Media Release

Left behind twice: Older Australians deserve equal support

Published: 1 November 2025

MND Australia is calling for urgent action to end age-based discrimination in care funding for people diagnosed with motor neurone disease (MND).

MND Australia welcomes the additional funding announced in the Aged Care updates coming into effect on 1 November. The new investments, including the extra funds available in the Support at Home program, will provide a more generous funding package, including greater access to assistive technology, home modifications, and essential supports for older people living with MND and their carers.

However, every year, hundreds of Australians are diagnosed with MND after turning 65, but instead of receiving the comprehensive and flexible care available under the National Disability Insurance Scheme (NDIS), they are diverted into an aged care system never designed for rapidly progressing, complex neurological conditions.

The result: they are left behind twice, first by a disease that moves faster than any bureaucracy and again by a system that values age over need.

Under the NDIS, a person living with MND can access an average of $302,000 in annual support. In stark contrast, those diagnosed after 65 are limited to a maximum of $108,000 under the new Support at Home program, leaving a funding gap of nearly $200,000 every year.

“This is an invisible crisis hiding in plain sight,” said Clare Sullivan, Chief Executive Officer of MND Australia.

“People living with MND aged 65 and over are battling a terminal condition that steals movement, speech and independence, but they are also forced to fight a system that decides their care based not on urgency or need, but on the year they were born.”

Sullivan said this inequity is leaving older Australians, their carers and families to shoulder enormous physical, emotional and financial burdens.

“The cost of essential equipment like communication devices, wheelchairs, or breathing support can exceed $200,000 across the course of the disease,” she said. “Without equitable funding, many simply go without.”

A call for urgent reform

In October, a Senate inquiry into aged care delivery sounded the alarm on this widening inequity, echoing MND Australia’s long-held concerns. The Committee’s report called for equity to be considered between the NDIS and aged care supports including improved transparency, specialist assessments and an end to the rationing of home care packages, but MND Australia says the government must go further.

“We welcome the report’s findings, but what’s needed now is structural reform that ensures funding equity between the NDIS and Aged Care,” said Sullivan.

“That means a fast-track pathway for people diagnosed with MND, access to specialist assessors and a nationally consistent funding model that reflects the real cost of living with this disease.”

Behind these numbers are real people, partners suddenly thrust into full-time caring roles, families drowning in paperwork instead of spending precious time together and individuals watching their independence slip away while they wait for basic supports.

No more waiting

MND Australia is urging the Minister for Health and Ageing, the Hon. Mark Butler, to act on the Senate Committee’s recommendations and establish a fast-track pathway within Aged Care for Australians diagnosed with MND after 65. Unfortunately this alleged fast track is approval within three months. The NDIS does the same within five working days.

This highlights the unfair two-tiered system of inequity for people living with MND who get diagnosed after aged 65.

“For people living with MND, every day matters,” Sullivan said. “They cannot afford to wait weeks or months for equipment, care, or support. Age should never determine access to dignity.”

“MND can’t wait, and neither should the system.”