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.
Research at Flinders University has examined current policies regarding the long-term palliative care needs for people with psychosocial disabilities and life-timing diagnoses. 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 by 2023 but a review led by Flinders University PHD Candidate Kathy Boschen in the College of Medicine and Public Health, working with Professor Sharon Lawn and Dr Caroline Phelan, has recorded participant experiences with disjointed and siloed systems within the NDIS and other systems.
The research shows that these negative experiences lead to overwhelmingly inequitable and bleak end-of-life experiences.
“The NDIS Act promises certainty that people living with disabilities will receive support during their lifetime; however, without a clear framework across government-funded systems, they’re not receiving the support they need,” says Ms Boschen.
“The evidence suggests that people with severe and persistent mental illness are not having a particularly great time with NDIS. There appear to be deficits in training in the NDIS, Mental Health and Palliative Care workforce around this cohort which need to be addressed.
“That’s why our review asks significant and complex policy and practice questions about the longer-term palliative care needs of people with psychosocial disabilities and life-limiting diagnoses.”
This review – published in the International Journal of Environmental Research and Public Health – shows NDIS participants with psychosocial disabilities most often receive support for house cleaning, gardening and shopping.
However, these supports are unavailable for most palliative patients under 65 years of age until the last weeks of their lives.
While participants in contact with palliative care clinicians described their experiences as positive, interviews conducted by Ms Boschen highlight that these clinicians work very long hours to navigate the NDIS and support their patients.
Presenting these findings at the 2023 National NDIS Mental Health Conference in Sydney this week, Ms Boschen explained that 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.”
“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 NDIS Workforce, so our goal is to provide important advocacy to ensure their needs are appropriately considered,” says Ms Boschen.
Senior co-author Professor Sharon Lawn says the current NDIS review must ensure that end-of-life frameworks are developed to provide effective supports in the system.
“With debate currently focused on entry pathways and the sustainability of the NDIS, no attention has so far been placed on the end-of-life needs of this highly marginalised population,” she says.
“It’s clear that Australia needs a comprehensive multi-system framework and should highlight deficits in training for the NDIS, Health and Mental Health workforces regarding end-of-life support for NDIS Participants with psychosocial and other disabilities moving forward.”
The review also advocates the need for government to drive investments which strengthen and sustain informal support networks so that NDIS participants can be well supported at the end of their lives.
“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,” says Ms Boschen.
NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review, by Kathy Boschen, Caroline Phelan and Sharon Lawn, is published in the International Journal of Environmental Research and Public Health. DOI: 10.3390/ijerph191610144.
Text by: Flinders University
