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Legislative Council - Fifty-Fifth Parliament, First Session (55-1)
2023-08-30 Daily Xml
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Palliative Care

The Hon. H.M. GIROLAMO (15:43): Today, I stand before you to address an urgent matter that demands our attention and action from both the state and federal governments. Our disability and health systems are meant to provide care and support to those in need. However, I recently encountered a distressing situation that highlights the flaws in our current systems.

A constituent from the Riverland, brought to my attention by the Hon. Nicola Centofanti, faced a dire situation. This gentleman, Mr James Mills, was battling a form of brain cancer, a condition that left him with severe vision impairment and excruciating pain, rendering him unable to walk. In this vulnerable state, his NDIS funding was abruptly discontinued due to his palliative status. As a result, Jim was no longer able to remain in the assisted living facility that he has resided in, where he was receiving exceptional care and support from the good people of All Areas Care and Support in the Riverland.

Our current system fails to recognise the critical importance of palliative care, particularly for those under the age of 65. Under the COAG principles and the NDIS support for participants rule, palliative care is excluded from coverage. Section 7.5 states that the NDIS will not provide support for this crucial aspect of care. This bureaucratic barrier has left Jim in a desperate situation, without access to the care he desperately needed.

Jim and his family have given me full permission to share his story here in the chamber today. The last few months of Jim's life were heartbreaking. At just 62 years of age, he found himself falling through the cracks of our existing support system. The absence of proper NDIS support and access to suitable palliative care services left him with two choices: admission to Loxton hospital or voluntary assisted dying. Tragically, he chose the latter. Having been approved for VAD, Jim Mills ended his life via VAD on 18 August 2023, as he could no longer endure the broken system.

Jim's plea to me was clear: continue to raise the issues with our broken system, and that is exactly what I am here to do. I am committed to fighting for better NDIS services in our regions, improve palliative care services and enhance supports for individuals under 65, who often slip through the cracks. It is a matter of basic human dignity that if you are palliative you deserve access to the right services, regardless of your age or your location.

Further exposing the shortcomings in our health infrastructure, in a small town like Loxton there is a lack of hospice or palliative care facilities outside of the hospital. Even for in-home services for individuals like Jim, at the age of 62 he did not qualify. So I took action and wrote to the state health minister, alongside my parliamentary colleagues, both state and federal.

Whilst I appreciate that, after extensive follow-up by the state and federal opposition, the NDIS did reverse the decision and funding was reissued, it was far too late for Jim. After 50 days of delay, he could not bear the thought of his support being pulled again. He left us, having shed light on the pressing need for comprehensive palliative care services and the urgent review of regional services. He also exposed the bureaucratic obstacle courses within the NDIS that must be resolved by the Albanese federal government.

Jim's story resonates with all of us. Every individual, regardless of their circumstances, deserves the right to dignity, comfort and quality of care during their most vulnerable moments. I pledge to continue fighting for individuals like Jim, so that they have access to health services and support when they need it most.

Jim has family and friends right across the Riverland who have been rallying for him, none more so than his partner, Sandrine, and mate, Steve, whose advocacy highlighted this issue to me and my colleagues. Let us remember Jim's name and honour his memory by working together to reform our systems and to ensure that no-one else has to face the choice that he did during the final days of his life.

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