Why older Australians with MND are considering early euthanasia

Lead

Australians diagnosed with motor neurone disease (MND) after the age of 65 are ineligible for the National Disability Insurance Scheme (NDIS) and instead receive support through the aged care system, a gap that can force them into financial crisis and, for some, consideration of early euthanasia. ABC Australia has spoken to two families affected by the issue, highlighting the high costs of care and the limitations of the current support framework.

Glenn Rowan, a 78-year-old from Newcastle, was diagnosed with MND in 2022 at the age of 71. Because of his age, he cannot access the NDIS, which provides priority access for many people with MND given the average life expectancy of about 24 months after diagnosis. Instead, he relies on My Aged Care, a federal program that offers significantly less funding. The highest Support at Home package at Level 8 provides up to $78,200 for at-home care, plus an option of up to $15,000 in one-off funding for home modifications. By contrast, people with MND who are on the NDIS can receive around $300,000 or more. Mr Rowan told the ABC he is paying about $7,000 a week out of his own pocket for disability support. "Unless someone's got a good bank account, they've got major problems," he said. "This will force people into premature euthanasia, which is one of the things I'm considering myself."

Coverage Comparison

The two ABC Australia reports approach the topic from different but complementary angles. One focuses on the personal struggle of Mr Rowan, emphasising the financial burden and the emotional toll, while the other examines the systemic flaws, particularly the introduction of an automated assessment tool that has denied at least one man with late-stage MND the highest level of funding. Both reports quote those directly affected—patients and their carers—as well as a shadow minister criticising the system.

Mr Rowan's story is framed around the difficult choice he faces between spending his savings on care or ending his life prematurely. The report notes that his situation is not unique; the aged care system, designed for the elderly rather than those with severe disabilities, offers a fraction of the funding available through the NDIS.

The second report centres on Graham Crossan, an 80-year-old Melburnian with late-stage MND, and his wife Gaynor, who is his primary and often only carer. Because he is over 65, he is also excluded from the NDIS and receives funding through My Aged Care. Last November, the federal government introduced the Integrated Assessment Tool (IAT), an algorithm to determine aged care support levels. The Crossans expected Mr Crossan to receive the highest level of care, but the algorithm deemed him ineligible for higher funding, and the decision could not be overridden by a human. The couple appealed, submitting a new report from a senior occupational therapist specialising in progressive neurological diseases, but the Department of Aged Care rejected the review last month. "They declined our request for review, they felt the initial assessment was correct," Gaynor said. She described her husband's condition: "He uses a [ventilator] between 22 and 23 hours a day … he will die if that ventilator malfunctions or is not being applied in a suitable way. It needs at least two people to lift him. He cannot support himself."

Key Claims

• Glenn Rowan, diagnosed with MND at age 71, is ineligible for the NDIS due to his age and is supported through the aged care system, which offers a fraction of the funding available through the NDIS (as reported by ABC Australia).
• The highest Support at Home package (Level 8) provides up to $78,200 for at-home care plus up to $15,000 in one-off funding, compared to roughly $300,000 or more for people with MND on the NDIS (as reported by ABC Australia).
• The federal government has announced urgent priority access to funding under the Support at Home program for people over 65 diagnosed with MND (as reported by ABC Australia).
• The government's automated assessment tool, the IAT algorithm, does not necessarily categorise people with MND at the highest funding level, and its results cannot be overridden by humans (as reported by ABC Australia).
• Graham Crossan, 80, with late-stage MND, was deemed ineligible for higher funding by the algorithm despite his severe needs; his appeal was declined (as reported by ABC Australia).
• The Department of Health, Disability and Ageing received 1,117 requests for review from November 1 last year to March 31 this year (as reported by ABC Australia).
• Shadow Minister for Aged Care Anne Ruston plans to introduce legislation into the Senate to allow for human override when the computer system produces an outcome that the assessor believes does not accurately reflect the individual's care needs (as reported by ABC Australia).

Perspectives

The report includes viewpoints from those affected and from a political figure, though no government or departmental response is present in the material.

• Patients and carers: Glenn Rowan describes the financial strain as forcing people into "premature euthanasia," a choice he himself is considering. Gaynor Crossan expresses frustration and bewilderment at the algorithm's decision, asking, "I don't understand what else would be needed for them to grant a review."

• Federal MP Monique Ryan: The member for Kooyong described the Crossans' case as the worst example she had seen of what she called "Robo Aged Care."

• Shadow Minister for Aged Care Anne Ruston: She advocates for legislative change to allow human override of the algorithm's decisions, arguing the computer system may not accurately assess individual care needs.