Poor end-of-life support for Australians with severe and persistent mental illnesses has them falling through gaps in the NDIS and other service systems, according to new research from Flinders University.

The results show that government failures to ‘connect-the-dots’ in these systems mean that recipients are effectively caught between policies that fail to address their needs.

The NDIS is expected to support more than one million Australians this year, but the university review has recorded participant experiences with disjointed and siloed systems within the NDIS and other systems, that lead to inequitable and bleak end-of-life experiences.

“The evidence suggests that people with severe and persistent mental illness are not having a particularly great time with the NDIS,” research lead Kathy Boschen said. There appear to be deficits in training in the NDIS, Mental Health and Palliative Care workforce around this cohort which need to be addressed.”

The review also revealed that while NDIS participants with psychosocial disabilities most often receive support for house cleaning, gardening and shopping, these supports are unavailable for most palliative patients under 65 years of age until the last weeks of their lives.

More than 100,000 people with psychosocial disabilities will likely need support through the NDIS in coming years and this growing cohort will continue to deal with policy failings if there is not systemic change, Boschen said.

“The Australian Commission on Safety and Quality in Healthcare is currently updating the National Consensus Statement, yet the draft consultation did not include any comment regarding NDIS participants, NDIS providers or the workforce, so our goal is to provide important advocacy to ensure their needs are appropriately considered.

“However, there appears to be no future planning or consideration that NDIS participants will die, and many will require palliative and end-of-life care. We’ve been looking for a framework and none exists,” Boschen said.

The review findings were presented at the 2023 National NDIS Mental Health Conference in Sydney recently.