Advocating for Change: Exploring how advocacy, participatory research, and systemic change can pave the way to the elimination of restrictive practices.
Tuesday 10 December
Restrictive practices have long been a concern within the disability community, leading to harm and violating the autonomy and dignity of people with disability. This harm isn’t theoretical—it’s a lived reality for many, including Deputy CEO Megan Spindler-Smith.
From an advocacy perspective, eliminating restrictive practices requires consistent effort and the empowerment of people with disability as leaders and co-designers of the research that drives systemic change.
“Restrictive practice’ means any practice or intervention that has the effect of restricting the rights or freedom of movement of a person with disability.”
Restrictive practices are often used in a number of ways against people with disability – in particular those with psycho-social disability. As demonstrated in an article from The Australian on Friday 6 December – Mental health crisis: neglected schizophrenic patients call for change .
Before her 18th birthday, Billie, who wishes to use a pseudonym to protect her privacy, had been admitted to several hospitals as an involuntary patient more than 20 times. She was a competitive and talented water polo player in high school but in the years she should have been planning a bright future, she lost it all. She spent about 1000 days in youth public hospital psychiatric wards.
They were hours, days, weeks and months characterised sometimes by compassion and care but more often than not by fear and degrading treatment. If Billie had accessed the healthcare system with a broken leg, her treatment would have been considered appalling – a treatment no patient experiencing any other kind of ill-health would encounter. The experience has left Billie with a crippling fear of the public health system but she also has a staunch determination to make it better for others. It’s the reason she’s sharing her story.
Billie recalls being put in seclusion for as long as 24 hours. Mental health wards in Australia have small, purpose-built rooms within the facility to lock patients in when they are in crisis. It’s supposed to keep them safe, but in Billie’s case it was her prison. She says the room had nothing more than a blue mattress on the floor, with no bedding and no bathroom.
Read more: Mental health crisis: neglected schizophrenic patients call for change | The Australian or Schizophrenia in Australia: seclusion, restraint and degrading treatment (please note the full articles can only be accessed via a paywall)
The conditions described are a form of restrictive practice, and while there has been in a reduction in their usage in Australian hospitals, they do still occur.
Understanding What’s Missing
To create a clear pathway to eliminating restrictive practices, systemic advocacy must first address several critical gaps.
Knowledge and awareness
For policymakers, practitioners, support networks, and people with disability, understanding what restrictive practices entail is essential. Recognising these practices as violence that violates autonomy and dignity is the first step. These actions often occur without the consent or full understanding of those who are affected. Awareness is not possible without the right data and monitoring, and where does the responsibility lie? Should this fall under the Human Rights Commission?
Research on systemic drivers
Research must focus on identifying the systemic factors enabling restrictive practices. The lack of consistency across Australia in definitions and standards creates confusion and limits the effectiveness of advocacy efforts. A consistent framework is vital to safeguard rights and ensure impactful advocacy.
Disability-led knowledge creation
Knowledge must come from the perspectives of people with disability. Research designed and driven by our lived experiences is essential to creating meaningful change.
Empowerment through co-designed and co-led research
Empowering people with disability starts with redefining safety from our own perspective. Feeling secure, respected, and free from fear is a fundamental human right. Restrictive practices that limit freedom, cause trauma, or dehumanise must be eliminated.
Codesigned research is key to systemic advocacy. This involves people with disability leading and shaping the research that prioritises supported decision-making, individual advocacy, and culturally safe, trauma-informed approaches. However, significant barriers remain, including:
- Inaccessibility in research design.
- Ethical restrictions that exclude people with disability from participating.
Co-designed research ensures that findings are actionable and solutions-focused, rather than simply measuring impacts or prevalence. This approach also builds resources to empower self-advocacy and systemic change.
The power of co-led research
Disability-led research goes beyond quantifying experiences. It centres on the lived realities of people with disability, ensuring that solutions are co-created with government decision-makers.
Research priorities must include:
- Understanding the systemic drivers of restrictive practices.
- Developing trauma-informed and person-centred approaches.
- Creating tools for supported decision-making and rights awareness.
Flexibility is also critical—there is no one-size-fits-all solution. A truly person-centred approach acknowledges the diverse needs and experiences of people with disability.
Moving forward: collaboration and action
To eliminate restrictive practices, we must look at these questions:
- How can we ensure research centres the voices of people with disability?
- What barriers to participation can be dismantled to empower leadership?
The way forward includes:
- Opening pathways for people with disability to lead and co-create research.
- Implementing consistent, Australia-wide definitions and standards.
- Embedding lived experiences into advocacy, tools, and decision-making frameworks.
Together, we can build a future where dignity, autonomy, and freedom from restrictive practices are not just ideals but lived realities for people with disability. By fostering collaboration, prioritising participatory research, and taking decisive action, systemic change is within reach.
Note: This blog was adapted from a speech given by Deputy CEO Megan Spindler-Smith at the Evidence to Action: Exploring the Evidence to Enable the Elimination of Restrictive Practices in Australia event.
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