Monday, 21 June 2021
Questions without Notice
Motor Neurone Disease
My question is also to the Minister for the National Disability Insurance Scheme, Senator Reynolds. Can the minister please update the Senate on how the Morrison government is supporting people with motor neurone disease through the National Disability Insurance Scheme?
I thank Senator Van for his question on this most important of issues, one that I know unites everybody in this chamber. Today is Motor Neurone Disease Global Day. Today we recognise and shine a light on motor neurone disease, a cruel and unrelenting degenerative disease. MND is represented by a blue cornflower, which is a symbol of hope: it has a fragile appearance but is hardy in nature.
This morning I attended the MND Global Day event here at Parliament House. There I had the privilege to hear Sharon and Peter share their personal journeys with MND. Seven-year-old Harrison did a wonderful job speaking on behalf of his mother, Sharon, who is no longer able to personally share her story. Sharon shared her journey since her diagnosis at the age of only 34, her life, her work and her aspirations for herself and her family. Sharon herself described her journey with MND as a nightmare. It's a journey in which she is seeking as much control as possible so she can provide as normal a life as possible for her husband, Adam, and for her sons, Harrison and Hayden. Peter spoke of the need for hope, despite being diagnosed with MND, and how he could maximise control of his life and the quality of life for himself and his family.
Hope for a cure still remains so elusive, which means we must keep working together to ensure that people with MND and their families have quick and ready access to the supports they need. This is why NDIS has prioritised people with MND seeking access for the supports that they need, with claims now being completed within five days. The NDIA continues to work with the MND associations nationally to ensure that people have the flexible and timely supports—in particular the AT—that they need. (Time expired)
Again, I thank Senator Van for the question. As we all know, the degenerative progression of MND is rapid and it is unrelenting. They call it the thousand day disease. Therefore, more flexible assistive-technology options are absolutely essential, particularly access to loan equipment to ensure people with MND can get the AT that they need as soon as they need it. I congratulate the MND associations in Australia who are leading the way to provide assistive-technology loan libraries for their members.
Senator Chisholm interjecting—
Please resume your seat, Senator Reynolds. I asked, at the start of question time, for people to restrain themselves. I've also reminded senators that when I use their names I expect them to remain silent for a while. Senator Reynolds.
Again I congratulate the Australian MND associations for leading the way in this space to provide assistive-technology loan libraries. The scheme has been so successful that the NDIA is now looking to do that for children. (Time expired)
While the blue cornflower does symbolise hope for people with MND, the sad reality is that today MND is still a terminal illness. It's important, therefore, for people with MND, their families and their carers to have access to sensitive information and helpful information about the journey that lies ahead. This is why I also—
Senator Chisholm interjecting—
This is why today I also announced the release of an end-of-life guide for people living with MND. Being able to plan ahead can reduce the stress for not only those with MND but their families and carers, to give them more control over the remainder of their lives. It is not something any of us like to think about, but this planning is important. I congratulate MND Australia and the Department of Social Services, who have provided the resources for this sadly necessary guide. (Time expired)