A Step Forward for People with MND
Living with motor neurone disease (MND) means navigating a world of uncertainty. As someone with a slow-progressive form of MND, I understand the challenges firsthand. The announcement of a new specialist pathway for MND within the NDIS, 1 July 2024, is a significant step forward.
Earlier this year, MND Australia’s Global MND Day event highlighted the need for urgent and targeted action. Their Six-Point Plan calls for improved support, from funding disability services for older Australians to better access to genetic testing and clinical trials. Among these priorities, ensuring the NDIS better meets the needs of people with MND stood out, and Minister Shorten’s announcement of the specialist pathway is a direct response to this advocacy.
Why This Matters
MND is a cruel disease. For many, its progression is swift, leaving little time to wait for supports that are often life-changing—or life-saving.
I’ve been fortunate to access the NDIS and use my funding to support my needs. Yet, even with my slow-progressive form, the process of securing supports has been exhausting. For those with more rapid progression, delays can mean they don’t receive the right supports before it’s too late to make a difference.
The specialist pathway promises to address these delays by streamlining the application and plan review process, ensuring people with MND can access the supports faster. This is a much-needed change, as the disease doesn’t wait for bureaucracy to catch up.
A Personal Perspective
When I first joined the NDIS in its early rollout, I was lucky to be included from the start. Yet even then, I was navigating a system that didn’t always understand the unique needs of MND participants. Assistive technology, home modifications, and personal care are essential, but so is the timing in accessing them.
For me, managing daily life with MND often feels like walking a tightrope. Some days, my condition feels manageable. On others, I’m reminded of its relentless progression. Knowing the NDIS is taking steps to simplify the process for others like me is a source of hope.
Looking to the Future
The specialist pathway is just one piece of the puzzle. MND Australia’s Six-Point Plan outlines further steps to make a greater impact, such as funding a patient registry and ensuring older Australians receive disability supports equivalent to those offered by the NDIS.
This announcement reminds us of what’s possible when people work together to push for change. I’m hopeful this is the beginning of a broader shift in how needs are addressed.
The specialist pathway is a recognition of the urgency and importance of supporting people with MND. For all of us navigating this journey, it’s a step in the right direction.
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Have you or a loved one faced delays in accessing NDIS supports due to MND? Share your story in the comments or with your local representatives to help keep the momentum going for change. Together, we can continue to advocate for the supports we need and deserve.