NDIS support barriers impacting institutionalised people with disability

This report, called Access to the NDIS for people with psychosocial disability living in institutionalised settings: Exploring the details of effective advocacy, aimed to explore the complexities and processes involved with providing access to mainstream supports, including the NDIS.

The findings are a result of a research partnership between the University of Sydney and People with Disability Australia (PWDA), released as part of the PWDA Engage-In project.

Doctor Emma Tseris, Co-Author from the Sydney School of Education and Social Work, says there is an urgent need for ethical mental health care and advocacy for people with disability living in institutions.

“People with psychosocial disability living in settings such as prisons or psychiatric facilities are not empowered to access support services such as the NDIS,” says Dr Tseris.

“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.”

Resources are lacking inside institutions

Disability support inside institutional facilities has been a focus of recent conversations, including the Royal Commission into Violence, Abuse, Neglect & Exploitation of People with Disability.

Last month the Disability Royal Commission investigated ‘Conditions in detention in the criminal justice system’, revealing that people with disabilities, including a large percentage of Indigenous Australians, are not receiving necessary supports.

Dianne Lyons provided a witness statement from her time in prison as a person with muscular dystrophy, explaining that guards were not trained to lift her, most doorways could not fit her wheelchair, and her wheelchair was even removed from her cell from 6 pm to 7 am daily.

“At one stage, I thought they were trying to kill me because they thought I was a problem, because I spoke up for myself,” Ms Lyons said.

“I tried not to show fear but I was very afraid.”

She said she was also not allowed to access approved NDIS physiotherapy treatments while in prison, leading to a decline in her physical mobility.

Ms Lyons’ experiences seem to be reflected in the data from the report, which highlighted a range of barriers that people with psychosocial disabilities face to accessing the NDIS, including harmful institutional norms and a power imbalance between staff.

Time and resources are also incredibly limited, meaning people are often unable to initiate NDIS support or reach out to advocacy groups on their own.

Dr Karen Jordan, Co-Author from the Sydney School of Education and Social Work, says that it should not be assumed that people with psychosocial disability have the information they need to access meaningful resources.

“It is important for professionals to engage with people with psychosocial disability in ways that elevate their voices and that value their lived experience, rather than a ‘doing for’ approach,” Dr Jordan says.

“Institutions need to move past harmful gatekeeping practices that can deny access to information for both people with psychosocial disability and their advocates.

“When a person with psychosocial disability accesses meaningful resources, it means that they have been listened to and that their voice and lived experience has been validated and mattered.”

She says that validation will show their rights have been acknowledged and supported, providing more opportunities for participation and inclusion in the community.

Increased advocacy can create change

The report concluded that people with psychosocial disabilities are being denied their human rights because “opportunities for decision making, access [to the NDIS], and inclusion” are consistently impeded.

Dr Jordan believes that access to adequate accommodation that supports a person’s needs is an essential right, and NDIS access inside an institutional setting is critical.

“There are inadequate supports and advocacy available within institutional settings for people with psychosocial disability,” Dr Jordan says.

“Increasing access to resources and advocacy within these contexts is crucial and leads to better outcomes when transitioning from an institution to the community.”

Key recommendations from the report are focused on creating positive change, including:

• Challenging deficit-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

By approaching mental health with a “doing with” mindset, “intensive, coordinated and person-centred” support will help prepare people with psychosocial disabilities for a smooth transition back into their community, says Leonie Hazelton, PWDA Engage-In Project Manager.

“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 says.

“People with complex psychosocial disability are falling through the cracks in the system, and it’s not good enough.”