University of Sydney: Approaches to advocacy key to addressing access
A new research partnership between the University of Sydney and People with Disability Australia (PWDA) has found effective approaches to advocacy are key to overcoming significant barriers to NDIS access experienced by people with psychosocial disability living in institutional facilities.
Commissioned as part of PWDA’s Engage-In project, the study examined the experiences of people with psychosocial disability (mental health diagnoses) living in institutions such as prisons, psychiatric facilities and boarding houses, and the systemic challenges they face when attempting to access the NDIS.
Using a rights-based research process, the study also highlighted the urgent need for new, ethical, and effective advocacy approaches.
“People with psychosocial disability living in settings such as prisons or psychiatric facilities are not empowered to access support services such as the NDIS,” said co-author of the study, Dr Emma Tseris from the Sydney School of Education and Social Work.
“Many feel that while they are in institutional facilities, they have very limited access to information about what services and supports are available. If they do have access to such information, being in these facilities contributes many layers of complexity when trying to access that support.”
PWDA’s Engage-In Project Manager, Leonie Hazelton, said “intensive, coordinated and person-centred” support was a crucial component of long-term success outside of institutional settings for people with psychosocial disability.
“This means people need an appropriate NDIS plan they can rely on to smooth their transition into the community. The inside of a prison or hospital is one of the hardest places to organise it from.”
New approaches to advocacy essential
With the aim of clarifying the practices and processes that best facilitate access to the NDIS and other supports in institutional settings, the research study involved a series of action research meetings with two groups of participants, including PWDA staff, peer support workers, and lived experience representatives, as well as practitioners in the disability sector.
Though the study raised concerns about the barriers to NDIS access created by harmful institutional norms and the inherent power imbalance between people with psychosocial disability, disability advocates, and institutions, it also found effective approaches to advocacy have the potential to make a big difference.
Approaches to advocacy with the potential to effect change include:
Challenging defecit based assumptions about disability
Building genuine partnerships and leadership opportunities for people with lived experience of disability
Developing communities of practice that have a ‘doing with’ (rather than a ‘doing for’) approach.
“When you really listen to people with lived experience in these situations, that’s when you can see how much work there is to do to make the NDIS equally accessible to all people with disability,” Ms Hazelton said. “People with complex psychosocial disability are falling through the cracks in the system, and it’s not good enough.”