Mental Health Advocacy Learner Resource Book e-learning hub Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 1 Acknowledgment of Country BEING would like to acknowledge the Traditional Custodians of Country throughout Australia and recognise their continuing connection to land, waters and culture. We extend respect to Elders past, present and emerging. Australia was, is and always will be Aboriginal Land. Funding This project was funded by the Australian Government Department of Social Services. Visit www.dss.gov.au for more information. BEING acknowledges and greatly appreciates the support provided by Department of Social Services in the development of this resource. BEING Co-design committee Without the expertise of the following people, this project would not have been possible. Thank you for your hours of work and dedication. Frank Cohen Sitota Keane Kylie Smith Tony Thiveos Fiona (Noni) Mitchell Elizabeth (Libby) Clinton Shifra Waks Lindsey Reilly Stephen Smith Jacinta (Dinda) Gardner Melissa Joy Jessica Atterton Acknowledgment of Lived Experience BEING recognises all people living with mental health issues and their diverse experiences of emotional distress, for their strength and courage to challenge and face each day. You are the driving force in the work we do. Your voice matters and is greatly valued. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 2 Crisis Supports and information services. BEING recognises recovery as a personal journey, defined in ways that are meaningful to the individual. We aim to respect the uniqueness of recovery and acknowledge those living with mental illness throughout our courses. BEING courses often includes content that touch on the historical and contemporary experiences of those with lived experience of mental illness and emotional distress. You are the expert in yourself, your well-being, and your self-care. If you need someone to talk to after completing this course, please consider the following support services available to you. Beyond Blue- 1300 224 636 Website: https://www.beyondblue.org.au/ Lifeline- 13 11 14 Website: https://www.lifeline.org.au/about/our-services/ NSW Mental Health Line- 1800 011 511 Website: https://www.health.nsw.gov.au/mentalhealth/Pages/mental-health-line.aspx Suicide Call Back Service- 1300 659 467 Website: https://www.suicidecallbackservice.org.au/ Blue Knot Helpline- 1300 657 380 Website: https://blueknot.org.au/survivors/blue-knot-helpline-redress-support-service/ Copywrite Disclaimer BEING Mental Health Consumers does not give a warranty nor accept any liability in relation to the content of this work. The information provided by BEING Mental Health Consumers in these course materials is for general educational purposes only. All course materials made available to learners may be used by students enrolled in the relevant subjects for educational purposes only. Course materials may not be reproduced for any purposes, including commercial purposes, without prior written permission from BEING Mental Health Consumers, except to the extent permitted under the Copyright Act 1968 (Cth). © 2023 BEING Mental Health Consumers. Reference To reference this resource please use the following protocol: BEING Mental Health Consumers. (2023). Mental Health Advocacy, (Learner Resource), Sydney, Australia. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 3 Crisis Supports and information services. ................................................................................................... 3 What is Mental Health Advocacy? ................................................................................................................. 6 Who are mental health advocates? ............................................................................................................... 6 What do Advocates do? ................................................................................................................................... 8 What makes a good advocate? ...................................................................................................................... 9 Advocacy Principles ....................................................................................................................................... 11 Ethical Frameworks ........................................................................................................................................ 12 Toolkits ............................................................................................................................................................. 12 Intersectional Advocacy ................................................................................................................................ 13 Person-Centred Advocacy ............................................................................................................................. 15 Types of Advocacy ......................................................................................................................................... 16 The Peer Advocacy Relationship ................................................................................................................. 24 Activity 1 instructions................................................................................................................................. 25 Peer Advocacy is... .......................................................................................................................................... 27 The Advocates Role........................................................................................................................................ 28 The Advocacy Process .................................................................................................................................. 28 Activity 2 instructions................................................................................................................................. 31 Advocacy skills ................................................................................................................................................ 35 Preparation skills ........................................................................................................................................ 35 Organisation skills ...................................................................................................................................... 36 Communication skills ................................................................................................................................ 36 Conflict Resolution Skills ........................................................................................................................... 37 Advocacy Planning Template ....................................................................................................................... 42 Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 4 This course aims to provide you with introductory level skills and knowledge related to mental health advocacy and intends to support individuals to understand the advocacy process and build the confidence to voice their rights, needs and concerns. This course is suitable for all individuals and workers of all levels in a range of health or community services settings who provide services using a human rights-based approach and have direct interaction with clients. This course is broken down into 4 main topic sections Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 5 What is Mental Health Advocacy? Advocacy is defined as any action that speaks in favour of, recommends, argues for a cause, supports or defends, or pleads on behalf of others. (Hampton, et al., 2018) (Saha, 2021). Who are mental health advocates? Advocacy in this field began more than 30 years ago when people living with mental health issues and their families first made their voices heard. Gradually, these people and their families were joined and supported by a range of organisations, mental health workers, associations, and governments (Saha, 2021). There are a range of people who can fall into the advocacy role including: Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 6 Consumers and their family members/carers Peer Workers Individual consumers, carers and families advocate for their needs, hopes and goals in all areas of their care and recovery. One of the earliest examples of this was the psychiatric survivors movement in the 1960-70’s. The NSW peer workforce provides direct care to people across the public mental health system including acute in-patient care and the community. Non-government organisations These organisations may involve only mental health professionals, or be made up of interdisciplinary teams, involving people from diverse areas. Examples of NGO’s that may provide individual advocacy support to mental health consumers, as part of case management and other supports include: Headspace, Neami and Lifeline. General health workers Mental health workers have taken a more active role in protecting consumer rights and raising awareness for improved services and it is not unusual for general health and mental health workers to become advocates for their patients. Some specific advocacy roles might include: Clinical work from a consumer and family perspective. Participation in activities with consumer and family groups. Developing consumer groups and family groups. Planning and evaluating programmes together. Peer workers draw upon their own personal lived experience of mental illness, suicidal crisis and recovery to provide authentic engagement and support for people accessing mental health care. Support includes help with navigating the mental health service system and individual and systemic advocacy. Policymakers and planners Ministries of health, and specifically their mental health sections, can play an important role in advocacy. Ministries of health may implement advocacy actions to influence the mental health of populations in general or promote consumers’ rights. They may work with other advocacy groups and often develop many advocacy activities by working with the media. Additionally, it is necessary for each ministry of health to convince other policymakers and planners, to focus on and invest in mental health . Watch and reflect Watch: What is a mental health advocate? (5 mins) LONG URL: https://www.youtube.com/watch?v=NiF1aRAsqQ8&t=148s After the video, ask yourself: What areas of the mental health system do you think most often require the support of an advocate? Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 7 What do Advocates do? The primary role of an advocate can be split into 3 main areas. Advocates often: The areas of the mental health system that often require the support of an advocate include: Inpatient care conditions Involuntary treatment Supported decision making Informed decision making Upholding rights when accessing the system Speaking up for the rights of vulnerable groups living with mental health issues, for example: Rural and Remote, First Nations Australian, LGBTIQ+, Older Adults Carer and family inclusion An advocate should: ✓ listen to your views and concerns ✓ help you explore your options and rights (without pressuring you) ✓ provide information to help you make informed decisions ✓ help you contact relevant people, or contact them on your behalf ✓ accompany you and support you in meetings or appointments. An advocate should not: give you their personal opinion solve problems and make decisions for you make judgements about you. (mind, 2018) Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 8 What makes a good advocate? Generally speaking, a good mental health advocate must: understand the roles of mental health and social care professionals understand confidentiality issues such as informed consent and data protection effectively communicate with empathy, understanding and non-judgment build relationships with consumers, professionals and other stakeholders act in ways that minimise power imbalances participate in and role model self-care. As a knowledgeable supporter that is standing behind an individual or group, the mental health advocate must be able to: identify key issues or problems research and gain access to relevant people and information related to the issue provide an individual with all the information relevant to the issue explore the advantages and disadvantages of various options for resolving the problem document conversations, meetings, and records of action. After the options have been presented, the ultimate decisions about what to do and how to do it belongs to the individual, not the advocate. Therefore, the role of a mental health advocate is to stand beside the individual or group and support them to: build confidence practice self-advocacy skills learn about their rights, options and solutions. If the mental health advocate is required to stand before (speak on behalf of) the individual or group, the advocate needs to remember that they are just a spokesperson and must implement whatever wishes the individual or group has. On top of those already mentioned, this could require the advocate to have skills in: negotiation conflict resolution marketing and communications event planning media knowledge. Good advocates do the following This means making sure you understand legislation like the Mental Health Act 2007. You also need to be sure you are aware of government policies and strategic plans relating to the mental health sector and you should be familiar with all 30 articles of the Declaration of Human Rights. You can access information related to these with the following links: • Mental Health Act 2007 - WayAhead LONG URL- https://wayahead.org.au/get-the-facts/mental-health-act-2007/ • • Universal Declaration of Human Rights (Simplified) (amnestyusa.org) LONG URL- https://www.amnestyusa.org/wp-content/uploads/2017/11/Simplified-UDHR.pdf NSW Health legislation and Polices LONG URL- https://www.health.nsw.gov.au/mentalhealth/legislation/pages/default.aspx Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 9 This means you can set aside your own views, opinions and attitudes in order to fully hear a person’s perspective, situation and needs. Practicing your skills in active listening can help you to build these skills, as they don’t always come naturally to everyone. A helpful resource for Active Listening is How to Practice Active Listening: 16 Examples & Techniques (positivepsychology.com) LONG URL- https://positivepsychology.com/active-listening-techniques/ Strong relationship builders and act in ways that minimise power This means that you can recognise the strength it takes to ask for help and acknowledge that people living with mental health issues have often been dismissed and had their complaints ignored. As an advocate you are often representing systems that have perpetrated harm against mental health consumers and you need to put the effort in to build trust and resist any temptation to “take over” or “make decisions for” the person. This means that advocates spend a lot of time gathering information, this includes interviewing people, desktop research, reading a lot and searching for information that relates to the persons situation and needs. This means that you should be confident in your written and verbal communication, and not shy away from engaging in conversations that have the potential to escalate to conflict. It means that while standing up for, on behalf of or beside a person that you are not an impartial mediator. Your role is to achieve the outcome that best suits them, but that also means you may need to help a client understand what is and is not achievable in their situation and help them to compromise and negotiate the outcomes when necessary. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 10 Advocacy Principles Advocacy can look very different depending on its focus and method, but here are 4 unifying principles every advocate should uphold. (Soken-Huberty, 2023) Clarity Good advocacy has clear messaging and clear asks. With very little work, people should be able to understand what the problem is and how it can be fixed. This is the first step to good advocacy, but it’s often the most difficult because many issues are complex. Good advocates are excellent communicators who can frame even the most complex issue in a way most people understand. They’re also very good at determining what “clarity” means for specific audiences and refining their message accordingly. Transparency Advocacy typically involves speaking on behalf of others, so trust is essential. How do advocates build trust? Transparency. That includes open, honest, and consistent communication about things like finances, leadership structures, messaging, methods, and much more. For advocacy organisations, transparency also means conducting internal audits on systemic problems. As an example, in 2020 Amnesty International found evidence of systemic racism within their own organisation. Responding to major issues within an organisation is also part of being transparent. If advocacy groups choose to hide things, it damages trust. Without trust, advocacy will have little to no impact. Flexibility Situations can change very fast. Whether it’s an individual’s case or a system-wide issue, events impact the problem and what the best solutions are. Good advocates are flexible enough to adapt to new information, adjust their methods, and pivot their messaging. Without flexibility, advocacy is doomed to ineffectiveness or outright harm. As an example, advocacy groups focused on healthcare access needed to shift quickly as COVID-19 spread around the world. Social Justice Whatever involvement you may have in the advocacy process, you will need to be aware of social justice principles. Social justice is based on equity and fairness for all people. Social justice advocacy work is about addressing the fundamental rights of individuals experiencing suffering and distress due to misfortune and helplessness brought about by a lack of access, equity, rights or participation. One of the key examples of social justice advocacy in Australia is the journey towards true reconciliation with Indigenous Australians. (Advocacy Australia, 2023) Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 11 Ethical Frameworks Advocacy is about consumers and carers being valued as equal partners. It is about empowerment. If there is a code of ethics for consumers and carers, it is based on a platform of human rights. The DSS National Disability Advocacy Framework 2022-25 has important implications for consumer and carer advocacy and provides an officially sanctioned ethical framework within which advocacy can be conducted. This Framework acknowledges there are many different types of disability advocacy that including informal advocacy from families, friends and carers. The Framework identifies best practice standards for disability advocacy and commits Australian, state and territory governments to working with advocacy services toward improved outcomes and access for people with a disability. Review the framework here: National Disability Advocacy Framework 2023 - 2025 Toolkits Consumer, carers and professional advocates have developed a range of frameworks and toolkits to support individuals and professionals to understand and participate in the advocacy process. Here are some toolkits available to relevant to advocacy in the mental health sector. NDIS mental health toolkit LONG URL- https://www.imha.vic.gov.au/ndis-mental-health-toolkit • This toolkit is developed by the Victorian independent mental health advocacy designed to provide consumers with the information, skills and support to advocate for what they want under the National Disability Insurance Scheme (NDIS). • The toolkit has information and worksheets to help individuals know their rights and speak up for themselves, when applying for the National Disability Insurance Scheme (NDIS) or after they have already been accepted. Carer Advocacy Toolkit LONG URL- https://www.mentalhealthcarersnsw.org/resources/carer-advocacy-toolkit/ • The NSW Mental Health Commission funded Mental Health Carers NSW and BEING to develop a resource to support mental health carers and people with a lived experience of mental health conditions to have more influence in policy and advocacy in their local community. • The Carer Advocacy Toolkit is an online digital resource, designed for mental health carers, families and friends of people living with a mental health condition. • The purpose of the Toolkit is to inform carers about what advocacy is, and to empower carers to get involved in advocacy – whether that be individual or systemic advocacy. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 12 Youth mental health toolkit LONG URL-https://www.orygen.org.au/About/Orygen-Global/Files/Orygen-WEF-advocacy-toolkit • A global youth mental health advocacy toolkit a resource to drive action to address youth mental health. Developed by Orygen as part of the Global Youth Mental Health Partnership project with the World Economic Forum. • This toolkit is designed to give individuals the information and tools they need when advocating for youth mental health and provides a comprehensive view of the advocacy process. The toolkit also offers practical strategies for working with government and community leaders, generating public support, using the media and designing social media campaigns. Self-Advocacy toolkit LONG URL- https://mhfamiliesfriendstas.org.au/wp-content/uploads/2022/06/MAIN-S_1-min-1.pdf • Developed by Mental Health Families and Friends Tasmania, this resource aims to help get heard the voices of families and friends supporting a person living with mental ill health. • This Toolkit provides practical tools, tips and suggestions to help individuals build the confidence and knowledge to help them speak up about their needs. It provides information on rights, self-care, managing emotions and triggers during advocacy. It also covers key skills such as communication, organisation and boundaries during the advocacy process. Intersectional Advocacy Intersectionality is a way of examining how different forms of oppression overlap and interact to create complex experiences of discrimination. This can be by understanding how one person’s gender, race, ability, sexuality, age, class or immigration status makes their experience different to someone else’s. Intersectionality goes further than acknowledging that these different forms of oppression exist, and examines how, together, they create particular patterns of discrimination in a person’s life. Using an intersectional framework allows us to see how particular people are left out by policy, campaign and advocacy work, by understanding how certain services may not be accessible, or available to people who face intersecting oppression. (Amnesty International, 2021) "Intersectionality is just a metaphor for understanding the ways that multiple forms of inequality or disadvantage sometimes compound themselves, and they create obstacles that are not often understood within conventional ways of thinking" Kimberlé Crenshaw Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 13 Reflect Reflect: What parts of a person's identity could influence or intensify their mental health issues and needs? Possible answers: 1. Aboriginal and Torres Strait Islander Peoples living with mental health issues also face the intersection of colonisation and racism. Aboriginal women also face significantly higher rates of violence than non-Indigenous women. 2. LGBTQIA+ people with mental health issues are often excluded from services and can miss out on resources offered to their cisgender and heterosexual counterparts. 3. Older women are the fastest-growing group of homeless people in the country. If an older woman is also experiencing mental health issues, the lack of access to affordable housing further complicates things. Watch and reflect Watch: Advocacy at the Intersections - How To Advocate Together (6 mins) LONG URL: https://www.youtube.com/watch?v=5eKpKZudWM4 During the video, note down your answers to the following questions: 1. What are the parts of Mellem's identity that intersect? 2. What advocacy campaign is Mellem currently working on to address the intersectional needs of LGBTIQ+ people living with autism? Answers: 1. LGBTIQA+, neurodivergent, living with physical disability and mental illness. 2. Creating individualised resources for people living with autism that also identify as part of the LGBTIQ+ community. The resource will educate carers and healthcare workers on the complexities people with this intersectional identity face and serve as a tool to support individuals to self-advocate. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 14 Person-Centred Advocacy Person-centred advocacy has been defined as “a set of organised actions aimed at influencing public policies, societal attitudes, and socio-political processes that enable and empower the marginalised to speak for themselves” In contrast to traditional approaches to advocacy that seek to effect policy change on behalf of marginalised groups, person-centred advocacy aims to effect social transformation by ensuring individuals are active participants in the process, who have the capacity to negotiate for their rights themselves. (Rietbergen-McCracken, 2005). Person-centred advocacy relies on the following core values: EMPOWERMENT Person-centred advocacy seeks to go beyond the idea of just advocating on behalf of a disadvantaged person or group and instead aims to enable and empower the marginalised to speak for themselves. RIGHTS-BASED Person-centred advocacy believes people are not passive recipients of charity from the state or government. The government has political and moral responsibility to guarantee all human rights to all human beings; particularly the right to live with dignity. Hence person-centred advocacy feels it is our right to demand equitable social change and distributive justice. COMMUNICATION Person-centred advocacy uses community, collectivism, and communication throughout the advocacy process. Person-centred advocates use communication activities that involve learning from people, sharing with them, and inspiring and being inspired by them. PARTICIPATION Person-centred advocacy always upholds participation as a principle. Participation means sharing power, legitimacy, freedom, responsibilities, and accountability. Participation is both a principle and means to include as many people as possible in the process of social change. ASSISTED DECISION MAKING Person-centred advocacy aims to ensure individuals and groups are aware of all possible options and choices. While an advocate needs to be aware that they do not overload a client with information, they must also ensure they do not hold back information. INFORMED DECISION MAKING Person-centred advocacy endeavours to support individuals to make informed decisions during the advocacy process. An informed decision does not take an exhaustive amount of knowledge. To be able to make an informed decision a person needs to have some understanding of the requirements of a decision, the alternatives and the consequences. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 15 Types of Advocacy There are 6 main types of advocacy you might see in the mental health space. We will explore some of these in more detail later, but for now here is a quick summary. Self-Advocacy taking action to represent and advance your own interests; a self-advocate is a person who speaks up for themselves and defends their own rights. Peer Advocacy taking action to represent the rights and interests of someone other than yourself; whom you share a lived experience of the issue with. Individual Advocacy (informal) taking action to represent the rights and interests of a loved one or family member with mental health. Individual Advocacy (formal) taking action with the support of dedicated government or nongovernment agencies, trained in mental health advocacy work. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Legal Advocacy Systems Advocacy taking action with the support of attorneys and the legal or administrative systems to establish or protect legal rights. taking action to influence social, political, and economic systems to bring about change for groups of people Page 16 The process of standing alongside an individual or group who is experiencing disadvantage, and speaking out on their behalf can look very different. Let's explore some of these advocacy types in more detail: (Canberra Health Literacy Hub, 2020) Self-Advocacy Whether you are supporting a person with their advocacy needs or you need an advocate yourself, it is always important to start out with self-advocacy. This includes assessing your own or the individual's ability to self-advocate and encouraging this wherever possible. This is because self-advocacy: • builds important skills that help people to be less dependent on systems • encourages autonomy • builds confidence • can lead to more sustainable and successful outcomes. The health care system can be confusing and complicated, even for the people who work in it. When you don’t understand or can’t make choices, you can have poorer outcomes. Self-advocacy means taking an active role in managing your health or the health of someone you care for. Self-advocacy is the ability to speak-up for yourself and the things that are important to you. Some examples of self-advocacy at work are: • learning about your illness and the treatment options available, so you can make informed decisions • asking to see a different provider when you are unhappy • ensuring you have time to consider and make decisions • questioning whether more tests or procedures are necessary. Some ways that you can become a self-advocate are: We will explore these tips in more detail on the next page. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 17 Take Responsibility: Realising that you know yourself and your body better than anyone else, you can use information and resources – from people to the internet or the printed word – to help make decisions about your treatment that suit you and your priorities. Ask questions and Stay Safe: We sometimes read about major medical errors, but millions of “smaller” mistakes take place every day. Set Goals: When you have complex mental health issues, it can help to set one main treatment goal to work towards. For example, you could have a goal to manage your mental health symptoms as your first priority, then move on to another goal, such as addressing environmental factors. If you know what your medications are, what they are for, and how you are supposed to take them, you can help make sure that you keep taking them the right way by speaking up and asking questions. These can include being given the wrong medications, being given them at the wrong time, or acquiring infections in hospitals. In other words, you are choosing to manage your health in a way that suits your individual priorities or circumstances. Get involved The best way to improve the health services that you use is to have a say in how the services are run. You could be a consumer representative on a committee, a volunteer or a patient advocate. Work in Partnership: Self-advocacy means you are an active participant in your own healthcare, working in partnership with doctors, allied health professionals, even other patients. Give Feedback Health services value feedback, both good and bad. It helps them to know what they are doing well, what needs improving and what might be concerning for consumers. Seeing the relationship with your health care team as a partnership helps make you part of decision-making and the management of your diagnosis and treatment. Each service will have a different method for consumer feedback, but staff will be able to help you or you can check on their website. Learn: Learn about your medical condition(s) and look for information from a range of perspectives and sources. This can include: • recording symptoms and family histories, • talking with health care professionals and other patients, • using the Internet and libraries for researching relevant diseases and treatment options, and • keeping an up-to-date medical history. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Know your rights Everyone in Australia who is seeking or receiving health care has certain rights. You have a right to: Access – access to healthcare services that meet your needs Safety – receive safe and high-quality care Respect – be treated with dignity and respect Partnership – be included in decisions and choices about your care Information – be informed about services, treatment options and costs in a clear and open way Privacy – have your privacy respected and the information you provide kept confidential Feedback – comment on care and have your concerns addressed. Page 18 Individual Advocacy When it is appropriate to provide a person a greater level of support to achieve their advocacy goals this is called individual advocacy. Advocating with or on behalf of someone might include: • • • • Providing information about rights Assessing the situation and identifying key issues Identifying the available options for action Supporting the person in carrying out the chosen course of action. There are many services that provide individual advocacy in NSW. Some examples are: Disability Advocacy NSW LONG URL: https://www.da.org.au/ What do they do: • Provides free individual advocacy services for people with disability. • Offers tips and advice to people requiring advocacy The mental health advocacy service- Legal Aid LONG URL: https://www.legalaid.nsw.gov.au/publications/factsheets-and-resources/mental-healthadvocacy-service What do they do: • Can help Aboriginal and Torres Strait Islander people with mental health and guardianship law • Can help you support people who have to appear before the Mental Health Review Tribunal (‘the Tribunal’) or the Guardianship Division of the NSW • Provides support to those who have been kept in a hospital under the Mental Health Act . • Provides advice on financial management orders and community treatment orders First Peoples Disability Network LONG URL: https://fpdn.org.au/individual-advocacy/ What do they do: • Can link Aboriginal and Torres Strait Islander People with a National Disability Advocacy Provider in their local area. Anti-Discrimination NSW LONG URL: https://www.antidiscrimination.nsw.gov.au What do they do: • They can support people who have experienced discrimination, as long as it has occurred in an area protected by law, such as at work, in education, where goods and services are provided, where accommodation is provided or within registered clubs. • Anti-Discrimination New South Wales investigate complaints and provide a free, impartial and confidential dispute resolution process. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 19 Systems Advocacy There are many circumstances where advocacy needs extend beyond an individual's circumstances and require speaking up on behalf of entire groups at a systemic level. This includes • making formal submissions to government and Royal Commission enquiries • conducting formal and informal consultations with carers and consumer • directly working with Federal, State and/or Territory ministers, government departments, statutory organisations, community organisations, and businesses to advocate for change in legislation and policy. Here are 4 organisations who undertake systemic advocacy related to mental health. BEING – Mental Health Consumers BEING is the independent, NSW peak organisation speaking with and for people with lived/living experience of mental health issues and emotional distress. BEING works to ensure the voices of people with mental health issues are heard by decision makers, service providers, and the community. BEING works to achieve systemic change in the following ways: • • • • • • engaging in consumer consultation writing submissions and advising government and other organisations developing position statements and conducting issued-based campaigns providing Lived Experience representation on committees and expert reference groups creating resources for mental health consumers about their rights undertaking research on consumers service needs, best practice for mental health consumer participation and quality mental health services. To ensure your voice is included in BEING’s work: become a member and subscribe to the newsletter for opportunities to participate in consultations. Mental Health Carers NSW Mental Health Carers NSW (MHCN) works with and for mental health carers in NSW. MHCN represent the voices and Lived Experiences of carers to influence public and institutional policies and systems. The ways MHCN provides a voice for carers includes: • • • • • • • conducting research and developing policy advising government and sectors on the experiences of carers distributing information within the sector and community holding consultations with carers provide capacity building to organisations and community develop resources for carers. runs the carer connection helpline. To get involved in MHCN work you can become a member and subscribe to their newsletter to keep up with opportunities to get involved. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 20 Mental Health Australia Mental Health Australia is the peak, national non-government organisation representing and promoting the interests of the Australian mental health sector and committed to achieving better mental health for all Australians. Mental Health Australia aims to • • • • • promote mentally healthy communities educate Australians on mental health issues influence mental health reform so that government policies address all contemporary mental health issues conduct research on mental health issues carry out regular consultation to represent the best interests of members, partners and the community. To stay up to date with Mental Health Australia's work and find ways to get involved you can become a member and sign up to their newsletters. National Mental Health Consumer and Carer Forum The National Mental Health Consumer and Carer Forum (NMHCCF) is a combined national voice for mental health consumers and carers. NMHCCF members represent mental health consumers and carers on a large number of national bodies, including government committees and advisory groups, professional bodies and other consultative forums and events. Members use their lived experience, understanding of the mental health system and communication skills to advocate and promote the issues and concerns of consumers and carers. The NMHCCF has produced a number of publications on matters important to consumers and carers written from their perspective. To participate in NMHCCF’s research and advocacy sign up for their newsletter or check out their website for consultation opportunities. An example of systemic advocacy success in mental health Advocacy groups across NSW have continuously called for our mental health and social services to be truly centred on the people who use them and supportive of their individual journeys of recovery. These efforts resulted in the development of The Lived Experience Framework for NSW. The Lived Experience Framework is a part of the response to mental health advocates who have called to embed lived experience across the sector and system processes. It comprises of a language guide, vision, guiding principles, actions and implementation approach to embed lived experience across mental health and social services systems. Check the full framework out with the following QR Code: LONG URL: https://www.nswmentalhealthcommission.com.au/report/lived-experience-framework Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 21 Peer Advocacy As mentioned, the participation of consumers and families in advocacy organisations has resulted in a movement to embed lived experience across the mental health sector and with this, the emergence of Peer Workers has evolved. Being a peer advocate can be an extremely rewarding and empowering experience. Utilising their first-hand experiences of mental illness and the mental health system, Peer Advocates often possess unique insights and practical skills for operating within the system. Peer advocacy also focuses on empowerment by enabling peers to take up the advocacy challenge themselves and enjoy the rewards of self-advocacy. (Mental Health Branch, 1999) The first public resource endorsed by the Australian government with reference to Peer Advocacy was published in 1998 named "The Kit- a Guide to Advocacy We Choose to Do" The kit includes: What peer-advocacy is good for How to set up a mental health peer advocacy group Emphasises the value of lived experience advocates Focuses on using empowerment as a tool Encourages careful consideration of the peer advocacy relationship Peer Advocacy principles Correct Power Imbalances Advocacy activities must be directed towards correcting the imbalance of power in the mental health sector between consumer and carers and those with whom they deal (service providers, administrators and community members). Utilise Lived Experience The lived experiences of consumers should be recognised, valued and respected as they can contribute to improvement in the mental health sector. Knowledge, skills and training Self-empowerment can only be attained through an ongoing process of acquiring and using knowledge and skills. The effectiveness of any type of advocacy can only be increased through acquiring knowledge, clarifying attitudes and values and learning specific skills and strategies. Self-advocacy first While recognising the role of representatives and supportive advocacy in certain circumstances, self-advocacy is the most appropriate and empowering form of advocacy. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 22 Reflect Question: Based on what you have learnt about other types of advocacy available to mental health consumers, what would be the benefits of a peer advocate be vs traditional forms of advocacy? Consider: Peer Advocacy vs Human Rights Groups Peer Advocacy vs Family and Friends as Advocates Peer Advocacy vs Mental Health and Social Service Advocates Peer Advocacy vs Legal Self-Advocacy Peer Advocacy Vs... Peer Advocacy is especially important in the mental health field and complements other forms of advocacy in a significant way. It can also be considered more effective in some circumstances. The following is an excerpt from Georgiana Gheorghe's (2011) paper titled 'Peer advocacy: introducing a concept, exploring its benefits'. In this paper Georgiana explores the global evidence of peer advocacy theory and practice around the world on behalf of The Resource Centre for People with Mental Disability (Lativa, Northern Europe). Peer advocacy vs professional human rights groups Evidence exists that the methods applied by professional human rights advocates in the pursuit of consumers goals can be damaging and counterproductive. This is because rather than eliminate relations of power and domination over those whom they aim to benefit, they sometimes sustain them. Peer advocacy can correct this situation because it fights power imbalance while at the same time empowering both the peer advocate and consumer in a much more immediate way. Peer advocacy vs Family and friends as advocates The family and friends surrounding a person experiencing mental health distress can often fail to help and support a person due to conflicting interests and ideas. In such cases, a peer advocate would be independent and represent the wishes and views of a person with mental health distress without judgment and without putting forward their personal beliefs. Peer advocacy vs Mental health and social services advocates Health and social services professionals often represent historical trauma for mental health consumers and can be bound to and limited by systems and structures. A Peer advocate especially if they are independent of health and social service systems, can minimise the risk of re-traumatisation through their lived experience perspective. Peer advocacy vs Legal self-advocacy The effect of illness and medication can severely disadvantage consumers in putting a legal case forward. In addition, many consumers are also disadvantaged by their justifiable mistrust of institutions and are unfortunately often unheard and misunderstood. These characteristics can impact the consumers ability to put their wishes forward and their expectations of what can be achieved. In this case a Peer Advocate can help the consumer navigate complex systems and legal intricacies. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 23 The Peer Advocacy Relationship According to 'The Kit' the first step in the peer advocacy process is to think about the advocacy needs of the person you are choosing to advocate for. This begins with assessing your own Lived Experience in relation to the advocacy issue. Your well-being is your priority when undertaking Peer Advocacy and it is an important part of maintaining your effectiveness as an advocate. Before agreeing to be a Peer Advocate for someone, you should ask yourself the following questions. Question Reflection points 1. What is my function: am I a supporter or a representative of the person? How would you determine if you should be a supporter (standing beside them) or a representative (standing before them) in this peer-advocacy relationship? 2. What is motivating me to take on an advocacy role for this person/issue. What makes you interested in taking on an advocacy role for this person/issue. What is motivating you? 3. Do I feel comfortable undertaking Could engaging in a peer-advocacy relationship with this an advocacy role on this issue? person be detrimental to your wellbeing? If yes, how confident are you that you could manage your self-care during this peer-advocacy relationship? 4. What parts of my own lived experience are relevant to this issue? What feelings and thoughts does this issue bring up for you, relevant to your own lived experiences? 5. When are they different? In what ways are your lived experiences different to the persons situation? 6. How can I enable/empower the individual to become their own advocate? What strategies could you use to build the persons capacity to be their own advocate? Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 24 Activity 1- self-awareness reminder The following is a case study that explores the lived experiences of a consumer living with Bipolar. You will be asked to review the scenario which includes an experience of psychosis, resulting in employment dismissal. You will be asked to reflect on your own experiences in relation to this scenario, in order to prepare for undertaking Peer Advocacy. All activities are optional- if you would like to skip this activity click here. If you decide to complete the activity, please take care of your wellbeing and access the support lines provided on the Crisis Supports and information services page if required. Activity 1 instructions Review the case study below and the prepare to answer the reflection questions. Case Study Sarah is a 52-year-old woman who tells you she has a diagnosis of bipolar disorder. Sarah has managed her mental health for 12 years using a combination of medication, psychotherapeutic support groups, family and friends, and regular counselling. Sarah lost her job recently when she experienced an episode of mania, triggered by a medication change. At the time of this episode Sarah's ability to perform her work duties were affected for a short period of time. Sarah's manager has limited understanding of mental illness and recovery and called the police when she noticed Sarah was "acting strange towards the patients". Sarah was taken to the closest in-patient unit for support and treatment and spent 3 weeks off work. When Sarah was feeling better, she reached out to her manager to discuss her return to work and was told that her employment had been terminated due to "posing a risk to the patients and breaching the code of conduct". Since this occurred Sarah has been unemployed and had several psychiatric admissions to hospital. Sarah has contacted your peer-advocacy service to explore her rights and options for advocacy. Note: This scenario may invoke strong reactions in you. You might be asking yourself questions like: Why were the police called? What did she do that would justify this action? Is the manager allowed to do this? The case study does not give information about this on purpose, this is so you can avoid making assumptions about whether what the workplace did was justified or not. Effective advocacy is strategic, planned and evidence based. You will need to gather additional information about Sarah's situation before undertaking advocacy work but this first activity does not require you to know this information, yet. For this activity you are being asked to critically reflect on your own lived experience, reactions, and emotions in relation to this scenario. The purpose of this reflection is to help you decide whether you should agree to become Sarah's Peer Advocate. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 25 Answer the following questions on a separate piece of paper, or you can choose to type into the Activity Template provided in your e-learning course. Reflection points Response 1. How would you determine if you should be a supporter (standing beside Sarah) or a representative (stand before Sarah) in this peeradvocacy relationship? 2. What makes you interested in taking on an advocacy role for Sarah? What is motivating you? 3. Could engaging in peer-advocacy with Sarah be detrimental to your wellbeing? If yes, how confident are you that you could manage your self-care during this relationship? 4. What feelings and thoughts does Sarahs experience bring up for you, relevant to your own lived experiences? 5. In what ways are your lived experiences different to Sarah's situation? 6. What strategies could you use to build Sarah's capacity to be her own advocate? Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 26 After Activity 1: Reflect Reflection QuestionsWhat it was like to intentionally reflect on the situation before agreeing to be a peer-advocate What is the benefit in doing this? How can this make the peer-advocacy process more effective? Peer Advocacy is... Peer Advocacy is a powerful process that has been said to be characterised by the following: Sharing of experiences. The Scottish Independent Advocacy Alliance has emphasized that “peer advocacy is about individuals who share significant life experiences. The peer advocate and their advocacy partner may share age, gender, ethnicity, diagnosis or issues. Peer advocates use their own experiences to understand and emphasize with their advocacy partner” Minimise power imbalances. Peer Advocacy lessens the imbalance of power between the advocate and their advocacy partner, increasing self-awareness, confidence and assertiveness so that the person can speak for them. It enables people to gain access to information, explore and understand the options and to then express their views and wishes. Informal and realistic. It is a pragmatic and informal approach to peer advocacy that defines primarily who the advocates are rather than what they do. No theory or illustrative example of advocacy work can substitute people’s individual contact with other peer advocates and the power of lived experience. Similar to self-advocacy. Peer-advocacy is similar to self-advocacy in that it also puts emphasis on the autonomy of the individual. The term “peer” refers to the fact that the person advocating has himself/herself experienced similar difficulties in the past as consumer of mental health services. Empowering. Empowerment in the mental health context refers to the “level of choice, influence and control that users of mental health services can exercise over events in their lives. The key to empowerment is the removal of formal and informal barriers and the transformation of power relations between individuals, communities, services and governments. Empathy as a super tool. Empathy plays an important role in this form of advocacy and evidence suggests that where choice is available most people with mental distress would look for an advocate who matched them in character and experience. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 27 The Advocates Role In its simplest form an advocate's role would include the following: Focus on consumers views and wishes Research, access and provide all necessary information Attend meetings in a supportive role Assist the person in writing letters and lodging complaints Represent consumers where they cannot represent themselves Build the capacity, confidence and communication skills of the consumer Reflect Think: Why have we emphasised certain words in bold above? Answer: Because it is important to emphasise that in advocacy work, we are doing with not doing for. Encouraging self-advocacy should be the first approach always. We should only be stepping in when the consumer self-identifies as not being able to represent their own views. The Advocacy Process Once you have assessed your own well-being, acknowledged your emotions in the situation and agreed to take on advocacy, you must adequately prepare to take action. Preparing for advocacy work includes developing a plan, which involves the following key steps: 1. Identify the issue: Before you can take action, you need to understand exactly what the issue is that requires advocacy, this means identifying the core issue and analysing its roots and cause. This stage is called problem and issues analysis and makes up the most challenging part of advocacy planning. This will require asking questions about the situation, building relationships with people involved and gathering all the facts. Many causes and solutions may apply to the problem, so it is up to us to find the ones that seem most relevant. 2. Clarify the goals Effective advocacy has clear advocacy goals. Advocacy must be planned and aim to have outcomes that lead to change. At first clients may not know what they want, or they may actually want something that is not realistic or achievable. Have as many conversations as necessary to set some realistic goals with the person requiring advocacy. When developing advocacy goals, you need to be as specific as possible focusing on the changes you want to see that you believe will address your issue. (YWCA Australia, 2023) To check that your objectives meet your long-term goal ask yourself: o what are the things which need to change to achieve the outcome o what actions would cause that change? Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 28 For example: if the issue was "Universities are not doing enough to prevent sexual harassment". Your objectives might be something like: o All university staff must complete 20 hours of sexual harassment prevention training. o All universities must have a trauma-informed policy detailing how to investigate, respond to and resolve complaints of sexual harassment. o All universities will develop a Lived Experience Advisory Committee to consult with on ways to improve systems and processes. 3. Gather and Share Information Doing research and gathering information is a huge part of advocacy planning. Some consumers will only need support in knowing where to get information others may need you to collect the information on their behalf. Below are the types of things you might need to research, before taking action. o Human rights- Begin with a strong understanding of yours/the persons rights in regard to the issue. A good place to start is the Universal Declaration of Human Rights. You might also want to understand rights as they relate to the Australian health care system. The Australian Charter of Healthcare Rights outlines what consumers and those that support them can expect when receiving health care. o Legislation- Depending on your role, and circumstance you might need to find out more about things like legal powers, guardianship, privacy, the mental health act, Discrimination law and employment. o Policies and Procedures- If your advocacy involved holding a workplace, organisation or government body accountable it is important to learn as much about the formal policies and procedures they have in place, relevant to the issue. 4. Brainstorm the options Once you and the consumer have determined what the issue is, what the preferred outcome is, and the goals you wish to advocate for, you can start to look at the different advocacy activities available to you. The options will depend on the type of issue, who it involves, and what you are advocating for. Common activities include, but are not limited to: o Talking to the person or service directly o Writing a letter to the person or service o Developing resources and campaign materials o Organising a meeting to discuss the problem o Contacting the service’s complaints unit if they have one o Making a formal complaint o Media engagement o Developing training o approaching an external advocacy service for support o Lodging a complaint with an external body, For example the NSW Ombudsman, Human Rights Commission, Fair Work Commission. Remember: Don’t choose an activity just because it may have worked for others before, make sure that it is a strategic way of achieving your desired outcome. You must also remember that the advocacy actions you take should be decided by the group/person you are advocating with or on behalf of. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 29 When choosing advocacy activities first check whether they are realistic and achievable. Ask yourself: o Do you have the necessary capacity, resources or money for a particular activity? o Are the timeframes achievable or do you have multiple activities taking place at the same time? o Who will lead, support and contribute to the activities? Identifying who is responsible is really important for ensuring an activity happens. o Are you considering risks and the mitigating actions that might be necessary? 5. Assess the consumers capacity to self-advocate Where possible, you should always try to assess a person’s ability with them before involving others. You can start by asking the person questions to learn about their strengths, skills, and previous experiences. Depending on your relationship and knowledge of the consumer, you may have to get information from other people about their capacity to self-advocate. This may include their carers, family, workers or even other service providers. Review the following checklist describing the main areas of capacity you should aim to assess for yourself and consumers before carrying out your advocacy plan. Area of capacity Communication Problem solving Responsibility Things to consider Can the consumer communicate confidently and effectively? Will they be able to get their message across? Can the consumer think logically and objectively Are they able to be flexible, when required? Can the consumer be actively responsible for resolving the issue? Are they able to make a commitment to the plan? Organisation Can the consumer organise meetings and coordinate any activities with other people? Networking Does the consumer have access to, or knowledge of, people and organisations that may be able to assist? Does the consumer know how to develop a plan of action? Including Action planning and follow-up Conflict Management o what has to be done o who needs to do it and o how to review the plan. Does the consumer have skills in negotiation and mediation? Can the consumer discuss a situation with another person and come to agreed outcomes. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 30 Activity 2- self-awareness reminder On the following page you will be asked to revisit the "Sarah" case study. You will be asked to think about how you might develop an advocacy action plan for Sarah based on the advocacy process just described. All activities are optional- if you would like to skip this activity click here. If you decide to complete the activity, please take care of your wellbeing and access the support lines provided on the Crisis Supports and information services page if required. Activity 2 instructions Remind yourself of the case study below and prepare to answer the advocacy planning questions. Case Study Sarah is a 52-year-old woman who tells you she has a diagnosis of bipolar disorder. Sarah has managed her mental health for 12 years using a combination of medication, psychotherapeutic support groups, family and friends, and regular counselling. Sarah lost her job recently when she experienced an episode of mania, triggered by a medication change. At the time of this episode Sarah's ability to perform her work duties were affected for a short period of time. Sarah's manager has limited understanding of mental illness and recovery and called the police when she noticed Sarah was "acting strange towards the patients". Sarah was taken to the closest in-patient unit for support and treatment and spent 3 weeks off work. When Sarah was feeling better, she reached out to her manager to discuss her return to work and was told that her employment had been terminated due to "posing a risk to the patients and breaching the code of conduct". Since this occurred Sarah has been unemployed and had several psychiatric admissions to hospital. Sarah has contacted your peer-advocacy service to explore her rights and options for advocacy. Note: This is your chance to reflect on how you would go about gaining the additional information you might have been wishing you had access to when you first read this case study. For this activity you are being asked to critically reflect on the advocacy process and develop a simple advocacy plan. Since you cannot ask Sarah any of your questions there will be somethings you cannot make decisions on. This is ok, focus on what you do know and acknowledge there will be gaps in this plan without the assistance of Sarah. Answer the following questions on a separate piece of paper, or you can choose to type into the Activity Template provided in your e-learning course. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 31 Reflection points Response 1. Identify the issue: In your own words describe the issue as you understand it, recognising you do not have all the information, and that's ok. 2. Clarify the goals: What questions would you ask Sarah to clarify her goals for undertaking advocacy? What is one possible objective (outcome) for this situation? 3. Gather Information: What information do you need to collect about this situation? Consider: missing information in the case study, rights, legislation, and policies/procedures. 4. Brainstorm options: Which of the previously mentioned advocacy actions might be appropriate for this situation? 5. Assess capacity: Sarah could do all of the advocacy actions herself, or if she might request support from you. Self-advocacy is always our first approach. o Thinking about the 7 areas of capacity detailed on the next page, think of one question you could ask Sarah to assess her capacity in each of these areas? Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 32 Area of capacity Question you would ask Sarah to assess this area: Communication Can the consumer communicate confidently and effectively? Will they be able to get their message across? Problem solving Can the consumer think logically and objectively Are they able to be flexible, when required? Responsibility Can the consumer be actively responsible for resolving the issue? Are they able to make a commitment to the plan? Organisation Can the consumer organise meetings and coordinate any activities with other people? Networking Does the consumer have access to, or knowledge of, people and organisations that may be able to assist? Action planning and follow up Does the consumer know how to develop a plan of action? Including o what has to be done o who needs to do it and o how to review the plan. Conflict Management Does the consumer have skills in negotiation and mediation? Can the consumer discuss a situation with another person and come to agreed outcomes. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 33 After Activity 2: Possible Answers Identify the issue: o Workplace discrimination, potentially unfair dismissal, the impacts of stigma and negative attitudes about people with mental health issues. Clarify the goals o o o o What do you hope to gain out of this Sarah? What is the best-case scenario for you? What would you like to do about this situation? What would be an outcome that is not ideal for you? Gather information o o o o o What policies and procedures are related to employee dismissal at the organisation? What exactly happened on the day the police were called? Had anything like this occurred prior to this incident? What does the Fair Work Act say in regard to this situation? What advocacy organisations could we work with that have experience in this type of situation? Brainstorm options o o o o Organise a meeting to discuss the problem with the manager Contacting the HR Manager or Employee Union Approaching an external advocacy service for advice and support Lodging a complaint with an external body, for example Far Work Commission. Assess capacity to self-advocate o Communication: Have you ever had to speak up for yourself in the past? What was that like for you? o Problem Solving: Tell me about a time you have had to carry out a plan or idea that required you to overcome challenges and problems. o Responsibility: What other commitments do you currently have that take up your time and energy? o Organisation: Tell me about a time you had to plan and organise an activity, how did you keep yourself on task? o Networking: Who do you know of that could help in this situation? Have you done any research or reached out to anyone else yet? o Action planning and follow up: When you have carried out plans in the past how have you known if they were not working? What have you done to review the plan when it isn't working? o Conflict Management: Tell me about a time you had to deal with conflict and negotiate your needs with someone. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 34 Advocacy skills There are a number of key skills required to carry out effective advocacy. The Advocacy ToolKit (2007) produced by Disability Rights Wisconsin provides individuals with information and skill building exercises to develop and enhance self and peer advocacy skills. Effective advocacy, of any kind, requires building a solid strategy or plan and practicing skills to help you feel comfortable and confident in reaching your advocacy goals. We will explore some of these now. By understanding, practicing and using these skills, you will be better organised, prepared, and able to respond to unexpected things that come your way. Generally, you should start your advocacy using these informal techniques; however, there are times when starting with formal advocacy strategies are necessary. Preparation skills Set boundaries. Setting clear boundaries an being explicit from the start of the program for all of those involved is recommended for any advocacy relationship. • • • • • Keep the focus of the interaction on the person's needs (avoiding friendship) Make clear times when you are on duty and when you are not Support your own needs through supervision and debriefing Recognise the signs of burnout and compassion fatigue Don't share personal details like address, phone number (Western Australian Centre for Health Promotion Research, 2010) Be realistic. Recognise not all of your advocacy plans will succeed. You can overcome the fear of failure by firstly acknowledging that you might be unsuccessful. Recognise that not succeeding, despite your best efforts, is okay and happens to everyone. Take stock of your knowledge, skills and resources. There are many ways of undertaking advocacy. There is a sufficient range of advocacy activities for everyone to contribute. Different activities require different personal attributes. Give some thought to your own personal attributes to make sure that you are striking a reasonable balance between extending yourself and stressing yourself. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Take stock of your stress. Stress is a common human experience. At manageable levels it can be an important motivator to action. When our usual ways of coping are insufficient, stress may become a considerable burden. It can be harmful to you and to other people. It saps energy and creates distractions from other positive activities. The more you can know about what stresses you, how you react and how you cope, the more you can control it. Take stock of your fear and anger. Fear and anger are always present in advocacy. Your feelings are not the problem but ignoring them can become one. Everybody experiences these emotions. How much they show them is a matter of self-control. Getting in touch with your fear and anger can assist in overcoming them, in becoming less possessed and disempowered by them. Manage Fear and Anger. Managing fear in advocacy is mainly to do with selfappreciation and attention to goals. The more confident you are in yourself and what you are doing, the more you can achieve without your fears getting in the way. Free expression of anger can get in the way of achieving advocacy goals. Getting angry at someone usually causes the other person to respond with equal passive or aggressive force. The result is that nobody wins. But Holding in anger, not expressing it, is a poor idea. Consider finding ways to acknowledge and verbalise your anger in healthy ways. (Mental Health Branch, 1999) Page 35 Organisation skills Develop a plan. In Activity 2 you participated in a type of advocacy planning. There are multiple ways to plan your advocacy, but an advocacy action plan can be a great place to start. Review the example of an Informal Advocacy Plan Template, located at the end of this resource. This template can help you develop your action plan for a specific self-advocacy goal. Take Notes. Creating a paper trail means having in writing events and decisions which are important to your advocacy effort. Experience has shown that having a written record of what went on and when is crucial to building an agreement and substantiating your position. You should keep notes of all conversations (phone and in-person) that you have regarding the situation beginning with the initial contact. Make sure all documentation includes date, time, full names of persons involved, job titles, agency details and a description of what was discussed. (Disability Rights Wisconsin, 2007). Complete effective documentation. If there is a question about the accuracy of conversation, follow up with a letter to the party summarising your understanding of the conversation. Keep a copy of the letter for your documentation. Keep all letters and copies of information you receive from agencies and individuals. Do not make any marks on copies received from other parties because those parties may claim the documents were tampered with. Keep copies of all letters and information that you send out regarding the situation. Communication skills Active Listening. Active listening means that you take steps to find out the information that you need, rather than simply listening to what the other person says. The simplest form of active listening is to ask for clarification if you don’t understand something. Active listening requires that you restate a person’s position so that you both understand what the person is offering or requiring. For example:, “So what you’re saying is that I should contact the HR team and ask them to review my case?.” By restating the other person’s position, you can make sure that you are both on the same page. Written, print and multimedia. Effective advocacy communication involves more than just using words to convey a message. Successful campaigns often include print, multimedia and interactive content. Be creative with your communications channels – don’t be afraid to think outside the box. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Persuasion. In advocacy work your main objective is to influence decision makers, community groups, peak bodies, funders, and/or the media. To mobilise support for your cause it helps to create a sense of injustice – people are more likely to jump on board and support a cause that fights for the ‘right thing’. Of course, don’t forget to talk about the potential for positive change and suggested alternatives or solutions – the last thing you want is to be seen as overly negative without offering any real solutions. (Smerdon, 2015) Use effective storytelling. Lived experience storytelling are compelling because they engage the listeners and build familiarity and trust with them. It allows the audience to enter the story’s world and become more willing to understand. Maya Angelou famously said, “I’ve learned that people will forget what you said, what you did but will never forget how you made them feel.” And that is indeed the essence of storytelling. (Sharma, 2023) Page 36 Conflict Resolution Skills Negotiation. Learning to negotiate successfully is the centrepiece of self-advocacy. Negotiation is when two groups who disagree work together to resolve a problem. All of our preparations feed into the negotiation process. As with other advocacy skills, negotiation is a skill that can be learned through study and practice. Here are some pointers for getting what you want through negotiation: • • • • • • • • • • • • Lead with the strongest part of your argument Focus on the facts Focus on solutions and remedies not complaints Control your emotions Have in mind a minimum that you are willing to accept Acknowledge the other persons position Stick to your basic needs Point out weaknesses and liabilities' to the other person Ask for additional information Restate any actions agreed to Set a timeline for action Be prepared to walk out without resolving the issue. Assertiveness. Assertiveness is viewed as the open and appropriate expression of thoughts and feelings, with due regard to the rights of others. Being assertive means understanding your rights and sticking up for them without being aggressive. Learning to be assertive without raising your voice or being rude is a skill to be learned, and one that will make you a much more effective advocate. There are important distinctions between the two, (Lonczak, 2020) as highlighted in the table below: Assertive communication Aggressive communication Uses firm but gentle speech Uses loud or menacing speech Is in control and respectful Is out of control, demeaning or hurtful Uses a relaxed stance and facial expression Uses a rigid stance and tense facial expression Respects personal space Violates personal space Shows a calm affect Shows an agitated or emotional affect Reflects supportive behaviour Reflects competitive behaviour Is honest and forthright Is deceitful or manipulative Involves requests Involves demands Aims to express needs Aims to win Is respectful of rules Does not value rules Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 37 Assertive communication involves various verbal and nonverbal qualities. Here are nine examples from Pipas & Jaradat (2010) and Bishop (2013). • Direct eye contact shows that the speaker is strong and not intimidated. • An assertive stance or posture with the right balance of strength and casualness. For example, standing rigid may come across as aggressive, whereas slouching may be perceived as weak. • Tone of voice. A strong voice conveys assertiveness, but raising one’s voice shows aggression and is likely to be met with anger. • Facial expression. Expressions that are neither angry nor anxious are essential for sending the right message. • Timing. Assertive communication must be executed at the right time (e.g., making requests from one’s spouse in the middle of a dinner party is not likely to be well received). Nonthreatening, non-blaming language. For example, language such as “If you continue to do that, you will be sorry!” is threatening rather than assertive. • Clarity. For example, “Can you please not be that way?” is vague, while “Can you please not walk away when we’re talking?” more clearly conveys the speaker’s needs. • Positive language. For example, making a negative request (“Will you stop leaving your papers all over the house?”) is less effective than a positive request (“Here is a divider I’ve set up. Will you please place your papers here?”). • Language without criticism of oneself or others. For example, phrases such as “I know I’m overly sensitive, but could you please not use that word?” and “Didn’t anyone ever teach you any manners?” are critical rather than assertive. Everybody can learn to become more assertive by practicing each assertive action until it can be repeated even under stress. (Skills You Need, 2011) Some things to help you with this skill: • • • • • • • Do your research and be prepared with the facts Ask for clarification Practice active listening Write down what you want to say/make a script Rehearse what you're going to say in front a mirror. Take notice of your body language, facial expressions, and tone. Keep practicing until your responses are almost automatic One effective way to work on your assertiveness is to role-play advocacy situations with someone you trust and ask them to provide you with feedback. Mental Health Advocacy Learner Resource 01122023 © 2023 BEING Mental Health Consumers. Page 38 You have completed the Mental Health Advocacy e-learning course Please note- Your feedback is important to us. If you did not complete the feedback form at the end of your e-learning course, you can do so by clicking the following link/QR code. A list of resources used in the development of this learner resource can be found on the following page. Course Feedback Form Advocacy Australia. (2023). Social Justice. Retrieved from Advocacy Australia: https://advocacyaustralia.org.au/social-justice/ Amnesty International. (2021, December 1). Retrieved from Explainer: Why intersectionality is important for women's rights: https://www.amnesty.org.au/explainer-why-intersectionalityis-important-for-womens-rights/ Bishop, S. (2013). Develop your assertiveness. London, UK: Kogan Page Limited. Canberra Health Literacy Hub. (2020). Self-advocacy for Consumers. Retrieved from Canberra Health Literacy Hub: https://cbrhl.org.au/consumers-carers/communicating-with-aprovider/selfadvocacy/#:~:text=Shared%20decision%20making%20is%20a,in%20genuine%20shared%20 decision%20making. Department of Social Services. (2023). National Disability Advocacy Framework 2023 - 2025. Australias Disability Strategy 2021-2031. Department of Social Services. Disability Rights Wisconsin. (2007). Advocacy Tool Kit Skills and Strategies for Effective Self and Peer Advocacy. Retrieved from Disability Rights Wisconsin: https://www.brainline.org/sites/default/files/Advocacy%20Tool%20Kit_2007.pdf Gheorghe, G. (2011). Peer advocacy: introducing a concept, exploring its benefits. ZELDA Resource Centre for People with Mental Disability. Retrieved from https://zelda.org.lv/wpcontent/uploads/peer_advocacy_research1.pdf Hampton, K., Brown, A., Mawyer, E., Malcom, T., Timberlake, C., & Van, D. (2018). Speak up, Speak out and have your voice heard. VAHPERD Journal, 39(2), 16. Retrieved from Gale Academic OneFile, link.gale.com/apps/doc/A668714650/AONE?u=anon~4409a828&sid=googleScholar&xid=b3 a1b7d3 imha. (2023). NDIS mental health toolkit. independant mental health advocacy. Retrieved from https://www.imha.vic.gov.au/ndis-mental-health-toolkit International Mental Health Collaborating Network. (2013). Psychiatric Survivors Movement. Retrieved from International Mental Health Collaborating Network: https://imhcn.org/bibliography/history-of-mental-health/psychiatric-survivors-movement/ Lonczak, H. S. (2020). What Is Assertive Communication? 10 Real-Life Examples. Retrieved from PositivePsychology: https://positivepsychology.com/assertive-communication/ Mental Health Branch. (1999). The Kit: A guide to the advocacy we choose to do. Canberra: Commonwealth Department of Health and Family Service. Retrieved from https://hic.org.au/the-kit-a-guide-to-the-advocacy-we-choose-to-do/ Mental Health Carers NSW. (2023). Carer Advocacy Toolkit. Retrieved from https://www.mentalhealthcarersnsw.org/resources/carer-advocacy-toolkit/ Mental Health Commission. (2018). Lived Experience Framework. Retrieved from https://www.nswmentalhealthcommission.com.au/report/lived-experience-framework mental health families & friends Tasmania. (2022). Self-Advocacy Toolkit. Retrieved from https://mhfamiliesfriendstas.org.au/wp-content/uploads/2022/06/MAIN-S_1-min-1.pdf mind. (2018). Advocacy in mental health. Retrieved from mind: https://www.mind.org.uk/information-support/guides-to-support-andservices/advocacy/what-is-advocacy/ Orygen. (2020). A GLOBAL YOUTH MENTAL HEALTH ADVOCACY TOOLKIT. Retrieved from https://www.orygen.org.au/About/Orygen-Global/Files/Orygen-WEF-advocacy-toolkit Pipas, M., & Jaradat, M. (2010). Assertive communication skills. 12, 649–656. Rietbergen-McCracken, J. (2005). Tool: People Centred Advocacy. Retrieved from https://civicus.org/documents/toolkits/PGX_C_People%20Centered%20Advocacy.pdf Saha, G. (2021). Advocacy in mental health. Indian J Psychiatry, 523-526. doi:10.4103/indianjpsychiatry.indianjpsychiatry_901_21 Sharma, S. (2023). Storytelling for Advocacy: The Only Way You Get True Support. Retrieved from CallHub: https://callhub.io/blog/advocacy/storytelling-for-advocacy/ Skills You Need. (2011). Assertiveness - An Introduction. Retrieved from Skills You Need: https://www.skillsyouneed.com/ps/assertiveness.html Smerdon, X. (2015). Communications For Advocacy. Retrieved from PRObono Australia: https://probonoaustralia.com.au/news/2015/06/communications-for-advocacy/ Soken-Huberty, E. (2023). Advocacy 101: Types, Examples, and Principles. Retrieved from Human Rights Careers: https://www.humanrightscareers.com/issues/advocacy-types-examplesprinciples/ Western Australian Centre for Health Promotion Research. (2010). Clarifying relationship boundaries. Retrieved from My Peer Toolkit: https://mypeer.org.au/designimplementation/ethical-practice/boundary-management/clarifying-relationships/ YWCA Australia. (2023). 7-Step Advocacy Plan. Retrieved from YWCA Australia: https://www.ywca.org.au/news/7-step-advocacy-plan/ Advocacy Planning Template This informal Advocacy Plan template is adapted from "Teacher’s Guide, Freedom Self-Advocacy Curriculum published by the National Mental Health Consumers’ Self-Help Clearinghouse". (Disability Rights Wisconsin, 2007). Advocacy Action Plan- Part 1 What is the problem or issue? If there is more than one, focus on one at a time: What is your goal? What facts do you know? What additional facts or information might you need regarding this situation, such as laws, rules or policies? How can you go about gathering this information? Who are the decision-makers that you need to influence to solve this problem/issue? What are some possible solutions to this problem/issue (be specific)? What are some barriers to these solutions Pick one solution and discuss the strategies and tactics you will use to achieve this solution. Complete the information below to assist you in initiating your action plan: I will call/meet with/write to ______________________________ by the following date: _____________. If this person does not resolve the situation by the following date __________, then I will call/meet with/write to ________________________________________. Advocacy Action Plan- Part 2 Documentation that I will need: Other people who can help me: What I expect the other side to do: Strategies for what’s next: Debriefing: who will I call or how will I take care of myself following this Keep in mind that the strategy you use to obtain the advocacy goal may not be successful. It is helpful to think about what you will do if you don’t get what you want the first, second, or even third time around. If your plan does not work, you may need to review your strategy, what went wrong and alternative ways to resolve your concern. You may want to revisit some of the information-gathering questions listed above and consider asking yourself the following questions: Advocacy Action Plan- Part 3 What will I do if the strategy doesn’t work? What is the backup plan? What went wrong? Why didn't the strategy work?
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