As someone who lives with a degenerative neuromuscular condition, I am thrilled by the announcement that Neale Daniher is the 2025 Australian of the Year. Through his leadership, the FightMND foundation has raised millions to fund research and ultimately strive for a cure, writes Dr George Taleporos, the Independent Chair of Every Australian Counts.
As someone who lives with a degenerative neuromuscular condition, I am thrilled by the announcement that Neale Daniher is the 2025 Australian of the Year. Through his leadership, the FightMND foundation has raised millions to fund research and ultimately strive for a cure.
What I hope will come from Daniher’s recognition goes beyond this. I hope to see a shift in the national dialogue around the NDIS. The NDIS is a lifeline for countless Australians such as Daniher, living with complex disabilities, providing the means for us to live with dignity, independence and control over our lives. Whether it’s through funding for personal care, wheelchairs, therapies, or other supports, the NDIS empowers individuals to live as active members of society.
Yet, despite its transformative impact, the national dialogue around the NDIS has become alarmingly negative. Media headlines are dominated by stories of cost blowouts, fraud and inefficiencies, overshadowing the real stories of lives changed and opportunities created. This persistent focus on the scheme’s financial cost has contributed to a public discourse that too often portrays people with disabilities as financial burdens and the NDIS as an unnecessary and out of control strain on taxpayers and our economy.
The consequences of this narrative are dire. People with high and complex needs are already experiencing the impact of this negative rhetoric. The recently legislated cost-saving assessments have caused widespread concern within the disability community, as many fear the erosion of essential supports that are vital for survival and independence. NDIS supports are not luxuries – they are necessities such as wheelchairs, support to get out of bed, to have a shower, to survive. Without adequate funding, people are forced into unsafe living arrangements, such as group homes, where incidents of abuse and neglect are far too common. The emphasis on cutting costs fails to acknowledge the human toll of inadequate support and the systemic challenges faced by those who rely on the NDIS.
Daniher’s platform as Australian of the Year presents a unique opportunity to change this conversation. By amplifying the voices and experiences of people with high support needs, Daniher can help steer the narrative towards one that focuses on the human outcomes of the NDIS. His leadership could inspire a national dialogue about creating a more effective, compassionate and person-centred system – one that removes unnecessary bureaucratic barriers, ensures greater flexibility and guarantees sufficient funding for people with the most significant needs.
At the same time, we can take action to reduce waste and crack down on fraud so that people with disability and taxpayers get the most out of the NDIS. There is a lot we can do to make the NDIS deliver better value. Giving people with disability more control over our funding and the ability to use our funding more flexibly is going to be critical to drive cost savings, but so far the reverse has happened with the introduction of the notorious in and out lists that are driving people to more expensive and less effective options or causing them to miss out on a much-needed support altogether.
One of the most important messages Daniher can champion is the reality that disability can affect anyone, at any time. For many Australians who believe that disability will not happen to them, Neale’s story sends a confronting yet important message that they or someone in their family may one day need the NDIS. Whether through an accident or an illness, anyone can end up permanently disabled. This recognition should compel us to see the too often forgotten “I” in the NDIS. The NDIS, like Medicare, is insurance for all of us – a safety net that ensures reasonable and necessary support for everyone in our community, should we ever need it.
Dr George Taleporos is the Independent Chair of Every Australian Counts. He has a regular podcast on the NDIS and you can follow him on LinkedIn
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Tags: Conversation on Disability, Dr George Taleporos, Motor Neurone disease, Neale Daniher - Australian of the Year
