Penny Allman-Payne (Queensland, Australian Greens) | Link to this | Hansard source

by leave—I move:

That the Senate take note of the document.

I rise to take note of the Aged Care Amendment (Motor Neurone Disease Priority) Rules 2026. These rules provide a faster pathway for people with motor neurone disease to access aged care, and that is welcome. However, our aged-care system is far from appropriate for people who are suffering from motor neurone disease, especially in its current form. Most people who get a diagnosis of motor neurone disease die within an average of two years, and whilst a faster pathway to access care is helpful, it actually costs around $300,000 a year to provide adequate care for someone living with MND. If you are over 65 and you are forced into relying on My Aged Care to support those needs, the most help you can get is $78,000 under a supported home package, and that is woefully inadequate for people whose needs are very high.

We've seen, around the country, people coming together to support people like Neale Daniher in the fight against MND, and people like him have done an amazing job at raising the profile of this disease, but I don't think people realise how much stress there is and how hard it is for somebody who gets that diagnosis when they're over 65. The co-payments that have been brought in under supported home mean that even that highest level of package is now purchasing 30 per cent less. When we go from a need that's around $300,000 a year to $78,000 and you then cut the purchasing power of that by even more, that is putting families in really difficult positions. It has massive impacts on other people in the family. I will use my family as an example. My mother got an MND diagnosis over the age of 65. She was still working. My father, who was much older than her, carried the burden of her care. She never got care under My Aged Care because she was one of those 5,000 people a year who die before they get care.

In Queensland, if you are over 65 and your My Aged Care package falls woefully short, which it does, then you are reliant on MND Queensland. MND Queensland is the only motor neurone disease support organisation in the country that gets no recurrent state government funding despite MND Queensland advocating to both the Labor and the coalition governments, and still they remain without recurrent funding. We have an organisation that is out there fundraising their backsides off to fill the gap that is left because, if you're over 65 and you get that diagnosis, My Aged Care is not going to be there for you, and, if it is, which I hope it will under the 30 day pathway, it will fall way, way, way short.

My mum was lucky. We had the capacity to buy the hospital bed that she needed. We had the capacity to buy the electric wheelchair that she needed. We had the capacity to pay OTs and other multidisciplinary teams to come and work with her, and every time we did, my thoughts went to, 'What do those people who do not have the capacity to do that do?' We need to do better. These people are diagnosed with a neurodegenerative disease where their body fails them. They can't speak, they can't eat and they can't walk. They are wholly reliant on someone else for their care. We cannot leave them at the mercy of an aged-care system that falls far too short. So I implore the government, for all of those people out there who are over 65 and get this devasting diagnosis, to please do better. The 30 days are welcome, but, like I said, it is going to fall far, far short, and they need more. I seek leave to continue my remarks later.

Leave granted; debate adjourned.