Government Caps Aged-Care Funding for MND Patients Diagnosed After 65 but Adds Fast-Track Access

Glenn Rowan, diagnosed with motor neurone disease in 2022 at age 71, now pays roughly $7,000 per week for 24-hour care after both arms, legs and neck became paralysed. He is bedridden and ineligible for the National Disability Insurance Scheme because he was over 65 at diagnosis.

The federal government announced a fast-tracked pathway last week that gives people over 65 diagnosed with MND urgent priority access to Support at Home funding, with money to arrive within 30 days.

The highest package, Level 8, provides up to $78,200 a year for at-home care plus up to $15,000 for home modifications. NDIS participants with MND typically receive about $300,000 annually. People assessed through the aged care system are generally placed at Level 3 or Level 4, yielding about $30,000 a year, according to MND Australia chief executive Clare Sullivan.

Rowan said the gap forces many families into financial ruin. "It's impossible on $78,200 to fund a person 24/7," he stated. His request for voluntary assisted dying has been accepted. The median age at which MND symptoms appear is 64, Neurology professor Dominic Rowe said.

Half his patients qualify for the NDIS and half do not. "If you're 64 years, you get $300,000. If you're 65 years and one day, you get $80,000 in a Level 8 package," he said. Older Australians wait an average of 12 months for in-home support or an aged care place under the current system overhaul.

Sullivan noted the government's automated assessment tool does not always assign MND patients the highest funding level. Independent Senator David Pocock said the scheme lacks flexibility for rapid decline. "You shouldn't have to be a millionaire to deal with a debilitating disease," he stated.