence or authenticity and relate to this. Congruence requires skill,
self-awareness and an ability to check out what belongs to the worker and
what belongs to the person being supported. Congruence or genuineness is
vital in our working relationships. The capacity to be intuitive about
genuineness makes it all the more necessary for the worker or supporter to
recognize its importance.
Unconditional positive regard

Unconditional positive regard may also be described as acceptance. The
person is intrinsically valued as a human being and unconditional positive
regard is given without judgement of the person. It does not mean that the
worker or supporter necessarily likes or approves of the individual’s behav-
iour, but the person is accepted. There is a paradox in that when a person
feels that he or she has unconditional positive regard, and an environment of
warmth and acceptance has been created, then it is possible to challenge that
person in a constructive way.
Achieving unconditional positive regard is not easy and may bring us up
against our own prejudices. Giving unconditional positive regard requires
acceptance and may be a challenging experience.
Defensive, aggressive, vulnerable and conflicted persons require the
healing energy of unconditional positive regard if they are to discover
within themselves the enormous potentialities for growth with which
they lost contact perhaps in the earliest days of their existence. (Thorne
1992, p.38)
It is important to consider the meaning of unconditional positive regard to a
person. By intrinsically valuing the person and distinguishing the individual
from his or her behaviour there is more opportunity to develop a positive

working relationship and undertake quality work.
Empathy
Empathy requires more than sympathy and having similar feelings, it
involves sensing the person’s world. In describing empathetic understanding
Rogers said: ‘To sense the client’s private world as if it were your own, but
without ever losing the “as if ” quality – this is empathy…’ (1961, p.284).
The person’s world is adopted and there is experience of what it is like to be
that person in his or her world. However, whilst doing this the ‘as if ’ quality
is respected and an awareness of the separateness from the person is
maintained. Empathy requires the use of emotional engagement in under-
standing the person’s world; it does not mean having all the person’s
feelings. The person will instinctively know when there is empathy; there is
an equal feeling, a common human bond.
In looking at a social work value base and the use of empathy, Thompson
says:
…this is a very skilful activity, as it involves having a degree of control
over our own feelings whilst remaining open and sensitive to the other
person’s feelings. If we do not manage to achieve the former (a degree
of control over our own feelings), then we run the risk of becoming
emotionally involved at too deep a level, and also of exhausting our-
selves through emotional overload. (Thompson 2000, p.114)
Empathy is an important aspect of work with people with learning
disabilities. However able the person or however complex his or her needs,
the use of empathy is fundamental to the working relationship and the
understanding of the person.
RESPECT FOR PERSONS

Respect for persons is key to person centred work. Valuing the person and
treating the individual with dignity is fundamental. Respect for persons
should be an intrinsic part of everyday practice, part of empowerment,
participation and choice.
Shardlow explores fundamental moral principles when looking at social
work practice and how social workers act: ‘Within professional social work
practice, “respect for persons” is the most frequently applied principle.’
Shardlow also looks at its derivation: ‘As a moral principle, “respect for
persons” is derived from Kant’s moral principle of the categorical imperative’
(Shardlow in Adams, Dominelli and Payne 1998, p.28, emphasis as in

original). Thompson identifies the link between respect and the basis identi-
fied in moral philosophy. Thompson acknowledges the complex nature of
Kant’s moral philosophy and the basis of respect for persons:
…the basic point is quite a simple one really, namely the importance of
treating people with respect – not treating them in a way that you
would object to if other people treated you like that. (Thompson 2000,
p.113)
It needs to be acknowledged that within the legislative framework levels of
control operate and it may be difficult to achieve Thompson’s ideal. If
people are at risk of harm to themselves or others, it may be necessary to
place them in care. There may be limited or no choice of appropriate
resources and inappropriate placements do not realistically appear to
demonstrate respect for individuals. People’s choices, needs and wants may
be compromised by the structure that guides practice. Nevertheless, despite
these difficulties and conflicts, person centred work plays a role in everyday
practice. Congruence, unconditional positive regard and empathy are all of
importance when working towards equality in practice.
A person centred approach can be explored further by considering its use in
informing person centred planning.
PERSON CENTRED PLANNING

The person centred approach as outlined above differs from person centred
planning as discussed in the White Paper Valuing People: A New Strategy for
Learning Disability for the 21st Century (Department of Health 2001a). As
mentioned earlier, the former is a non-directive humanistic approach that
played a part in the development of social work in the 1950s and 1960s and
was developed from a counselling perspective. The latter is a concept that
places the person requiring care and support at the centre of the care
planning process. The underpinning ideas suggested by Rogers (1951,
1961) are useful in informing person centred planning. Although different,
both the person centred approach and person centred planning employ the
idea of the person being central. With the person as central it is proposed
that the support network will encompass the person to provide a ‘circle of
care’ to meet individual need. Resources and facilities will be tailored to the
individual in response to expressed needs. It is proposed that person centred
planning will work alongside the care management process.
A code of practice can be found through the work of the Michigan De-
partment of Community Health. This mental health code can be used to in-
form practice within the learning disabilities field:
A. Each individual has strengths, and the ability to express preferences
and to make choices.
B. The individual’s choices and preferences shall always be considered
if not always granted.
C. Professionally trained staff will play a role in the planning and
delivery of treatment and may play a role in the planning and
delivery of supports. Their involvement occurs if the individual has
expressed or demonstrated a need that could be met by professional
intervention.
D. Treatment and supports identified through the process shall be
provided in environments that promote maximum independence,
community connections and quality of life.
E. A person’s cultural background shall be recognized and valued in the
decision making process.
(Michigan Department of Community Health 1996, p.2)
The above code reinforces the importance of the person being at the centre
of the process. There are other explanations of person centred planning;
each provides a similar focus of the person being central in deciding,
planning and arranging the required care and support.
Essential lifestyles planning begins with the premise that for each
individual there will be a set of ‘non-negotiables’: key features of any
service that must be in place for the service to work. The list of
non-negotiables is developed in partnership with the individual and his
or her family or supporters and is then used as a basis for specifying the
service that will be needed. The process also looks for features that
would be ‘highly desirable’ (elements of the service that ought to be in
place, but which at a pinch, the person could manage without) and
‘desirable’ (features which the person would like, but are less critical).
(Simons 2000, p.55)
The process of person centred planning has been described as providing a
‘circle of care’, with the person being supported as central and the supporters
and facilitators surrounding the individual. All people involved work
together in a joint, multi-agency approach to meet the needs of the person.
This process draws together a diversity of service providers to ensure that the
best possible care package is provided. ‘Person-centred planning provides a

single, multi-agency mechanism for achieving this’ (Department of Health
2001a, p.5). The process should not be exclusive and should be able to be
used whatever the individual’s communication style. It is the importance of
the participatory nature of person centred planning that draws together so
many principles associated with care and support: anti-discriminatory and
anti-oppressive practice, advocacy, empowerment, participation and choice.
By definition person-centred approaches are meant to be participative;
the individual with learning difficulties has to be at the centre of the
process. Even for people without conventional ways of communicating,
‘listening’ to their behaviour will be a key to the process. By spending
time with the person, and really getting to know them, by talking to
people who know them well, by seeing people in different contexts, it is
possible to build up a picture of the issues that are non-negotiable for
them. (Simons 2000, p.55)
As the person centred planning process unfolds, often a personal book is
completed with the person and this is the planning book that would be used
throughout life. The book is owned by the individual as it is about his or her
life, needs and wishes. The book provides an ongoing record and the record
is envisaged as changing as the needs and wishes of the person change.
Changes recorded may be about the person, life experiences, relationships or
chosen activities.
As people experience new situations and opportunities, their wishes
and needs will inevitably change. Further, for people with complex
needs (particularly those for whom the non-negotiables may be diffi-
cult to establish), an initial person-centred planning has to be an ap-
proximation. By implication, therefore, person-centred planning has to
be a continuing and flexible process, with correspondingly flexible ser-
vices. (Simons 2000, p.55)
All people identified as important by the individual should be able to
contribute to the planning book. However, the book would only be shared
with others with the consent of the individual. The book may include factors
such as:
• personal details
• preferred communication methods
• people in the individual’s life
• life so far
• life now
• things that are liked
• things that are disliked
• things important to the individual
• dreams
• hopes
• wishes
• support needed
• goals
• action plan.
(Adapted from personal planning material from:
South and East Belfast Health and Social Services;
Hackney Social Services; Newham Community NHS Trust)
It will be difficult to assess the success of person centred planning until the
approach develops further. The process will run alongside care management
and it should become clearer how the two would work together as time
progresses. The principles of person centred planning are positive, making
people with learning disabilities central and in control of their care.
Timescales, levels of commitment, and services, resources and funding
available will all affect the implementation and success of the approach. This
concept may begin to bring a greater level of equality within society to a
group of people who largely remain marginalized.
A person centred approach and person centred planning are an important
part of the way care and support work is undertaken; however, as with many
approaches, difficulties may be faced. We now intend to highlight some of
the potential difficulties that may be found in practice.
DIFFICULTIES WITH A PERSON CENTRED APPROACH

It could be argued that in care and support work congruence is little more
than an ideal. It may appear as something that is not achievable within the
power orientated structure of care and control. The titles used such as social
worker, nurse, carer and supporter all hold a level of power either perceived
or real. The nature and role of care provision, delivering the services required
or locating and funding the appropriate resources, may be seen as having a
power imbalance. Nevertheless, congruence plays an important part. It may

not be possible to eradicate fully the power of the carer or supporter;
however, an awareness of the need to achieve congruence can highlight the
issues of power involved. This in itself guides us towards seeing the person
as central and endeavouring to achieve equality within the given
framework.
The role of care and support should include unconditional positive re-
gard as an intrinsic part of practice. The occasion may arise when work is car-
ried out with someone who, for example, has committed a serious sexual
offence or grievously injured someone. Acceptance of the person, whilst not
accepting his or her behaviour, may be difficult to achieve and the worker’s
values challenged. The worker may achieve acceptance of the individual yet
some people in the wider society may still wish to exclude the person.
Empathy is another important aspect of work with people with learning
disabilities. However able the person or however complex his or her needs,
the use of empathy is fundamental. The sensing of a person’s private world
may prove to be difficult. Trying to sense and understand how someone
whose ability or methods of living or coping differ from our own may be far
from easy. Aspiring to achieve empathy in practice is an important part of the
working relationship and of understanding the person being supported.
The use of congruence, unconditional positive regard and empathy are
all key aspects that should be an intrinsic part of everyday care and support.
They are basic ideas that go towards a genuine respect for the individual.
We have highlighted some aspects of a person centred approach and
have suggested some of the difficulties in practice. Concerns about the use of
a humanistic approach in social care practice have been raised by others.
Payne (1991) reinforces the difficulties in using humanistic approaches in
the bureaucratic and control orientated framework that social care and
support operates within. Banks states that humanistic views are ‘under-
developed theories for social work practice’ (1995, p.61), explaining this in
more depth thus:
…the conditions within which social work is actually practised do not
lend themselves to the use of approaches and techniques based on
humanistic values or assumptions about users as rational agents. Users
are usually people who are in difficulty, facing crisis, in need of help and
therefore less capable of rational decision-making than they or others
might be in different circumstances. Social workers are often acting
within the constraints of the law, agency policy, limited time and
resources, and bureaucratic procedures that are more conducive to
treating the user as a ‘case’ than as a person. (Banks 1995, p.61)
An awareness of the restrictions and obstacles that stand in the way of using a
person centred approach will offer support in the challenging of such
barriers. Rogers’ idea of ‘personal power’ may help in this challenge. Rogers
suggested the use of ‘personal power’ in community work as a way of
enabling the person to challenge organizations and achieve political change.
Each person holds ‘personal power’ and the individual can be enabled to use
this to achieve change in the surrounding structures (Rogers 1977).
The development of trusting relationships is a key to success in many sit-
uations. However, consideration needs to be given to the risk of dependency
within working relationships. This could be dependency on either side,
dependency by those being supported or by those providing support.
Working relationships should be developed in a way that enables, but
minimizes a dependency risk. Joint working with others within a team,
through other agencies or support networks, may be a way of achieving this.
The core conditions of congruence, unconditional positive regard and em-
pathy should be striven towards in day to day practice as a way of achieving
respect for each person.
We will illustrate the use of a person centred approach in practice using two
case studies.
CASE STUDY ONE

Jim lived with five other people in a voluntary sector project in the
community. Each year the residents and staff went to the same holiday resort
for two weeks. When the subject of booking the holiday was raised in the
residents’ meeting, Jim said he did not wish to go with the group. He said
that he and his friend Eric had decided to go to a holiday village instead.
At the meeting questions were asked by both residents and staff about
how Jim thought he would cope in a new place, particularly without staff
support. Some staff were concerned about Jim’s communication abilities and
whether he would be able to make himself understood by strangers. Much
was said about the risks involved and the fact that no one in the group had
done such a thing before. Jim remained adamant; he wished to do something
different without the whole group and staff. Jim said he would talk to his key
worker, Dean, about this later on his own.
By respecting Jim and his wish to do something different away from both
other residents and staff, Dean and Jim were able to look constructively at
the idea of the holiday. In seeing the person and not the potential impedi-
ments, Dean was able to help Jim think about various aspects of the holiday
such as travel, catering, managing money and mobility. They were then able
to look at ways in which Jim could be supported.
Jim recognized there were risks involved in going on holiday without
staff. Dean respected Jim’s ability to make such a decision and take account-
ability for it. Dean had to work with several staff members who were con-
cerned about Jim’s holiday plans and about his right to try something new,
providing the risks were assessed. The team were then able to look at the re-
strictions and barriers placed in Jim’s way and at how he could be enabled to
fulfil his wish.
CASE STUDY TWO

Kevin and Eddie had a fight in their group home; following this, staff had
supported them to work through the situation and had reached apparent
resolution. The next day, Eddie reported to Amina, a support worker, that
framed photographs of his family had been smashed. He accused Kevin of
doing this. Amina said to Eddie that she would talk to everyone in the house
and try to find out what had happened. Amina saw each person separately to
maintain confidentiality.
When Amina saw Kevin she explained the situation and they agreed to
meet. Amina explained that Eddie was very upset by some smashed family
photographs and asked Kevin if he knew anything about this. At first, Kevin
said he did not know anything, but later said he had broken the pictures. He
told Amina that he had done this as Eddie had called his sister names and he
had been upset and angry.
Amina asked Kevin what he thought should be done about the situation
and Kevin suggested ways he could make amends. Amina enabled Kevin and
Eddie to discuss their differences, apologize for inappropriate actions and
agree to discuss any future concerns to enable a resolution to be found.
In using unconditional positive regard in her work with Kevin and Eddie,
and by respecting them as individuals, Amina enabled them to put forward
their viewpoints and discuss their feelings. Amina was aware of the power
accorded by her position. She did not accuse or judge, she actively listened
to what both individuals said. Whilst not approving of some of the
behaviour involved, Amina was able to separate this from the individuals.
Through relationships built on trust and respect, both Kevin and Eddie were
able to talk about what had happened and discuss their part in it. In this
work, Amina was being congruent; her feelings matched her responses. She
acknowledged her feelings of unhappiness at some of the behaviour and her
appreciation of the individuals’ wish to sort it out appropriately.
CONCLUSION
We believe that person centred work and its underpinning values are
fundamental to the care and support role and are central when working with
people with learning disabilities. By ensuring respect for the person and
working in a non-judgemental and accepting way, we have the basis for a
trusting relationship. By being congruent, giving unconditional positive
regard and being empathetic, we hope to create an environment where the
person feels safe and is able to develop. The use of person centred planning is
a positive way of working with people with learning disabilities to identify
their aspirations, wishes and goals. The process enables people to be central
in making decisions about the care and support needed to achieve the
identified goals. A person centred approach can be used in conjunction with
many other theories; in particular, respect for persons is fundamental to
anti-oppressive and anti-discriminatory practice.
Key points
• A person centred approach is often associated with counselling.
• The ideas and terminology used are relevant in the learning
disabilities field.
• Respecting the person is the key to person centred work.
• The approach moves away from a directive method of working
to a non-directive one.
• The person being supported is seen as central, with a focus on
seeing and hearing the individual.
• The approach is underpinned by three core conditions:
congruence, unconditional positive regard and empathy.
• Person centred planning is underpinned by the concepts of a
person centred approach.
• A person centred approach is not infallible; issues of power,
funding and legislative control may all challenge its
underpinning principles.
BEHAVIOURAL APPROACHES
INTRODUCTION
Behavioural approaches provide some understanding of the various ways
that behaviour can be learnt and how it can be changed, modified or
adapted. Behavioural approaches provide methods of working that can be
used to increase behaviours that are considered desirable and decrease or
eliminate those considered undesirable. In some situations, a behavioural
method of working can be useful and supportive, in others controlling and
possibly manipulative. Potential aspects of oppression or discrimination
through the use of behavioural approaches are highlighted in this section.
The power the worker holds requires careful consideration, as does the need
to work openly and in partnership with the individual concerned.
Some behavioural approaches and aspects of their use will be explored
to provide an understanding of the use and power of behavioural theory. The
theory will be put into practice using two case studies.
WHAT IS MEANT BY BEHAVIOUR?

One definition of behaviour is: ‘Behaviour – manner of behaving or
conducting oneself ’ (Collins Dictionary 1986, p.136). How people behave or
conduct themselves is only one part of the larger concept of a behavioural
approach; other aspects need to be considered. Behaviourism is defined as:
‘A theoretical approach to explaining human development and activity, the
central belief of which is that behaviour is the outcome of learning’ (Thomas
and Pierson 1996, p.39). Behavioural assessments may be used to gain a
more comprehensive picture when an individual’s behaviour is considered.
A behavioural assessment requires the systematic observation of a person’s
behaviour and usually a detailed account of what is seen is recorded. The aim
of the assessment is to analyse why a person is behaving in a certain way. If
the behaviour were considered acceptable then the use of a behavioural
approach would not usually be required. However, if in the opinion of the
workers, support team or society, the behaviour was considered in need of
change, then a method of achieving this may be sought through such means
as behaviour modification. ‘Behaviour modification – A method of teaching
people to change their behaviour by the systematic use of reinforcements
and infrequently, low-level forms of punishment. It is based in Learning
Theory’ (Thomas and Pierson 1996, p.39). People with learning disabilities
sometimes behave in ways that conflict with society’s norms and thus may
not be accepted. Aspects of people’s behaviour may then be worked with by

using the approaches and methods discussed in this section.
BEHAVIOURAL APPROACHES IN MORE DETAIL

Behavioural approaches differ from humanistic, person centred work. Whilst
person centred work focuses on the individual’s thoughts and emotions,
behavioural work focuses on the individual’s conditioning and behaviour.
Behaviourism…is based on a belief that feelings of distress or neurosis
come about through faulty conditioning and that what needs to be
changed is maladaptive behaviour. It stresses the importance of observ-
able, testable, measurable, reproducible and objective behaviours: we
are as we behave. As such, unlike psychoanalysis and humanism,
behaviourism is not primarily concerned with the meaning and under-
standing that human beings ascribe to their thoughts and feelings.
(Trevithick 2000, p.30)
Behavioural approaches have developed from a psychological underpinning.
Often behavioural work is undertaken over a short term, being time limited
in its application. The focus of the work is on the here and now and how to
achieve change in behaviour. The change is often achieved through the
worker’s input and the client may have little influence on decisions about the
process. On occasion, the work sometimes appears to be undertaken on the
person rather than with the person. The principles behind a behavioural
approach are identified by Gambrill (1995). They include acknowledge-
ment that all behaviour is learnt and so in principle can be unlearnt. The
change needs to be achieved through tried and tested methods. It should not
be presumed that as a method has worked for one person that it will work for
the next; each situation must be seen as individual. Gambrill suggests that
the use of this approach requires warmth, empathy and a genuine
understanding to enhance its chances of success. Behavioural approaches
and therapies can be used in a variety of ways. Payne (1997) suggests four
different approaches: ‘respondent learning or classical conditioning; operant
conditioning; social learning; cognitive therapy’ (Payne 1997, p.116). We
will now briefly explore some aspects of these approaches.
Respondent learning
Respondent learning is also sometimes referred to as ‘classical’ or Pavlovian
conditioning (Pavlov 1927). This type of behavioural approach is pre-
dominantly used when change in a person’s behaviour is required, speci-
fically in behaviour over which a person has little conscious control, such as
reflexes, anxiety and anger. Respondent learning uses a variety of methods
including conditioning and counter-conditioning.
For children, the control of bed wetting can be effected through the pro-
cess of respondent learning. A buzzer is connected to moisture pads in the
bed and the buzzer is activated when the child urinates. The sound of the
buzzer wakes the child and alerts him or her to the need to use the toilet.
Gradually the child becomes conditioned so that when the bladder is felt to
be full then he or she wakes up prior to the buzzer sounding. In this situa-
tion, the controlling of what a child can learn is both acceptable and helpful.
Operant conditioning
Operant conditioning is sometimes referred to as ‘instrumental’ or
Skinnerian conditioning. Skinner (1938) is the psychologist credited with
the development of theories using the approach. Unlike respondent learning
that focuses on involuntary behaviour, operant conditioning is concerned
with bringing about change in voluntary behaviour. This is achieved by
manipulating the factors that lead up to the behaviour (called the ‘ante-
cedents’) and those that follow the behaviour (the ‘consequences’). This is
often referred to as the ‘ABC’ of behaviour. The theory suggests that a person
learns to do, or refrain from doing, something by experiencing the con-
sequences of the behaviour in certain identifiable situations. An increase in
the frequency of the desired behaviour can be achieved by rewarding it,
referred to as reinforcing, and the behaviour can be decreased by ‘punishing’
or ‘extinguishing’ it. Different types of ‘reinforcement’ and ‘punishment’ are
used in the process:
• ‘Positive reinforcement’ is used where desired behaviour is
increased by positively rewarding it. A reward or reinforcement,
such as a trip out, is offered following work towards achieving a
desired outcome.
• ‘Negative reinforcement’ is used to reinforce desired behaviour by
stopping something unpleasant happening; thus, for example,
‘children may keep quiet if only to avoid the pain of being shouted
at’ (Coulshed and Orme 1998, p.157).
• ‘Punishment’ is used where undesirable behaviour is decreased by
punishing it. An example of this could be a person being asked to
leave a communal area when undesirable behaviour is manifest
there. Undesirable behaviour may also be decreased by stopping
something pleasant happening. For example, a person being asked

to leave a group that he or she enjoys when the person’s
behaviour is considered disruptive to the group.
• ‘Extinction’ is used when behaviour has been positively reinforced
and the reinforcements are then taken away.
Positive reinforcement of the desired behaviour is both constructive and
affirming and involves some kind of pleasurable experience for the in-
dividual involved. A consequence of this approach may also be that the more
time the individual spends behaving in the desired or socially valid way, then
the less time will be spent behaving in undesired ways. Punishment is aimed
at reducing undesirable behaviour but does not teach alternative, acceptable
behaviour. In his discussion of the use of punishment in behaviour therapy,
Barker asserts that ‘punishment should only be used in conjunction with
some positive reinforcement system or as a last resort in truly intractable
cases’ (Barker 1985, p.141). Thus, if punishment were to be used at all, then
it would need to be used advisedly and sound reasons would be needed for
its use in preference to reinforcement. In terms of valuing and respecting the
individual, we believe that methods that are affirming and rewarding are
preferable to methods that negatively reinforce or punish.
Operant conditioning and behaviourism have led on to applied behav-
iour analysis, an approach geared to individuals and involving individually
tailored treatment programmes. ‘Applied behaviour analysis is distinguished
by its methodology for evaluating treatment effects. The focus is on intensive
study of the individual subject’ (Corsini and Wedding 1989, p.242).
One of the main differences between traditional psychology and
applied behavioural analysis is that most traditional psychologists
analyse human behaviour by using group averages. In doing so they can
lose the sensitive touch that is necessary in the analysis of individual
behaviour and in the arranging of individual learning environments. In
contrast, applied behavioural analysis has developed procedures specif-
ically geared to measuring individual differences in behaviour. This has
led to behaviour analysts becoming experts in tailoring individualised
treatment programmes. The most important word here is ‘tailored’. As
with any suit of clothes, those that fit best are those that are specifically
designed for the person who will wear them. (Keenan, Kerr and
Dillenburger 2000, p.17)
Treatment programmes using operant conditioning such as applied behav-
ioural analysis seek to develop socially valid and acceptable behaviours and
are sometimes used to work with people with challenging behaviour.
Social learning
Social learning is used to help people modify their behaviour by modelling
how to react to and learn from behaviour presented (Hudson and
MacDonald 1986). For example, this approach is sometimes used when
people move from institutional to community living. For a person to live
within and be part of the community there are certain roles and expectations
involved. To an extent, these can be learnt through a social learning process.
Behaviour can be learnt by observing the behaviour of others (Bandura
1977). The tendency to learn from others is increased if:
• the person modelling the behaviour has high standing with us
• the person modelling the behaviour is moderately similar to us
• the person sees their behaviour being reinforced by others as
positive
• the person has a chance to practise the behaviour soon after seeing
it modelled
• positive behaviour is reinforced.
This can be achieved if the worker supporting the person:
• defines the desired behaviour clearly and ensures that attention to
detail is given
• gives or arranges a demonstration
• encourages the person to copy and practise the behaviour
• gives feedback and reinforcement
• provides further support in the process if required.
(Developed from the concept of modelling:
Hudson and MacDonald 1986)
Social learning differs from other ‘strict’ non-cognitive therapy theories in

that it assumes unobservable mental processes. Such processes include the
ability to store information and to anticipate outcomes. It is a method often
used in the person’s environment and is used when modelling is being
undertaken as part of social skills training. It is worth considering the power
held by the person who is the model. The fact that the model may come from
a different class or culture could influence the appropriateness of the social
learning through a difference of values and beliefs.
Cognitive therapy
Cognitive therapy works on the premise that thinking, feeling and
behaviour are interconnected. In this work, unhealthy emotional responses
are seen as originating in the way people perceive, interpret, and are
influenced by the world. The approach aims to help the person see more
clearly, to interpret more accurately and to deal with issues rationally. This is
achieved through exploring and changing the way a person thinks. Thus,
cognitive therapies are interventions aimed at alleviating emotional distress
or dysfunction due to thinking errors based on beliefs and assumptions. If
the thoughts, perceptions and interpretations causing the emotional distress
are dealt with, then the emotional response will cease to cause problems. The
client and therapist form a collaborative relationship and between them
formulate what the problem is. Unhelpful thinking is examined and
questioned and a range of techniques is used to work towards the identified
goals. Various texts can be found that explore this area in more depth.
Material looking at conditions such as anxiety, neurosis and depression was
drawn together by Ellis (1962), while the separation between mind and
behaviour has been explored by Sheldon (1995). The links between
emotional disorders and cognitive therapy were studied by Beck (1989).
Scott and Dryden (1996) provide a classification of four cognitive thera-
pies that can be used: coping skills; problem solving; cognitive restructuring;
and structural. Thomas and Pierson describe cognitive therapy as ‘a form of
therapy that aims to change the way people think about themselves and their
environment’ (1996, p.76). Research has shown that cognitive approaches
are valid (Sheldon 1995). They can be used when dealing with emotional
problems such as depression, anxiety and anger control. However, the suc-
cess of cognitive approaches in the learning disabilities field is not so well
documented. It could be questioned whether they are suited for use with all
people with learning disabilities, as the process of thought may be impaired
to an extent which could prohibit success. Expert opinion, careful planning
and joint working would therefore be critical when considering the appro-
priateness of cognitive behavioural therapies within the learning disabilities
field.
THE USE OF BEHAVIOURAL TECHNIQUES

Behavioural techniques sometimes work well in certain situations. With
children, behavioural techniques may be used, for example, to work with
conduct disorders, issues of toileting and phobias. With adults they may be
used in anxiety problems, sexual problems or some family problems.
Additionally, the techniques may be used with adults and children with
learning disabilities for skills acquisition and issues of challenging
behaviour. Consistent and accurate use of the approaches is required for
their success. These techniques are often used in specialist settings; these
include hospital and residential units, child and adult mental health centres
and establishments for children and adults with behavioural problems.
Some uses of and reservations about behavioural work have been ex-
plored above. The process is essentially about changing the behaviour of the
person. The approach is used to bring about changes in the person’s behav-
iour and we suggest it is important that these changes are wanted by the indi-
vidual. Payne reinforces some concerns:
There are also objections on ethical grounds, since the worker manipu-
lates behaviour rather than it being under the control of the client.
When using a behavioural approach the power difference could be used
inappropriately in the control of an individual. This could lead to be-
haviourist techniques imposing workers’ wishes on unwilling clients, in
pursuit of social or political policies which could, at the extreme, be
used for authoritarian political control. (Payne 1997, p.123)
The person should be aware when a behavioural approach is being used and
should give permission for its use. Watson (1980) in Payne suggests:
The only ethical position, which maintains clients’ rights to self-
determination, is to use the technique only where the client’s own
purpose is to free themselves from behaviour; for example, where it is
compulsive, and clients cannot, but wish to, control themselves. (Payne
1997, p.123)
We acknowledge that this may not be viable in all situations. However, it
cannot be ignored that power imbalances will exist between the person and
the worker.
As highlighted above, there are many different approaches to behaviour
therapy and ways of changing an individual’s behaviour. Behavioural
approaches contrast with the humanistic, person centred approach explored
in the previous section, which works with emotions and feelings. However,
person centred attributes such as respect, warmth and empathy should be
inherent to behavioural approaches. To illustrate some of the contrasts in-
volved we now draw some brief comparisons between one behavioural ap-
proach, cognitive therapy, and a person centred approach.
Cognitive therapy Person centred approach
directive, therapy led non-directive, client led
an agenda is set no agenda is set
the focus is on behaviour the focus is on emotions

and actions
goals are set no goals are set
task orientated not task orientated
homework may be set homework is not set
previous session is reviewed previous session is not necessarily

reviewed or even referred to
the therapist may give praise or part of unconditional positive regard

censure while considering agreed is that the therapist does not give
homework praise or censure; the client feels
valued for being him or herself
This brief outline of some of the contrasts between the two approaches
begins to highlight some of the aspects of choice, power and control
involved in them. Similar comparisons could be made with other behav-
ioural approaches. The differences identified will need careful consideration
when any work is undertaken. Working approaches can be informed and
underpinned through careful use of a sound value and ethical base, as
discussed at the beginning of this chapter. We will now go on to consider the
use of behavioural approaches in two case studies.
CASE STUDY ONE

Maisie had lived in an institutional setting for most of her life. She had
moved from a large hospital to a hostel housing 25 people. Maisie had later
decided to move on to supported living in the community. Before moving to
her new accommodation, Maisie lived for 12 months in a training flat where
she learnt new skills and gained knowledge of local facilities. Through this
experience Maisie also improved her confidence and self-esteem. During
this time Maisie learned more about aspects of life such as managing money,
housekeeping and accessing community facilities.
Maisie worked mainly with two support workers, Mary and Sally, who
themselves also lived in the local community. She liked both women and had
a good rapport with them. Maisie prioritized what she needed to learn and
how to achieve this. As part of this plan, Maisie wished to access a leisure
centre and was supported in doing so. On several occasions, Maisie accom-
panied either Mary or Sally to the centre and watched how they used the fa-
cilities, then followed their example. Through this Maisie quite quickly
gained the confidence to go and use the facilities on her own.
During her time in the training flat, Maisie was also supported in making
choices about her new lifestyle, including her daily occupation, where to
shop, how to pay her rent and how to spend her leisure time.
As part of her preparation to move into supported community living, Maisie
worked with Mary and Sally. There was a plan made, discussion beforehand
and encouragement for Maisie to learn and participate. Part of the social
learning undertaken by Maisie was through Mary and Sally’s modelling of
behaviour. This was reinforced by their good working relationship with
Maisie and the fact that they too lived in the local community. Maisie’s
learning was also strengthened by being able to practise the behaviour
modelled. Mary and Sally reinforced the social learning process through
praise and encouragement.
CASE STUDY TWO

Samuel lived in a residential home housing six adults. The home had an
adjoining respite care unit for four people. Samuel used sign language to
communicate and the home was a signing environment. It had been noticed
that Samuel had become agitated on several recent occasions. When staff
explored whether there was a pattern to these bouts of agitation, it appeared
they occurred on Wednesday evenings on a regular fortnightly basis. The
staff decided to set up a systematic observation of Samuel each Wednesday
for six weeks. The intention was to note any differences and particular events
leading to Samuel’s agitation.
Following this systematic observation, it became apparent that the eve-
nings Samuel became agitated coincided with Vikram, a man from the re-
spite care unit, joining Samuel’s group for tea. Vikram used sign language,
but during his visits the others in respite care did not sign. The visits had
been set up with the residents’ permission to help Vikram feel more included.
However, Vikram’s presence was triggering Samuel’s agitation and this had
to be resolved.
Having communicated with Samuel and systematically observed what led up
to his agitation, the situation became clearer to the staff. They noted that
Wednesdays were Samuel’s nights to cook, which he enjoyed. There were no
problems on the Wednesdays that Vikram was absent. When Vikram came
for tea, Samuel did not want him in the kitchen as he enjoyed the staff
member’s individual attention whilst preparing the meal. When he became
agitated, he again received individual attention from the staff member. In
terms of operant conditioning, the antecedent to Samuel’s behaviour was the
presence of Vikram. The consequence of his agitation was receiving the staff
member’s undivided attention.
Once this was clear, the staff were then able to work with Samuel on this
issue. They recognized it was Samuel’s home and reminded him he and the
other residents had been asked if Vikram could come for tea. Samuel knew
Vikram liked to see him and the other residents as they could sign to him. Af-
ter discussion, Samuel and the staff agreed that, as usual, they would spend
time individually with Samuel whilst preparing tea and Vikram could arrive
later in time to eat. The staff then used the positive reinforcement of a game
of cards after tea to reward Samuel if he did not become agitated by Vikram’s
presence. The staff explained their intentions to Vikram, saying they wished
to find out what was upsetting him. They treated him with respect, warmth
and genuine understanding whilst using a behavioural approach which fos-
tered engagement and enabled rapport.
CONCLUSION
In some situations, the behavioural approach is beneficial: ‘Behavioural and
cognitive approaches are clearly valid and widely applicable forms of
treatment whose effectiveness is supported by research’ (Payne 1997,
p.135). However, behavioural work uses a very structured approach and
sometimes this may not sit well with the empowering and more client-led
approaches often associated with social care. Whatever the intervention
used, the worker holds an element of power. With behavioural approaches,
the power of the worker or therapist is both visible and evident. Some
nurses, social workers and care workers may struggle with the idea of the use
of some behavioural techniques as they seem contrary to their value base or
code of ethics. To change a person’s behaviour and responses to given
situations may sit less easily than exploring the feelings and emotions
involved and working through them. Thus, the contrast between person
centred and behavioural approaches becomes important and the power and
control elements require careful thought. However, not to intervene may be
a decision in itself, and this too holds power. Sheldon is potent in his
assertion concerning this in relation to behavioural work:
In which case, given that lots of things are already happening, not inter-
vening is an influential decision just as much as intervening is. The deci-
sion not to intervene, or excessive procrastination about the issues
raised by intervention, means that the behaviour of the individuals con-
cerned is governed by forces which the therapist has decided not to try
to control; not to replace with other, hopefully more benign influences;
and which he has not taught the client how better to control himself.
Sometimes it is right, or judicious, or necessary to stay out of a case, but
this should be recognized as to some extent an abandonment of the cli-
ent to other controls, and not as a simple decision not to seek control.
There are no vacuums in social life and some influence or other will pre-
vail. Therapeutic ‘sins of commission’ must therefore be weighed care-
fully against equally damning ‘sins of omission’. (Sheldon 1982, p.224)
Whilst some of the dilemmas concerning power and control are not unique
to behavioural work, the nature of the techniques and their effectiveness in
bringing about change call for those involved to apply high ethical
standards in their work.
Key points
• Behavioural approaches have been developed from
psychological perspectives.
• Behaviour can be learnt and also unlearnt.
• There are various theories that help explain how the learning of
behaviour is undertaken.
• There are theories that explain how behaviour can be changed
by using structured theoretical approaches.
• In certain situations behavioural approaches work well.
• The person deciding to change behaviour holds much power.
• Careful consideration should be given to the reasons behaviour
changes are required.
• If a person’s behaviour is being changed to fit the individual
into social norms, the appropriateness of the norms must first be
carefully considered.
• The concern that a person’s behaviour could be changed
without them realizing should not be overlooked.
• Although a person centred approach appears to contrast with
behavioural approaches, many aspects of behavioural work
should be underpinned by the same principles of a person
centred approach.
9
Practical Theories and Methods
INTRODUCTION
Whether a social worker, nurse, support worker or a person who provides
care for people with learning disabilities, the support afforded is part of an
ongoing process. The work may take place in a residential, day care, hospital,
work or home setting. Whatever the role or setting, different methods of
working are often used without consideration of the theory that underpins
those methods. It would seem illogical to go about each day thinking, ‘What
theory shall I use now?’ However, by having a working knowledge of
theories and an understanding of their use in practice, support and care work
can be enhanced.
There are many different theories that can be used to inform and under-
pin social and health care work. In this chapter we will explore four of the
practical theories and methods that are often used in day to day work:
• systems theory
• task centred theory
• role theory
• crisis intervention.
Each theory/method may be used on its own or combined with others to
inform practice. We will explore this further by briefly introducing the four
theories/methods and then go on to present a practice based case scenario.
This case scenario will set the context of how practical theories and methods
can be used together to inform day to day practice. Following the case
scenario each theory/method will be explored in more depth to aid
understanding and provide insight into their use.
A person may have family, friends, work colleagues, attend social clubs
or day services – people and places that are important to the individual.
These people and places are all part of the systems that surround each of us
177
during our lives. If an individual’s systems are identified this may help to
place the person in the overall context of his or her environment. This en-
ables a more holistic view of the person whilst retaining the individual as the
key focus. Later in this chapter we will consider the principles of systems
theory and its application in practice.
If difficulties or problems are faced then methods of solving these prob-
lems are sought. Sometimes it appears easier to sort out the difficulties peo-
ple face for them rather than with them. A task centred approach is a method
of working where responsibilities are jointly negotiated and manageable
tasks are taken on by the person being supported and the supporter.
Through this process of shared responsibility the person is enabled to take
control of the situation. This approach would not work in every case but an
understanding of its principles would inform a decision for its use.
How individuals act in different situations will depend upon their role
and the roles of others at that particular time. A person may behave in one
way when with friends and in a very different way at work, as a family mem-
ber or whilst out shopping. Other people’s roles may affect how an individ-
ual acts. Role theory provides an interesting explanation of the different
roles and consequent conflicts that may occur in day to day life.
It is often said that a crisis has occurred, but how is it decided that a per-
son is in crisis? Is it really the person, or is it the staff or service that is in cri-
sis? Insight and practical guidance can be gained by exploring the principles
and use of crisis intervention theory.
The following case scenario will highlight aspects of the above four
theories with the aim of drawing them together to demonstrate their
practical use.
CASE SCENARIO COMBINING FOUR PRACTICAL

THEORIES AND METHODS
Charlie lived in his own flat within the local community. Two mornings a
week he helped out at the local coffee shop and on other days he attended
the local day centre and college. Charlie could manage most things on his
own but required support in some aspects of his day to day living. Charlie
found washing and cooking difficult and sometimes overspent when he
went shopping. Each Friday Charlie met with Chris, a community support
worker, who helped him with some household tasks and shopping.
Over a period of two weeks, Chris noticed that Charlie appeared to be
upset and angry. He was not interested in undertaking their normal Friday
activities and would not discuss issues worrying him. On the following
PRACTICAL THEORIES AND METHODS 179
Monday, Chris received a telephone call saying that Charlie had not arrived
at the coffee shop and the staff were worried about him.
Chris tried to telephone Charlie but there was no response. Chris tele-
phoned Charlie’s family and other people known to Charlie including staff
at the day centre, college, local shop and at the doctor’s surgery. All of these
were part of the ‘systems’ surrounding Charlie – his family, workplace,
friends and those in community services. An awareness of these systems en-
abled Chris to network with others to try to locate Charlie.
Some time later, Chris received a call from the local resource centre say-
ing that Charlie had just arrived there and was asking for Chris. Chris went
to pick up Charlie and they started to talk through the situation. Charlie was
unhappy at the coffee shop as he was only ever allowed to wash up and
wanted to do other jobs. He also said he was unhappy with some of his
groups at the day centre. Chris worked with Charlie to identify ways that the
situation could be dealt with: talk to the coffee shop manager about doing
other work, talk with the key worker at the day centre, look at other options
for day care. Chris enabled Charlie to identify what was most important to
him and then make a list of things to do. Charlie agreed to do some tasks and
Chris others; a ‘task centred approach’ was being used.
Chris thought about Charlie’s ‘role’ at the coffee shop and how Charlie
saw himself. Chris also considered how Charlie might be viewed by others
at the coffee shop as the ‘washer up’. Charlie wanted more than this, he
wanted to be thought of differently. Role theory provided a way of thinking
about the role expectations of Charlie and the other staff and how these
could begin to be addressed.
Chris considered Charlie’s support systems, looked at his role in the cof-
fee shop and with him jointly agreed tasks to work towards, thus averting a
potential situation of crisis. On this occasion, a proactive approach avoided a
crisis. If this had not been possible and Charlie had been in a crisis situation,
then crisis intervention theory would have provided insight and guidance.
We will now go on to explore each of the theories/methods highlighted in
the scenario in more depth in the following four sections.
SYSTEMS THEORY
INTRODUCTION
In this section we will consider the use of systems theory. This will include
general and ecological systems theory – both sociologically based theories.
Systems theory is a diverse discipline; however, we will be focusing on parts

relevant to social and care work. First, we will explore what is meant by a
system. This will be followed by a brief exploration of where systems theory
originated. We will go on to examine the way that systems theory can be
used to inform practice, and examples of its use will be given in two case
studies.
SYSTEMS
A system can be described as a set of objects, thoughts or feelings that are
interdependent and integrated, so that together they function as a single
unit. The word ‘system’ is frequently used in everyday life; for example, a
computer system. A computer system requires a keyboard, monitor, power
unit and printer to be a complete system. Each part on its own is an
individual component and these components can only produce something
meaningful when they work in relationship with each other. Each unit
cannot function as a computer system on its own. This generalized expla-
nation of a system can be transferred to examine further the systems that
surround each of us.
In life we are all surrounded by systems that affect us in one way or an-
other. These systems may include areas such as work, family and friends.
Each one is, to an extent, related to the others; if one area (or system)
changes, the other areas may be affected. The impact of changing systems
can be explored. For example, the loss of a friend through bereavement may
affect a person’s work, social life or relationships. Systems change, however,
and as the individual becomes used to the loss over time adaptation usually
takes place. This will be explored further later in the chapter.
THE BACKGROUND TO SYSTEMS THEORY

There are various suggestions as to the origin of the systems approach. These
are as diverse as from engineering (De Board 1997) to biological theory (von
Bertalanffy 1971). Each approach has a similar core feature running through
it: the idea that something is made up of many parts and each part plays a
role in the overall structure. An example of this from an engineering
perspective is molecules, as component parts, forming metals and these
metals subsequently forming the construction of, for example, a bridge.
From a biological perspective, the component cells in the organs of a body
and each cell’s part in the overall system of the body form a complete living
person.
The systems approach that is used in social work has close links to the
general systems theory (von Bertalanffy 1971). This approach considered
that all organisms are part of systems, each being composed of micro-
systems and sub-systems, and in turn each part belonging to a super-system.
The human body can be likened to a super-system; it has need of a heart,
lungs, brain, kidneys and liver as major sub-systems. It also has a circulation
system comprising of fluids and cells, which form part of the micro-systems.
Each part is individual but reliant on the other parts to function as a human
body.
The theory of sub-systems and super-systems can be transferred and
used when considering social systems. Not only do individuals have their
own biological system but are also part of social systems. A person’s social
system may comprise friends, family, neighbours, colleagues and groups. It
also comprises the other aspects of a person’s place within society such as
local, community, work and social settings.
In the late 19th century some social surveys were carried out. Joseph
Rowntree looked at the influence of aspects of society and, in particular, the
impact of poverty (Rowntree 1901). These studies started to highlight that
people were affected by the systems that surrounded their day to day life and
were also part of a wider systems structure. A person may be living in poverty
and this may be caused by various factors such as the lack of family income
or the size of the family. This may affect the person’s housing situation and
the health of those within the home. In turn, the health factors may affect
working capabilities; the implications are immense. Change in one system
can have impact on the other systems. Consideration of the systems that
operate around a person enables the person to be seen as a ‘whole’ (Hanson
1995).Thus this does not ignore parts of a person’s life that may be critical
and influential. The person is considered as part of, and within, the
surrounding systems.
We will now look at a different aspect of the systems approach. Consider
that each system is individual; it has a boundary surrounding its physical and
mental energy. This energy may be exchanged with other systems and when
this happens these are called ‘open systems’. If a system cannot exchange
energy with others then it is a ‘closed system’ (Siporin 1980). This can be
considered further by looking at the work of Greif and Lynch. They provide
a set of concepts that offer an explanation of how systems work: ‘Input,
throughput, output, feedback loops, entropy’ (Greif and Lynch 1983). The
input is the energy being fed into a system. Whilst researching this book, the
information we read was our input; this affected how we understood the
theories that we have written about. The information we found was
considered and used as our throughput, as it enabled subsequent under-

standing of the subject to increase. The chapters written are our output – the
result of the input and throughput. As this book is read and thought about,
the issues raised and discussed, a feedback loop starts to take place. Informa-
tion is taken in, thought about, shared with others and re-thought, thus
forming the loop. In contrast, entropy occurs if a system does not accept in-
put or give output; it will eventually slow down and cease to function.
We will now look at how systems theory can be used in practice and how
it can inform day to day work with people with learning disabilities.
SYSTEMS THEORY IN PRACTICE

Systems theory was used extensively in the 1970s in social care. The aim was
to develop a single social work approach that could be applicable to all social
work settings. The idea was to look at the way people interacted and how
people depended on many different systems to meet their needs.
Each person was considered as a part of an informal system such as fam-
ily, friends and neighbours. Formal systems would be those such as commu-
nity groups and societal systems would be those such as schools, hospitals,
social services and the police. Whilst the systems operated in harmony, the
person retained equilibrium (Pincus and Minahan 1973). Any of these sys-
tems could break down or not provide sufficient support for the person, thus
unsettling equilibrium. In such a case, Pincus and Minahan (1973) suggested
the person’s systems should be examined and the system not working effec-
tively identified. The worker or carer could then intervene to change the in-
effective system, or support the person if change could not be made,
ultimately to restore equilibrium.
In reality, this was not always a practical way of providing support; the
approach did not progress as originally planned. However, it can still be used
to provide understanding of different situations and does highlight the im-
portance of looking at the wider context of a person and their surrounding
systems. This enables the focus to be extended from the individual to a wider
context. It acknowledges that the situation or problem may not be solely of
the person’s making and that external factors impact upon a person’s life.
Germain and Gitterman (1980) suggested a ‘life model’ approach to so-
cial work. This played a key part in the development of ecological systems
theory. Ecological systems can provide a further perspective upon the impor-
tance and impact of social systems. This approach is described by Thomas
and Pierson as: ‘A perspective in social work that emphasises the adaptive
and reciprocal relationship between people and their environment’ (Thomas
and Pierson 1996, p.125). This predominantly focuses on the ‘adaptive and
reciprocal relationship’ (Thomas and Pierson 1996) that individuals achieve
in relation to their environment during their lifetime. It also considers how
the person may affect the environment in which they live. The life model
sees people as constantly adapting within the many aspects of their environ-
ment (Germain and Gitterman 1980). It looks at the connection between a
person’s problems, needs and goals and the relationship to social, economic
and physical environments. Tools that can be used to help identify these re-
lationships are ecomaps and genograms.
Ecomaps and genograms are visual methods of focusing on the network
of family and support in a person’s life. They provide visual diagrams of the
person’s systems network (Gilgun 1994). This enables a better under-
standing of social networks in relationship to environments. Ecomaps can be
used to identify and visually describe a person’s social situation. Genograms
can be used to identify and visually describe a person’s family tree.
Genograms are particularly useful in life story work (Thomas and Pierson
1996, p.159). These visual aids are completed in partnership with the
person being supported, who is the central figure. They can show those who
are closest to the person and those farthest away. These methods can be used
to identify and reinforce existing support networks and resources and high-
light those missing.
To place this in context, let us consider someone with a learning and
physical disability who wants to move from a residential unit into independ-
ent living. There are various systems that may play a part in the person’s
resettlement. These may include informal systems such as family, neighbours
and friends. An ecological approach could also be used to identify the social
systems that surround the person, such as educational facilities, and health
and social support services. This approach may also highlight aspects of
social exclusion, by identifying absent support structures. This would pro-
vide valuable insight when considering the appropriateness of the move, the
support needs and care package that would be required. The balance
between resource-led provision and needs-led support could be considered
in the overall context of the person’s life.
It is crucial that workers and supporters of people with learning
disabilities ensure that it is the systems regarded by individuals as of impor-
tance that are fully considered. The influence of our own judgement and the
perceptions of family or friends, concerning systems that are important to
the individual, require careful reflection to ensure the individual’s needs and
wishes are properly taken into account. This may take time to achieve but
avoids tokenistic working. Again, this highlights the importance of getting

to know the individual and understanding his or her preferences.
The capacity of people and social systems to maintain their place in soci-
ety may be influenced by various factors:
• Life transitions – developmental changes, changes in status, role or
group composition.
• Environmental pressures – poverty, inequality, rigidity in the
environment.
• Interpersonal processes – communication, patterns of relationship.
One of the aims of social support is to enable the person and to support the
environment in changing so that compatibility can be achieved. Without
identifying the systems that impose restrictions upon a person, it is difficult
to effect positive change. Using the processes discussed to identify the
systems that require change, a structured approach to working can be
achieved.
Support work dealing with life transitions and the situations or issues
that arise from them may require various methods of support, such as:
• enabling: strengthening the client’s motivation, validating and
supporting the client, helping to manage feelings
• teaching: helping clients learn problem-solving skills, clarifying
perceptions, offering appropriate information, modelling behaviour
• facilitating: such as maintaining clients’ freedom of action from
unreasonable constraints, defining the task, mobilizing
environmental supports.
(Adapted from Payne 1997, p.148)
When considering and dealing with situations or problems that arise from
environmental pressures, intervention can be made through:
• mediating: helping the client and the system meet and deal with
each other in rational and reciprocal ways
• advocating: pressurizing other agencies or individuals to intervene,
including taking up social action
• organizing: such as putting the client in contact with or creating
new social networks.
(Adapted from Payne 1997, p.149)
The more a support worker understands the various systems involved, the
greater the information gained to inform the situation. There is a need to
consider how to work, who is included or excluded, cultural expectations,
experience and communication patterns.
Other theories may also inform practice when using a systems approach;
for example, role theory. If a person’s role is identified within a specific
system, it may provide a clearer understanding of that person and his or her
actions. The use of more than one theory to explore a situation can enhance
understanding and the provision of care and support.
The following case studies illustrate the use of systems theory in
practice.
CASE STUDY ONE

Margaret, a woman in her late thirties, had lived all her life with her father in
a small country town. Margaret had a part-time job working in a cafe in a
nearby town and she travelled there independently by bus. She was also a
member of the local Baptist church and sang in the choir.
Over the previous six months, Margaret had begun to express a wish to
move and perhaps get a flat of her own. Margaret and her father had dis-
cussed her wish for independence in some detail. Her father was concerned
that Margaret might become lonely and isolated and therefore vulnerable if
she lived alone. Margaret’s father was also worried that she was not able to
budget or pay bills. She had little experience of this, as he had always dealt
with financial matters in the home. He wanted to support Margaret but was
worried what independence might bring for her. They had been advised to
contact social services to see what options were available, and decided to ask
for a visit to discuss their next move.
Walter, a social worker on the local team for adults with learning disabil-
ities, came to visit Margaret and her father and they discussed their hopes
and fears with him. The social worker explained the need for a full assess-
ment. This would take place over time so that the right resources and hous-
ing could be found for Margaret; this too would depend upon her skills and
abilities.
In order for Walter to get an idea of Margaret’s social situation, he drew
up an ecomap with her. Through this work, Margaret was able to put herself
figuratively in the middle of the ecomap. She then put the people and places
important to her in surrounding positions, with those she felt most impor-
tant to her closest and those least important farther away on the ecomap. Fur-
ther discussion with Margaret and her father helped develop this theme.
Following on from Walter’s initial assessment of Margaret, he then re-

ferred her to the local community support team for further assessment and
support.
From drawing the ecomap and from their discussions, Walter was able to get
a picture of the systems important to Margaret. This was used to help them
consider and plan the future move. As part of her informal systems, Margaret
wanted to be able to see her father with ease (and he too wanted this). She
also expressed a wish to be near her close friend Shelley, whom she had
known from school days and whom she met up with at least weekly.
Margaret also wanted to carry on singing in the choir.
As part of her formal systems, Margaret wanted to continue her work in
the cafe. Her links to societal systems were made when she and her father
contacted social services for information and advice and followed this up by
working with the community support team. They also linked in with the
health care Margaret received from the local health trust.
The support team worked with Margaret over several months to facili-
tate her move and maintain contact with those she considered important to
her. They enabled her to find accommodation with an appropriate level of
support and encouraged this positive move. They also taught Margaret some
skills that would promote her independence, such as basic budgeting. The
team mediated in such ways as finding a supportive female GP with whom
she could register. They organized to ensure that when she moved Margaret
had familiarized herself with her new locality, that she knew the local shops
and cafes, social centre and library. They advocated on Margaret’s behalf
with the benefits agency. Without considering the systems that surrounded
Margaret, many of these important aspects could have been overlooked or
ignored.
CASE STUDY TWO

Colette had lived for 15 years in a private sector hostel housing ten residents.
Her friends were from the hostel and the day centre she attended; she had no
family. Over time her physical condition had deteriorated, and at 52 years of
age, Colette had become a wheelchair user. In the past Colette had been able
to go out to the local shops alone, but since becoming a wheelchair user had
been forced to rely upon others to accompany her.
Colette enjoyed her hobbies of tapestry, rug making and music. She was
of a shy nature and not very assertive. Colette had two close friends within
the hostel with whom she chose to spend most time. Three of the other peo-
ple Colette lived with had issues of mental ill health additional to their learn-
ing disabilities. Sometimes, when their mental health deteriorated, this
would have an impact upon her. These residents needed more staff attention
and Colette and others therefore received less. It sometimes meant visits
from outside professionals, who came into the hostel to work with individu-
als. Over time, Colette found herself becoming more physically vulnerable
and isolated within the hostel and less able to get out.
Colette continued to attend the day centre, which she enjoyed. She was
able to meet up with friends from outside the hostel and attend groups of her
choosing. She also managed to get out into the community twice a week.
Colette had several outbursts at the day centre followed by bouts of crying,
unusual behaviour for her. Day service staff discussed this with Colette and
contacted hostel staff.
With all this in mind, Colette’s key worker, Narinda, discussed the issues
with her and they devised a plan to maintain Colette’s links to the local com-
munity. She enrolled in a tapestry night class at college that was accessible to
her as a wheelchair user and she used Dial-a-Ride transport. Colette was also
put in touch with, and later joined, her local PHAB (physically handicapped,
able bodied) club where she could socialize, and which provided voluntary
transport.
One of the things Colette most looked forward to was her summer holi-
day, and she saved for this from her personal allowance. Due to service pol-
icy, Colette had to fund her own holiday, including staffing costs. The
impact of her deteriorating physical health and increased wheelchair use
meant the rise of her holiday costs. Narinda understood Colette’s wish to
take a summer holiday and get away from it all. She accessed money to sup-
port the extra costs of Colette’s holiday from a national charity.
Importantly, they also discussed the impact of all this upon Colette and
started to explore her housing options. They looked at several, including a
specially adapted group home. In the short term, Colette said she preferred
to stay where she was as she was with close friends. She felt that some posi-
tive changes had been made, but decided to look at it again if circumstances
changed further. She only wanted to move if she and her two close friends
could be housed together.
For many years Colette’s home system had satisfied her needs adequately.
The hostel was an open system, exchanging ideas and energy with other
informal systems such as the carers and families and the neighbourhood. It
exchanged with societal systems such as health service workers: community

psychiatric nurses, district nurses, hospital doctors and GPs. The hostel also
worked with other societal systems such as social services, education and the
police.
As the years went by and the residents aged, some of them had increased
needs. Staffing levels were, however, not proportionately increased. Thus,
whilst Colette’s physical needs were met, some of her emotional and recre-
ational needs were not. The actions of the residents with increasing mental
ill health and challenging behaviour had a negative impact on Colette, mak-
ing her feel vulnerable and more alone. The system had not broken down but
clearly was not meeting all of her needs.
There was also the impact of the home system upon Colette’s other main
social system at the day centre. When day centre staff intervened, Colette
had explained how she was feeling. It was apparent that her outbursts had
been due to her increasing frustration and dismay with what was happening
at home. From an ecological approach, the changing situation within the
hostel and changing health factors had led to some social exclusion. This
had been highlighted by discussion with the day centre staff. Narinda, as
key worker, had recognized this and taken action to combat discrimination
and disadvantage to Colette.
Concerning her holiday, the economic aspect of Colette becoming a
wheelchair user disadvantaged her further. Adaptation within the system
would have meant increasing her savings and having even less money to
spend each week on personal items. Neither Colette nor Narinda saw this as
a viable option and rather than adapt (that is, save more each week) Narinda
networked and found money elsewhere to support the holiday. Narinda en-
abled Colette to take up this issue of holiday funding at their house meeting
with the manager. She also advocated on Colette’s behalf in pressurizing the
management committee about the fact that those with higher needs paid
more for their holidays.
CONCLUSION
We have explored systems theory by looking at general and ecological
systems theory. Systems theory is a useful tool when looking at the overall
situation a person is in; however, it does not tell us which system is important
or needed and which is not. This can be explored further by working with
the person to understand who and what is important to them. The process
can be used to identify areas where support is required. The use of systems
theory combined with others, such as role theory, enables a joint exploration
with the person. The systems approach enables the person to remain the
central focus.
Key points
• Systems theory has developed from a number of different
perspectives; however, the common theme running through each
is that a structure is made up of many parts and each part plays a
role in the overall composition, system or arrangement.
• There are formal and informal systems, super-systems and
sub-systems, and macro- and micro-systems.
• Identifying the structure of systems surrounding a person or
organization can give insight into a variety of situations.
• Systems can work with each other or conflict. Being able to
identify different systems can aid consideration of how the
overall structure is operating.
• Systems that conflict can be challenged and change supported to
enable development.
• Although systems can be identified, the theory does not tell us
which systems are considered important or needed by a person.
The person being cared for and supported should be consulted
throughout.
• Ecomaps and genograms are good tools to show systems in a
visual format and can be undertaken with the person.
• Systems theory can identify the important systems, or lack of
them, surrounding a person. Other theoretical perspectives can
then be used to inform ways of working to support a person or
given situation.
A TASK CENTRED APPROACH

INTRODUCTION
A task centred approach can be used in many different social and care
environments. It places an emphasis on the problem solving of issues that are
important to the person being supported. The problems need to be identi-
fied and ways of dealing with them explored and undertaken. We will
initially explore the development of task centred casework. We will go on to
highlight the principles that underpin the approach, its application and
limitations in practice. The use of a task centred approach will be illustrated
through two case studies.
TASK CENTRED CASEWORK

In the USA during the 1960s, concerns were raised about the length of time
casework took. It was suggested that social support was time consuming and
ineffectual for many clients. The task centred approach was a way of
changing traditional working styles. The pioneers of the task centred
approach were Reid and Epstein (1972). They provided an initial expla-
nation that described the working principles of the approach. In this section
we will incorporate their ideas with the work undertaken by Doel and Marsh
(1992), who provide another interpretation of task centred work.
The key features of a task centred approach can help to identify how and
what the approach can be used for. The key features include:
• focusing on the here and now
• focusing on problem solving
• focusing on the outcome for the client and not for the worker
• being client centred
• being time limited
• short-term working.
When considering the key features in practice, it becomes apparent that this
type of approach would only be relevant and appropriate to certain situ-
ations. Reid and Hanrahan suggested eight areas where a task centred
approach could be beneficial:
1. Interpersonal conflict.
2. Dissatisfaction in social relations.
3. Problems with formal organizations.

4. Difficulties in role performance.
5. Problems of social transition.
6. Reactive emotional distress.
7. Inadequate resources.
8. Behavioural problems.
(Reid 1978; Reid and Hanrahan 1981 in Coulshed and Orme 1998, p.118)
These examples begin to highlight the diversity of situations in which a task

centred approach could be used. An understanding of the principles that
underpin the theory and explain how it works will help to identify how to
use it in practice.
PRINCIPLES OF TASK CENTRED WORK

The principles of task centred work focus predominantly on the following
factors:
• People are largely capable of making rational choices about what
they want to do. They are the best people to make choices about
themselves.
• People are more likely to achieve goals they have chosen
themselves.
• Small successes build confidence and self-esteem.
• The task of the worker is to enable people to achieve their aims.
When a person has a problem or issue, then the individual concerned is often
the best person to identify the nature of that problem or issue. This of course
may be affected by the person’s perception or understanding but, neverthe-
less, his or her interpretation should not be dismissed. If ability is impaired
the person may still be supported in identifying the issues of concern. Task
centred work relies on joint responsibility and will not work in a satisfactory
way if the person concerned does not want to participate. Achieving change
is more likely if the person wants to make the change and it is not something
imposed by others. Involvement in identifying changes, setting targets and
negotiating how work will be carried out is part of joint ownership.
When a problem appears very large or difficult to face, breaking it down
into smaller, more manageable pieces or tasks is a logical way of dealing with
it. Negotiation takes place to decide what tasks need to be undertaken and
who is going to carry them out. Tasks can then be taken on individually
whilst working towards resolution of the whole problem or issue. Achieving
each task or small goal helps the person to build up self-esteem and
self-confidence. If a small goal is not achieved, the failure is nowhere near as
great as if the whole task were unsuccessful.
TASK CENTRED WORK IN PRACTICE

When using this approach, the initial stage is to identify the problem and
establish the reason for the work (Doel and Marsh 1992). Joint working is
used to explore the identified problem. Time should be spent in finding out
the person’s specific understanding and views. When the main problem is
identified, it needs to be evaluated to see if it is resolvable. If the problem is
not resolvable using a task centred approach, then other approaches may be
considered to support the person to understand or accept the situation. As
workers, carers or supporters, it is important that we do not impose our own
agendas or those of our agencies upon the person being supported. It is also
worth checking that it really is the client that wants the change, not someone
from his or her family or support network.
The next step is to agree the goals and the time limits in which to achieve
change. The focus of this stage is on making an agreement between the per-
son and worker about the action to be taken (Doel and Marsh 1992). This
work can then be carried out in a logical progression:
• Identify the client’s problem and agree to work on this.
• If there is more than one problem then prioritize with the client.
• Be clear about the person’s desired outcome.
• Set the tasks out so that they can be seen and decide which is the
priority.
• Agree on the time required to carry out the tasks and set a time
limit.
The planning and subsequent execution of tasks need to be undertaken and
reviewed on a regular basis. Depending upon the person’s ability, the tasks
may involve just one thing to do or a single decision to be made. Some
people may prefer to undertake a number of tasks at any given time. This
highlights the importance of knowing the person concerned and having an
awareness of his or her abilities. Negotiation takes place to divide tasks
between client and worker. Flexibility is important in meeting individual

needs.
As tasks are completed, it is critical to review progress; this allows the
identification of the most successful strategies. Reviewing also gives the
opportunity to analyse and then remove obstacles that may be restricting
progress. Success can be reinforced with the person to promote confidence
and self-esteem.
When the problem has been addressed and the desired change achieved,
then an end needs to be reached. A positive approach to ending the work
should include revisiting the initial problem and then evaluating the
situation. This reinforces and highlights achievements and enables planning
for the future. The work should then draw to an end. If, however, other
problems have been identified during the work, the process may need to start
again or different support sought from other agencies. Reflection upon the
changes achieved is a valuable part of the task centred process.
It is useful and important to remember that a task centred approach will
work best with problems that:
• the client accepts and acknowledges
• can be clearly defined
• the client wants to work on.
This theory has its limitations; the approach will not work successfully if:
• constant crises affect the client
• long-term psychological problems are the main issue affecting the
client
• the client’s ability to be rational is impaired
• there is a lack of motivation
• legislation or a statutory mandate is not accepted by the person
• there is a lack of openness and honesty
• an ulterior motive or hidden agenda is being used by either the
person being supported or the person providing support.
A task centred approach works on strengths not weaknesses. It recognizes
the ability of the person to play a major part in resolving his or her problems
and it increases and strengthens the person’s problem solving capacity for
the future. The individual decides the change by defining the problems and
goals. It is a time limited process and the person knows when the support
will end. We will now explore the use of a task centred approach in the
following two case studies.
CASE STUDY ONE

Leroy lived in a flat in an outlying district of town. He was settled in that area
and knew people and places in the locality. He had been offered a part-time
job that he really wanted on the other side of town. As this was an unfamiliar
area to him, he was worried about how to get there. He was also concerned
about some other issues to do with taking the job, so he contacted his local
social work team for help.
Leroy’s overall aim was to take the new job, earn more money and meet some
new people. He discussed his situation with the social worker, Vanessa, and
together they identified what the problems and issues were. Leroy wanted
the new job but was concerned about how he would get there and the cost of
travel. He also raised concerns about his benefits possibly being affected.
They discussed the possibility of different forms of transport: train, bus,
taxi and bike. After some discussion, Leroy decided using his bike was not an
option due to the busy town centre route he would need to take. They then
set out the tasks that needed doing to find out other essential information.
Leroy lacked confidence in using the phone, so they agreed the tasks as fol-
lows. Leroy would go to the bus station, get a timetable and ask about bus
routes and fares. He would also go to the local taxi company and find out fare
costs.
Vanessa agreed to telephone the railway station about times and fares
and ask the benefits adviser how the salary offered would affect Leroy’s ben-
efits. They agreed to meet up in a couple of days to consider the options
again when they knew more facts about time and costs. They could also dis-
cuss any possible effects of earnings upon Leroy’s benefits. They had set a
time limit to the first set of tasks.
When they met up, both had achieved their set tasks and exchanged in-
formation. Consequently, Vanessa was able to advise Leroy that his benefits
would not be affected under the therapeutic earnings regulations, but could
be if he earned any more money. They also discussed transport and identified
the bus as being the best form of direct transport at a cost within Leroy’s
budget.
Leroy decided to take the job. They both agreed the next task was to en-
able Leroy to learn the bus route as soon as possible. The community support
team agreed to undertake this with him.
CASE STUDY TWO

Alan, a man in his forties, had a joint tenancy with a friend, Deirdrie. Alan
had a history of mental ill health involving anxiety and depression. Alan felt
lonely and realized he was having a problem establishing friendships. Alan
asked his community psychiatric nurse, Bal, for support in joining a social
club as he did not know where to start.
During further discussion of the issue, Alan had told Bal what he wanted was
a girlfriend. Bal explained to Alan that he obviously could not arrange for
him to meet a girlfriend. He could, however, arrange for someone to support
Alan in attending local clubs. Then Alan could see what they were like and
could meet new people. They looked in the local paper and library for
possible clubs of interest for Alan to attend. They identified two that were
potentially suitable within town. They agreed the next step was for Alan to
go and see if he enjoyed himself and, if he did, the following step would be
to look at how Alan could attend independently. Bal arranged support for
Alan to attend both clubs for one month and then to jointly review the
situation.
When this review took place it transpired that Alan had not enjoyed at-
tending the clubs and doing so had caused him further anxiety and depres-
sion. Bal tried to find out exactly why attending these clubs had been
unsuitable for Alan. Upon further discussion, Alan told Bal that he really
thought he was gay and he did not feel he fitted into the clubs he had
attended.
As Alan had not been open about thinking he was gay, the focus of the
task centred work had been inappropriate. This had worsened his anxiety
and compounded his depression. Bal had endeavoured to support Alan with
the inaccurate information he had been given. Thus, whilst the step of at-
tending the clubs had been achieved, it was not a success. Alan’s hidden
agenda had prevented the success of the task centred work.
Before any further work could take place Alan needed to restore his
equilibrium. He needed further advice and information and to be able to
discuss gay issues. He may have needed more specialist counselling to help
him resolve issues around his sexuality. Differently focused task centred
work to enhance Alan’s social life could only take place when these other as-
pects had been addressed.
CONCLUSION
The effective use of a task centred approach has been reinforced through
research studies (Reid and Hanrahan 1981). The emphasis underlying this
approach is on partnership with the person being supported. This partner-
ship should underpin all aspects of task centred practice (Marsh 1990).
However, it should not be forgotten that the approach provides a minimal
response to the severe social problems often found in society. These may
include inadequate resources, funding restrictions, poverty and social in-
equality. Other theories may be used to complement task centred work and
enhance understanding of the presenting situation in a more holistic way.
Key points
• A task centred approach can be used in many different care and
support environments.
• Work is undertaken jointly with the person rather than on or for
the individual.
• The emphasis is placed on the problem solving of issues that are
important to the person being supported. If the problems are
large they can often be broken down into smaller, more
manageable tasks.
• People are more likely to achieve goals they have set themselves.
• Throughout the work the focus remains on the person
concerned, the individual is central to the process and work is
undertaken to meet his or her needs.
• The task centred process needs to be structured, time focused
and reviewed regularly.
• The approach works on strengths not weaknesses and this
supports confidence building and personal development.
• Task centred work provides only a minimal response to severe
social problems such as lack of funding, poverty and social
inequality. Other theories may need to be used to underpin
practice challenging such issues.
ROLE THEORY
INTRODUCTION
What is meant by role and role theory? We will have our own interpretations
of what a role is and what it means. It may be seen as a part that an actor will
play, a specific action, or a function that is carried out by someone. It may be
the part we see ourselves fulfilling within our family, with friends, in work or
in society. All of these may be accurate and, when thought about, may
provide some level of explanation about how we think someone should act,
how we ourselves should act and, conversely, how we should not act.
A definition taken from a social work text that provides one explanation
of a role is: ‘Role. Expectations and obligations to behave in a particular way,
arising from a recognised social position or status’ (Thomas and Pierson
1996, p.331). This places into context that expectations and obligations
play a part in how a role is perceived. The point to consider is, who places
these expectations and obligations and why? With this in mind we will intro-
duce role theory.
BACKGROUND TO ROLE THEORY

Much has been written about where role theory may have originated. Some
writers support its background from a sociological perspective and others
from a social psychological perspective. These different perspectives are
recognized by Strean (1971) and Davis (in Turner 1986) for their con-
tribution to explaining the theory in relation to social work. We will briefly
examine the sociological and social psychological perspectives to enable
these ideas to be placed in the context of social work and social care.
Ralph Linton (1893–1953) in Marshal (1996) carried out studies that
looked at the possible links between the relationship of personality and
society. These links examined how societies function and how this impacts
on the culture of society. From these studies Linton pioneered the concepts
of role and status; this has provided a basis from which to explore social
systems. Status gives the place in the pecking order of society and role
prescribes the expected behaviours and attitudes within it. Status and role
are described as any form of patterns of relationship between different
things or people and are regarded as each having their individual identities.
Role theory is also related to sociology by its association with struc-
tural-functional theory. This approach considers social structure and what
position a person holds within society. The position the person holds could
be seen as his or her role within that society. Different expectations of how
people should act and what they should or should not do are maintained;
this reflects or impacts on their position within society’s structure. If this ap-
proach was considered in more depth it would show that roles are always in-
fluenced in the context of their relationship with the rest of society. The role
that we follow appears to create our identity in society and, along with this,
the way others react to us may reinforce our own idea of our identity. An ex-
ample of this is the title of Doctor. It may be a Doctor of Medicine or a Doc-
tor of Philosophy – very different roles; however, the title of Doctor
specifies a role and can convey a stereotypical identity.
In social psychology role refers to the kind of behaviour expected of a
given person in a given situation (Statt 1998). The idea of social interactions
is important; they occur within a context that can influence how we act. So-
cial interactions occur at all levels: a cultural level, environmental level,
through social groups, family and friends. Each can have great relevance to
how we act, what we say and what we do. To explain this further, a brief un-
derstanding of scripts may help. Schank and Abelson (1977) proposed that
the majority of social action in which we engage is part of planned se-
quences. Everything is regulated and expected; this was likened by them to
the script of a play. An example of this could be taken from a visit to a hospi-
tal. The bus driver, car park attendant, receptionist, nurse, doctor, consultant,
other patients and friends may all be involved. The sequence of who should
do what and when is quite familiar, although these people may be strangers
to us. We would know roughly what to expect at any given point – how each
person should behave – and a fairly logical process will be followed. This
was the underpinning of Schank and Abelson’s argument that all people in-
volved act according to the same scripts and make social interaction run
fairly smoothly. The concept of role then fits in with the expected scripts that
we follow. We would play our role as others would play theirs.
Roles may develop from our own or others’ expectations; this is where a
role is ascribed as a result of circumstances. Examples of ascribed roles are:
being a woman, a man or disabled. Other roles are attained by something we
have done, such as becoming a singer, politician or teacher.
Having an understanding of these different explanations of roles will
support appreciation of how they can be used to inform social work practice.
During an ordinary day we usually play a number of different roles. These
may include long-term roles, such as being a parent, partner in a relationship
or a child. Alternatively, some of our roles may be very brief, passing ones,
such as going on the bus as a passenger or speaking to a stranger. On some
occasions the role may be temporary but on a longer term basis; examples of
this could include being a student or spending time as a patient in hospital.

Each one of the roles suggested would involve specific behaviours. How a
person behaved talking to a stranger may be quite different to behaviour
within the family. Whilst in hospital a person would probably act differently
when talking to visitors than when talking to the consultant.
Social roles are always reciprocal; in other words, the role held is always
in relationship to another person. Goffman (1959) suggested that as we play
roles as part of our everyday social life they gradually become internalized
until they become part of the self. When we take on a new role – for example,
at college – initially it all seems very unreal but after a time we fit into the role
more easily. We learn our roles in life and what we expect others’ roles to be;
this links into social learning as described by Bandura and Walters (1973)
and Bandura (1977) (see also Chapter 8 for behavioural approaches).
The principles and background of role theory have been discussed, links
to everyday life shown and links with differing theories covered. Next we
will consider some different aspects of the theory. Case examples will be
given that place the use of role theory into the context of social work and so-
cial care within the learning disabilities field.
Some explanations of role theory show it as a type of static view of soci-
ety. Of course, the reality is that society changes over time, therefore roles
change. There may not be universal agreement on what a specific role entails.
It does not make allowances for strong feelings that do not fit within the ex-
pectations of the framework. To inform the dilemma of change, the concept
of role set was developed. As discussed above, no role exists in isolation; a
role set is a collection of roles that go together in a specific social situation.
Within this situation a person may take on many of the roles that it includes.
For example, being a parent may be one role but the person may also be a
husband, wife or partner, wage earner, son or daughter, friend, member of a
club or group – the list could go on. Thus the role of being a parent may be
the focal role but, in addition, the other roles relate to it as part of the role set.
Each role makes a demand on the focal role; this demand is called a sent role,
and may influence expectations and behaviour.
A person is usually aware of his or her role as a parent, partner, employee
or friend. Others may have the same expectations of this role, and this is
described as a complementary role. Different expectations, such as the
amount of time that should be spent in any particular role, the level of
commitment and reliability in relation to the role, may cause role conflict.
Role conflict is where there is a discrepancy between these different expecta-
tions. The most common and significant cause of this is a conflict between
role senders. An example of role conflict and role senders can be considered
by thinking about the difficulty a person might face in trying to reconcile

the balance of expectations from a child, partner or employee. Ambiguity of
the role may occur when there is uncertainty about what the role entails.
Dahrendorf identified three levels of obligations associated with any
given role:
• must do – functions that are essential to the role; there are definite
sanctions if these functions are not performed
• should do – functions that should be performed as part of the role,
but the prospect of sanctions is not as strong if these functions are
not performed
• can do – these are functions that can be performed as part of the
role.
(Adapted from Dahrendort 1973)
The must do, should do and can do levels can be considered in identifying
the role obligations of social workers or nurses. The role obligations are
guided by relevant policy, procedures, and legislative framework. Conflicts
may arise between role obligations and what individual roles, scripts and
beliefs are.
It is important to be aware of the role conflicts people with learning
disabilities may experience through the discrepancies of expectations of
others. Pressure may be exerted through these expectations; an understand-
ing of these factors enables the focus to remain on the person being
supported and gives insight into the individual’s situation. Without such in-
sight it is possible to collude with others’ role expectations and, instead of
supporting the individual, such collusion may lead to his or her oppression.
These ideas indicate that some behaviour can be understood as role
conflict and uncertainty, and takes in a social perspective on behaviour. This
gives us a useful link between behavioural problems and social environ-
ments. We should be aware that roles do not exist solely as a part of the pat-
tern of society but also as a method of understanding individuals. Role
theory does not provide methods of working to support or change role con-
flict, but does support its identification.
Another area of consideration should be that of negotiated roles. This in-
corporates the idea that social roles are not predetermined. Role players in-
terpret and negotiate their roles together. This is often a process of gradual
accommodation and change. The accommodation of roles could apply to a
person receiving care and support, the carer involved and family members.
An implicit part of this approach is that all successful social interaction and
communication depends upon the respective participants adopting comple-
mentary roles.
This section has aimed to provide an understanding of how role theory

can inform support and care work. Links to some other theoretical perspec-
tives have been made. Two case studies will now be described; both will
show how an understanding of role theory could inform practice.
CASE STUDY ONE

Jess, a 22-year-old woman with learning disabilities, had lived for three years
in a supported group home housing four people. She appeared happy and
settled and, over time, had formed a particularly strong friendship with
Donna, one of the other women living in the house. They travelled to college
together and spent most of their spare time in each other’s company. Jess was
generally friendly, easy-going and tended to fit in with others.
Jess had part-time work in a local shop and through this work she met
Phil, who regularly came into the shop with his father. After some weeks,
Jess invited Phil to a party at her local community centre; later they started
going out together more seriously as partners.
After a few weeks, Donna told her key worker that she did not like Phil
coming to the house so much and complained about him using their food
and drinks as if he lived there. At the same time Jess’s parents asked for a
meeting with Jess’s key worker. They were concerned that Jess was always
talking about Phil and that she would no longer visit her Granny with them
at weekends as she used to, something they still wanted her to do.
Whilst Jess was going to work, college, and spending her spare time with
Donna, no role conflicts arose. Her position in her social structure was clear
and known. She was a good best friend, reliable and fun; she was also a good
daughter spending time with her parents and visiting her Granny at
weekends. These roles were complementary, with behaviour and expectation
nicely balanced.
The role conflict arose when Jess took a more independent stand and
wanted to have a relationship with Phil. She was then less apt to fit in,
asserted her wishes more and there was inter-role conflict between being a
best friend to Donna and partner to Phil, both of whom wanted her time.
Donna experienced jealousy at having to share her best friend and she
needed time to adjust to this.
Jess’s parents, whilst having supported her to move on and live more
independently, still held a role expectation of Jess as the dutiful daughter
who spent time with them as a matter of course, and this role expectation
certainly did not include Jess being a sexually active woman. Jess experi-
enced intra-role conflict through the different set of expectations held by
her parents and by herself for her role as daughter.
CASE STUDY TWO

Ghita and Prem lived in a small staffed hostel housing eight people and both
were in their late twenties. Both Ghita and Prem were said to have a dual
diagnosis of learning disabilities and mental health issues. Ghita was
additionally labelled as having challenging behaviour. They had been in a
relationship for a short time.
Prem was unable to work and did not participate in any activities outside
the hostel. Ghita soon ceased of attending the local drop-in centre that she
had been attending somewhat erratically. They rarely spent any time with
other residents, opting out of communal mealtimes, and tending to get up
late and watch television most of the day. Both Prem and Ghita’s key workers
were concerned about them. Their perception of Ghita and Prem was of
them becoming more insular due to the lack of participation in any activities;
the staff worried that they were not good for each other.
One day Ghita and Prem walked in to the office and announced they
were going to be married. This was discussed with their key workers, neither
of whom had positive thoughts about it. Indeed the key workers went as far
as trying actively to dissuade the couple from marriage, pointing out their
perception of the difficulties involved. They described some of these diffi-
culties as Prem not understanding how Ghita’s mental health affected her
and the difficulties both would have in managing medication.
Ghita and Prem were adamant they would marry and asked staff to help
them achieve this. The local community support team were contacted and a
social worker came out to see Ghita and Prem. The social worker recognized
Ghita and Prem’s rights to both marriage and independent living in their
own style. The social worker’s perspective was different from that of hostel
key workers and staff. Much negotiation was undertaken by the social
worker representing Ghita and Prem’s interests to effect the necessary
changes that would enable them to move out and marry.
The role expectations of the key workers then were that Ghita and Prem
were in the hostel as they required a high level of support. They should
behave as individual residents maintaining the status quo as it worked well
enough and it did not stop them enjoying a sexual relationship. Ghita and
Prem were thus dependent upon the staff. The roles that Ghita and Prem
wished to attain were those of a married couple living independently
without staff telling them what to do or having to discuss each issue as it
arose, however therapeutic the staff deemed this to be.
The intra-role conflict occurred between behaviour the staff expected of
Ghita and Prem’s position within their social structure and Ghita and Prem’s
ideas of their position and the possibilities for change. The hostel staff did
not wish to hold Ghita and Prem back from marriage through malice, but
feared their independence leading to isolation would in turn lead to
deterioration of their mental health. In a sense they had accepted the labels
given to Ghita and Prem. Thus, staff perpetuated their dependence without
recognizing their potential for change, given the right knowledge and
support, and their rights as individuals to consent to marry.
CONCLUSION
The advantage of using role theory is that its general principles can easily be
understood and can therefore be applied in a wide context. Again, the
importance of not seeing an individual theory as the only way of explaining
a situation has been suggested. Role theory can be used to offer insight and
clarity and help explain the impact and differences of roles that people may
have as part of the systems surrounding them.
Key points
• Role theory is a way of understanding and gaining insight, not a
method of working.
• Role theory is relatively straightforward to understand and to
use.
• Role theory can be used with other theories as an additional
way of helping to inform practice.
• Insight into particular behaviours may be gained through
consideration of roles and role theory.
• A person’s role, real or perceived, can help explain his or her
position within society.
• Role theory can provide a useful and flexible approach that may
offer insight into people and their situations.
CRISIS INTERVENTION
INTRODUCTION
To enable a focus on crisis intervention we will use the following definition:
‘An attempt to understand the nature of episodes that people find extremely
difficult or impossible to handle, and to understand how services might be
organised to help people through such events’ (Thomas and Pierson 1996,
p.98). Who is in crisis, the person, staff, service or funders? The word ‘crisis’
is often used to describe a situation that is stressful or urgent. If someone is
supported whilst in a stressed or urgent state the work undertaken is not
necessarily crisis intervention. To claim the application of any particular
theory there is a need to use the principles and techniques underpinning that
theory. This provides a framework against which the actions used can be
judged and measured. Therefore, understanding the principles of crisis
intervention is important in order to know how the theory can be used
successfully.
The theoretical principles of crisis intervention are explained in this sec-
tion. We will explore the background of crisis intervention and, by doing so,
aim to provide insight into the approach. Crisis intervention can be a valu-
able way of explaining and working with a given situation. However, on its
own it does not provide a full explanation of how to support a client during a
period of crisis. Other theoretical perspectives can additionally be used to in-
form working approaches that will enable individuals to move on from a cri-
sis. Links to other such relevant theories and their use in crisis work will be
highlighted. The case studies at the end of this section will demonstrate the
use of crisis intervention in practice.
WHAT IS CRISIS INTERVENTION?

A study carried out in 1944 by Lindemann looked at the grief reactions of
patients. He particularly focused on people suffering from the ‘Coconut
Grove fire in Boston’ (Lindemann 1944). Lindemann found that the patients
who handled the situation best were those who had managed and fully
resolved challenges in the past.
Researching why some people dealt with severe challenges well and
others not so well led a group of mental health workers to develop ideas
about how people fall into crisis. Often the crisis occurred when coping or
problem solving capacities became overwhelmed. Lindemann (1944) and
Caplan (1965) worked towards developing ideas of how crisis can be
minimized and ideally prevented and, when crisis has already occurred, how
a satisfactory resolution can be achieved.
Crisis intervention additionally uses some elements of other theories in
its underpinning. The principles of ego-psychology from a psychodynamic
perspective can be used. This perspective focuses on people’s emotional re-
sponse to external events such as a crisis and their ability to deal with this ra-
tionally. Crisis intervention theory concerns itself with failures in people’s
capacity to effectively manage problems and challenges in life. Ideas found
in systems theory such as homeostasis and equilibrium can be used in the un-
derstanding of crisis intervention.
CRISIS INTERVENTION IN CARE AND SUPPORT WORK

Crisis intervention is often used as a loose description in a variety of
circumstances when care and support is required. Just because support is
required it does not necessarily mean that there is a crisis. A number of
important principles and techniques used in social work intervention in
emergencies have been described by O’Hagen (1986, 1991, 1994).
Crisis intervention is minimal intervention which seeks to achieve the
maximum and optimum effect. Its focus of aim may be ruthlessly con-
fined, yet its goals are nothing short of revolutionary. These are: ‘to re-
place blind ugly passion with enlightenment and tolerance, chaos and
panic with order and safety, helplessness and despair with a sense of
hope’. (O’Hagen in Lishman 1994, p.155)
Golan offers a formulated approach to explain the fundamentals of crisis
intervention theory. Specific key words are used by Golan in explaining each
step of a crisis. These key words are placed in context as follows:
1. A crisis begins with major problems or a series of difficulties. These
are described as ‘hazardous events’. These events may be ‘antici-
pated’, such as moving house. Alternatively, events may be ‘unantici-
pated’, such as sudden death, redundancy, flood or other disaster.
2. These events pose a challenge to the ability of a person to cope com-
petently. ‘Equilibrium’, the intellectual or emotional balance, is chal-
lenged.
3. When ‘equilibrium’ is lost a person may enter a ‘vulnerable state’.
4. When ‘equilibrium’ is unbalanced, regular problem solving methods
are used to deal with the problems. If these methods do not work,
the person needs to find new ways of problem solving.
5. However, if the problem solving does not work, tension and stress is
suffered, increasing the state of vulnerability.
6. If a major new challenge occurs when in a ‘vulnerable state’, this is
known as a ‘precipitating factor’. If this occurs a state of ‘active
crisis’ may develop. This is when problem solving capabilities are
overwhelmed.
(Adapted from Golan 1978)
In life, most people are in the position that a major single event or series of
small events may prove too much to handle and become unmanageable. It is
important to remember that it is not the event itself that is the crisis, but the
inability of the person to manage the event. It is the reaction of the individual
to these events that determines whether there is a crisis or not. An event that
precipitates crisis for one person will not necessarily do so for another. It is
the individual’s perception of the event and its meaning for them that will
determine whether the situation becomes a crisis or not.
Golan (1978) suggests that the more problems that have been success-
fully managed and dealt with in the past, the better the coping strategies
available to meet new challenges. By developing these new coping strate-
gies, the likelihood of active crisis occurring in the future diminishes. If there
are unresolved problems from the past, then the person is more likely to find
it difficult to cope with hazardous events and thus fall into crisis.
USING CRISIS INTERVENTION IN PRACTICE

When using crisis intervention in practice there are several aspects to
consider. A crisis to one person will rarely be the same as a crisis to another.
Whatever the situation, it is important to be able to promptly recognize a
crisis or hazardous event and take into account its effect upon the person. To
minimize the impact of the crisis and work towards resolution, support
mechanisms need to be able to respond quickly and intensely.
It is also important to consider cultural issues and religious perspectives
when working with someone in crisis. Different cultures may have their own
particular ways of dealing with a situation: how care is provided, coping
with separation or death, mourning, admitting help is needed. Sometimes
what is seen in a particular situation may not provide a clear representation of
what has actually happened or is happening to a person from outside. Fur-
ther exploration may be required to avoid misinterpretation.
In describing aspects of Hindu death and mourning rituals, Firth says:

For 12 days, chairs are removed from the living room and sheets spread
on the floor. The bereaved relatives sit on the floor to receive the condo-
lences of the relatives, friends and neighbours who pour into the house.
Their ascetic lifestyle, sleeping on the floor, eating simple food, and
having only religious music, reflects their liminal status, as they are dead
to the ordinary world… (Firth 1997 in Hockey, Katz and Small 2001,
p.241)
In thinking about this example it would be easy for a person outside the
Hindu community, without knowledge of Hindu custom and ritual, to
misunderstand or misinterpret what was happening within such a household
if a visit was made during these 12 days of mourning. Careful consideration
of what is happening and working closely with the person and others
involved is critical.
Golan (1978) identified some key issues surrounding the support
procedure during a crisis. People in crisis are often more open to being
supported than those who are not in crisis. Their normal coping mechanisms
have broken down and the feeling of desperation may be made easier by
accepting help. Intervention in a crisis is more likely to be successful than
intervention offered at other times, especially as the person wants the
support. Crises often resolve themselves for better or worse in six to eight
weeks; this gives a very limited amount of time to provide effective, intensive
support.
It would be easy to take control of the situation and try to resolve the
crisis for the person concerned. Sometimes this may be appropriate, for
example, in the case of children, someone with profound disabilities or
severe disruption to an individual’s mental health. As always, when working
in a situation that encompasses an anti-discriminatory and anti-oppressive
approach, it is critical to consider methods of working. The supporter of the
person in crisis needs to identify the most empowering and least restrictive
way to manage the situation. Even in a crisis there is a need to work with the
person throughout the situation; the more the person is actively involved,
the more his or her skills can be developed for future personal management
in stressful situations.
There may be barriers that restrict verbal communication – the person’s
understanding of the situation may prove difficult. Medication can also limit
active involvement in some situations by affecting concentration or dis-
turbing the thought process. These limiting factors need to be identified and
a strategy of working developed which recognizes them.
In addition to crisis intervention, a systems theory approach can be used

– working with other people that know the individual well. This may pro-
vide valuable insight into the person’s life, his or her methods of communi-
cating, and the skills and support networks involved. This information could
be of benefit during the initial crisis support and in the subsequent planning
of care. It is important to be open minded and to maintain the central focus
of approach upon the person being supported.
There are several aspects that support successful crisis intervention.
These include recognizing emotional distress, how a person responds to cri-
sis and any changes in his or her ability to manage everyday problems. Crisis
intervention uses practical tasks to help a person to readjust to the changing
situation. Ultimately, this should lead to the adaptation of individual coping
strategies for future use.
The main tasks in successfully finding resolution of crisis have been sug-
gested by Golan (1978) as: ‘Correct cognitive perception…, manage feel-
ings…, developing new coping behaviours’ (Golan 1978). When a person is
in crisis various interpretations may be made of the situation. People in crisis
need to gain a clearer and more accurate view of the events that have affected
them. This will enable them to have a better understanding of what has really
happened – an initial step in dealing with any crisis.
The management of feelings can be a difficult process. People who are in
crisis may need to release extreme emotions and this needs to be recognized.
Being empathetic and trying not to restrict such emotional release can be
difficult, but is important. When someone is in the middle of an overwhelm-
ing situation, asking them not to cry or get upset may not be helpful. There is
a fine balance between supporting someone to calm down in order to start to
look logically at their situation, and restricting the individual from the bene-
fit of emotional release.
Coping behaviours learnt in each situation can be used in the future.
Care and support workers should enable the person to explore new ways of
dealing with the crisis and of developing coping strategies. Opportunities
need to be provided for the person to work through the options available to
enable the way forward.
Other theories can be used in helping people move on from a crisis. Ear-
lier, we briefly discussed the use of systems theory and the people and sys-
tems that surround the person. Systems theory can be used to form a holistic
picture of the person’s life and to provide additional information to enhance
work with the individual. The task centred approach can also be a useful
method of working when trying to progress from the crisis. The identifica-
tion of specific tasks for the individual to undertake can be a positive way of
managing anxiety and increasing self-esteem. The section on the task

centred approach provides further insight into its use. Counselling may be
beneficial to the person, depending on the nature of the crisis and the
person’s ability to make an informed choice to have counselling. A psycho-
dynamic approach can, in some cases, support a person by exploring in more
depth how a particular situation was arrived at. Gaining insight through a
psychodynamic approach can enable a coping strategy to be developed for
future use.
Crisis intervention will now be placed into a practice context with the
following case studies.
CASE STUDY ONE

Christine, a woman in her late forties, had lived as a tenant in a housing
association flat for five years. Christine had worked for over ten years at a
local sheltered workshop and enjoyed this. She was able to cope with the
pace of work and had formed a strong friendship group with the other
workers there. Christine usually visited her family on Sundays and on special
occasions. She was also supported by twice weekly visits from members of
the local community support team. During these visits she was able to
discuss issues of concern and gain support with budgeting, housekeeping
and other areas as she felt necessary.
In the previous two years Christine had got into debt of over £1500.
This debt was through taking out a loan on behalf of her partner, Darrell, to
help him buy a car. Darrell had only made a couple of repayments to Chris-
tine when he found himself a job in another town and moved away unex-
pectedly, without leaving a forwarding address. Christine did not know how
she would repay the loan or how to deal with the debt. She had kept these
worries to herself for some time. Matters became worse as she then got into
rent arrears. Christine eventually told her mother about this, who contacted
the community support team.
Christine had experienced much upset and stress through the loss of her
relationship with Darrell. She had also feared being put in prison due to her
debt. Through this she had suffered a loss of confidence in her ability to cope
living alone in the community. Having been able to discuss the situation,
Christine said she felt better and, with support, was able to sort out her
threatened tenancy and other financial affairs. She arranged to pay off her
debt in a manageable way. Christine still felt quite lonely and continued to
miss Darrell.
At this point, Christine and the other workers were informed that the
sheltered workshop was to cease trading and would be closed down. They
were told that all workers would be made redundant. Christine became upset
and then withdrawn. She stayed at home in her flat crying most of the time
and gave up visiting friends and family.
Before being told of her imminent redundancy, Christine had already
experienced a loss of equilibrium through Darrell’s leaving her and through
her subsequent debt. She had entered a vulnerable state with these events.
On her own she had not been able to fully solve these problems and had
suffered tension and stress. After a time and with intervention, she had found
encouragement and advice from her family and support workers that had
enabled her to find resolutions to these problems. Christine had restored her
equilibrium but remained somewhat vulnerable.
The announcement of the closure of the sheltered workshop, and that
she was to be made redundant, was the major event and precipitating factor
that caused an active crisis for Christine. This was about the loss of her way
of life, about her role and purpose and the potential loss of support systems
that surrounded her at the sheltered workshop. Christine was unable to cope
with the prospect of this event. Her problem solving capabilities became
overwhelmed. Christine was not managing her feelings and regular coping
mechanisms were not working for her. Christine needed further support to
enable her to work through the active crisis towards a satisfactory resolution.
CASE STUDY TWO

Jason, a young man with learning disabilities, had lived with his parents, two
sisters and grandfather in the family home all his life. Jason generally found
changes in his life quite difficult. At 19 years old, Jason had just finished the
transition of moving from school to college, which had not been an easy
process for him, when his grandfather unexpectedly died. He had been very
close to his grandfather, who had been his main carer since childhood, and
was devastated by his death.
Jason’s usual easy-going behaviour altered; he had angry outbursts both
at home and in public and at times became aggressive towards others. Jason
kept asking where his grandfather was – his parents did their best to explain
to him but seemed unable to get him to understand. This was not helped by
having to cope with their own grief. A week after the bereavement, and the
day before the funeral, Jason refused to leave the college classroom to return
home and sat with head in hands. The staff were concerned about Jason and
wished to support him in his loss, and thus contacted Jason’s social worker.
Jason’s social worker first listened to him and gave him time to express
his grief and cry. She spent the immediate time listening to Jason and asking
questions to clarify the situation, and a little later took him home. In the
short term, she arranged to see him the next day and subsequently made a
plan with him and his family about how to manage the next few weeks. In
the longer term, she arranged a strategy in consultation with Jason for him to
have specialist bereavement counselling to help him better understand and
come to terms with his loss.
With the support of his family, friends, college staff and the counselling,
Jason was able to work through his bereavement and in time come to terms
with his grandfather’s death. Two years later, Della, a friend of Jason’s from
childhood, became terminally ill and he was told about this. Through the ex-
perience of his grandfather’s death, Jason had learnt some ways of dealing
with bereavement and therefore had more personal resources to think about
and deal with this subsequent event.
When Jason was undergoing the transition from school to college, he found
this change difficult, his equilibrium was challenged and he entered a
vulnerable state. Over the time of the transition, Jason found ways of
adjusting to the new situation but was not yet comfortable with it. It was at
this stage that his grandfather’s unexpected death became the precipitating
factor that pushed Jason into active crisis.
Over the days, Jason was not able to make sense of his loss and, when his
grandfather did not return as he so fervently hoped he would, he became
overwhelmed. In her intervention, his social worker asked Jason what had
happened and then listened to his explanation. She gave him time to express
his feelings and acknowledged how difficult it must be for him. She then
asked him what help he would most like. Jason was able to identify being
afraid of and yet wanting to attend the funeral. He also said he wanted help
with certain activities that had been habitually supported by his grandfather.
Together they then drew up an initial plan with achievable tasks which
enabled Jason to take back some of the control that he felt he had lost. The
first task the social worker agreed to undertake was to discuss the whole situ-
ation with Jason’s family, which she did when she took him home. A more
detailed explanation of what would happen at the funeral was made to Jason,
and one sister said she would take special care in supporting his attendance.
Jason and the social worker agreed to have weekly meetings over a six
week period where tasks were identified and agreed. Through this process
he was able to begin to adapt to the situation and find alternative strategies
and support mechanisms to cope with life without his grandfather. In the
longer term, the bereavement counselling was an additional support mecha-
nism that enabled further growth and adaptation on Jason’s part.
When the sad news of his friend’s terminal illness was made known to
Jason, he had some knowledge of death and some resources to draw upon.
He had learned through the experience of his grandfather’s death new ways
of handling such a difficult situation and of adaptation over time. Jason was
able to express his sadness to Della and her family and to visit her several
times. Later he dealt with her death with great sadness, but without becom-
ing overwhelmed by the event or it becoming a crisis for him.
CONCLUSION
It is critical to identify who, or what, is in crisis and how best to work with
this. O’Hagen (1994) clearly identifies the risk in trying to rescue people in
crisis. A structured plan is required and a methodical approach beneficial. It
is important not to jump in and undertake a rescue of the person. Instead,
there is a need to work with the person, supporting the individual through-
out the recovery process. This can be achieved by working at the person’s
speed, using the individual’s preferred communication methods and by
using theory to inform practice. When work is undertaken with someone
who is in active crisis and unable to manage, the use of crisis intervention
may be beneficial. It is also important to evaluate how the person will be
enabled to develop mechanisms and skills to cope.
Crisis work is demanding and the workers involved often need to
commit themselves to being available during the following days to give
adequate support. This can be intensive and time consuming, but if carried
out effectively should achieve the best possible result for the person.
Key points
• Consideration of who is actually in crisis needs to be made,
whether it is the person being supported, someone else such as
the staff team or the service or organization.
• Crisis intervention can be a valuable way of explaining and
working within a given situation. However, on its own it does
not provide a full structure of how to support a person during a
crisis.
• Other theoretical perspectives can be used to help inform ways
of providing care and support for a person when they are in
crisis, such as task centred work.
• Crisis intervention is not about rescuing a person but providing
a structured and methodical support process.
• There are formulated approaches that can be used to help
understand each step of a crisis.
• The more problems a person is able to work through and
resolve during a crisis, the better the person’s coping strategies
will be for future situations (Golan 1978).
• Crisis intervention is provided through a quick, intensive
response and only really works over a short period of time.
10
Society’s Influences on Practice
INTRODUCTION
In this chapter, we will explore some of the influences that society can have
on the provision of care and support – influences that can affect groups
within society, including people with learning disabilities. The influences to
be explored are from three specific areas: sociology, social policy and
legislation.
We will start by looking at sociological development and the structure of
society and go on to consider how these can influence care and support. The
way that care provision has developed and how the care role is perceived will
be explored in the context of today’s society. In the second section, we will
briefly look at social policy and political development. This will focus on the
impact of Governmental power, some policies that are on the political
agenda and the consequent money and resources available to meet care and
support needs. The third section will focus on legislation, policy and proce-
dure. These can be both supportive and controlling, either in promoting or
restricting care provision. There is a legislative framework that provides
guidance to care provision; however, it is not always straightforward and as-
pects of this will be explored.
In looking at the influences of society, sociology lends insight into the
position of people with learning disabilities within society, how this minor-
ity group has been oppressed and discriminated against, and why this may
occur. Through the development of social policy and legislation, ways of
challenging oppression and discrimination have evolved and, in part, been
implemented. Whilst such challenges go towards positive change, their aims
are not always fully achieved in practice. From our brief exploration, full jus-
tice to these influences cannot be accomplished. Our aim, however, is to raise
awareness of the influence of society on people with learning disabilities.
215
This basic understanding then enables further thinking about some of the is-
sues involved.
Issues from each section will be illustrated using two case studies.
SOCIOLOGICAL PERSPECTIVES
INTRODUCTION
Sociology is a vast and well documented discipline and in this section we
intend to consider some of its aspects and their relation to practice. Initially,
we will mention some of the people and perspectives that have had a major
influence on the development of sociological explanations. This will be
followed by some of the sociological concepts and models that can help
inform or support understanding of the influence of society on the people
who live within it. As mentioned in the chapter introduction, this is a
theoretical perspective that can inform us about the structure and aspects of
society, but does not provide a hands-on approach to practice.
We aim to consider how society’s perception of an individual’s place and
position in the world may affect his or her life. The understanding of socio-
logical perspectives, and how they can inform practice when working with
people with learning disabilities, will be reinforced through two case studies.
SOCIOLOGY: THEORIES AND PERSPECTIVES

Sociology can be defined as ‘the study of social structures and different life
experiences of individuals within those social structures’ (Thomas and
Pierson 1996, p.359). One aspect of sociological study focuses on the
different life experiences of people within social structures. Social influences
that can affect social structures may include, for example, social class, gender
and race. Explanations of society differ according to the perspective taken.
Haralambos and Holburn (1993) and Jones (1996), for example, pro-
vide in-depth explanations of many of the key people and sociological
perspectives that have played a major part in the development and under-
standing of sociology as a discipline. We will mention three of the key
people often quoted in sociological texts:
SOCIETY’S INFLUENCES ON PRACTICE 217
• Emile Durkheim (1858–1917): theory of functionalism.

• Karl Marx (1818–1913): theory of materialism/Marxism.
• Max Weber (1864–1920): theory of social action; Verstehen,
theory of actors.
(Adapted from Jones 1996)
The majority of sociological theories have been developed in parallel with a

changing society over a number of years. Even so, many theories can still
provide insight and understanding into aspects of today’s society. There are
many different sociological theories and approaches, some of which are:
structuralist, interpretive, structuration, postmodernism and feminism. Each
theory provides its own explanation of society, structures and the people
within them.
A structuralist approach is one method of understanding society. ‘A
“Structuralist” approach emphasizes the importance of social structure, and
minimizes the importance of the actions of individuals in society’
(Haralambos and Holburn 1993, p.151). Structuralism, as a general term, re-
fers to any sociological approach which considers and regards social struc-
ture. The approach suggests that social structures influence society more than
social action does. Two theoretical approaches that further explore a
structuralist perspective are: functionalism (for example, Auguste Comte
1798–1857 Herbert Spencer 1820–1903) and conflict theory (for exam-
ple, Karl Marx 1974).
Functionalists stress the extent to which the different elements of the
social structure fit together harmoniously. Marxists stress the lack of fit
between the different parts, particularly social classes, and so emphasize
the potential for social conflict. (Haralambos and Holburn 1993,
p.765)
Different explanations can be found through the views of an interpretive
methodology. One such explanation is:
…interpretive perspectives usually reject the view that society has a
clear structure which directs individuals to behave in certain ways…so-
ciologists need to understand and interpret human behaviour and dis-
cover the meanings that lie behind it. (Haralambos and Holburn 1993,
p.795)
Interpretive methodologies include an interactionist approach (for example,

George Herbert Mead 1863–1931 in Marshal 1996, p.318) and
phenomenology, (for example, Alfred Schutz 1899–1959).
The two sociological perspectives of structuralism and interpretation,
were drawn together to inform the development of structuration (Anthony
Giddens 1976, 1979, 1984).
Giddens claims that structure and action are two sides of the same coin.
Neither structure nor action can exist independently; both are inti-
mately related. Social actions create structures, and it is through social
actions that structures are produced and reproduced… (Haralambos
and Holburn 1993, p.815)
Thus, structuration proposes that the actions of individuals and the social
structure cannot be separated.
Other explanations can be found by studying work such as post-
modernism (for example, Foucault 1973) and feminism (for example, Po-
land 1990). There are many other combinations of ideas that contribute to
the overall discipline of sociology.
The feminist perspective is useful to consider as it can help to focus on
groups disempowered within society. The perspective focuses on how more
power has been given to men than women in society. This power imbalance
happens within many social institutions, such as the family, education, the
law and the media. A feminist understanding provides insight into the many
issues that can affect individuals or groups of people marginalized by
society’s attitudes to them. Feminist sociologists have aimed to achieve a
balanced method of study and research that does not duplicate the power
imbalance inherent in social structures. Feminist sociology has contributed
to highlighting the multiple interpretations and interests that should be con-
sidered when trying to understand any social situation. People are often dis-
criminated against as members of minority groups; for example, when
labelled as learning disabled. Further discrimination can occur for women
with learning disabilities. The feminist perspective can be useful when con-
sidering oppression and discrimination within the learning disabilities field.
The perspectives discussed are examples of different sociological theo-
ries. Consideration and use of such perspectives can highlight the relevance
of sociology to care and support work. The changing political and societal
structures may have an ongoing effect on the care and support of people
with learning disabilities. The evaluation of people’s positions in society,
their views, the structures that affect them and how this may impact upon
them can, in part, be informed through sociological analysis.
Sociology is a scientific discipline (Haralambos and Holburn 1993).

Sociological research and studies can be carefully and fully checked and
re-tested by others. This process is used to make certain that a piece of work
is going to make a genuine contribution to the overall sociological knowl-
edge base, and validates the effectiveness of sociology. Although sociology
is a scientific discipline, it is also a discursive one; it examines people’s under-
standing and experiences of the world.
In social and health care for people with learning disabilities, the sup-
port provided should encompass, or at least consider, the major aspects that
affect life. Such aspects referred to could include home life, work, leisure,
health and care needs. An encompassing view of care could be considered as
providing care and support for the whole person. Each individual piece of
care may be specific, but should be looked at within the context of the whole
care. Without this overall view, one piece of work may conflict with another
and do a disservice. A holistic approach supports and promotes partnership
and joint working and provides the underpinning for anti-discriminatory
and anti-oppressive work. Care provision is often complex and many differ-
ent people play a part in it. Each care provider may impact upon and influ-
ence the person receiving care. To an extent this may also influence society’s
views on how people are perceived, where they are perceived to be in the hi-
erarchy of society and how they are accepted (Haralambos and Holburn
1993).
SOCIOLOGY INFORMING PRACTICE

Sociology provides an explanation that helps to inform and illustrate the
individual’s place in the world: where a person is within the hierarchy of
society, what a person does and how the person is viewed. Additionally,
sociological studies can provide an explanation of a variety of issues:
• culture and society
• culture and behaviour
• socialization
• norms and values
• status and role
• theories of society
• views of human behaviour.
(Adapted from Haralambos and Holburn 1993)
Understanding society’s influences helps to provide a different perspective

from some other theories in this book. However, being aware of society’s
influences does not remove the moral judgements and discrimination found
within society. What it can provide is a tool to identify specific influences
that may affect a person’s social situation – influences affecting behaviour,
beliefs and attitudes on both the part of the worker and the person being
cared for and supported.
In looking at the wider picture when identifying how a person manages
his or her everyday life, it is possible to challenge and move on from some as-
sumptions and expectations held within society and its structures. Detach-
ment helps workers to stand back, reflect and evaluate the value of the care
and support they contribute. Reflection and evaluation could include aspects
such as culture, race, gender and ability. If a person or group of people differ
from the majority, their part within society is still relevant when considering
how society operates. These aspects are all part of the concept of the social
phenomenon of society.
SOCIAL PHENOMENON
Human beings need to eat and sleep, need to have warmth and shelter and
can make use of some, if not all, senses: sight, hearing, touch, taste and smell.
People undertake tasks and do specific things for social, cultural, economic,
political and psychological reasons. These are fundamental and occur
throughout the world but are not always carried out in the same way. The
above factors play a part in social phenomenon. Each area of social
phenomenon such as culture, economics and politics can be studied.
Sociology endeavours to undertake study at a holistic level and tries to
take account of the fullest possible explanation of human behaviour. Studies
may inform us of many different aspects of a person within society and ex-
plain why the person may not be accepted. Although sociology helps to
identify the issues, it does not in itself solve the problem being faced. How-
ever, if the problem is identified, it can be acknowledged and social and po-
litical solutions worked towards. An awareness of the impact of society on
people with learning disabilities starts to provide an underpinning of how
areas of oppression and discrimination can be challenged, minimized or
eradicated.
To enable an understanding of social problems there is a need to carry
out informed, thorough and objective analysis of the related issues. From this
we begin to understand where views, attitudes, prejudices and emotions
originate. It also helps to identify how people with learning disabilities have
come to be in the positions that they are within society. A basic question that
can be asked to help inform a situation is: ‘What is happening here?’ Addi-
tional questions could then be asked in order to think more widely. Such
questions could include:
• What behaviour is taking place and why?
• Who or what are the influences on the situation?
• What are the gender, age, culture and race issues?
• How are people relating to each other?
By asking such questions, the effect these aspects have on the situation can
be thought about. Then direct action, support or influence on a change of
policy or way of working can be made. The questions and observations
undertaken can be considered within the theoretical framework that informs
sociologists – the framework in which observations, experience and inter-
pretations of society are made.
EVALUATING SOCIOLOGY AND ITS USES

There are some points to consider when using sociological theory to inform
practice. The diversity and abstract nature of sociology, combined with its
particular terminology, can make it complex. Sociology exists to explain
society, it does not provide clear and structured solutions to society’s
problems. The explanations can provide us with an understanding to help
inform and achieve social reform and develop supportive social policies.
(Social policy development can be studied in more detail in the next section
of this chapter.)
From our brief exploration of some aspects of sociology we hope to have
shown that, by understanding the influence of society and by looking at var-
ious interpretations, it is possible to think more widely about the position of
people with learning disabilities in society and how they are perceived. Two
case studies will now be used to illustrate how sociological understanding
can help inform day to day practice.
CASE STUDY ONE

Serena lived in supported community living and attended her local college.
As part of her college course, Serena had work experience two days per week
at a local garden centre. She enjoyed this work and was able to complete
most of the different tasks involved.
After a few months of her work experience, a part-time job became

available at the garden centre and Serena applied for this post. She was un-
successful in her application and was told that as she was not able to com-
plete all the tasks necessary, she had not been appointed. The job had been
given to a man.
From a feminist perspective looking at disempowered groups in society,
Serena was affected as a woman with learning disabilities. She had proved a
steady and reliable worker, but not good enough to be taken on as a paid
worker. Both her learning disability and her gender proved a negative
influence upon her employment. There was an expectation about the role of
the garden centre worker and the need to be fit and strong. Whilst Serena
fulfilled these expectations, other perceptions of her prevailed. Prior
knowledge of her learning disability, and the few tasks she was unable to
undertake, had also influenced the decision not to employ her.
There had not been any thought given to the structure of the organiza-
tion and how it disempowered Serena as a potential paid worker. Had mini-
mal organizational changes and small alterations to job allocation been
considered, then these would have enabled Serena to realistically compete
for, and satisfactorily carry out, the job.
CASE STUDY TWO

Okolie lived in supported housing and held a joint tenancy with his friend
Addy. He was able to use the local shops and some nearby facilities. Okolie
was unable to use public transport on his own. He therefore had to rely on
others to transport and accompany him or he had to pay for taxi fares. After
some months of living in supported housing, Okolie was introduced to a
befriender, Alfred, who he met with once a week and who supported him in
accessing leisure activities in the community.
On Friday evenings, Okolie regularly attended and enjoyed a leisure
club, all of whose members had learning disabilities. He travelled there by
minibus along with other group members. Okolie also enjoyed model mak-
ing. Having been befriended by Alfred, Okolie was able to join a club for
model makers and go there in Alfred’s car.
Despite living in a flat in the community, there were still some barriers to
Okolie’s social inclusion. There was the barrier of his being unable to use
public transport leading to frequent use of minibuses along with other

people. This could be seen to reinforce the stereotypical image of people
with learning disabilities going out and travelling in groups. It could also be
seen to strengthen the perception, held by many in society, that people with
learning disabilities prefer to be with others with learning disabilities.
Before being befriended by Alfred, Okolie had not known to ask about,
and was unaware of, other leisure groups and clubs in his locality. The social
structures he lived within were the ones he knew or had been told about.
Through his friendship with Alfred, further social structures were opened up
to him. Okolie was enabled to attend the club for model makers, and through
this social interaction was perceived positively by group members. This in
turn had a positive effect upon the perception by some members of society of
the skills and abilities of people with learning disabilities. If looked at in
terms of structuration both the social structure and the actions of individuals
had influence on Okolie’s situation.
CONCLUSION
Some of the sociological theories discussed may appear to relate to practice
more readily than others. Sociological theories that deal with interpersonal
relationships on a small scale may seem more pertinent to individual
experiences. On the other hand, sociology that looks at the large-scale social
structures may appear removed from the hands-on support for people with
learning disabilities. Both small- and large-scale perspectives can help to
identify differences of power, inequality and the constraints of society. Their
relevance to everyday practice, and to issues such as inclusion and exclusion,
may give useful insights and provide a focus for action.
Key points
• Various writers have influenced the sociological understanding
of society; their ideas differ, but the majority try to provide an
explanation of social structures and the people within them.
• Some sociological concepts can offer explanations and inform
understanding of the impact of society upon people with
learning disabilities.
• Sociological concepts can also help identify and increase
understanding of an individual’s place in the world.
• Social phenomena occur throughout the world but may vary due
to culture, economics and political reasons.
• A feminist perspective is very useful when considering
disempowered groups within society.
• Although sociology exists to explain society, it does not provide
clear and structured solutions to society’s problems.
• Sociology does not provide a hands-on approach to working
with people with learning disabilities; however, it informs us
about the structure of the society in which we live.
SOCIAL POLICY
INTRODUCTION
In this section, we will explore some of the issues surrounding social policy.
Governmental policy in the area of social welfare, policy development and
policy implementation may not necessarily be fully understood by support
and care workers. However, the ability to analyse the impact of policy either
directly or indirectly on people with learning disabilities can prove useful.
Social policy affects so much: education, health, housing, benefits and social
services. An understanding of the different perspectives of political parties
can offer some explanations of how social policy develops. This section aims
to provide a brief outline of social policy; it is not intended to explore
specific polices. However, the principles of policies and how they may
influence resources and support work with people with learning disabilities
will be considered. Case studies highlighting the influence of social policy
will be used.
BACKGROUND TO SOCIAL POLICY

In Chapter 2 a brief outline of the process of policy making was given. No
further exploration will be made here into the process of policies becoming
legislation. However, we will consider the social and political influences on
policies that have been part of the creation of the welfare state over the past
50 years. Through this, an understanding of the development of social
policy and its influence upon today’s society will be provided.
Social policy is described as ‘government policy in the area of welfare,

and the academic study of its development, implementation and impact’
(Thomas and Pierson 1996, p.350). The study of governmental policies
through political science and public administration played its part in the de-
velopment of social policy studies. The Government’s involvement in the
creation of policies, how they are implemented and their impact on individ-
uals and society, are key to understanding social policy.
The Government played a role in pre-Second World War welfare with
some involvement in pensions, state education and hospital care. However,
the creation of the active welfare state is more associated with the post war
period (Alcock 1996). We will initially explore some aspects of the develop-
ment of the welfare state. This may appear a basic explanation of the devel-
oping social welfare system; however, it is written as a brief introduction to
the concept.
A BRIEF OVERVIEW OF THE WELFARE STATE

There have been many studies about social welfare over the last one hundred
years or so (for example, Midwinter 1994; Page and Silburn 1999). In this
section we will briefly explore its development from the 1940s. During the
Second World War there were great changes in the labour market with many
men going to war and many women taking over work that was previously
occupied by males. In 1942 the Beveridge Report was completed as an
official report of the wartime committee for social insurance. The report,
called Social Insurance and Allied Services, can still be seen as influencing the
foundation of welfare services of today.
Beveridge identified five specific areas that needed to be tackled to pro-
vide a greater level of equality within society. The five areas identified were:
• Want.
• Disease.
• Ignorance.
• Squalor.
• Idleness.
It was proposed that the issue of want be addressed by introducing and
developing a system of income maintenance – the development of a social
insurance scheme that would help to support people unable to work through
unemployment, sickness or through retirement. The payments would be a
flat rate and financed through insurance payments, and additional support
would be provided for wives and dependent children. Other proposed

benefits included maternity, widows’ and death grants. It was recognized
that not everyone would be in a position to pay into the insurance scheme, so
a means tested option would be required to provide a safety net. Beveridge
made other proposals to combat the five areas he identified as problematic in
society. The aims were to eliminate poverty, eliminate family poverty,
promote people to work, provide comprehensive health care and avoid mass
unemployment.
Many of Beveridge’s proposals were implemented in the following
years. The Family Allowance Act 1945, National Insurance Act 1946 and
the National Assistance Act 1948 all came into force. The Government,
however, rejected some of the overall proposals; for example:
• pensions being phased in over 20 years
• unemployment benefit being paid indefinitely in preference to a
one year limit
• payment of benefit to people on separation from marriage.
These changes all created a greater dependency on the means tested benefit
system. National Assistance was also claimed by many people to help with
housing costs. People with long-term health needs and disabilities were also
dependent on means tested benefits and have in reality continued to be
treated as a disadvantaged group within society (Williams 1989).
Beveridge’s proposals reflected the majority patriarchal values of the time.
As time has progressed, changing values, views and structures within society
have caused Beveridge’s proposals to be less satisfactory than first envisaged.
The continuing rising cost of welfare provision in the mid-1970s caused
the Government to raise concerns of it being out of control. The welfare
ideal of services and benefits was initially related to an expectation of full
employment. Full employment would generate income through taxation
and would go towards offsetting the welfare costs (Hills 1990). During the
mid-1970s an oil crisis occurred, with a resulting unstable economy that
made full employment very difficult to achieve. The outcome was an increase
in inflation and a soaring rate of unemployment. At this time there were dif-
ferent political views on how welfare provision should be made. People be-
came far less willing to fund welfare provision through taxation and used
their vote to demonstrate this. The Conservative Party (New Right) intro-
duced the idea that welfare provision could be opened up to further involve
the private and voluntary sectors. If, for example, people took responsibility
for their own health care and pensions through personal policies, they could
purchase services to meet their needs from the independent sectors. Ideally,
this would lead to less dependence upon state welfare. Additionally, the
New Right argued that welfare benefits created a disincentive to work as
they were too generous, causing dependency upon the state.
The National Health Service and Community Care Act 1990 was insti-
gated during the early part of the 1990s and reinforced the need for a variety
of care provision. With the opening up of the care market and subsequent
changes within the statutory sector, a split occurred between the purchasers
and providers of services. Statutory services such as social services would
carry out assessments and then purchase care from the open market. Some
schools, GP practices and hospitals became fund holders and managed
themselves. Even with these schemes, the public interest in a welfare state
survived. The change of government to Labour in 1997 has had its own level
of impact on social welfare and its changing structure.
The idea of purchasers and providers of care still operates within the
changing structure of care provision. One of the main changes the present
Government has worked towards has been benefit reform. Eligibility criteria
for access to local authority services and benefits changed further. More reg-
ular checks and independent assessments are carried out on claimants, fraud
squads have been further developed and incentives for people to return to
work introduced.
The development of social welfare and social policy is an ongoing pro-
cess. The political party in power at a given time, the economy of the coun-
try, social perspectives and market forces all play a part in the process of
social welfare provision. The overall costs of paying benefits and providing
welfare support have continued to place a heavy burden on the government
of the day. There is a focus on how the best possible services can be provided
at the best possible price. The concept of ‘Best Value’ is one of the current
initiatives in the quest for value for money and quality services where perfor-
mance and provision are monitored, whether they are provided by the statu-
tory, voluntary or private sector.
As social welfare is continually changing, it is useful to pay attention to
how individual agencies are affected. Current initiatives, policy changes, re-
source expenditure and priorities of need may be the outcome of such
changes. An understanding of social policy and its influence can help inform
aspects of practice.
THE FUNDING OF TODAY’S SOCIAL WELFARE

Welfare can be described as the provision of health care, education and social
services. Welfare also provides benefits including income for unemploy-
ment, sickness and old age. A large part of the provision of care and support
is made without actually being directly financed. Informal care of the sick,
disabled and older people is often provided by family members and relatives
who receive little or no money for providing support. The formal aspect of
provision is the part that needs financing; this includes payments for
provision of services, benefit payments and maternity leave. Money is raised
through taxation and financial balancing of the government purse. Some
people elect to pay for their own care and others pay as the result of means
testing. Some people receive financial support through private insurance
schemes; however, many rely on the state for financing their care.
Care provision is not a limitless facility; decisions must be made about
who will receive the welfare moneys available. The amount of finance avail-
able and the limitations of this play a critical part in the setting of eligibility
criteria, resourcing and the outcome of provision. This raises the concern
that whilst care provision remains financially led, there is a risk that individ-
ual needs will not be met. An example of how this may work in practice is
that of legislation and policies instigated to ensure the needs of minority
groups are met. Problems arise when the budgets allocated do not provide
adequate finances to implement the services required. Thus, despite the
intention to ensure culturally sensitive services, this is not necessarily
achieved.
Patterns of policy and financial development for welfare provision can
be found in many books looking specifically at welfare during the 20th
century. We are not able to do full justice to the subject in this section and
suggest additional reading could provide a more in-depth explanation of the
areas highlighted. We will now briefly look at the basics of social policy in
relation to disability and to people with learning disabilities.
DISABILITY AND SOCIAL POLICY

The impact of social policy is measured against notions of quality which
are culturally, structurally and bureaucratically defined. In the case of
disability ideas about quality are bound up with (a) cultural values about
the role of disabled people in society and (b) the social relations of wel-
fare production in a capitalist economy. (Priestley 1999, p.11)
The impact that the medical and social models of disability have on how
people are perceived within society has an influence over policy making.
Disability pressure groups have been formed that have highlighted the need
for social model inclusion in policy development.
The budget restrictions prevalent in services for people with learning
disabilities need to be challenged if realistic, needs-led care and support are
to be achieved. ‘The liberation of disabled people threatens powerful profes-
sional interest groups, it brings into question the legitimacy of the welfare
state and it challenges the economic imperatives of capital accumulation’
(Priestley 1999, p.12). This sums up the battle facing the ongoing develop-
ment of disability related social policy. A far greater insight into the com-
plexity of disability politics and social policy development can be found in
Priestley (1999) and Drake (1999).
We will highlight some of the issues relating to social policy and people
with learning disabilities through the use of two case studies.
CASE STUDY ONE

Rozia lived in England with her parents until the age of 20, when she moved
into a housing association flat with her own tenancy. Rozia belonged to a
local advocacy group and also had access to a local independent advocacy
service. Rozia attended college full time and, before the course ended,
wished to think about her future options. She discussed ideas with her
parents, friends, college tutors, support workers and with people in the
advocacy group. Rozia was working towards attaining paid work and in the
meantime wished to undertake a variety of activities, including voluntary
work and training courses. Rozia had heard about direct payments and the
possibility of directly purchasing care or support from agencies or in-
dividuals. She went to her local advocacy service for advice on this matter.
Rozia was supported in applying for direct payments. She was told that there
was a local group who had set up a support scheme for people receiving
direct payments and who could help her. Rozia approached this group; they
guided her through the process of finding an independent person to help set
up a bank account and monitoring scheme and give support with the
running of the direct payments account.
As part of the developing philosophy of community living, Rozia was
enabled to make informed choices both about her style of living and daily
activities. Due to changes in social welfare and social policy brought about
by evolving social change and through pressure from disability rights

activists and pressure groups, some local authorities now offer money for
individuals to make direct payment for care and support. Direct payments
enabled Rozia to purchase the support she had been assessed as needing
from service providers of her choice, and to pay for the services herself. This
gave Rozia more control over her life and more flexibility in accessing
support and tailoring it to her needs. This in turn promoted Rozia’s presence
in society and minimized barriers to her inclusion.
CASE STUDY TWO

Rob lived at home with his parents and two brothers. Whilst he coped quite
well with many aspects of his life, there were some aspects Rob needed
support with, including personal care, laundry, and preparing meals. Rob’s
parents belonged to a carers’ group and through this heard that Rob might
be entitled to Disability Living Allowance (DLA). Rob and his parents
completed the forms. Unfortunately, when Rob heard back from the benefits
agency his application for benefit had been rejected.
Rob and his parents went to their local advocacy service for advice. Rob
was then supported by an advocate in the process of appealing against the
benefits agency’s decision. The decision was altered and Rob was then
awarded the care component of the DLA.
Rob applied for a social welfare benefit believing in his entitlement. In the
first instance, his application was rejected. He did not feel able to self-
advocate concerning his entitlement and so asked for support and advice
from the advocacy service. With the support of an advocate to work through
the process of appeal, Rob was ultimately able to receive the care component
of the benefit.
Advocacy services are part of the developing changes in social welfare
(see Chapter 6). Many people with learning disabilities have access to self-
advocacy groups. Access to independent advocates is often available to
support individuals with many different aspects of their lives. In England,
Valuing People: A New Strategy for Learning Disability for the 21st Century, issued
by the Department of Health (2001a), indicates the strong commitment to
developing and supporting advocacy services and moneys have been allo-
cated to achieve this in a variety of ways. The importance of social inclusion,
support networks and advocacy is also reinforced in Scottish policies such as
‘The Same as You?’ A Review of Services for People with Learning Disabilities
(Scottish Executive 1999). The introduction of Valuing People and ‘The Same
as You?’ are good examples of how social policy affects working issues.
CONCLUSION
In a section as short as this it is impossible to provide a complete or in-depth
guide to social policy. What we have endeavoured to show is that govern-
ment and social policy have a direct effect on resources available and how
services are provided. The payment of benefits and the opportunity to
integrate into society are influenced by social policy. We believe a strategy of
including people with learning disabilities in policy development is
essential.
Pressure groups and user groups supported by advocacy, empowerment
and participation can play a part in the ongoing challenge of social policy.
Without the acknowledgement of people’s needs, social policy cannot be
challenged and changed, and marginalization will continue. We believe ap-
propriate benefits to meet needs and to enable people to live and function
within society should be provided. As care and support workers, the impact
of social policy on people with learning disabilities should not be underesti-
mated, and when policies restrict people, relevant support to promote
change should be considered.
Key points
• Social welfare has developed considerably over the last 60 to 70
years; welfare reform moved on following the Second World
War. The Beveridge Report played a key part in the
development of social welfare.
• Different perspectives may be held by political parties; these can
influence social policy development.
• Welfare ideals changed during the mid-1970s; this affected how
social care was provided.
• Community Care in the 1990s changed the ethos of care and
brought about an increase in voluntary and private care
providers.
• Social policy affects so much: education, health, housing,

benefits and social services.
• The Government and social policy have a direct effect on
resources and how services are provided.
• Social policy development continues to change and impact upon
care and support provision.
LEGISLATION AND POLICY

INTRODUCTION
In the previous section we provided a brief summary of social policy and its
impact on care provision. Governmental thinking and social policy impact
upon people with learning disabilities through legislation and policies that
relate to, inform and guide practice that directly affects care provision.
We will initially explore some aspects of legislation and policy. The dif-
ference between powers and duties, and how these relate to care provision,
will be highlighted. This will be followed by a brief introduction to some
specific pieces of legislation that may be used in practice. Legislation in Eng-
land, Scotland, Wales and Northern Ireland differ in various ways, but we are
not going to provide a definitive guide to each. However, what we intend to
do is illustrate how legislation, wherever it has been developed, has rele-
vance in day to day practice. The impact of policies that are used in many
agencies will be considered and the conflict that may occur between care and
control highlighted.
Other texts that cover legislation and policies in more depth will be ref-
erenced accordingly. Two case studies will be used placing legislation and
policies into a practice setting.
THE LAW
Information about specific legislation that is used by statutory services and
health, voluntary and private agencies can be presented in different formats
of legal documents. Thompson (2000) provides an explanation of some of
the formats:
• Statute This refers to actual law or Act of Parliament…a fairly

detailed document, which presents the main provisions and any
relevant expectations. Each Act is usually broken down into parts,
sections and subsections…
• Statutory instruments These are minor, more specific documents that
relate back to their ‘parent’ Act…such instruments have the status
and standing of statute…
• Statutory guidance…documents issued by the relevant department…
Such volumes of guidance offer advice on good practice in relation
to specific aspects of implementation of the Act concerned… Such
guidance does not have the status of statute, but there is none the
less a clear expectation that the guidance will be followed…
There are four main levels at which legislation can be interpreted: ‘Statutory
guidance; local policies; precedent; direct practice’ (Thompson 2000, p.34).
Each can influence the care that is provided for people with learning
disabilities. Statutory guidance is issued by governments and directs how
particular pieces of legislation are to be implemented. This informs how
services are to be structured and provided. Local policies are developed by
the local authorities or other agencies providing social care and support.
These policies are devised by the individual agencies to provide explanations
and guidance of the agency’s interpretation of the law and may give
procedures to follow. Precedent describes the development of law following
court cases that make decisions in specific situations. This process is
sometimes referred to as case law and will be explained in more depth below.
In some direct practice situations, the law can provide guidelines and at times
identify specific tasks to be undertaken. However, a level of individual
discretion is sometimes available to workers as legislation does not provide
guidance for all working situations (adapted from Thompson 2000).
Case law is where a specific piece of legislation has been challenged
through the court system. The outcome of the court case can set a precedent
that future court hearings would use as a basis for their decision making.
This process could affect how statutory, voluntary and private agencies pro-
vide a service and may ultimately affect practice. The ongoing process of
testing legislation through case law is an important part of the developing
framework of legislation and its influence over practice. Case law outcomes
are often published or broadcast on the television after court hearings.
Within some of the above legislative interpretations, there are aspects of

direct guidance for people providing care and support; we will briefly ex-
plore this further.
WHAT HAS TO BE DONE UNDER LEGISLATION

Two main terms of guidance are found in many pieces of legislation. The
first is where the legislation states that a statutory authority, such as a social
services department, must/shall do something; this is referred to as a ‘duty’.
The second is where legislation guides what can be done, but gives the
statutory authority the choice whether to undertake the task; these are
referred to as ‘powers’.
A duty is something that an individual or organization is obliged to un-
dertake. An example of this can be taken from the National Health Service
and Community Care Act 1990. Section 46 places a duty on every social ser-
vices department to publish a community care plan for its locality and to up-
date this at least yearly. Section 47 of the same act places a duty to assess the
needs of a person in relation to community care:
…where it appears to a local authority that any person for whom they
may provide or arrange for the provision of community care services
may be in need of such services…shall [duty] carry out an assessment
of his needs for those services. (Department of Health 1989)
Duties can be found in a variety of other pieces of legislation such as the
Mental Health Act 1983, Children (Scotland) Act 1995 and Children Act
1989.
In some legislation a power is granted as a way of guidance. As stated
earlier, a power is different to a duty as it does not have to be carried out. It is
suggested as guidance but it remains at the discretion of, for example, social
services whether to undertake the outlined task or not. The National Health
Service and Community Care Act 1990 gives a power in relation to services;
the option is placed with the authorities about providing services:
…where it appears to a local authority that any person for whom they
may provide or arrange for the provision of community care services
may be in need of such services…having regard to the results of that as-
sessment, shall then decide whether his needs call for the provision by
them of any services. (Department of Health 1989)
Under the Act the assessment is a duty, the provision of services a power and
up to the local authority’s discretion. However, it needs to be recognized that
other pieces of legislation may be referenced to and used that in themselves

have duties and powers. Examples of such pieces of legislation are: the
National Assistance Act 1948; Chronically Sick and Disabled Persons Act
1970 (Brayne and Martin 1997).
Within some legislation there is the duty of control in a given situation.
If it is assessed that a person is of risk to themselves and/or to other people,
then pieces of legislation such as the Mental Health Act 1983 may be used to
impose a level of controlled care. This may involve the person being admit-
ted to hospital and detained over a period of time whilst receiving treatment.
People with learning disabilities would need to fall within the categories
defined by the Mental Health Act 1983 – ‘mental impairment’ or ‘severe
mental impairment’ – and display ‘abnormally aggressive or seriously irre-
sponsible conduct’ (The Maudsley 1999, p.6). Additionally, ‘admission of a
person with learning disability for treatment under the Act may also be con-
sidered if he or she also suffers from another form of mental disorder (for ex-
ample mental illness)’ (Department of Health and Welsh Office 1999,
p.138). According to the Mental Health Act 1983 Code of Practice, ‘Very
few people with learning disabilities are detained under the Act’ (Depart-
ment of Health and Welsh Office 1999, p.138). The Mental Health Act
1983 is both subtle and complex and requires a depth of knowledge and un-
derstanding in its use and application in practice. Other features of care and
control can be explored further in Brayne and Martin (1997) and Braye and
Preston-Shoot (1997).
Thus it can be seen that some legislation informs the process of care and
some the process of control; both might work intrinsically with the other de-
pending upon the presenting situation.
Having briefly explored parts of the structure of legislation we will now
go on to highlight some of the legislation that is used in the learning disabil-
ities field. As mentioned in the introduction to this section, the following is
not meant as a definitive guide and must be read with awareness that case law
or legislative changes can occur at any point.
LEGISLATION AND PEOPLE WITH LEARNING DISABILITIES

In this short section, we are unable to cover the roles of the Scottish
Executive, the National Assembly of Wales and the Northern Ireland
Executive and the different legislation developed throughout the UK; thus,
with careful consideration we decided to focus predominantly on English
legislation as a way of showing legislative structure and its importance in
informing practice.
The legislative framework that predominantly underpins the care and

support role for people in England will now be briefly examined and is
offered here as an example of the legislative process. Some of the legislation
relates to other parts of the UK; however, if practice is undertaken predomi-
nantly in Scotland, Wales or Northern Ireland then the specific legislation
relating to that area will need studying.
Today, the underpinning piece of legislation that guides working with
people with learning disabilities in England is the National Health Service
and Community Care Act 1990. Community Care focuses on the provision
of services to people in the community, not as ‘hospital inpatients’. The ser-
vices should be provided to those who need them and the care co-ordinated
through the care management process. Within community support settings,
day centres and residential units the key tasks are primarily focused on pro-
viding support for people to enable them to live as full and independent lives
as possible. Many of the care and support tasks undertaken are informed by
legislation, policies or procedures, although this may not always be readily
apparent. The ethos of support may differ depending on whether social or
health care is the underpinning factor; whatever the factor, the process of
care is similar.
The proposal for community care was not a new concept and continued
to focus on how care should be provided within a flexible mixed market.
What did change was the shift of emphasis from the statutory sector provid-
ing the services to managing them. It encouraged the diversity of service
provision through working partnerships between social services, health ser-
vices and private and voluntary sectors. Services should be responsive, flexi-
ble and cost effective in meeting individual needs and oriented towards the
people using the services. Although the Act was dated 1990, it was not put
into practice until 1993 in many areas (Brayne and Martin 1997).
Six objectives for the Act were identified:
1. To promote the development of domiciliary, day and respite services
to enable people to live in their own homes wherever feasible and
sensible;
2. To ensure that service providers make practical support for carers a
high priority;
3. To make proper assessment of need and good care management the
cornerstone of high quality care;
4. To promote the development of a flourishing independent sector
alongside good quality public services;
5. To clarify the responsibilities of agencies and so make it easier to

hold them to account for their performance;
6. To secure better value for taxpayers’ money by introducing a new
funding structure for social care.
(Department of Health 1989, p.3)
The Act proposed that there would be an accurate assessment of community

care needs and individual need. With the needs assessed, careful planning for
support services would then be made. The role of the care manager
(sometimes referred to as social worker, commissioner or purchaser) was
proposed as being:
• to identify people in need in the community
• to develop methods of referral that ensure the accessibility of
services for all in the community
• to plan and secure the delivery of packages of care
• to monitor the quality of care provided
• to review service users’ needs.
(Adapted from Department of Health 1989)
Services should be able to respond to individual need and be flexible in the

way needs are met through service provision. There should be a choice of
services available to the person receiving the support. The choice of what to
access should be made with the individual and, with his or her agreement,
family members, carers, and independent advocates. In principle, this sounds
a positive process; in reality, the budget and resource restrictions faced by the
majority of agencies may hinder the process and outcomes.
The National Health Service and Community Care Act 1990 places the
duty of assessment on statutory services for people that are vulnerable and
that may require support. The definition of ‘vulnerable’ is found in a piece of
legislation that is now over 50 years old, the National Assistance Act 1948.
Section 29 of the Act describes vulnerable adults as
persons aged eighteen or over who are blind, the deaf or dumb, or who
suffer from mental disorder of any description, and other persons aged
eighteen or over who are substantially and permanently handicapped
by illness, injury, or congenital deformity or such other disabilities as
may be prescribed. (NAA 1948 in Brayne and Martin 1997, p.280)
This broad description includes people with learning disabilities. With the
identification of the person’s vulnerability, an assessment can be undertaken
and other pieces of legislation used to inform the nature of the support
required and subsequently provided.
The National Assistance Act 1948 instructs on the need to provide guid-
ance and information about services available, sheltered employment, train-
ing facilities and residential accommodation. The Chronically Sick and
Disabled Persons Act 1970 states that vulnerable adults should be supported
with specific services such as practical assistance and providing or helping
with adaptations or special facilities in the home. Other legislation may also
be required to inform practice. Some of the Acts that may be used include:
• Carers and Disabled Children Act 2000
• Human Rights Act 1998
• Housing Act 1996
• Disability Discrimination Act 1995
• Disabled Persons (Services, Consultation and Representation) Act
1986
• Registered Homes Act 1984
• Sex Discrimination Act 1975
• Sexual Offences Act 1956
There are other pieces of legislation that may be used by or affect people
with a learning disability.
Following an initial assessment, if services are required then a referral is
made to the relevant team or organization. For example, the referral could
involve health, housing, education and services for mental health, older age,
physical disabilities or child care. Other legislation may then be used to
inform practice. It is not practical to go into all of these in this section and
other texts that specialize in legislation may be of interest (for example,
Braye and Preston-Shoot 1997; Brayne and Martin 1997; Mandelstam
1998, 1999).
LEGISLATION AND POLICIES IN PRACTICE

Funding and the way care is commissioned may vary between geographical
areas. However, there is a level of similarity in many processes. A person from
a commissioning agency will assess, then purchase and fund, the support
required. Whatever process of care management is being used, there is a
difference between the roles of service purchasers (commissioners) and

service providers. In some areas the roles and the processes of purchaser and
provider are changing and a person centred approach has been introduced.
This is a different way of supporting people to access their required services
and in most cases will work alongside care management. A person centred
approach is covered in more depth in Chapter 8.
The process of providing care that meets an individual’s changing needs
throughout life is one that requires careful attention, however it is accom-
plished. The care and resources available are often limited and funding re-
strictions may further affect services. Legislation and policies provide the
framework for care but, alas, do not always support adequate facilities for
care provision.
The legislative framework that surrounds the learning disabilities field is
complex. Legislation guides and influences the provision of care. Legislation
itself is influenced by social policy and society’s expectations of care. Various
White Papers and strategies have been published to further inform and guide
practice: in England, Valuing People: A New Strategy for Learning Disability for the
21st Century (Department of Health 2001a); in Scotland, ‘The Same as You?’ A
Review of Services for People with Learning Disabilities (Scottish Executive 1999);
in Wales, Fulfilling the Promises: Proposals for a Framework for Services for People
with Learning Disabilities (Learning Disability Advisory Group 2000). Legisla-
tion is also frequently linked to the development of policies and procedures.
Many statutory, voluntary and private organizations will have their own pol-
icies and procedures to be undertaken in various situations. There are many
policies and procedures that are used to inform day to day practice; these in-
clude: health and safety, lifting and handling (Mandelstam 2002) and ad-
ministering medication. One in particular that we will highlight as an
example is risk assessment.
Risk assessments may be undertaken when assessing the chance of harm
or risk occurring to a person being supported. The risk might relate to a vari-
ety of factors such as catching a bus or walking to work or concern the per-
son’s behaviour in public. The risk can be considered from two perspectives:
the risk to the person when carrying out a specific task and the risk of the or-
ganization not fulfilling its duty of care. Whatever the perspective, the per-
son undertaking the assessment holds power. There is the balance between
care and control to be considered. This reinforces the importance of working
in partnership with the person and, if required, in consultation with his or
her family, carers or advocate. The joint approach then goes part way to-
wards an equal balance of power. Risk assessment can be studied further
through the work of, for example, Kemshall and Pritchard (1996, 1997)
and Parsloe (1999).
We will now use two case studies to demonstrate the importance of
legislation in practice.
CASE STUDY ONE

Connor had always lived at home with his parents, Kathy and Sean. Connor
had worked for many years in a nearby local factory. He was fairly
independent but required some help with personal care and some household
tasks. Kathy and Sean were in their seventies and Sean was becoming quite
frail through increasing ill health. Kathy and Sean became increasingly
worried about their situation, their ability to cope, and how Connor would
be affected in the future. They discussed this with their GP who referred
them to social services.
They were visited at home by a social worker who assessed Connor’s
needs. Together they began to discuss Connor’s preferences in thinking
about the future. They also decided that Connor might benefit from certain
aids and adaptations being provided in the home, and an assessment by an
occupational therapist was requested. The aids and adaptations were pro-
vided a few weeks later. Kathy had been told she could be assessed in her
own right as a carer. Kathy asked the social worker to undertake the carer’s
assessment.
The social worker undertook Connor’s assessment of need as a duty under
Section 47 of the National Health Service and Community Care Act 1990.
Connor and his family were then enabled to access information about
resources and services available in both the statutory and independent
sectors. Later, the aids and adaptations for Connor were provided, guided by
powers of the Chronically Sick and Disabled Persons Act 1970.
Kathy provided a substantial amount of care on a regular basis to
Connor. Thus she was assessed as a carer in accordance with Section 1 of the
Carers and Disabled Children Act 2000. This Act enables local authorities,
for example, to offer carers support and provide services direct to carers.
These services could include helping the carer care for the person, direct
payments being made to the carer and vouchers provided for short-term
breaks. These benefits might be means tested. The social worker was able to
work with Kathy and Connor to identify the best way forward.
CASE STUDY TWO

Lara was a young woman with complex needs who lived at home with her
mother, Anna, who was her main carer. Anna had a physical disability, which
sometimes affected her mobility and her ability to meet Lara’s care needs.
Lara was additionally supported at home by a package of care seven days per
week.
Anna was taken ill unexpectedly and required admission to hospital. In
this emergency situation, Lara’s needs were assessed due to the changes in
her circumstances. In the short term, Lara was found accommodation in a
residential home known to her from previous respite care. The social worker
then worked with Lara and Anna to consider Lara’s future options.
Following Anna’s emergency admission to hospital and the change of
circumstances, Lara’s needs were reassessed under Section 47 of the National
Health Service and Community Care Act 1990. As a person with complex
needs requiring 24 hour care, Lara was assessed as meeting the criteria
defining a vulnerable adult under Section 29 of the National Assistance Act
1948. In this emergency situation, a short-term place in a residential home
was found under Section 21 of Part III of the National Assistance Act 1948.
This allowed the social worker to arrange residential accommodation as Lara
was in need of care. In the longer term, Part III accommodation was not
considered the most appropriate option. In line with the aims of the National
Health Service and Community Care Act 1990, Lara and Anna considered
the feasibility of Lara returning home with a more intensive care package.
They also looked at possible options for the future of independent supported
housing offering 24 hour care.
CONCLUSION
Legislation can be interpreted at a variety of levels and either directly or
indirectly informs and underpins the majority of care work. Some legislation
states that there is a duty to undertake specific pieces of work and/or a
power to decide if resources will be provided. Other legislation guides the
development of policies and procedures that can inform and instruct specific
ways of working in a variety of situations. There is also legislation that
identifies the duty to control people in specific or given situations; for
example, if they are a risk to themselves or others. An understanding of the
diversity of how legislation can inform can help when considering its use in
practice. A person can then be better informed of the legal framework and
structure that underpins and guides care provision.
In the UK, legislation relating to people with learning disabilities may
vary between England, Scotland, Wales and Northern Ireland. Whatever the
locality, legislation is not a static subject, it will go through a process of up-
date and change. Wherever a person works, legislation and policies will be in
operation that inform and guide much of the day to day care work. Some-
times their use can be clearly seen and understood, at other times the links
may seem more obscure. Nevertheless, by having an understanding of the
relevance of legislation to practice, its impact upon people with learning dis-
abilities can be better understood.
Key points
• Working within a legislative framework is a critical part of care
and support within the learning disabilities field.
• Legislation and policies relate to, inform and guide practice that
directly affects care provision.
• There are ‘duties’ which have to be undertaken and ‘powers’
that the provider can choose to undertake.
• Most legislation that is used today that specifically relates to
people with learning disabilities dates from 1948 onwards.
Some appears archaic and uses what is now considered
derogatory terminology.
• Many agencies have their own specific policies about a variety of
issues.
• Legislation can inform many areas including the need for an
assessment, the level of care to be provided, financial support,
adaptations and, in some situations, enforced control.
• Some legislation appears at face value to be supportive, but
unfortunately may not stand up as well as expected.
• Legislation continues to develop and change, and is influenced
by social policy.
• Legislation is developing separately in England, Scotland, Wales
and Northern Ireland and may vary in some aspects.
11
The Way Forward
INTRODUCTION
As discussed in previous chapters, there are various pieces of legislation and
policies relating to people with learning disabilities, including: in England,
Valuing People (Department of Health 2001a); in Scotland, ‘The Same as You?’
A Review of Services for People with Learning Disabilities (Scottish Executive
1999); in Wales, Fulfilling the Promises: Proposals for a Framework for Services for
People with Learning Disabilities (Learning Disability Advisory Group 2000).
In this chapter we will use one example of an English governmental policy to
show how legislative development is playing a part in informing the way
forward. For the first time in 30 years, in England, a White Paper has been
produced that focuses on learning disabilities. The implications of Valuing
People: A New Strategy for Learning Disability for the 21st Century will be looked
at and its potential impact on future practice considered.
We will go on to explore research, its importance, and how it can be used
effectively as a method of developing service through joint working. Links
will be made with previous chapters and some of the theoretical perspectives
that have been explored throughout the book. The importance and value of
theory being used to inform practice will be reinforced throughout.
VALUING PEOPLE: AN ENGLISH PERSPECTIVE

Throughout the book, we have talked about the importance of seeing each
person with learning disabilities as individual. A person’s individuality and
fundamental right to receive support to meet needs are core issues when
considering valuing a person. Although care provision and acceptance of
people with learning disabilities within society have moved forward con-
siderably from the institutional care discussed in Chapters 1 and 4, there is
still a long way to go.
243
People with learning disabilities are amongst the most vulnerable and
socially excluded in our society. Very few have jobs, live in their own
homes or have choice over who cares for them. This needs to change:
people with learning disabilities must no longer be marginalized or ex-
cluded. (Department of Health 2001a, p.2)
The chapter on advocacy, empowerment, participation and choice (Chapter
6) explored some of the ways that advocacy can help a person become
empowered within society. The need for people to be able to take control of
their life choices is fundamental. The importance for people with learning
disabilities to be able to achieve this has been acknowledged and the
Government has stated a commitment to addressing inequalities:
Valuing People sets out how the Government will provide new opportu-
nities for children and adults with learning disabilities and their fami-
lies to live full and independent lives as part of their local communities.
(Department of Health 2001a, p.2)
Valuing People identifies 11 core areas seen as major problems that need
addressing to achieve inclusion within society. With an awareness of these
problems, consideration can be given to the required development:
• Poorly co-ordinated services for families with disabled children
especially for those with severely disabled children.
• Poor planning for young disabled people at the point of
transition into adulthood.
• Insufficient support for carers, particularly for those caring for
people with complex needs.
• People with learning disabilities often have little choice or
control over many aspects of their lives.
• Substantial health care needs of people with learning disabilities
are often unmet.
• Housing choice is limited.
• Day services are often not tailored to the needs and abilities of
the individual.
• Limited opportunities for employment.
• The needs of people from minority ethnic communities are
often overlooked.
THE WAY FORWARD 245
• Inconsistency in expenditure and service delivery.

• Few examples of real partnership between health and social care
or involving people with learning disabilities and carers.
(Department of Health 2001a, pp.2–3, bold as in original)
The development of facilities to meet needs is not the only issue to be

considered. The whole process of care management is suggested as needing
to change. The involvement of the person whose life it is should be central in
identifying, considering, planning and arranging the required support.
Valuing People identifies the key principles as ‘Rights, Independence, Choice,
and Inclusion’. The proposed method of achieving the key principles is
through person centred casework and person centred planning, which is
covered in depth in Chapter 8.
The Government has suggested that changes will be partly supported
through financial investment in the development of advocacy services in the
voluntary sector. The proposed investment is £1.3 million pounds a year
over a three year period (Department of Health 2001a). The advocacy devel-
opment could include many of the types of support groups identified in
Chapter 6. Additionally, the claiming of benefits, in particular direct pay-
ments, would enable people to take more control over the purchase of care
and support and how it is provided. This would move the purchasing away
from the traditional care management associated with the National Health
Service and Community Care Act 1990, as discussed in the sections on so-
cial policy and legislation in Chapter 10. A person centred approach is seen
as an essential way of enabling people’s full involvement in their own lives.
Valuing People is about valuing individuals, each unique, and each differ-
ently able. A lifelong approach is proposed that should begin by integrating
services for children and their families and should go on to provide opportu-
nities for people to develop into adult life. Improvements should be made in
education, health, social services, employment, housing, support and care
work for people with learning disabilities and their families and carers. Here
we have used just one piece of legislation as an example of the changing
structure of care. Different pieces of legislation are being used in other parts
of the country and outside of the UK. Whatever legislation is being used to
inform practice, it will provide guidance and a structure of how services
should be changing to meet the needs of individuals.
However, the question must be raised, how is it known if these new ideas
and ways of working are actually beneficial and making a difference? How
are they checked and by whom? Research can be undertaken as a method of
exploring new ideas and identifying the impact upon practice. Research is a
powerful tool and not one that should be solely owned by the academics
within society. We would now like to explore some different types of re-
search and look at how it can be carried out as a joint process in planning
and developing the way forward.
RESEARCH
Research can be used to explore a variety of issues such as the planning and
development of services. Research is one way of exploring what is required
and how to meet identified needs. We will initially explore research as a
general process and go on to show how it can be needs led and inclusive in its
approach. A fuller explanation of research can be found in specific research
based texts: for example, Alston and Bowles (1998), Bell (1992), Blaxter et
al. (1998), Everitt et al. (1992) and Humphries (2000). In this section, we
aim to consider the differences between some research methods and suggest
some approaches that can be used to undertake joint research in the learning
disabilities field.
Research can be undertaken from a variety of perspectives, including
social, medical or joint research, each important in its own right. There is a
vast amount of medically based research undertaken that explores, for exam-
ple, syndromes and their implications, why they may occur and the impact
they can have on a person’s development. However, we intend to look at re-
search from a social perspective. One explanation of social research is ‘the
systematic observation and/or collection of information to find or impose a
pattern, to make a decision or take some action’ (Alston and Bowles
1998, p.6).
Research can take many different forms dependent on the beliefs, values
and process/methods used by the researcher. The methods used can, of
course, have some impact on the outcome of the research. Researchers may
have their own agendas for carrying out a piece of work, or undertake it on
behalf of others. Funding for research may be provided by organizations em-
ploying the researcher. Such aspects require careful consideration, as possi-
ble bias could affect the validity of the research and its outcomes. To enable
the research process to be explored and understood further, we will briefly
highlight some types of research often used in the social field; for example,
quantitative, qualitative, emancipatory and feminist.
THE WAY FORWARD 247
Quantitative research
Mark (1996) describes quantitative research as the oldest form of social
research. It dates back to the natural science ideals held in the 18th and 19th
centuries, known as ‘positivism’. The idea operates on the assumption that
there is an objective ‘reality’ that can be measured accurately within natural
laws which can be ‘discovered’ by rigorous and objective research. Quanti-
tative research applies a rigorous scientific approach and works to hypo-
theses being proved or disproved. The quantitative approach sees the
researcher’s influence as minimal or non-existent, with the researcher being
objective and detached. Techniques that can measure quantities are pre-
dominantly used, which enables the collection and analysis of data, such as
surveys and questionnaires. The approach is based upon using data in the
form of numbers and undertaking work that is replicable. Quantitative
research can be useful in some circumstances and can deal with large
numbers. However, it does not undertake research in a way that enables a
better understanding of the interpretation of the views and meanings of
people. Qualitative research provides a different approach.
Qualitative research
In contrast to a quantitative approach, qualitative research does not rely on
hypotheses and the development and testing of theories. Qualitative
research develops from observations and experiences that are going on in the
world and theories and ideas are then developed from the patterns observed:
‘…qualitative researchers are more interested in understanding how others
experience life, in interpreting meaning and social phenomena, and in
exploring new concepts and developing new theories’ (Alston and Bowles
1998, p.9). Qualitative researchers acknowledge that their presence will
have some impact on the research being carried out and that people’s
experiences and how they see life are key. Participant observation, in-depth
interviews, observation and group work are some of the techniques used in
qualitative research. There are many different theoretical stances that under-
pin qualitative research and these can be studied in more depth in many
social research based books: for example, Alston and Bowles (1998) and
Berg (1995).
Many people have suggested that quantitative and qualitative research
can work together and are complementary to each other: for example,
Babbie (1992), de Vaus (1995), Orcutt (1994) and Reid (1994), . For in-
stance, whilst undertaking a piece of research, a researcher may wish to find
out why a group of people are behaving in a specific way and the issues
important to the group. A qualitative approach may be used and observa-

tions and discussions in focus groups may be undertaken. However, the re-
searcher might also want to know the composition of males and females
within the group and their ages. This is more of a quantitative approach,
finding out facts and figures. It can be seen that both could prove useful and,
to an extent, work hand in hand. The third form of research that we intend
to explore is emancipatory research. Humphries and Truman (1994) refer to
it as anti-discriminatory research.
Emancipatory research
During the 20th century, the power and use of research started to be
questioned. Research may have been undertaken for the ‘good’ of a few but
not for universal good. It had been used for political ends, the powerful
researching the powerless, mainly using a top down approach. Some people
being researched started to challenge the validity of the research being
undertaken. Some wished to be involved and, more importantly, have a part
in the decision making process about what was to be researched (Alston and
Bowles 1998). As the human rights, consumer and liberation movements
started to develop, some research was challenged. People from minority
groups that in the past had been the ‘objects’ of research demanded the right
of inclusion and to benefit from research undertaken. The time had come for
researchers to be accountable not only to the people that funded the research
projects, but also to the people that were being researched. Emancipatory
research has played a part in addressing this imbalance.
Emancipatory researchers do not focus purely on studying the world, as
is often associated with quantitative and qualitative research; it focuses on
trying to change it (Masters 1995).
The power of research as a tool for social change is fundamental to our
understanding of the place of research… Just as the goals of social work
involve not just understanding the world, but actively intervening to
change things in some way, so, too, does social…research involve ac-
tion, decisions and change. (Alston and Bowles 1998, p.6)
The argument that research has remained in the hands of the powerful and
neglected the rights of the powerless for too long is key to the importance of
the approach within many fields and, from our perspective, in the field of
people with learning disabilities. Alston and Bowles sum up the role of the
emancipatory researcher:
THE WAY FORWARD 249
The job of the emancipatory researcher is to uncover the myths, beliefs

and social constructions that contribute to the continuation of the status
quo, in order to reveal how power relations are really operating to con-
trol the powerless. In the process, emancipatory researchers aim to lib-
erate, enlighten or empower those people who are subjugated…
Emancipatory researchers take for granted that research is never value
free. What is important is whose side you are on. Emancipatory re-
searchers deliberately ‘take sides’ with the people who are oppressed or
struggling against their oppression. Thus, they are overtly political. It
has been said that a mark of good research in this tradition is that it
makes powerful people angry. (Alston and Bowles 1998, p.14)
The power of the approach in researching the difference between dominant
and oppressed groups in society can be seen. Emancipatory research can be
undertaken in a variety of ways, its main goal being that people that are
oppressed or marginalized within society take a level of control over the
research and benefit from it having taken place. The fourth approach to
research that we will now explore is from a feminist perspective. Feminist
research is an important approach within the emancipatory framework.
Feminist research
Feminist research is inclusive and participative; the researcher engages with
the participants on an equal basis. It is more about the approach than the
methodology and is based on egalitarian tenets. The feminist researcher will
get together with participants to explore and address research questions, take
data and analyse it. The researcher shares the emerging knowledge, checks it
out and constantly listens to feedback. It is a shared process and credit is
given to the participants. Feminist researchers uphold a code of ethics and
work with informed consent as a process, not an event.
Reinharz provides ten themes of feminist research methodology:
• Feminism is a perspective, not a research method.
• Feminists use a multiplicity of research methods.
• Feminist research involves an ongoing criticism of non-feminist
scholarship.
• Feminist research is guided by feminist theory.
• Feminist research may be transdisciplinary.
• Feminist research aims to create social change.
• Feminist research strives to represent human diversity.
• Feminist research frequently includes the researcher as a person.

• Feminist research frequently attempts to develop special relations
with the people studied (in interactive research).
• Feminist research frequently defines a special relation with the
reader.
(Reinharz 1992 in Alston and Bowles 1998, pp.15–16)
In the last two decades, feminist research has impacted upon general social
research and, in particular, the role of women (Sarantakos 1993). Feminist
research has exposed the male dominant sexism found within society and
also within social science and research (Oakley 1985). The feminist
approach has shown how traditional research methods have ignored the
female viewpoint in many studies. This can be extended further to show
how many viewpoints of marginalized or disadvantaged groups within
society have also been ignored, silenced and controlled by those with the
power to undertake the research. The feminist approach has been criticized
by some who suggest that feminist research is still dominated by a middle
class perspective (Gunew and Yeatman 1993). Nevertheless, the concept of
groups marginalized by, and within, society being involved in and under-
taking research is of great importance. We will now consider this in relation
to people with learning disabilities.
RESEARCH WITH PEOPLE WITH LEARNING DISABILITIES

An emancipatory approach to research, underpinned by a feminist per-
spective that highlights the difficulties and disadvantages faced by margin-
alized groups within society, provides an example of how research could be
approached. With a structured method of working identified, then both
quantitative and qualitative methods may be used in the research process.
Again, we come back to the issue that research should be undertaken with
people with learning disabilities and not on them. How can this be achieved
and what are the points that would need careful consideration?
Research that is being undertaken with people about their lives ideally
needs to be participatory. This type of methodology promotes researching
with people rather than carrying out research on them (for example, Moore,
Beazley and Maelzer 1998, Oliver 1990, 1992, 1993, 1996). It acknowl-
edges that the people whose lives are to be researched are the experts; they
are the best people to know how they are feeling and what their views are. If
the proposed research is of interest to the person or group of people, then
THE WAY FORWARD 251
there is a far better chance of active involvement. The starting point is the
joint identification of the problem or issue to be explored or investigated.
Research may be major, or focus on smaller issues of importance to partici-
pants. Some examples of research questions are:
• Is the day service providing enough activities?
• Does the residential unit have enough staff to enable people to get
out?
• Do local community facilities meet the needs of people with
multiple disabilities?
• Are there enough health drop-in services in the local community?
• Are local health care facilities easy to use?
The above questions were based on issues raised by people with learning
disabilities. The methods subsequently used to inform and guide the
research process were based on a participatory approach.
A PARTICIPATORY ACTION APPROACH TO RESEARCH

In Chapter 6, we discussed advocacy, empowerment, participation and
choice. These ideas also apply when considering a participatory approach to
research.
The importance of a person being able to make decisions about his or
her life is a fundamental concept. Services are provided to support and en-
able people to achieve integration and this needs to be considered from a re-
search perspective. At times, change and inclusion may make life more
‘complicated’ but this should not be a reason to deter someone from involve-
ment. Simons (2000) argues that the more people are involved in decisions
about services the better the services will become:
Services which are geared to the wishes of those who use them are
likely to be more aware of, and focused on, the reality of people’s lives.
They will be more responsive, flexible and efficient, providing help
when people want and need it, and not when they do not. (Simons
2000, p.2)
Not only is participation important for service development, but it can also
play a key part in personal development:
By encouraging people with learning difficulties to become more con-

fident and assertive, to take more responsibility for themselves and oth-
ers, to make choices and to have more control over their lives, to be less
dependent on others, and to be more informed, an effective participa-
tion strategy has the potential to make a significant impact on the way
people with learning difficulties see themselves. (Simons 2000, p.3)
We hope to have emphasized the importance of research and participation,
and would now like to briefly consider the drawing together of participation
and action based research. Social action and the involvement of people are
key to the approach. Action research focuses on changing or improving a
social situation and involving the people that are most affected. Two
definitions that explain participatory action research further are: ‘Parti-
cipatory action research is an approach to improving social practice by
changing it and learning from the consequences of change. Participatory
action research is contingent on authentic participation’ (McTaggart 1989
quoted in Wadsworth 1991, p.65); and:
Action research is defined as a process of collaborative inquiry which
aims to enable participants in a system to develop the skills and knowl-
edge to effect change in their own environment. (Coffey 1995, p.1)
Both explanations reinforce the importance of this collaborative and parti-
cipatory approach, and this can be seen as both useful and appropriate when
applied to work with people with learning disabilities in trying to achieve
social change. Action research has often been used within a feminist research
perspective looking to achieve social change. Action research should be
viewed as an ongoing spiral process:
• initially identifying the problem or issue with those affected by it
• the issue is reflected upon, a research design is created, possibly
using both quantitative and qualitative methods
• the research is undertaken within the field
• the findings are analysed and conclusions made
• feedback is given
• planning is carried out to implement the findings and to see how
they have changed the initial situation
• the cycle can be repeated as many times as required. (Adapted from
Wadsworth 1991)
THE WAY FORWARD 253
All research requires time, careful planning and must be underpinned by a

sound ethical framework. We will now go on to explore ethical issues in
more depth.
ETHICAL ISSUES
An initial point of consideration must focus on the right of people to be able
to make an informed choice about being involved in any research project.
Additionally, the time required to fully involve people should be taken into
consideration to avoid tokenism. Informed consent is of paramount im-
portance; a researcher must be certain that someone who agrees to be
involved in the research process is able to make an informed choice. A
person’s ability to be able to understand what the research project is about
and how their answers would be used must be ascertained. Stalker (1998)
highlighted the time implications and, at times, the need to seek and gain
permission from a range of people before actually talking with people with
learning disabilities. This process might include ethics committees, parents,
carers and volunteer advocates. However, some aspects of talking to others
could be seen as going against the process of participatory research, but
necessary due to legislation.
Often an ethics committee is used as a way of judging if the correct stan-
dards and safety structure have been set up in a proposed research project.
The ethical criteria would include: informed consent, confidentiality, not do-
ing harm to anybody, doing good and positively contributing, carrying out
research that is just and something that will positively contribute to knowl-
edge in the area of study (adapted from the work of Beauchamp 1982).
These points need to be considered and a strategic plan set up when consid-
ering a research project.
Making sure that people with learning disabilities have as much oppor-
tunity to make an informed choice as possible is of vital importance, and a
systems theory approach (see Chapter 9) may be used to support the process.
Information about the project may need to be presented in different formats:
written, picture/word and widget (see Chapter 5 on communication meth-
ods). Questionnaires may need to be available in different formats, including
video, to enable signing to be available. If direct interviews are taking place
then a signing interpreter may be required. Many other ethical issues could
be raised and discussed but the available space within this chapter restricts
this. What we have tried to do is draw the reader’s attention to the implica-
tions and importance of ethical issues and the way working is approached.
The need for the researcher to adopt a flexible approach when enabling and
supporting people with learning disabilities to participate in research studies

is highlighted by Stalker (1998), Moore et al. (1998) and Booth (1995;
Booth and Booth 1996). At times, this may mean having to include the par-
ticipants in a way that may not be absolutely ideal, but does make certain
that they are not completely excluded from the research study. Sometimes it
may be difficult to carry out interviews that ask questions around abstract
ideas. New ways of approaching the task may need to be considered so that
concrete examples can be used to gain insight into people’s views and un-
derstanding. Silverman (1993) reinforced the importance of being flexible
and being able to change research design if information indicated this was
required. This again indicates that research needs to be seen as an ongoing
process and a flexible approach is the key to its success.
FINDINGS
When the research has been completed and the findings are being analysed,
an inclusive approach is again important. It enables participation and
inclusion during the analysis process. The findings from research can be
disseminated in a variety of different formats and again we refer to Chapter 5
and communication methods. By being flexible in how the findings are
produced (written word, widget, picture and word, audio tape, video tape), it
tries to make certain that the research findings are open and accessible to as
many people as possible. Choosing to Change (Lawton 2002) is a positive
example of a research study being undertaken with people with differing
levels of learning disabilities. It shows how issues of informed consent,
ethical approval and participation were managed. Lawton presented the
findings in a variety of formats to enable its accessibility. Lawton’s piece of
participatory action research included findings published in a full report,
report summary, short report using large type and pictures, and audio/video
options if required. The preparation of the findings obviously took longer
than just completing a full report, but with the help and guidance of the
people with learning disabilities involved in the research process, Lawton
made certain that the findings were presented in ways that those involved
wanted. Other studies undertaken can provide further insight into the
concept of research with people with learning disabilities: for example,
Moore et al. (1998) and Stalker (1998).
The approaches outlined above can be used in many situations. The
identification of what will be studied and the research itself can be under-
taken in a participatory way. This promotes empowerment and inclusion
(Chapter 6) and is also person centred (Chapter 8). Many of the other
THE WAY FORWARD 255
theories in this book – systems theory, task centred theory, role theory – can
be seen as important and informative when considering research.
The 11 core issues identified in Valuing People and discussed earlier in
this chapter could all be explored further through participatory action re-
search. An evidence based approach could be used to see if ideas put into
practice have been successful in meeting people’s needs. People’s views are
gained through research and the findings analysed to provide evidence of
the outcomes.
An example of larger scale planned research can be seen in the proposals
given by the Department of Health, who have agreed funding for a research
initiative of between six and ten studies, which will cost approximately £2
million. The overall study will be called People with Learning Disabilities: Ser-
vices, Inclusion and Partnership. It is envisaged the study will commence in
2001/02 and will be carried out over a four year period. The research will
study areas such as:
• service delivery in health and social care and its effectiveness to
identify elements of good practice, implementation and
sustainability
• social inclusion, including access to good health care, and the
factors which create disability barriers in people’s lives
• organisation development to show how staff performance in
learning disability services can be supported to achieve better
services.
(Department of Health 2001a, p.114)
Research within the learning disabilities field will also continue through
NHS research funding. At present over 130 separate research projects are
being undertaken and are registered with the National Research Register
(Department of Health 2001a). It is to be hoped that the research findings
will provide more information and guidance on aspects such as quality of
care, quality of support and joint working. The findings may then be used to
provide a framework to underpin quality support and practice. Many other
small-scale research projects are also being undertaken through, for ex-
ample, The King’s Fund, Joseph Rowntree Foundation and BILD.
Research is an ongoing process and can be used as a method for personal
and practice development. Thompson suggests that ‘research minded’ prac-
tice provides ‘a positive basis for integrating theory, research and practice,
thereby contributing to an informed practice and a theory base which is not
divorced from the demands of practice’ (Thompson 1996, p.53). Individual
workers also play a part in research development. Everitt et al. (1992) pro-
vide some suggestions of how individuals can be involved in an ongoing re-
search minded approach. Two of their points, about bringing ‘to the fore
theories that help make sense of social need’ and using theory to ‘assist in de-
cision making’ and inform practice, sum up the purpose of this chapter and
our complete book. The drawing together of knowledge that relates to the
learning disabilities field, the understanding of how theory can inform
working approaches, and the use of research in guiding and informing fu-
ture development are of prime importance. This drawing together will, we
hope, enable care and support workers to continue developing their work-
ing skills and move toward achieving social change.
CONCLUSION
The way forward involves change and evaluation as an ongoing process.
Government proposals will continue to be made in response to consultation
and by listening to what the people who use the various services and support
networks want for themselves. Changing attitudes within society and public
demand or pressure will also influence Government thinking.
The developmental nature of care and support work and external influ-
ences upon it provide the opportunity for services and care facilities to prog-
ress and move on. It is to be hoped that the days of institutional working are
drawing to an end. An awareness of the difficulties of leaving institutional
practices fully behind was identified by Goffman (1961) over 40 years ago.
Some of Goffman’s observations of institutional practice are still relevant to-
day. With considered and theoretically informed practice, the remains of in-
stitutional working will be challenged and, it is hoped, eradicated during the
early part of this century.
As mentioned earlier, the underpinning principles set out in legislation –
for example, in England Valuing People (Department of Health 2001a); in
Scotland ‘The Same as You?’ A Review of Services for People with Learning Disabil-
ities (Scottish Executive 1999); in Wales Fulfilling the Promises: Proposals for a
Framework for Services for People with Learning Disabilities (Learning Disability
Advisory Group 2000) – will continue to guide the way forward. The devel-
opment of person centred planning, joint working, advocacy and evidence
based practice provides the potential foundation for further positive changes
in service structure. We would suggest that this can be supported through an
awareness of individual working practice and the ability to use theoretically
underpinned approaches. Drawn together, these ideas, theories and issues
are key when considering the way forward.
THE WAY FORWARD 257
Key points
• The structure of care is continually changing.
• Legislation and governmental guidance for working and
supporting people with learning disabilities reinforces the
importance of each person’s uniqueness, individuality and
differing abilities.
• New legislation has been introduced throughout the UK.
• In England the process of care management associated with
community care is evolving and a person centred approach is
being further developed.
• Research is a crucial part of service development.
• There are various approaches that researchers can use; an
emancipatory approach reinforces the importance of inclusion in
the research process.
• Research can be participatory and people with learning
disabilities can be fully involved throughout.
• Research findings can help to shape and develop the services of
tomorrow.
• There is a fundamental need to work within an
anti-discriminatory and anti-oppressive framework to ensure
good practice.
• Ongoing training to aid personal and professional development
is always required.
• People with learning disabilities are people first and foremost and
must be respected and treated accordingly.
Conclusion
When we first considered writing a book that would explore the links
between theory and practice in the learning disabilities field, we did not fully
realize what we were letting ourselves in for! On reflection, we set ourselves a
difficult task in writing about the number of theories and approaches
subsequently covered. Without the ongoing support of Jessica Kingsley
Publishers and our ‘expert readers’ we may never have finished the task.
However, the work carried out did reinforce to us how many differing
perspectives there are, and how theories and approaches can genuinely
provide insight, guidance and inform day to day practice.
We have endeavoured to explore some of the changes that have taken
place within learning disabilities care and support services during the last
century. New ideas have come into practice, legislative changes have taken
place and public perception and understanding have altered. Different ways
of working and providing care and support have been used, some successful
and others fashionable for a limited time. This process of progression and
change has, however, provided a framework on which to further build and
develop an approach, mindful of the potential dilemmas and barriers to ef-
fective practice. Care and support for people with learning disabilities
should continue to move forward, striving to meet individual needs and
challenging the barriers so often encountered in this field. Achieving this
will not necessarily be straightforward or easy and should involve ongoing
opportunities for people to make informed choices and decisions about is-
sues affecting their lives. People with learning disabilities should also have
the opportunity to be involved in the research and development of services.
People with disabilities are first and foremost individuals and should
have the same opportunities to be fully involved within their local communi-
ties and society as the next person. The use of many of the theories and ap-
proaches explored in this book can help to enhance and develop working
practice and enable participation and inclusion. Theory can provide a struc-
tured approach to working that promotes confidence and informs under-
standing for care and support work.
259
Social workers [and care workers of any description], to be truly effec-

tive, need to be constantly asking why. It is in this quest for understand-
ing about, for example, why situations arise, why people react in certain
ways and why particular interventions might be utilised, that theory
informs practice. (Coulshed and Orme 1998, p.9)
Thompson reinforces the need for informed practice. It is necessary to:
• do justice to the complexity of the situations social and health care
workers so frequently encounter
• avoid assumptions, prejudices and stereotypes that can lead to
discrimination and oppression
• lay the foundations for a developmental approach, one which permits
and facilitates continuous personal and professional development
• ensure a high level of motivation, challenge and commitment.
An understanding of theory does not provide a remedy or easy answers or

faultless practice. However, it does help identify structured and tested ways
of providing care and support for people with learning disabilities and can
be used in a multitude of situations.
Thompson sums up many of our thoughts and feelings that have devel-
oped over the years working within the learning disabilities field, further
reinforced during the writing of this book:
Working in the helping professions is neither simple nor straightfor-
ward. The demands and challenges of such work are often of major pro-
portions and can test us to the limits. Given this context, it is important
that staff are as well equipped as possible to meet these challenges.
Of course, no theory base can guarantee success in coping with the
demands of practice. However,…a systematic and imaginative use of
theory can help to prepare for the rigours of practice and help us guard
against the pitfalls that stand in the way of effective and appropriate in-
terventions. (Thompson 1996, p.125)
We sincerely hope that this book may play a part in increasing awareness and
providing a range of ideas of how theory informing practice can enable
empowerment, participation and inclusion to become a part of everyday life
for people with learning disabilities. We believe a commitment to being
open to learning and to using informed, reflective practice is a critically
important part of the way forward and integral to progress.
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Wolfensberger, W. (1977) A Multicomponent Advocacy and Protection Scheme. Toronto:
Canadian Association for the Mentally Retarded.
Wolfensberger, W. (1983) ‘Social Role Valorization: A Proposed New Term for the
Principle of Normalization.’ Mental Retardation 21, 6, 234–239.
Wolfensberger, W. and Thomas, S. (1983) Passing Program Analysis of Services Systems’
Implementation of Normalization Goals. Toronto: Canadian National Institute of Mental
Retardation.
Worden, W.J. (1991) Grief Counselling and Grief Therapy: A Handbook for the Mental Health
Practitioner. London: Tavistock/Routledge.
World Health Organisation (1991) Internal Classification of Disease and Related Health
Problems (ICD)/Diagnostic Criteria for Research (DCR), 10th edition. Geneva: World
Health Organisation.
World Health Organisation (2000) International Classification of Functioning and Disability.
Geneva: World Health Organisation.
Wright-Mills, C. (1959) The Sociological Imagination. New York: OUP.
regarding sexual freedoms see also advocacy;
Subject Index 119, 122 anti-discriminatory
in risk assessment 239 practice; empowerment;
social rights 108 social inclusion
in support work 184 anxiety, reaction to grief 133
AAMR, classification of
types 103–6 applied behaviour analysis
support 19–20
working practice 108–9 167
abnormality, view of disability
see also anti-discriminatory art therapy 91–2
15
practice; assessment
abusive sexual relationships
anti-oppressive case studies 30, 30–1,
121–2, 124–5
practice; choice; 240–1
accessibility 16
empowerment; for statutory services 237
of information 97
participation; social to identify needs 18
action research 252
inclusion for communication
Acts of Parliament 37
advocacy services, investment 89–90
see also individual Acts;
and developments 245 Association of Parents of
legislation
advocacy support 112, 184 Backward Children 13
‘adaptive and reciprocal
ageism see also Mencap
relationships’ 183
definition 47 ATCs 68–9
adjustment after loss
multiple discrimination 120 attitudes
for people with learning
Albert, case study 113–14 to same sex relationships
disabilities 132
American Association of 124
stage in bereavement 131
Mental Retardation see also beliefs; cultural
Adult Training Centres 68–9
(AAMR) 19–20 values; religious beliefs;
Adults with Incapacity
anger, reaction to grief 133 stereotyping;
(Scotland) Act 2000
anti-discriminatory practice stigmatization; values
53–4
definition 46
advisory support, purpose 109
in person centred planning ‘backward’ 13
advocacy 79, 99–115
158 barriers
barriers to success 110–11
promotion through in communication 81, 83,
case studies 77–8, 112–13,
challenge 56, 57 93–4
185–6, 186–8,
research 248 to achievement of social
229–31
role of care workers 61–2 inclusion 244–5
rights to marriage
in social care 45–62 to advocacy 110–11
202–3
see also advocacy; to people with disabilities
sexual relationships
anti-oppressive 73
125–6
practice; empowerment; BASW, code of ethics 145–6
and choice 71, 74
social inclusion behaviour, definition 164
code of practice 101
anti-oppressive practice behaviour modification 164
in communication 98
definition 46 behavioural approach 164–75
definitions 99, 101
ethical problems 146 cognitive therapy 169
development 100–1
in person centred planning comparison with person
independence of advocate
158 centred planning 171
108
promotion through key points 175
key points 115
challenge 56 operant conditioning 166
in person centred planning
promotion through respondent learning 165–6
158
challenging of social learning 168
principles 107
oppression 57 use of techniques 169–71
in professional roles 100
in social care 45–62 behavioural assessment 164
provision 230–1
by carers 110 behaviourism 165
273
beliefs 55, 58 British Association of Social use of theory to inform

influence in social learning Workers (BASW), code practice 260
168 of ethics 145–6 Carers and Disabled Children
origin 142 British Institute of Learning Act 2000 238
effect on response of support Disabilities 13 case law 233
worker 123 British Institute of Mental case studies
case study 127–8 Subnormality 13 advocacy 77–8, 112–13,
see also attitudes; cultural British Sign Language (BSL), 125–6, 185–6, 186–8,
values; religious beliefs; use by people with 202–3, 229–31
values learning disabilities 85 assessment 30, 30–1,
benefit reform 227 Brock Report 118 240–1
benefits BSL see British Sign Language behavioural approach
case studies 230–1 171–3
for control of support CA (chronological age) 21 beliefs, of support worker
purchase 245 Campaign for Voluntary 123
benefits system, introduction Sterilization 118 benefits 230–1
225–6 care managers, role 237 bereavement 136–8,
bereavement care provision 238–40 210–12
breaking the news 133 changing structure 245 choice 202–3
case studies 136–8, funding 228, 238–9 citizen advocacy 113–14
210–12 future trends 256 communication 41–2,
consideration of religious influence 219 76–7, 95–7
beliefs 206–7 key points 257 community advocacy groups
definition 129 legislation 236–8, 239–40 112–13
key points 139 need to conform to norms community living 77–8,
process 130–2 73 171, 178–9, 185–6,
support 134 purchasers and providers in 229–30
see also grief, loss open market 227 congruence 162–3
‘Best Value’, in provision of risk assessment 239 coping strategies 210–11
welfare 227 support by family 228 counselling 210–12
Better Services for the Mentally see also community care crisis intervention 178–9,
Handicapped 69 care workers 209–12
Beveridge Report 1942 12, anti-discriminatory role direct payments 229–30,
225 61–2 240
rejected proposals 226 congruence 153–4 discrimination 41, 59–61,
BILD 13 effect of value base on 221–2
Bills (process of legislation) 37 support 145 in bereavement 136–7
‘blaming the victim’ attitude empathy 155 duties of statutory
49–50 limited by organizational authorities 240
blind people, use of sign criteria 144 employment opportunities
language 86 respect for persons 155–6 194–5
Bliss (sign system) 86–7 role conflict in providing empowerment 77–8
body language 87–8 advocacy 110 equilibrium, loss 209–10
borderline learning difficulties support for bereavement and ethical problems 147–9
21 loss 130 financial problems 209–10
Braille (sign language) 86 supporting sexual hidden agendas 195–6
breaking the news, after a relationships 122, independent living 185–6,
death 133 123–4 209–10, 229–30
unconditional positive isolation 209–10
regard 154 labelling 29–31
SUBJECT INDEX 275
legislation 240–1 unconditional positive chromosomal deviations, cause

listening 210–12 regard 162–3 of learning disabilities
loss 136–8 causes, of learning disabilities 24
medical model of disability 23–4 chronic grief 135
29–31 Central Council for the Chronically Sick and Disabled
need for labels 30 Education and Training Persons Act 1970 14,
negotiated roles 202–3 of Social Workers 28, 235
non-verbal communication (CCETSW) chronological age 21
96–7 social care criteria 33 recognition of 71
O’Brien’s five value base 58–9, 143–4 ‘circle of care’, in person
accomplishments challenging behaviour, use of centred planning 156,
76–7 behavioural techniques 157
occupational therapy 240 170 citizen advocacy 103–4
open systems 186–8 challenging discrimination and case study 113–14
operant conditioning oppression 56 class advocacy 105
172–3 Charlie, case study 178–9 classical conditioning 165–6
oppression 41, 59–61 Charmaine, case study 137–8 classification of learning
participation, in bereavement children, terminology 13 disability 18–22
136–7 Children Act 1989 53, 234 AAMR 19–20
person centred approach Children (Scotland) Act 1995 international ICIDH-2
161–3 53, 234 20–1
power of parents 201–2 choice 71, 109 classism, definition 47
psychological theory 40–2 case studies 202–3 clear language/signing, when
residential care 41, 59–61, definition 69–70 breaking bad news 133
76–7, 148–9, 172–3, and empowerment 114 closed systems 181
186–7, 201–3 informed choice on research ‘Coconut Grove Fire in
respect for persons 162–3 participation 253 Boston’, basis for crisis
rights to marriage 202–3 legislation for 237 intervention 204
role conflict 201–3 for people with learning codes of ethics, BASW 145–6
role theory 178–9, 201–3 disabilities, right of codes of practice
same sex relationships 73–4 advocacy 101
127–8 in person centred planning mental health 157
sexual relationships 125–6, 158 person centred planning
201–3 promoting, role of support 157
sexuality 195–6 worker 143 cognitive therapy 169
sign languages 95–6, provision of services 251 comparison with person
172–3 and task centred approach centred planning 171
social exclusion 186–8 191–2 Colette, case study 186
social inclusion 195–6 through self advocacy 106 collective advocacy 105
social policy 229–31 see also advocacy; ‘colour blind’ approach to
sociological theory 40–1 anti-discriminatory equality 50
sociology in practice 221–3 practice; Command Papers 37
speech therapy 95–6 anti-oppressive Commission for Racial
structuration 222–3 practice; empowerment; Equality 52
systems theory 178–9, participation; social commissioning, of support
185–8 inclusion services 238
task centred approach Choosing to Change (research communication 81–98
178–9, 194–6, study) 254 adaption to individual needs
210–12 Christine, case study 209 86–7, 88
in advocacy 108
barriers 81, 83, 93–4 community presence 69 case studies 178–9,

case studies 41–2, 76–7, competence, in skills 70 209–12
95–7 complementary roles 199 definition 204
definition 82 conditions of worth 151–2 fundamentals 205–6
development in infancy 84 confidentiality, in use of key points 213
electronic aids 82 interpreters 89 limiting factors 207
for learning disabled 87, conflict origins 204–5
88 between self expression and tasks 208
and empowerment 111 conditions of worth cultural differences, and
of information about 152 discrimination 48
research projects 253 see also role conflict cultural values
key points 98 conflict theory 217 attitudes to minority groups
listening skills 92–3, 94, conforming, to norms for care 55
134, 183, 192 provision 73 consideration in crisis
methods 81 congenital factors, cause of management 206
systems theory 94 learning disabilities 24 influence on personal
task centred approach 93 congruence 125, 153–4 development 55
see also communication skills; in behavioural approach see also attitudes; beliefs;
listening; listening 165 religious beliefs; values
skills case study 162–3
communication methods, in in person centred practice Damon, case study 147–8
social work 85–8 160 day care services 68–9, 74–5
communication skills, case see also genuineness death see bereavement; loss
studies 41–2, 76–7, Connor, case study 240–1 definition, values 142
95–7 consent definitions
community advocacy groups in sexual relationships advocacy 99, 101
105 121–2, 124 ageism 47
case study 112–13 see also informed consent behaviour 164
community care Conservative Party 226–7 bereavement 129
legislation 236–8 control, of own lives 108, classism 47
as part of normalization 114, 244–5, 252 communication 82
67–8 coping strategies 206, 208 crisis intervention 204
segregation of men and case studies 210–11 disability 15, 16
women 119 counselling disabl(e)ism 47
see also care provision; case studies 210–12 discrimination 46, 47, 50–1
community living in crisis intervention 209 empowerment 102
community living 68–71 court cases, implementation of ethical codes 145
case studies 77–8, 171, legislation 233 eugenics 118
178–9, 185, 229–30 covert discrimination 51 handicap 15, 16
social learning 168 cranial malfunction, cause of impairment 15, 16
through five learning disabilities 24 labels 25
accomplishments Criminal Amendment Act learning difficulties 9
69–70 1885 123 learning disabilities 9,
transfer to Criminal Justice Act 1991 52 11–12
case studies 77–8, 185 Criminal Justice and Public loss 129
use of systems theory Order Act 1994 123 marginalization 50
183 crisis advocacy 106 mental retardation 18, 19
see also community care; crisis intervention 178, normalization 65
independent living 204–13
community participation 70
SUBJECT INDEX 277
of O’Brien’s five discrimination levels, and welfare state 226

accomplishments case studies 41, 59–61, opportunities, case studies
69–70 221–2 194–5
oppression 46 in bereavement 136–7 paid employment 70–1
participatory action research cultural differences 48 empowerment 102–3, 114
252 definition 46, 47, 50–1 through advocacy 107–12
prejudice 50 Dominelli’s avoidance case study 77–8
racism 47 strategies 56–7 through choice 73–4, 79
sexism 47 feminist perspective 218 through control of decision
sexuality 119 key points 63 making 108, 114
social policy 225 legislation against 52–4 in crisis intervention 207
social research 246 media stigmatization 48–9 through daytime activities
sociology 216 multiple discrimination 120 74–5
stereotyping 50 PCS analysis 54–6 definition 102
systems 180 and sexual identity 47–8 through emancipatory and
vulnerable people 14, types 48, 50–1 feminist research
237–8 see also oppression 248–53
delayed grief 135 dissemination of information key points 115
denial 135 97 through normalization
of self, response to Dominelli’s avoidance 69–70
conditions of worth strategies, racial in person centred planning
152 discrimination 56–7 158
dependency, in supported drama therapy 91–2 through respect for persons
relationships 161 Durkheim, Emile 217 155
developmental learning, and duties of statutory authorities through use of physical
communication 83–4 case studies 240 therapies 89–92
direct payments in law 234 see also advocacy;
case studies 229–30, 240 anti-discriminatory
for control of support eating patterns, after practice;
purchase 245 anti-oppressive
bereavement 135
disability practice; choice;
ecological systems theory
definitions 15, 16 participation; social
182–3
legislation 12, 13–14, inclusion
ecomaps 183
52–4, 63, 72, 118, enabling, in support work 184
ego-psychology, in crisis
227, 234, 235–8 entropy, in systems theory
intervention 205
policies 36–7, 228–9 181–2
electronic communication aids
see also learning disabilities environment, in
82
Disability Discrimination Act communication 88
sign systems 87
1995 52, 72, 238 environmental change, use of
emancipatory research 248
Disability Rights Commission systems theory 184
emotional problems, use of
53 environmental enrichment 103
cognitive therapy 169
Disabled Persons (Services see also empowerment
empathy 125
Consultation and environmental factors, cause of
in behavioural approach
Representation) Act learning disabilities 24
165
1996 52, 238 equilibrium loss
in crisis intervention 208
disabl(e)ism 28 case studies 209–10
in person centred approach
definition 47 in crisis 205–6
155, 160
multiple discrimination 120 in systems theory 182
in support of bereavement
discrete discrimination, ethical codes 145–6
134
definition 51 ethics 146–50
employment
case studies 147–9 functional states, international support for individuals

Clark’s good practice rules classification of learning 122–3
149 disability 20–1 see also lesbianism; same sex
ethical problems 146–7 functionalism 217 relationships
of good social care practice fund holding 38, 227 Housing Act 1996 238
107 funding 38, 238–9 Human Rights Act 1998 53,
key points 150 for advocacy 111 122, 238
in research with people with
learning disabilities gay relationships see ICIDH-2, classification for
253
homosexuality; same sex learning disability
use of behavioural
relationships support 20–1
techniques 170,
gender, and same sex ‘idiots’ 12
173–4
relationships 122–3 illness, following bereavement
ethnicity, and discrimination
gender stereotyping 120 135
48
genetic causes, of learning ‘imbeciles’ 12
Eugenic Society 118
disabilities 24 impairment 15, 16
eugenics 118
genograms 183 see also hearing impairment;
evaluation
genuineness ‘mental impairment’;
of care provision changes
needed in support of visual impairment
245–6
bereavement 134 incidence, of learning disability
in informed practice 39
see also congruence 22–3
Evalyn, case study 30
Ghita and Prem, case study inclusion see social inclusion
evidence based practice 58
202–3 independent living
external locus of evaluation
Giddens, Anthony, case studies 209–10,
152–3
structuration 218 229–30
extinction, of behaviour, in
government policies 36–7, transfer to 183
operant conditioning
256 case studies 185–6
167
see also social policy; society see also community care;
Green Papers 37 community living
facilitating, in support work grief 129 indirect discrimination,
184 chronic grief 135 definition 51
Family Allowance Act 1945 delayed grief 135 individual needs 13
226 experience of pain, stage in same sex relationships
‘feebleminded’ 12, 118 bereavement 131 122–4
feedback loops, in systems key points 139 and systems theory 184
theory 181–2 reactions 132–3, 135 see also person centred
feminism 218 see also bereavement; loss planning
feminist research 249–50 group advocacy 105 individuality 243
financial problems, case studies guilt, reaction to grief 133 individuals
209–10 communication 84, 86–7,
‘five accomplishments’ 69–70 88
handicap, definition 15, 16
flexibility, in emancipatory control of choices 143
health care assessment 18
research 253–4 ethical problems 146
hearing impairment, use of sign
focal roles 199 life choices 244
language 86
Fulfilling the Promises: inclusion 259
Heinrique, case study 60–1
Proposals for a support through advocacy
holistic care 219
Framework for Services 109
home visiting advocacy 105–6
for People with Learning use of behaviour analysis
homosexuality
Disabilities 239, 256 167
legislation 123
SUBJECT INDEX 279
industrial training, at ATCs Jason, case study 210–11 legal advocacy 106
68–9 Jess, case study 201–2 legislation 232–42
information, accessibility and Jim, case study 161–2 against discrimination
dissemination 97 Joe, case study 136–7 52–4, 63
information exchange 82 in area of sexuality 120,
see also communication Kevin and Eddie, case study 122, 238
informed consent Carers and Disabled
162–3
participation in research Children Act 2000
Kim, case study 95–6
projects 253 238
see also consent case studies 240
informed practice 39 labelling 25–9 Children Act 1989 53, 234
input, in systems theory key points 32 Children (Scotland) Act
181–2 power of 26, 27 1995 53, 234
institutional care see also labels; terminology Chronically Sick and
restriction of sexual labels Disabled Persons Act
freedoms 118–19 case study 29–31 1970 14, 28, 235
see also residential care definition 25 Criminal Amendment Act
instrumental conditioning 166 effect of 25, 66 1885 123
insurance scheme, for social effect of stereotypical terms Criminal Justice Act 1991
welfare 226 14 52
integration of learning disabled historically applied to Criminal Justice and Public
into community 68, 74–5 learning disability 12 Order Act 1994 123
through five in media 27, 49 Disability Discrimination
accomplishments need for 26, 28, 29 Act 1995 52, 72, 238
69–70 Labour Party, government 227 Disabled Persons (Services
intelligence quotient see IQ language, clarity when Consultation and
internal locus of evaluation breaking bad news 133 Representation) Act
152 language difficulties, and 1996 52, 238
International Classification of discrimination 48 documents 233
Functioning and language disorders, use of sign effect on people with
Disability (WHO) 20 language 86 learning disabilities
interpreters Lara, case study 241 235–8
use in communication 89 laws see legislation failure in advocacy 110–11
information about learned helplessness 102–3 Family Allowance Act 1945
research projects see also empowerment 226
253 learning difficulties homosexuality 123
interpretive methodology use of term 9, 13 Housing Act 1996 238
(sociology) 217–18 see also learning disabilities Human Rights Act 1998
intervention learning disabilities 53, 122, 238
in behavioural work 174 causes 24 informing organisational
in crisis 207 classification for support policy 239
see also crisis intervention; 20–1 interpretation 233
non-intervention definitions 9, 11–12 key points 32, 63, 128,
IQ 19, 21, 21–2 as distinct from/confused 242, 257
‘isms’, effecting discrimination with mental illness 24, Mental Deficiency Act 1913
47 27, 28, 49 12, 118
isolation, case studies 209–10 effect of legislation 235–8 Mental Deficiency Act 1927
Iyawo, case study 59 incidence 22–3 12
models 49 Mental Health Act 1959
use of term 9 68, 234, 235
Jacob, case study 41–2
see also disability
National Assistance Act see also communication; medical model of disability

1948 14, 28, 226, communications skills; 12, 15–18
235, 237–8 listening benefits 16
National Health Service and local policies, implementation case studies 29–31
Community Care Act of legislation 233 deficiencies 15, 17
1990 13–14, 53, 227, locus of evaluation 152 medical model of learning
234, 236–8 loss disability 49
National Insurance Act 1946 acceptance of reality, stage in Melina, case study 76–7
226 bereavement 131 Mencap 105
process of 37 adjustment 131, 132 see also Association of
Race Relations Act 1976 case studies 136–8 Parents of Backward
52 definition 129 Children
Registered Homes Act 1984 of equilibrium 182, 205–6 mental age (MA) 21, 71
238 feelings of people with ‘mental defectives’ 118
Sex Discrimination Act learning disabilities Mental Deficiency Act 1913
1975 52, 120, 238 134 12, 118
Sexual Offences Act 1956 keypoints 139 Mental Deficiency Act 1927
122, 238 see also grief, bereavement 12
use of terminology 72 loving relationships 121 mental health, code of practice
weaknesses 53 157
legitimized authority 72 MA (mental age) 21 Mental Health Act 1959 13,
Leroy, case study 194–5 Maisie, case study 171–2 68, 234, 235
lesbianism Makaton (sign language), use mental illness, as distinct
support for individuals by people with learning from/confused with
123–4 disabilities 85–6 learning disabilities 24,
see also homosexuality; same male dominance 218 27, 28, 49
sex relationships exposed by feminist research ‘mental impairment’ 28, 49
life choices, control by 250 see also impairment
individuals, policy aims and gender stereotyping mental retardation, definitions
244–5 120 18, 19
‘life model’ approach, in reflected in Beveridge ‘mentally handicapped’ 13
systems theory 182, Report 226 Michigan Department of
183 Margaret, case study 185–6 Community Health, code
life transitions, support 184 marginalization of practice for mental
lifelong developments plans, definition 50 health 157
for care provision 245 ethnicity 48 microsystems 181
listening of minority groups 72–3 mild learning difficulties 22
case studies 210–12 of people with learning minority groups
to identify problems in task disabilities 28 discrimination and
centred approach 192 through use of learning oppression 72–3
to individual needs 183 disability models 49 effect of funding on care
in supporting bereavement Marx, Karl 217 provision 228
134 means testing 228 emancipatory research 249
see also communication; Beveridge proposals 226 empowerment 102
communication skills, media inclusion in research process
listening skills stereotyping by labelling 248
listening skills 92–3 27, 49 models of disability
in removal of barriers 94 and stigmatization 48–9 influence on social policy
mediating, in support work 229
184 key points 32
SUBJECT INDEX 281
learning disability model 49 non-signing environment 88 in bereavement 134

medical model 12, 15, 17, non-verbal communication case study 136–7
18 87–8, 94 in crisis intervention 207
social model 16, 17–18 case study 96–7 in empowerment 107, 109,
moderate learning difficulties normalization 65–80 111
22 adoption of principles in UK key points 115
Monique and Freda case study 67–71 in person centred planning
127–8 in day care services 74–5 158
Moon (sign language) 86 definition 65, 75 in research 249–50, 251–3
‘moral defective’ 12 development of ideas in in task centred approach
‘moral imbeciles’ 12 USA 66–7 191–2
mourning see bereavement; key points 79 see also advocacy;
grief; loss see also social norms anti-discriminatory
moving on, after loss or norms, of society see social practice;
bereavement 132 norms anti-oppressive
multiple discrimination 120 practice; choice;
music therapy 91–2 O’Brien’s five accomplishments empowerment; social
inclusion
69, 75
National Assistance Act 1948 participatory action research
case study 76–7
252
28, 226, 237–8 occupational therapy
participatory practice 107–8,
definition of vulnerable case studies 240
249–50, 251–3
people 14, 235 to assist communication
patriarchy see male dominance
National Development Group skills 90–1
Pavlovian conditioning 165–6
69 one to one advocacy see citizen
PCS Analysis, of discrimination
National Health Service, views advocacy
54–6
of mental impairment in open systems 181
People First 71, 106
1940s 49 case studies 186–8
‘people with learning
National Health Service and operant conditioning 166
difficulties’ 13
Community Care Act case studies 172–3
‘people with learning
1990 13–14, 53, 227, oppression
disabilities’ 13
234, 236–8 case studies 41, 59–61
People with Learning
National Insurance Act 1946 definition 46
Disabilities: Services,
226 emancipatory research
Inclusion and
negative reinforcement, in 248–9
Partnership 255
operant conditioning feminist perspective 218
‘people with mental handicap’
166 key points 63
13
negotiated roles 200 see also discrimination
person centred approach
case studies 202–3 ‘An Ordinary Life’ concept 68
150–63
neutrality, in use of interpreters Ordinary Life Movement 68
case studies 161–3
89 organising, in support work
core conditions 153–4
New Labour 227 184
key points 163
New Right (Conservative output, in systems theory
to accessing support services
Party) 226–7 181–2
239
NHS see National Health overt discrimination 51
person centred planning
Service
156–9
nomenclature see labelling; Paget-Gorman sign system 86 code of practice 157
labels paid employment 70–1 comparison with
non-intervention, in parental power 126 behavioural approach
behavioural techniques case studies 201–2 171
174 participation
difficulties 159–61 behavioural techniques 170, ‘related limitations’ 19

planning book 158–9 173 religious beliefs
in policies to encourage in society 218 consideration in crisis
inclusion 245 powers, of statutory authorities management 206–7
see also individual needs under law 234 and discrimination 48
personal development, cultural precedent, implementation of see also attitudes; beliefs;
influences 55 legislation 233 cultural values; values
‘personal power’ 161 precipitating factors Report of the Royal
‘personal tragedy’, model of case studies 211–12 Commission on Care and
disability see medical in crisis 206 Control of the
model of disability prejudice, definition 50 Feebleminded 1908 12
physiotherapy, to assist private health care and research 246–56
communication skills 90 pensions 226–7, 228 key points 257
policy see government policies; professional advocacy 104 purpose 246
social policy profound learning difficulties research findings, accessibility
political power 36, 37 22 254
political rights, and advocacy protection, in sexual research projects, current 255
108 relationships 121–2, research questions 251
political science 36, 37 124 residential care
positive discrimination 51 provision of resources, and advocacy 105
positive reinforcement 166–7 funding 38 case studies 59–61, 76–7,
positivism 247 psychodynamic approach, in 148–9, 172–3
power crisis intervention 209 hostels 186–7, 201–3
of choice 108 psychology students 41
of labelling 26, 27, 49 links to social work 35–6 segregation of men and
of media to stigmatize theory, case studies 40–2 women 118–19
48–9 psychosocial factors, cause of see also institutional care
of men over women 218 learning disabilities 24 resources, provision, and
and gender stereotyping punishment, in operant funding 38
120 conditioning 166–7 respect for persons 155–6
and misuse of research 248, purpose, of this book 10 case study 162–3
250 with learning disabilities 70
of parents 126 qualitative research 247–8 respondent learning 165–6
case studies 201–2 with quantitative research rights
of people providing 248 ethical problems 146–7
diagnosis 15 quantitative research 247 promoting, role of support
‘personal power’ 161 with qualitative research worker 143, 144
political power 36, 37 248 for same sex relationships
of professionals 72, 73 123
in risk assessment 239 to marriage, case studies
of social acceptance 56 Race Relations Act 1976 52 202–3
of social learning role model racism risk assessment 239–40
168 definition 47 Rita, case study 112–13
of support workers 115, Dominelli’s avoidance Rob, case study 230–1
116, 126, 145, strategies 56–7 Rogers, Carl, person centred
159–60, 173–4 in labelling 29 approach 150–1
of theorists 34 multiple discrimination 120 role conflict 199–200
power imbalances 110, 145, readership, of this book 10 case studies 201–3
159–60 Registered Homes Act 1984 in providing advocacy
238 support 110
reinforcement 166
SUBJECT INDEX 283
see also conflict Serge, case study 29–30 social care assessment 18
role models, for social learning severe learning difficulties 22 social division 56
168 Sex Discrimination Act 1975 social exclusion
role obligations 200 52, 120, 238 case studies 186–8
role senders 199–200 sexism 120 identified through systems
role sets 199 definition 47 theory 183
role theory 178, 197–203 sexual identity, and social inclusion 73, 74
case studies 178–9, 201–3 discrimination 47–8 accessibility of research
and communication 95 Sexual Offences Act 1956 findings 254
key points 203 122, 238 barriers to achievement
origins 197 sexual relationships 121 244–5
roles case studies 125–6, 201–3 in bereavement process 134
adjustment after danger of abuse 121–2, case studies 195–6
bereavement 131 124, 125 through advocacy 107
assigned to disadvantaged signs of abuse 125 through emancipatory
66 sexuality 117–28 research 248–9
and labelling 25, 73 case studies 195–6 see also anti-discriminatory
social roles in normalization definition 119 practice, advocacy;
66 key points 128 anti-oppressive
types 198–9 treatment in institutions practice; choice;
Royal Commission on Law 118–19 empowerment;
Relating to Mental Sid and Reggie, case study participation; person
Illness and Mental 77–8 centred approach;
Deficiency 1954–7 12 sign languages 85–6 person centred
Rozia, case study 229–30 case studies 95–6, 172–3 planning
clarity of use in breaking Social Insurance and Allied
sadness, reaction to grief 132 bad news 133 Services (Beveridge
The Same as You? A Review of communication of Report) 12, 225
Services for People with information about social learning 168
Learning Disabilities research projects 253 case study 172
230–1, 256 use of interpreters 89 roles 199
same sex relationships 122–3 signs of abuse 125 social model of disability
case studies 127–8 Skinnerian conditioning 166 16–18
Samuel, case study 172–3 sleep disturbance, after benefits 17
scripts, in role theory 198 bereavement 135 deficiencies 17–18
Sebena, case study 148–9 social acceptance 56 social norms
segregation, of men and social care influence on people with
women in residential care anti-discriminatory role of disabilities 15, 16, 28,
118–19 care workers 61–2 72
self-advocacy groups 106, 110 CCETSW criteria 33 see also normalization
self determination changing structure 245 social phenomenum, in
right to 143 funding 228 sociology 220–1
and use of behavioural impact of government policy social policy 224–31
techniques 170 and legislation 37 case studies 229–31
self expression, development influence of political ideals definition 225
through therapies 92 38 and disability 228
self neglect, after bereavement key points 231–2 influence by models of
135 links with psychology 35–6 disability 229
sent roles 199 systems theory 182 key points 231–2
Serena, case study 221–2 see also welfare state
see also government policies; in legislation 14 case studies 178–9, 185–8

society through labels 12–14, and communication 94
social position, factors 25–6, 27 in crisis intervention 208
affecting 184 see also attitudes; labelling; key points 189
social psychology, role theory stigmatization origin 180
198 sterilization, of mentally in social care 182
social research 246–56 deficient 118
social rights, and advocacy stigmatization task centred approach 190–6
108 by media 48–9 appropriate situations
social role valorization 66 by use of terms 9 190–1, 193
social roles, in normalization through labels 25–6, 27 case studies 194–6,
66 see also labelling; see also 210–12
social sciences, theory 34–7 attitudes; stereotyping in communication 93
social systems 181 Stonewall, gay/lesbian pressure in crisis intervention 208–9
social welfare see social care; group 123 and empowerment 111–12
welfare state structuralism 217–18 features 190
society structuration 218 key points 196
influence on social care case studies 222–3 limitations 193
215, 220 ‘subnormal’ 13 practice 192–3
interpretations 217–18 subnormality model of learning principles 191–2
key points 223–4 disability 49 in social care 190–4
structure, and discrimination sub-systems 181 task centred theory 178
56 super-systems 181 case studies 178–9
see also social policy; support task planning 192–3
sociology in achieving taxation, and welfare provision
sociology 216–21 self-determination 143 226, 228
definition 216 by families 228 teaching, in support work 184
discipline of 34–5 in bereavement 133–4, 136 terminology 9, 12
key points 223 classification of levels in classification 18–22
research 219 needed, AAMR 19–20 discrimination 49–51
role theory 197–203 in crisis intervention 205 key points 32
theory 216–18 facilitating 184 in legislation 72
case studies 40–1 holistic care 219 in models of disability 15,
use in care practice 219–23 in life transitions 184 16
case studies 221–3 mediation 184 see also labelling; labels
see also social policy; society risk assessment 239–40 theorists, power of 34
‘special needs’ model of in social learning 168 theory
learning disability 49 speech therapy, case study case studies 40–2
speech therapy 95–6 definition 33–4
case study 95–6 therapies to enhance in informed practice 40,
to enhance communication communication 89–92 42–3, 260
89–90 support services, key points 43, 63
statutes 233 commissioning 238 nature of 34
statutory guidance 233 support workers see care in social care 33–44
statutory instruments 233 workers therapies see art therapy;
Stefan and Barbara, case study supported living projects, cognitive therapy; drama
125–6 advocacy groups 105 therapy; music therapy;
stereotyping systems, definition 180 occupational therapy;
definition 50 systems theory 177–8, physiotherapy; speech
gender 120 179–85 therapy
SUBJECT INDEX 285
‘thinking and doing’ evaluation Valuing People: A New

of practice 39 Strategy for Learning
Thompson’s PCS analysis Disability for the 21st
54–6, 143 Century 156, 230, 239,
‘threat to society’ model of 243, 244–6, 255, 256
learning disability 49 verbal communication
throughput, in systems theory with learning disabled 85
181–2 and Makaton 86
tokenism 70–1, 74, 183–4, visual impairment,
253 communication 86–7
voluntary advocacy
UK Central Council for agencies 103–4
investment and development
Nursery Midwifery and
of services 245
Health Visiting (UKCC),
von Bertalanffy, systems theory
evidence based practice
181
58
vulnerable people 244
UKAN 100–1
definition 14, 237–8
UKCC, evidence based practice
vulnerable state
58
case studies 211–12
unconditional positive regard
in crisis 205–6, 210
125, 154, 160
case study 162–3
unemployment, effect on Warnock Report, terminology
welfare state 226 9
Union of Physically Impaired Weber, Max 217
Against Segregation welfare see social care; welfare
(UPIAS) 16 state
United Kingdom Advisory welfare state 225–7
Network (UKAN) see also social care
100–1 White Papers 37
UPIAS 16 WHO see World Health
user forums 105–6 Organisation
Widget (sign system) 88
Word boards 87
value base
World Health Organisation
CCETSW proposals 143–4
(WHO)
personal 142–3
classification of learning
for social care 58, 63
disability 20
values 55, 58, 142–5
definitions of disability 15,
Clark’s good practice rules
16
149
definition 142
effect on response of support Yasmin, case study 96–7
worker 123
influence in social learning
168
key points 150
see also attitudes; beliefs;
cultural values;
religious beliefs
British Association of Social Dickinson, D. 130, 138
Author Index Workers (BASW) 145–6 Dillenburger, K 167
Brown, H. 67, 68, 125 Doel, M. 190, 192
Brown Cosis, H. 123, 124 DOH see Department of Health
Buckman, R. 129 Dominelli, L. 35, 56–7, 156
Abelson, R. 198
Bullock 120 Dormandy, K. 84
Action on Elder Abuse 125
Burke, B. 57 Downs, C. 121
Adams, R. 156
Bytheway, B. 47 Doyle, C. 125
Ahmed, B.S. 89, 103
Drake, R.F. 15, 36, 37, 229
Alcock, P. 225
Callis, S. 134 Dryden, W. 169
Allen, D. 68
Alston, M 246, 247, 248, 249 Caplan, G. 204
American Association on Carter 48 Ellis, A. 169
Mental Central Council for Education Emerson 68
Retardation(AAMR) 19, and Training in Social England, H. 151
23 Work (CCETSW) 13, Epstein, L. 93, 190
The Arc 22, 24 33, 58–9, 143–4 Everitt, A. 246, 256
Argyle 87 Chappell, A. 72
Atchinson 48 Clark, C. L. 146, 149 Faculty of Health and
Atkinson, D. 119 Coffee, S. 252
Community Care 75–6
Collins Dictionary 48, 164
Finkelhor, D. 125
Conlan, E. 101
Babbie, E. 247 Firth 207
Cooper 119
Bandura, A. 168, 199 Forryan, B. 125
Copley, B. 125
Bank-Mikkelsen, N. E. 66 Foucault, M. 218
Corby, B. 125
Banks, S. 49, 50, 57, 73, 97, Freed, A. O. 89
Corsini, R. J. 167
142, 143, 146, 160
Coulshed, V. 40, 97, 166, 260
Barber, J. G. 102, 103 Gaag, A. U. 84
Craft, A. 121, 125
Barker, P. J. 118, 167 Gambrill, E. 165
Croft, S. 71, 104, 107
Bateman, N. 107, 119 Gensler, H. J. 146
Baxter, C. 29 Germain, C. B. 182, 183
Beauchamp, T. 253 Dahrendorf, R. 200
Giddens, A. 218
Beazley, S. 250 Dalrymple, J. 57
Gilbert, T. 73
Beck, A. T. 169 Daly, C. 51
Gilgun, J. F. 183
Becker, H. S. 26, 27 Daniel, B. 83
Gilligan, R. 83
Bell, J. 246 Davenport 83, 84
Gitterman, A. 182, 183
Bennett, G. C. J. 125 Davidsen-Nielsen, M. 130
Goffman, E. 26, 40, 199, 256
Beresford, P. 71, 104, 107 Davies, M. 145
Golan, N. 205, 206, 207,
Berg, G. L. 247 Davis 197
208, 213
Beveridge, W.H. 12 Daw, R. 53
Gooding, C. 53, 123
Bierstek, F. 143 De Board, R. 180
Greif, G. L. 181
Birch, A. 83 de Vaus, D.A. 247
Grossman, H. J. 22
Blaxter, L. 72, 246 Department of Health (DoH)
Gunew, S. 250
Blumer, H. 26 23, 156, 158, 234, 235,
Booth, T. 254 237, 239, 243, 244–5,
Bouras, N. 22 255, 256 Hanrahan, P. 196
Bowles, W. 246, 247, 248, Department of Health and Hanson, B. G. 181
249 Social Security (DHSS) Haralambos, M. 34, 216, 217,
Braye, S. 122, 235, 238 69 218, 219
Brayne, H. 14, 28, 52, 72, DHSS see Department of Hawker, S. 25, 33, 120
120, 235, 236, 237, Health and Social Hawkins, J. M. 25, 33, 120
238 Security Hawkins-Shepard, C. 20
2
AUTHOR INDEX 287
Hayes, N. 87–8 McCarthy, M. 122, 124 Pavlov, I. 165

Herbert, M. 35 MacDonald, G. 168 Payne, M. 15, 34–5, 42, 46,
Hills, J. 226 McLeod, J. 92–3 97, 100, 102, 103,
HMSO 12 MacMullan, B. 106 115–16, 156, 160, 165,
Hockney, J. 207 McTaggart 252 170, 173, 184
Holburn, M. 34, 216, 217, Maelzer, J. 250 Philpot, T. 129
218, 219 Malin, N. 67 Pierson, J. 9, 11, 15, 26, 33,
Hollins, S. 129 Mandelstam, M. 239 46, 65, 99, 101, 102,
Holt, G. 22 Mark, R. 247 120, 142, 145, 164,
Horrocks, R. 119 Marsh, P. 190, 192, 196 169, 182, 183, 197,
Howe, D. 145, 151 Marshal, G. 197 204, 216, 225
Hudson, B. 168 Martin, G. 14, 28, 52, 72, Pincus, A. 182
Hughes, C. 72 120, 235, 236, 237, Poland, F. 35, 218
Hugman R. 146 238 Preston-Shoot, M. 122, 235,
Hume, I. 48 Masters, J. 248 238
Humphries, B. 246, 248 Mc see Mac Priestley, M. 37, 228, 229
The Maudsley 235 Pritchard, J. 240
Iphofen, R. 35 Mead, G. H. 26 Pryce, W. T. R. 48
Mearns, D. 151
Mencap 23 Reid, W. J. 93, 190–1, 196,
Jackson, M. 119 Messer, D. 35
Jeffery-Poulter, S. 123 247
Michigan Department of
Johnson, M. 130, 138 Reinharz, S. 249–50
Community Health 157
Jones, F. 35, 216, 217 Robinson, L. 35
Midwinter, E. 37–8, 225
Rogers, C. 150–1, 154, 155,
Minaham, A. 182
156, 161
Katz, J. 207 Moore, M. 250, 254
Rosengreen, K. E. 83
Keenan, M. 167 Murphy, N. 129, 134
Rosenham, D. L. 26
Kemshall, H. 110, 111, 240 Rowitz, L. 27
Kerr, K. P. 167 Nelsen, J. L. 93, 97 Rowntree, J. 181
Kings Fund Centre 67, 68, 70 New Penguin English Russell, O. 23
Kingston P. 125 Dictionary 82
Kohli, R. 145 Nirje, b. 66
Kon, Y. 22 Sarantakos, S. 250
Northern Ireland Executive 23
Schank, R. L. 198
Norton, D. G. 57
Scott, M. J. 169
Law, J. 83, 84 Ntebe, A. 103
Scottish Executive 23, 239,
Lawton, A. 254 243, 256
Learning Disabilities Advisory Oakley, A. 250 Scrutton, B. 130
Group 23, 239, 243, O’Brien, J. 69–70, 71, 75, Seligman, M. E. P. 102
256 104 Shardlow 155–6
Leik, N. 130 O’Hagen, K. 205, 212 Sheldon, B. 169, 174
Lemert, E. 26 Oliver, M. 15, 28, 108, 250 Silburn, R. 225
Lindemann, E. 204 Orcutt, B. A. 247 Silverman, D. 254
Linton, R. 197 Orme, J. 40, 97, 166, 260 Simons, K. 111, 157, 158,
Lishman, J. 94, 205 Oswin, M. 129, 130, 138 251–2
Littlechild, R. 110, 111 Siporin, M. 181
Louis, M. R. 58 Skinner, B. F. 166
Luchterhand, C. 129, 134 Page, M. 225
Parkes, C. M. 129, 131 Small, N. 207
Lynch, A. A. 181 Smith, H. 67, 68, 146
Parkinson, A. 83, 84
Parsloe, P. 240 Sorenson, B. 152
Mabey, J. 152 Spall, B. 134
Stalker, K. 253, 254 Wilson, A. R. 123

Stallybrass 120 Wolfensberger, W. 28, 65, 66,
Statt, D. A. 198 103, 105
Stern, D. 84 Worden, W. J. 129, 130, 132
Strean, H. S. 197 World Health Organisation
(WHO) 18, 20, 21
Taylor, P. 51 The World Health Report 22
The Arc 22, 24
The Maudsley 235 Yeatman, A. 250
Thomas, M. 9, 11, 15, 26, 33,
46, 65, 66, 99, 101,
102, 120, 142, 145,
164, 169, 182, 183,
197, 204, 216, 225
Thompson, D. 122, 124
Thompson, N. 17, 28, 39, 49,
54–5, 56, 61–2, 114,
120, 122, 123, 155,
156, 232–3, 255, 260
Thorne, B. 151, 153, 154
Tight, M. 72
Todd, M. 73
Trevithick, P. 97, 125, 165
Truman, C. 248
Turner, F. J. 197
Tyne, A. 75
UK Central Council for

Nursing, Midwifery and
Health Visiting (UKCC)
58
Union of Physically Impaired
Against Segregation
(UPIAS) 16
von Bertalanffy, L. 180, 181
Wadsworth, Y. 252
Walmsley, J. 119
Walters, R. H. 199
Wassell, S. 83
Watson 170
Weber, M. 120
Wedding, D. 167
Welsh Office 69, 235
Wilkes, R. 151
Williams, C. 125
Williams, F. 226
Williams, P. 68

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Working with People with Learning Disabilities

ADVOCACY AND LEARNING DISABILITY

HELPING PEOPLE WITH A LEARNING DISABILITY

HELPING PEOPLE WITH A LEARNING DISABILITY

A SUPPORTED EMPLOYMENT WORKBOOK

WOMEN WITH INTELLECTUAL DISABILITIES

PLANNING CARE FOR CHILDREN IN RESPITE SETTINGS

David Thomas and Honor Woods

Jessica Kingsley Publishers

First published in the United Kingdom in 2003

Library of Congress Cataloging in Publication Data

To Mary, Harold, Jill, Emma, Amie, Ben

‘Learning difficulty’ or ‘learning disability’, which term should be used?

What is a Learning Disability?

WHAT IS A LEARNING DISABILITY?

driven by several influences. These have included ideological considerations

such as learning disabilities or learning difficulties is not used in the Act, as a

The medical model of disability

The social model of disability

The contrast between the medical and social model of disability

THE CLASSIFICATION OF A LEARNING DISABILITY

If someone is assessed as fitting the above description, that person would

This concept highlights the diversity of information that is required and

• at a society level: simple to complex areas of the person’s life, the

• Mild is measured within the IQ range of 50–69. This would

HOW MANY PEOPLE HAVE A LEARNING DISABILITY?

may function without the services providing support. In 2001 approxi-

WHAT ARE THE MAIN CAUSES OF A LEARNING DISABILITY?

identified the reason remains unknown for approximately one-third of the

LEARNING DISABILITIES AND MENTAL ILLNESS

Labelling and its background

have lifelong implications. This is not intended as a guide to the hierarchy of

may not be against specific deviant behaviour but in response to deviance

The placing of labels

who have a learning disability have derived from medical definitions.

CASE STUDY ONE

CASE STUDY TWO

Due to the increased risks Evalyn was presenting through medical

WHAT IS MEANT BY THEORY?

theory being developed from ideas, drawn together to formulate an ex-

highlighted patterns of inequality that have affected and impacted on those

This reinforces an argument that the area of study of sociology is immense

In the case of disability policy, a commissioned piece of research or spe-

SOCIAL WELFARE AND PRACTICE

…some balance of public and private provision is normally to be found;

Informed practice is suggested as being achieved through what Thompson

CASE STUDY ONE

CASE STUDY TWO

undertaken on race, deviance, sexuality, gender and class. Within any

DISCRIMINATION AND OPPRESSION

response to mental illness is both discriminatory and oppressive to the per-

using an example considering the ‘colour blind’ approach. If all people, no

TYPES OF DISCRIMINATION AND OPPRESSION

INFORMING, DEVELOPING AND USING AN

P refers to the personal or psychological; it is the individual level of

The P and C level in turn are encompassed by the S level:

1. Denial – a refusal to accept that people are discriminated against for

Consideration of these eight avoidance strategies raises awareness of how

Why is a value base needed?