High cost of care pushes older Australians with MND toward early euthanasia

Glenn Rowan, diagnosed with degenerative motor neurone disease (MND) at age 71, faces a stark choice: deplete his savings to fund round-the-clock care or opt for an early death. He believes the prohibitive cost of managing the severe muscle-wasting disorder is pushing many Australians diagnosed with MND after age 65 towards considering euthanasia.

These individuals are ineligible for the National Disability Insurance Scheme (NDIS), which offers substantial support. Instead, they rely on the aged care system, which is not equipped for severe disabilities and provides a fraction of the necessary funding. "Unless someone's got a good bank account, they've got major problems," Rowan stated. "This will force people into premature euthanasia, which is one of the things I'm considering myself."

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Unless someone's got a good bank account, they've got major problems. This will force people into premature euthanasia, which is one of the things I'm considering myself.

Rowan's situation highlights a critical funding gap. While the NDIS can provide up to $400,000 or more for MND care, the highest Support at Home package under the aged care system, Level 8, offers approximately $78,200 annually, plus a small amount for home modifications. Rowan, now 78, is personally covering about $7,000 per week for disability support, a cost that is financially unsustainable.

He explained the profound impact of MND, stating, "The simple task of getting out of bed is impossible." With paralysis affecting his arms, legs, and neck, he is completely bedridden. The current funding is insufficient for 24/7 care, which he estimates costs at least $400,000 annually. The government recently announced priority access to funding for older MND patients, recognizing the disease's unique challenges, but the adequacy of this support remains a critical concern.

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The simple task of getting out of bed is impossible.