The $320,000 Gap: Living with MND on the Wrong Side of a Birthday
Glenn Rowan, 78, diagnosed with motor neurone disease (MND) in 2022, has reported paying about $7,000 per week for disability support out of pocket due to a critical eligibility gap. He was denied access to the National Disability Insurance Scheme (NDIS) simply because he was diagnosed after turning 65.
"He stated his care costs approximately $400,000 per year for 24/7 support."
The Funding Divide
Australians diagnosed with MND after 65 are supported through the aged care system, not the NDIS. This creates a stark disparity:
- Support at Home (Aged Care): The highest package (Level 8) offers up to $78,200 per year plus $15,000 in one-off funding.
- NDIS: A person with MND on the NDIS can access roughly $300,000 or more annually.
Mr. Rowan noted that the $320,000 funding gap may push people into premature euthanasia—an option he is currently considering.
Government Response
In response to the crisis, the federal government announced urgent priority access to Support at Home funding for people over 65 diagnosed with MND, aiming to deliver funding within 30 days.
A government spokesperson stated that "the NDIS and Support at Home are distinct programs with different legislation and funding."
Expert Concerns
Clare Sullivan, CEO of MND Australia, argued that the fast-tracked pathway does not address inadequate funding. She explained that the automated assessment tool used by the aged care system often categorizes MND patients at lower funding levels:
- Level 3 or 4 packages provide only about $30,000 per year—a fraction of what is needed.
Independent Senator David Pocock noted that the aged care system lacks flexibility for severe cases like MND, which require round-the-clock care.
Neurology Professor Dominic Rowe highlighted the arbitrary nature of the age cut-off:
"The median age of symptom onset is 64, so half my patients qualify for the NDIS ($300,000) and half do not (getting up to $80,000)."
The Human Cost
For Mr. Rowan, the math is simple and devastating: his care costs $400,000 per year. He is currently paying $7,000 per week out of pocket—a sum equivalent to roughly $364,000 annually—to cover the gap between what the system provides and what he actually needs to survive.
Without adequate funding, he said, the system may be forcing people toward a choice no one should have to make.