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House of Assembly - Fifty-Fifth Parliament, First Session (55-1)
2023-05-03 Daily Xml
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Question Time

Motor Neurone Disease

Ms THOMPSON (Davenport) (14:21): My question is to the Premier. Can the Premier update the house about MND SA's Walk to d'Feet MND event and what the government is doing to support MND SA?

The Hon. P.B. MALINAUSKAS (Croydon—Premier) (14:21): I want to thank the member for Davenport for her question and her advocacy on behalf of all those South Australians who have been diagnosed with MND and all the families around them. I know that this is a subject that is very close to the member for Davenport's heart. I enjoyed the opportunity to be with her on Sunday morning, right up until she poured a bucket of ice water on my head. It's an important question on an important subject.

Often in this place when we talk about health and we talk about billions of dollars being expended, that's important and deserves scrutiny, but sometimes it's the little things that can make the biggest difference. Extraordinary advocacy during our period in opposition from Graham made it clear to us that there were a group of people who were being diagnosed with MND in South Australia who were being completely left behind simply because they missed out on a lottery of life not just because they were diagnosed with MND but because they were diagnosed after the age of 65.

At any one point in time in South Australia, there are between 100 and 150 people who have MND. It is an awful disease that is particularly difficult on those people who are diagnosed with it but also family members around them. It's a really difficult one to observe. What happens, of course, is that if you are 65 or under and diagnosed with MND you are readily well cared for, or as best as you can possibly hope for, through the NDIS, but if you are diagnosed just over 65 you are largely left with nothing. Of course, this happens to a very significant portion of people with MND who don't get diagnosed until later in life. I spoke to some of these people on Sunday morning.

Having heard the advocacy in opposition, we did commit to a $2.4 million commitment that, if Labor won government, we would seek to try to address that gap where we can. I'm very pleased to confirm to the house that the first year of that funding, $600,000, has now gone to MND South Australia to provide services to people over the age of 65 who have missed out on NDIS funding or support. That funding to MND SA is helping them employ specially trained nurses, most recently a specially trained speech pathologist, aimed at assisting those people who have been completely left to their own devices.

MND SA had their main fundraising event of the year on the weekend. There were literally thousands of people there, lots of family members, family members of those who have been deceased and lost their lives to MND. But in MND SA, there is a really good hardworking not-for-profit organisation that are only interested in the care of people who are diagnosed in this circumstance.

As a government we are trying to do everything we can and it was heartening to hear firsthand accounts of how a contribution of $600,000, which in the context of the health budget is small beer, but how that $600,000 per annum is literally making a world-changing difference for people in these really difficult circumstances.

I thank the member for Davenport for her advocacy in this area. I want to thank the Minister for Health who has been central to the delivery of this program. And, again, I think it is a good illustration that sometimes it is the little things that can make the biggest difference, and this was a really powerful example of that on the weekend.

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