The Squeaky Wheel: Tokenism, Burnout, and the Fight for Family and Carer Lived Experience
The Squeakly Wheel report is more than research. It is a story of passion colliding with precarity, of voices invited in but left unheard, of roles created without protection or power. Family and Carer Lived Experience (LE) workers bring courage and insight to a mental health system that too often defaults to clinical dominance. They translate between families and clinicians, they carry the scars of caring into the room, and they refuse to let carers remain invisible. Yet, they are underpaid, casualised, and sometimes unpaid. They burn out under moral distress, silenced when they admit vulnerability, tokenised in structures that parade inclusion but rarely deliver it. The report’s findings are a warning: without reform, this workforce will collapse under the weight of exploitation. Using IDAR and I-IDEAS, we can name the problem, disrupt it, amplify lived experience, and rebuild sustainable, equitable roles. Anything less is decoration — and families deserve more.
Passion Doesn’t Pay the Bills
Everywhere in the Squeakly Wheel study, passion radiates. Family and Carer LE workers spoke about why they came into the role: to make sure families are seen, to stop carers from being invisible, to bring humanity into clinical spaces that can feel cold and transactional. They believe in what they do.
But passion is not a substitute for pay. Passion does not fund superannuation. Passion does not protect against burnout or provide career pathways.
Many workers are casual, part-time, or volunteer. Carer Representatives are often asked to share expertise without remuneration at all. Most are women. Many juggle ongoing care responsibilities of their own. For culturally and linguistically diverse carers, or carers with disabilities themselves, the disadvantage compounds.
This is not an isolated problem. It mirrors the undervaluation of women’s work across the economy. The caring labour that keeps society running is too often dismissed as “love” or “passion” — and that dismissal slides into exploitation.
Burnout and Moral Distress
The toll is heavy.
Workers described exhaustion, considering leaving, and struggling with moral distress: watching families being judged or sidelined by services, knowing that burnout or crisis was being misinterpreted as “failure to care.” For those who had lived through this personally, the harm was sharp.
One worker admitted:
“If you admit to being triggered, it can be used against you — that you’re not up to the job.”
Instead of being supported, vulnerability became a liability. Reflective supervision was absent or inconsistent. Peer support, where it existed, was fragile. The very qualities that make Family and Carer LE roles powerful — empathy, openness, honesty — were being weaponised against workers.
Burnout is not a personal weakness. It is a structural signal. It tells us the system is failing its workforce.
Valued in Name, Excluded in Practice
Perhaps the starkest contradiction is this: 61.7% of respondents said their role was valued in their organisation. Yet many described being misunderstood, mistrusted, and excluded.
Some were mistaken for social workers or crisis staff. Others were asked to take on duties outside their role with no recognition. Many were invited into meetings, but not listened to.
This is tokenism in pure form: recognition without resourcing, inclusion without influence.
As one participant put it:
“No one seems to know what the carer lived experience role is, and it seems to be constantly in development.”
This is not just confusion. It is a failure of responsibility. Without frameworks, scopes of practice, and clarity, workers are left unprotected.
Unsafe in Safe Spaces
Irony cuts deep here. These roles exist to bring safety and inclusion to mental health services — yet workers themselves reported unsafe workplaces.
Safety meant recognition and respect. Instead, some found stigma and judgement. Admitting distress risked retaliation. Peer spaces were under-resourced. Supervisors often lacked lived experience themselves, leaving reflective support out of reach.
Workplaces designed to heal ended up replicating harm.
The Tokenism Index
The Squeakly Wheel findings show tokenism layered across every level:
This is not accidental. It is systemic. And systemic tokenism demands systemic reform.
How IDAR Points the Way
Identify: We must call out the precarity, exploitation, and unsafe practices. Recognition in name is not enough. An audit of roles, contracts, pay, and safety is the first step.
Disrupt: Tokenism thrives in silence. Organisations must freeze role creep, stop unpaid “representation,” and enforce protections against retaliation when staff disclose vulnerability.
Amplify: Family and Carer LE voices must not only be at the table but must shape outcomes. This means reserved agenda space, co-design authority, and visible decision changes.
Reform: Secure contracts. Fair pay. Superannuation. Career pathways. Mandatory reflective supervision. Statewide networks. Research that proves impact. Reform is about embedding Family and Carer LE as a profession, not a passion project.
How I-IDEAS Demands More
Intersectionality. The report noted, but did not deeply explore, how culture, gender, disability, and regional location intersect. Reforms must face these differences directly. CALD carers, First Nations carers, carers with disabilities of their own — their needs and voices must shape role design.
Inclusion is not an invitation. It is influence. LE workers must hold equal authority in governance, policy, and service design.
Diversity Recruitment must reflect the communities served. A workforce that does not mirror family and carer diversity will reproduce inequity.
Equity Pay equity is urgent. Remuneration must match responsibility. Exploiting “passion” is exploitation, plain and simple.
Accessibility Training, supervision, and networks must be accessible to rural and remote staff, not just metro centres. Technology and funded travel are part of accessibility.
Sustainability Short-term projects won’t build a workforce. Multi-year funding, industrial recognition, and research investment are the foundation of sustainability.
Beyond Decoration
The danger of tokenism is that it looks like inclusion. A Carer Representative in a meeting, a paragraph in a report, a photo in a brochure — and the box is ticked. But families remain unheard, carers remain invisible, and workers are left isolated and exploited.
Decoration is not co-design. Decoration is not equity. Decoration is not recovery.
The squeaky wheel metaphor matters here. Carers and their representatives should not have to squeak endlessly to be heard. Their voices should be built into the structure, resourced and respected.
Why This Matters
This is not a niche issue. It cuts to the heart of whether mental health services in Australia are genuinely family-inclusive and recovery-oriented. Without Family and Carer LE workers, families navigate alone, carers burn out unseen, and clinical voices drown out relational recovery.
Every departure from the workforce is one less advocate for carers, one less bridge between families and clinicians, one less person able to hold the system to account.
This is about justice. It is about dignity. It is about building a mental health system that works.
The Call to Action
Governments must secure funding and embed lived experience roles into service standards. Organisations must stop hiding behind “valuing” and start paying, protecting, and promoting LE workers. Clinicians must treat LE colleagues as equals, not as guests. Communities must amplify, not just invite, their voices.
And we, as a sector, must refuse to accept tokenism as good enough.
Because families deserve more. Carers deserve more. And Family/Carer LE workers deserve more than applause. They deserve contracts, careers, and co-equal respect.
Final Word
The Squeakly Wheel report is a warning bell. A workforce held together by passion alone cannot last. If we want family-inclusive mental health care, we must stop treating lived experience as decoration and start treating it as indispensable expertise.
The squeaky wheel doesn’t just need oil. It needs a system rebuilt to carry it. Stronger. Safer. Fairer. Sustainable.