Governance | Leadership

Lived experience leadership is changing how systems work

Ritchelle Drilon
May 29, 2026

Lived experience leadership is often treated as consultation. It should be treated as expertise.

Across Australia, people with direct experience of social challenges are not only advising organisations. They are leading change, building new models, reshaping services and challenging systems that have failed communities for too long.

This matters for every organisation working in the social sector.

For years, institutions have asked people with lived experience to share their stories. Those stories have helped shape policy, research and service design. But too often, lived experience has been reduced to personal testimony. People are invited to speak about what happened to them, while decisions about power, funding and strategy remain elsewhere.

That approach has limits.

Lived experience leadership is broader and deeper than storytelling. It draws on personal experience, community knowledge, collective insight and hard-won understanding of how systems work in practice. It can reveal where services cause harm, where policies fail, and where institutions need to change.

The challenge is whether organisations are willing to be changed by it.

Morgan Cataldo, convenor of the On Our Own Terms project, says the shift must be from participation to genuine leadership.

“Real progress means more than simply inviting lived experience and community-based knowledge into the room — it means being accountable, acting on what’s heard and being willing to be changed by it,” she says.

That distinction is important. Participation can still leave power untouched. Leadership changes who sets priorities, who defines the problem and who decides what good outcomes look like.

For not-for-profit leaders, funders, researchers and service providers, this calls for a more honest approach. It is not enough to include lived experience after key decisions have already been made. It must shape the work from the beginning.

That means recognising lived experience leadership as a legitimate form of expertise. It also means resourcing it properly.

Lived experience leaders often carry hidden costs. They may be asked to revisit trauma, represent diverse communities, challenge powerful institutions and translate complex community knowledge into settings that were not designed for them. This labour can be personal, emotional and political.

When organisations rely on this expertise without proper support, authority or payment, they risk repeating the same harm they say they want to address.

Professor Kristy Muir, CEO of the Paul Ramsay Foundation, says the research highlights both the value of this expertise and the need to better support those who provide it.

“This report takes us behind the scenes to understand the personal costs of providing this unique form of expertise, as well as how we can support these leaders to enable positive and meaningful change for better outcomes,” she says.

Lived experience leadership cannot be symbolic. It must be embedded in governance, strategy, research, funding and service design.

This requires institutions to examine their own role in the systems they are trying to improve. Organisations may have good intentions and still create harm through their structures, language, timelines, funding models or decision-making processes. Lived experience leadership can help identify those patterns, but only if leaders are prepared to listen and act.

Cataldo says lived experience leadership is already driving meaningful change, but its full potential depends on institutional willingness.

“Our research shows that Lived Experience Leadership is already driving meaningful change in addressing the social challenges we face — and that its full potential can only be realised when institutions acknowledge their own capacity to cause harm, recognise the leadership capability these leaders already hold, and are willing to embrace and be shaped by it,” she says.

For the sector, this is not a minor practice improvement. It is a leadership challenge.

Organisations that take lived experience seriously need to ask harder questions. Who holds authority? Whose knowledge is trusted? Who is paid for their expertise? Who defines success? What happens when lived experience leaders challenge the organisation’s preferred direction?

These questions may be uncomfortable. They are also necessary.

Systems change requires more than better programs. It requires different relationships between institutions and communities. It requires humility from established organisations and real authority for those closest to the issues.

Lived experience leadership offers a pathway to more grounded, accountable and effective change. But only when it is recognised as leadership in its own right.

The future of social change will not be built by inviting lived experience to the margins of decision-making.

It will be built by sharing power with the people and communities who understand the system from the inside.