Lived experience leadership and Suicide Prevention Australia
UPDATE ON 14 SEPTEMBER 2023: The final motion has been submitted to Suicide Prevention Australia and includes an open letter explaining CriticLE’s position and feedback from our public consultation on 30 August 2023.
Presented here is a discussion paper, in draft, for comment by CriticLE collaborators, members of Suicide Prevention Australia, those with a lived experience and anyone with an interest in the topic.
A PDF version of this paper can be found here.
Express your support for the changes here.
In this paper, we are advocating for key changes within Suicide Prevention Australia’s constitution. These changes will work towards better inclusion of the voice of lived experience in decision making and change within the organisation’s activities. There are currently barriers within the governance of the organisation that limit the influence of lived experience perspectives and this limits the way that Suicide Prevention Australia can achieve their goals. The changes will also enable the organisation to fulfill it’s statement about the importance of lived experience:
Lived experience is central to everything we do at Suicide Prevention Australia. Working with people who have lived experience of suicide allows us to better represent our members’ views and experiences to government and other external groups.
People with lived experience are uniquely placed to inform how we can support people through a crisis.
Lived experience of suicide includes those who have experienced suicidal thoughts and behaviour, survived a suicide attempt, cared for someone through suicidal crisis or are bereaved by suicide.[1]
The paper will outline the value of the inclusion of lived experience in decision making and governance, explain the clauses in the constitution where lived experience decision making and governance is restricted. It also proposes a way forward for changing this.
Context
Effective boards in the not for profit space require diversity of opinion, experience and worldview. They need to also represent the views of those whom the organisation serves, and be a link to this community. Further, effective boards must live the values of the organisation and be a role model for the change they wish to see in their sector.
“An important third step is to acknowledge and accept that all too often the people who decide how funding is distributed to tackle local, national and even global social issues – be they funders, Chief Executive Officers or organisation board members – do not reflect the communities they serve and have rarely, if ever, lived or personally experienced the very social issues they seek to tackle. It’s here where the disconnect to the ‘realities’ of communities and experts by experience begin to appear. This disconnect is real and cannot be ignored.”
Baljeet Sandhu, The value of lived experience in social change[2]
This is especially relevant for boards of peak bodies, who are a representative voice for a particular sector and are made up of not only organisational members, but also individual members. Peak bodies harness the collective knowledge and experience of this membership base and put forward research, policy and advocacy on behalf of their members. Their activities and composition should be representative of their members and should be connected with all classes of membership and the communities where they work.
Suicide prevention
Within suicide prevention, the sector is increasingly embracing three forms of knowledge; that from research, practice and the lived experience. In this shift, there is a push to include lived experience in all aspects of operation and within places where decisions are made[3]. Accepted approaches to suicide prevention, such as the
Lifespan approach, advocate for this shift, as documented in the Lifespan Lived Experience Framework:
“A systematic approach to engage people with lived experience in all levels of decision-making. Involving people with lived experience will hold the organisations accountable to the needs of people they exist to service.” [4]
Some organisations ensure lived experience is embedded in these levels of decision making by designating specific roles where lived experience is a requirement. As with other efforts for equity, there is a need to ensure there are specific spaces for groups that are underrepresented or disadvantaged by systems. By preferencing people with a lived experience, we move to a state of equity, whereby people with lived experience gain access to decision making positions.
Additionally, designating positions to people with lived experience should require that people with a lived experience are accepted and valued as representatives of the broader lived experience movement. Some of CriticLE’s collaborators have argued that it is not sufficient to simply have a lived experience, one must be in a state of connection with and understanding of that experience and how it applies to suicide prevention. It has also been argued that the representative must be connected with the broader social lived experience movement. In the Mental Health Safety and Quality Engagement Guide[5], the National Mental Health Commission separates this out into three concepts, lived experience, lived experience advisors and lived experience leaders:
Lived experience is a broad term that refers to the personal perspectives on, and experiences of, being a consumer or carer, and how this becomes awareness and knowledge that can be communicated to others. The term covers people’s core experiences around mental health challenges and service use that may have occurred in the past or may be ongoing (sometimes called living experience).
Lived experience adviser:
Consumer adviser: A consumer with expertise in this area who participates in consultation or decision-making groups, and speaks and acts from a collective consumer perspective. A consumer adviser works to ensure that the rights, interests and needs of consumers are heard, recognised and responded to. A consumer adviser can be independent, or they can act on behalf of a consumer organisation. Sometimes they are called consumer advocates.
Carer adviser: A carer adviser plays a very similar role to that of a consumer adviser in contributing to decision- making groups, but speaks and acts from a carer perspective. Carer advisers work to ensure that the rights, interests and needs of carers are heard, recognised and responded to. Experienced carers understand the need to recognise consumer voices rather than speaking for them.
Lived experience leader: This is an umbrella term that includes people with lived experience who are recognised as leaders within the consumer and carer community in actively promoting consumer or carer perspectives, sharing with others and seeking change.
These roles include people who are active as advisers, consultants, representatives, community and peer educators, peer workers, advocates and activists. Leaders can be volunteers (e.g. representatives, some peer educators and other educators, advocates) or they can hold paid positions (e.g. peer workers, researchers, consumer or carer consultants and representatives, educators, advocates).
When it comes to appointments on boards, we need the lived experience leaders, not those who simply have a lived experience.
In summary, by designating lived experience positions in decision making spaces, we create an environment of equity that can work towards a place of social justice and we ensure that the perspectives of those whom decisions impact, are included in the decision making process.
“Lived experience representation aims to ensure the perspectives, priorities, interests and concerns of people accessing services are presented and protected. Representative roles ensure accountability and typically report back to the group they represent. “
Dr Louise Byrne, Queensland Mental Health Commission[6]
Suicide prevention and mental health lived experience in the board room
Organisations such as Suicide Prevention Australia place importance on lived experience:
“Lived experience is central to everything we do at Suicide Prevention Australia. Working with people who have lived experience of suicide allows us to better represent our members’ views and experiences to government and other external groups.
People with lived experience are uniquely placed to inform how we can support people through a crisis.” [7]
Despite this, there appears to be little representation by lived experience leaders in decision making roles within the organisation. Within Suicide Prevention Australia’s membership, however, there are organisations where lived experience leaders take a more active role in positions such as directorships. Some of the more prominent members are listed below:
Black Dog Institute: “The Board has strong Lived Experience and identification with the communities we serve and is a cornerstone of our approach to research and translation.” https://www.blackdoginstitute.org.au/about/who-we-are/board-governance/
Headspace: Has two youth advisors to the board who represent the voice of lived experience as it applies to the people Headspace support https://headspace.org.au/our-organisation/our-people/board/
Lived Experience Australia: All board members have lived experience of mental ill-health as consumers, carers or both. https://www.livedexperienceaustralia.com.au/our-people
Mind Australia: Has a published a Lived Experience Strategy whereby it is stated that lived experience has been openly acknowledged on the board since 1991, https://www.mindaustralia.org.au/sites/default/files/Mind_Lived_Experience_Strategy.pdf
Neami: “Directors are actively recruited from all sectors of society, including consumers, carers, service providers and community and private sector managers.” https://www.neaminational.org.au/about-us/leadership-and-governance/the-board-of-directors/
R U OK?: “R U OK?'s board contributes a diverse mix of skills and expertise including mental health, lived experience, advertising, media, legal, accounting” https://www.ruok.org.au/people-behind-ruok
SANE Australia: Many directors state drawing on their lived experience in the biographies. https://www.sane.org/about-sane/board-members-and-patrons
Whilst these organisations declare that their board members may have lived experience, there are no apparent systems in place that ensure representation on the board. Whilst a comprehensive review of the constitution of each of these organisations was not undertaken, a move towards systemic equity can be found in Clause 7 (d) of the Lived Experience Australia constitution:
7 (d) The Company will endeavour to seek membership and staff who identify as having a lived/ living experience of mental health ill-health, as a consumer, carer or family member. [8]
Suicide Prevention Australia’s Constitution
Suicide Prevention Australia, the peak body representing CriticLE and other suicide prevention organisations, have yet to make any public displays of prioritising lived experience leadership within the organisation. Further, there is a clause within the constitution that actively discriminates against people with lived experience and prevents them from making a key decision within the organisation, namely the appointment of directors. In this, people with lived experience have no say over the people who are elected to represent their view within Suicide Prevention Australia, the peak body supposed to represent those with an interest in suicide prevention.
These two main issues with the current constitution of Suicide Prevention Australia are outlined below.
Voting of associate members
The Constitution sets out the power for directors to determine classes of membership of SPA. The current structure of membership at SPA allows for people who are not representing an organisation to become Associate Members. This class of membership allows people with lived experience, who are passionate about suicide prevention, to obtain membership and have a say within the peak body who represents their interests. The rights of all classes of membership are equal except for one condition. There exists a clause in the Suicide Prevention Australia constitution that restricts the voting of directors of the company to organisational members only:
2.1 (b) Only Members which are organisations may be given the right to vote on the election for Directors under clause 5.1(a)(i) and on a resolution to remove a Director under clause 5.5(b).[9]
This results in associate members, the only class where people with lived experience can individually be members, being prevented from voting for directors they feel represent their needs. They are unable to select those they feel are equipped, to drive the strategic and financial direction of their representative body.
A better way…
CriticLE believe this clause is discriminatory and is counter to Suicide Prevention Australia’s statement that “lived experience is central to everything we do”. We argue that this clause needs to be removed and allow access to people with lived experience, and all associate members, to be able to vote for the election of people they want to represent their views as a director of Suicide Prevention Australia. We have proposed a motion for voting by members, all members, at the next AGM of Suicide Prevention Australia.
Designated lived experience leadership:
As outlined above, there is a clear benefit and social need to include voices of lived experience in the boardroom. Despite this, it is difficult for people with lived experience to be appointed to the board and take on increased levels of leadership within SPA. As with other movements of inclusion (such as gender representation), it is well documented that there are conscious and unconscious biases that impede the likelihood of election of people who are different in skills, life circumstance, cultural heritage, etc, than those who make up membership or currently serve as directors of a company.
On election of board members, the constitution states that between 2 and 5 directors are to be elected by members and a further number, up to 8, are appointed by the board in accordance with the procedure outlined in clause 5.3. This specifies that the board can appoint directors outside the company membership to the board where their “skills, experience and expertise that are deemed by the Board to be necessary and useful in the light of the Company’s strategic priorities and operational requirements.”
A better way…
In Compass 2025, SPA has a strategic pillar of “Lived experience of suicide is integral to our work”. It is within the spirit of clause 5.3 (a), the strategic direction of SPA and the direction of the broader suicide prevention sector (including government) to designate at least one of these independent member positions to a person with lived experience of suicide.
As we increase acceptability of “coming out” as a person with lived experience, it is likely that organisational member representative may state a lived experience however having a lived experience and representing the wider voice of people with lived experience are two very different things. As demonstrated, there is a difference between having a lived experience and being a lived experience leader. Therefore, CriticLE believes we need a designated Independent Director position for a person with lived experience, who is not a representative of a member organisation. This director should have knowledge of lived experience practice within suicide prevention, and be connected to the broader lived experience movement. This will ensure that the director will represent a broad voice of lived experience.
What next?
This paper has been developed for discussion by CriticLE stakeholders and the broader suicide prevention sector. Tell us what you think? We would love to know if you agree or disagree with what we are proposing or would make any specific changes to the proposal. The two motions for changing the constitution will be put to members at Suicide Prevention Australia, 21 days before the AGM for consideration but we believe this is not enough time to fully consider the decision. CriticLE would like to prompt discussion of these issues over the coming months to the AGM.
If you have any thoughts, feel free to comment and tag us on social media, leave a comment on our website or email it through to contact@criticle.com.au
[1] https://www.suicidepreventionaust.org/lived-experience/
[2] https://thelivedexperience.org/
[3] https://www.health.gov.au/resources/publications/national-suicide-prevention-adviser-final-advice?language=en
[4] https://www.blackdoginstitute.org.au/wp-content/uploads/2020/04/anu-lived-experience-framework.pdf
[5] https://www.mentalhealthcommission.gov.au/Lived-Experience/Consumer-and-Carers/Safety-and-quality-engagement-guidelines/Mental-Health-Safety-and-Quality-Engagement-Guide/Appendices/Appendix-1-Language-used-in-the-guide
[6] https://www.qmhc.qld.gov.au/sites/default/files/wp-content/uploads/2017/02/Promoting-Lived-Experience-Perspective_Discussion-paper.pdf
[7] https://www.suicidepreventionaust.org/lived-experience/
[8] https://acncpubfilesprodstorage.blob.core.windows.net/public/9782b78b-3aaf-e811-a95e-000d3ad24c60-7fa9ff92-962c-4a7c-ab73-da24fc2430ff-Governing%20Document-dd6694c5-ac67-ed11-9561-00224810056d-Constitution_2022_FINAL.pdf
[9] https://www.suicidepreventionaust.org/wp-content/uploads/2021/12/Constitution-approved-2014-12-11-1.pdf
