THE KIT A guide to the advocacy we choose to do

412 Pages·2007·2.56 MB·English

Contents
THE KIT A guide to the advocacy we choose to do
Foreword
....................................................................................................................iii
Introduction
...............................................................................................................v
How to Use This Kit
...........................................................................................xi
Knowledge and Attitudes Booklet
Consumer and carer movements.........................................................................1
Undertaking advocacy........................................................................................24
Some forms of consumer and carer participation............................................30
The challenges of advocacy................................................................................51
Maintaining personal effort in advocacy...........................................................64
Engaging networks and organisations..............................................................73
The mental health system...................................................................................82
The higher education system .............................................................................96
The broader community....................................................................................103
Skills, Strategies and Tools
1. Advocacy and the Individual
1.1 Looking after yourself..................................................................................................1
1.2 Remembering who you are.....................................................................................26
1.3 Assertiveness............................................................................................................29
1.4 Problem solving........................................................................................................34
1.5 Personal administration and organisation.............................................................39
1.6 Interpersonal communication..................................................................................42
1.7 How to influence people..........................................................................................55
1.8 The business end of participation...........................................................................58
1.9 Creating a personal advocacy plan........................................................................64
1.10 Family involvement in service delivery to consumers.............................................66
1.11 Reaching agreement with significant people..........................................................71
1.12 Conflict resolution/mediation/complaints...............................................................73
Contents i
2. Getting Organised
2.1 Briefing and debriefing.............................................................................................77
2.2 Identifying and overcoming barriers........................................................................81
2.3 Dealing with conflict of interest................................................................................84
2.4 Finding relevant information....................................................................................86
2.5 Managing change....................................................................................................93
2.6 Gaining support from service providers..................................................................99
2.7 Keeping the momentum going..............................................................................102
2.8 Managing a budget................................................................................................105
2.9 Managing a contact list...........................................................................................110
2.10 Reflection and evaluation........................................................................................112
3. Some Specific Activities
3.1 Presentation/education...........................................................................................127
3.2 Telling stories...........................................................................................................134
3.3 Organising workshops............................................................................................138
3.4 Attending conferences............................................................................................148
3.5 Report writing..........................................................................................................155
3.6 Submission writing..................................................................................................160
3.7 Chairing meetings...................................................................................................163
3.8 Being a committee member...................................................................................166
3.9 Being the ‘layperson’ among ‘experts’..................................................................173
3.10 Note-taking and minute-taking..............................................................................176
4. Advocacy and the Organisation
4.1 Getting yourself and your organisation focused....................................................181
4.2 Starting up a group.................................................................................................185
4.3 Developing your group...........................................................................................189
4.4 Leadership...............................................................................................................194
4.5 Team development................................................................................................200
4.6 Worker selection and recruitment.........................................................................204
4.7 Organisational administration................................................................................212
4.8 Business (organisation) planning...........................................................................217
4.9 Promotion (organisational).....................................................................................220
4.10 Becoming an incorporated body...........................................................................223
5. Getting Strategic
5.1 Strategic thinking in targeting the message.........................................................225
5.2 Creating networks..................................................................................................228
5.3 Gaining support and fundraising..........................................................................232
5.4 Developing a newsletter........................................................................................235
5.5 Working with the media.........................................................................................240
5.6 Lobbying..................................................................................................................246
5.7 Developing a campaign.........................................................................................251
Glossary
..................................................................................................................255
Bibliography
.........................................................................................................261
Index
........................................................................................................................269
ii The Kit A resource kit for advocates
Foreword
In 1992, when all Australian Health Ministers agreed to the National Mental Health
Strategy, the reduction of stigma and discrimination and the participation of consumers
and carers in decision making were recognised as key underlying principles for mental
health service reform. Much has been achieved since 1992, both in increasing
community understanding of mental illness and in recognising the knowledge and
experience that consumers and carers have of mental health services. The Community
Development Project is a major national project funded under the Strategy with the aim
of enhancing community sector advocacy and embedding the role of consumers and
carers in the mental health system. It was born of the commitment to facilitate
consumer and carer input and influence. The Kit, a guide to the advocacy we choose to
do, is the product of that commitment and a response to the consumer- and carer-
identified need for improved advocacy skills. It is also the result of the efforts of many
people, including many consumers and carers, working hard to confront barriers and to
support the delivery of quality mental health services.
Much work remains to be done, however, in promoting positive attitudes about mental
illness and in ensuring that consumers and carers have a genuine voice and place at the
mental health service table. The second National Mental Health Plan, a second five year
plan outlining ongoing mental health reform, reaffirms the Government's commitment
to establishing mechanisms to facilitate consumer and carer input into decision making
at all levels. It is hoped that The Kit will be a significant support for consumers and carers
wishing to develop skills and strategies for constructive advocacy on their own behalf,
on behalf of those they care for, and for people with a mental illness more generally.
The right to advocacy by consumers and carers is a key right set out in the Mental
Health Statement of Rights and Responsibilities, one of the foundation documents
supporting the National Mental Health Strategy. I am very pleased, therefore, to
commend The Kit, a guide to advocacy for consumers of mental health services and
family carers. It is a significant step in supporting the emerging and potential roles for
consumers and carers in advocacy work across the mental health system and reflects the
Commonwealth's commitment to consumer empowerment, the reduction of stigma
and discrimination and to ensuring the rights of people with a mental illness.
Dr Harvey Whiteford
Commonwealth Director of Mental Health
May 1998
Foreword iii
The views expressed in this Kit are those of the authors
and do not necessarily represent those of the Commonwealth
Department of Health and Family Services.
Copyright
This work is copyright. It may be reproduced in whole or in part for study, training or
advocacy purposes subject to the inclusion of an acknowledgement of the source and
subject to no commercial usage or sale. Reproduction for purposes other than those
indicated above require the written permission of:
Mental Health Branch
Commonwealth Department of Health and Family Services
GPO Box 9848
Canberra ACT 2601
Australia
ISBN 0-642-47108-8
The Kit: A guide to the advocacy we choose to do
A resource kit for consumers of mental health services and family carers
SPICE Consulting
First edition – June 1998
Second edition – August 1999
iv The Kit A resource kit for advocates
Introduction
This Kit is the product of the ‘Community Development Project’, a major national
project which was conducted over 12 months during 1997 and 1998. The project was
an initiative of the National Mental Health Strategy (NMHS) and was undertaken by
SPICE Consulting on behalf of the Commonwealth Department of Health and
Family Services.
The NMHS comprises specific strategies in a National Mental Health Plan, designed to
assist in implementation of a National Mental Health Policy. The Policy is a statement by
the Governments of the Commonwealth, States and Territories of Australia. It sets clear
directions for development and reform in mental health services intended to result in
significant improvement in treatment, care and quality of life for all Australians living
with a mental illness and family carers.
An emphasis of the NMHS is on increasing and supporting the advocacy activities of
consumers and carers. The thrust of the Community Development Project (CDP) was
particularly in keeping with this emphasis on advocacy, including both self advocacy
and systems advocacy, where these activities assist consumers and carers to participate
in decisions affecting their lives, services and their own treatment.
The goal of the CDP was to enhance advocacy activity through increasing knowledge
and strengthening skills within the mental health community sector. The strategy for
achieving this goal was to identify required knowledge and skills, provide opportunity to
acquire skills, and create advocacy resources to support consumers and carers to
undertake activities which promote sustainable change – particularly in promoting
positive attitudes and addressing negative perceptions about people with mental illness.
The CDP set out to create outcomes which extended beyond the life of the project itself
(that is, beyond June 1998) by:
● Creating this Resource Kit as a broad basis for current and future action rather than
as a narrow formula for addressing the most common ‘problems’. Thus, the Kit
contains information about systems, attitudes, experiences, skills and strategies which
can be used in many ways by different people who have varied and changing goals
and needs.
● Developing an Infrastructure to assist with sustaining the use and continued
development of the resources by gaining support and commitment from consumer
and carer groups in each State and Territory to promote the use of the resource Kit.
● Commencing a Leadership Strategy which provides some consumers and carers in
each State and Territory with the skills and experience to become ‘ambassadors’ for
the resources – leading and mentoring their use. These consumers and carers
participated in a nationally accredited Workplace Trainer Category 1 course.
● Developing and initiating a planned Dissemination/Information Strategy in each
State and Territory to encourage initial awareness of the resources to kick-start
consumer and carer use of the resources; and to extend the use of the resources in
ways that are appropriate for State-specific and local situations.
Introduction v
The resources in this Kit are only one part of a broader strategy which aims to increase
and support the advocacy activities of consumers and carers in the mental health sector.
In turn, that advocacy strategy is one part of the larger National Mental Health Strategy.
Values and Assumptions
The major values and assumptions underpinning the form and content of this Kit need
to be stated, in order to clarify contexts and meanings that may otherwise be open to
misinterpretation. The Kit has been developed through contributions from a diverse
range of people. Each contribution has carried particular beliefs and values about the
nature and purpose of advocacy; and particular assumptions about, and applications of,
the material. While such diversity can be stimulating, an understanding of assumptions
held by the contributors provides basic reference points for people using the Kit.
● The pursuit of rights, justice and equality of opportunity is critically important for
consumers and carers; both as individuals and within broad groupings.
● The current balance of power in the mental health sector between consumers and
carers and those with whom they deal (including service providers, administrators
and community members) is inequitable, unacceptable and culturally and
structurally sustained. Advocacy activity must be directed towards correcting this
imbalance.
● The lived experiences and knowledges of consumers and carers should be
recognised, valued and respected. These experiences and knowledge can contribute,
and have contributed, to improvement in the mental health sector.
● Self advocacy is the most appropriate and empowering form of advocacy. Generally,
people prefer to express their own position rather than have other people represent
them, while recognising a role for nominated representatives and supportive
advocacy in certain circumstances.
● Self-empowerment attained through an ongoing process of acquiring and using
knowledge and skills is more sustainable and enduring than the temporary feelings
of success gained by responding to opportunities for participation as they arise.
However, even such occasional participation can be a source of empowerment.
● Collective advocacy activity (engaged in by consumers, by carers and by
consumers and carers working together) has greater potential for achieving
significant outcomes than uncoordinated individual actions. Sometimes, though, the
activities of individuals can inspire others to participate, as well as preparing the way
for important changes.
vi The Kit A resource kit for advocates
‘Advocacy’
‘Advocacy’ is used in this Kit in a broad sense to refer to a wide range of activities
engaged in by consumers and carers in promoting and supporting their basic human
rights and their right to services and information. The following terms and meanings are
used throughout this Kit.
Advocate (as in ‘John is my advocate’) – a person who actively supports another
person’s cause.
Advocate (as in ‘I advocate that consumers and carers should be involved in
evaluating the program’) – to provide active support to another person’s cause.
Self Advocacy – the activity an individual undertakes to represent his/her own
needs/rights.
Peer Advocacy – the activity undertaken by more than one person to represent
the needs/rights of his/her peers (for example, carers addressing the needs/rights of
other carers).
Systems Advocacy – those activities directed specifically towards the systems,
structures and forms that are instrumental in the conditions which create injustices
and inequities.
Resource Development
The resources in this Kit were developed with the clear view that they would be a
foundation resource. They are a tool; they are not a ready-made or a ‘one-size-fits-all'
solution to the myriad of problems, the pervading discrimination and the poor service
which many consumers and carers experience.
The resources were developed using a number of principles:
● The CDP used a model of participatory action research to involve stakeholders in
ongoing assessment, action and evaluation of project activities. A Critical Reference
Group of three consumers and three carers (see Acknowledgments) reviewed the
project’s approach and ensured maintenance of the consumer and carer focus and
direction of the project.
● The CDP built on current information and knowledge. A range of national and
international literature was collected which identified the continuing growth in
consumer and carer advocacy and some interesting resources applicable to the CDP.
● The CDP recognised the fundamental value of consumer and carer input at all
stages. Some consumers and carers were employed by SPICE; some were supported
to participate in various project activities; some were members of the Critical
Reference Group; others were part of the external Project Advisory Group (see
Acknowledgments) which monitored the development and progress of the CDP,
offered advice from various areas of expertise and facilitated access to wider
networks. (Over 50 consumers and carers were directly involved in developing
material, critiquing drafts and providing strategic advice).
● The CDP resources have relevance in many different ways – national and local
relevance; individual and group advocacy; personal and interpersonal situations.
Introduction vii
● Humanism, hope and passion are fundamental to consumer and carer advocacy: the
resources demonstrate these qualities through examining history, relating individual
stories and developing resource tools to build on passion, build up hope and
celebrate success. While at times this Kit emphasises strategic, pragmatic approaches
to advocacy, it does so as a means to an end rather than because such approaches
are highly valued.
● Consumers and carers, as individuals or in groups, will interpret and shape the
resources to meet their own requirements. People have differing advocacy needs,
preferred styles for engaging in advocacy activity, differing ways of learning and of
accessing information.
● People will use the resources to develop and strengthen their own advocacy style.
Notes
1. The materials in this Kit have been developed in good faith through extensive
research based on the actual experiences of consumers and carers involved in
advocacy, networking and participating. They have been validated through a
number of mechanisms and cross-referencing of sources. However their effectiveness
in any given situation cannot be assumed.
2. The words ‘group’ and ‘organisation’ refer to similar situations; consumers and carers
often use them interchangeably.
3. People’s stories are often presented as examples. They are taken from real-life
situations but fictitious names have been used.
4. Some quotes are referenced to a published source. Other unpublished quotes arose
through the project process and are attributed to a project participant who is listed
in Acknowledgments.
5. The Kit emphasises empowerment as a universal concept and provides for substantial
individual modification and interpretation of the materials; however it cannot (in its
present form) meet the needs of all Australian consumers and carers. The Kit would
require culturally sensitive translation and interpretation in order to be of most value
to many people from non-English speaking, Aboriginal or Torres Strait Islander
backgrounds.
viii The Kit A resource kit for advocates
Acknowledgments
The Community Development Project (CDP) was born out of the National Mental
Health Strategy, (NMHS). Many people participated in shaping the NMHS and in
making things happen ‘on-the-ground’, through both pursuing its intent and driving it
beyond its original expectations. Many of these people have been consumers of mental
health services and associated carers.
The NMHS created the National Community Advisory Group on Mental Health (NCAG).
This group was influential in raising awareness of the need for these resources. The
Australian Psychiatric Disabilities Coalition (APDC) and the Australian National
Association for Mental Health (ANAMH) were also instrumental in shaping the
requirement for these resources. Many individuals contributed to the push for the
development of consumer and carer advocacy resources; Janet Meagher stands out as a
valued, persistent and determined participant.
The Commonwealth Department of Health and Family Services responded positively to
the request for resource development. Federal funding, sound project management and
a continuing commitment to positive outcomes have been the hallmarks of the
Department’s contribution. Linda Pettigrove, in particular, maintained a sensitive
oversight of the resource development.
SPICE Consulting established a core team of consultants to design, develop and manage
the CDP. The SPICE core team comprised Deborah Fullwood, Peter Gibbs, Merinda
Epstein and Greg Turner. The creation of the resources was a joint effort between the
team and many other people, mainly consumers and carers. Anne Olsen’s contribution
was significant, and over 50 consumers and carers (and other people with special
knowledge) contributed through workshops, work groups and as individuals in advising,
writing and validating the developing resources.
The CDP was supported by a Project Advisory Group of consumers, carers, academics
and other community sector people drawn from a number of different States.
A small group of three consumers and three carers made up a Critical Reference Group
which met regularly with two of the consultants. As a group considered typical of the
final users of the resources, they were charged with the task of being critical of the
project process. They served to keep the consultants honest and true to consumer and
carer requirements.
Melinda and Richard May of Pro Bono Publico Communications are thanked for their
sensitivity and creativity in the final design and layout of the resources; and Simon
Kneebone is thanked for the energy and pertinence of the cartoons.
Acknowledgements ix
The following people have agreed to be acknowledged:
Project Advisory Group Members
Bland, Robert Plant, Rowena
Davies, Wendy Smith, Meg
Gray, Jill Tooth, Barbara
Meagher, Janet Whitehead, Ailsa
Critical Reference Group Members
Afflick, Margaret McCormick, Bernie
Clarke, Sara Mill, Shirley
Hume, Gail Paxinos, Kaliope
Contributors, Advisers and Validators of Materials
Armstrong, Sue Luxford, Pat
Austin, Rick Marsh, Lloyd
Bayly, Margaret McGrath, John
Beattie, Jeffrey Meagher, Janet
Bowler, Adrian Mill, Shirley
Bryant, Liz Olsen, Anne
Burger, Jenny Paxinos, Kaliope
Chambers, Glen Pearman, Lina
Champ, Simon Pemberton, Elizabeth
Clarke, Sara Pettigrove, Linda
Deveson, Anne Pinches, Allan
Drake, Maxine Plant, Rowena
Drummond, Roma Player, Judith
Dunn, Ann Plehanoff, Lindy
Einfeld, Marcus Ransome, Meta
Elsom, Stephen Reibelt, Elanor
Epstein, Merinda Richards, Geoffrey
Fenton, Mike Robertson, Penny
Francis, Graeme Robertson, Sue
Fullwood, Deborah Robinson, Ruth
Gibbs, Peter Rosenblum, Jo-Ann
Glover, Helen Salvage, Robert
Goodall, Deborah Scanlon, Tyson
Gow, Catherine Schmalkuche, Diana
Graham, Caroline Scott, Melanie
Gray, Jill Shipp, Yvonne
Guthrie, David Smith, Darrell
Guy, Jenny Smith, Meg
Hanich, Adolf Souwer, Diana
Harrison, Brenda Strong, Ria
Hodgson, Orme Tooth, Barbara
Hume, Gail Towler, Irene
Hyde, Graham Turner, Greg
Keating, Maree Verick, Margaret
King, Margo Wadsworth, Yoland
Lawrence, Sarah Wells, Leanne
Leggatt, Margaret West, Shane
Leong, Leonie Whitehead, Ailsa
Lovell, Peter
x The Kit A resource kit for advocates