At any given time, there are a number of ways to get involved and have your say about matters that are important to you. Such as, disability supports in the community, the impact of MND on you and your family, and care approaches. In 2025 MND Australia and Fight MND conducted a national community survey seeking to better understand the experience of people living with MND, the results have been released with some key findings included in this article. We are also sharing some other ways you can provide your opinion on important matters and help shape the future of MND.
MND Community Survey 2025
The results of the Australian MND Community Survey 2025 highlighted how important it is to listen to people living with MND, their families and carers. 495 survey participants provided their thoughts about the impact of MND on their lives.
Here are some of the key findings:
- Connection to family and community has shown to improve quality of life
- The majority of participants report the need for further research to identify the cause of MND and new clinical trials to slow the progression of symptoms.
- Carers of people living with MND report poorer quality of life and the need for sufficient supports such as increased financial support from the government
- Equitable access to disability support funding, regardless of the age at diagnosis was identified as a top advocacy priority
You can view the full report and key findings here: MND Community Survey 2025
Ways to Share your Opinion
The Australian MND Guideline
Work on the Australian MND Guidelines is underway. The purpose of the guidelines is to develop clinical and person-centred guidelines to shape and standardise approaches to MND care. They will help improve the management of MND and outcomes for people living with the disease.
Although the work in underway, there continues to be a number of ways you can get involved, including advisory groups or reviews.
Learn more:
NDIS Engage Platform
NDIS Engage is a helpful platform for NDIS participants, their families and carers to provide feedback about NDIS reforms. There are many different open projects that the NDIS are seeking consultation on including pricing reviews, disability accommodation standards and much more.
Learn more:
The Consultation Hub
The Australian Government, Department of Health, Disability and Ageing offers a platform for people to participate in consultations that are relevant to them. There are some consultations which may be of interest for people living with MND, their families, and carers such as the Disability Safeguards and Clinical Guidelines for Dementia Care as well as the Disability Safeguards Consultation
The Disability Safeguards Consultation is seeking feedback to develop a Disability Support Quality and Safeguarding Framework and Disability Ecosystem Safeguarding Strategy, which will aim to:
- Set the standard and culture of the systems, services, supports, people and organisations that together meet the needs of people with disability
- Empower people with disability to access quality supports and use safeguards
- Unify and strengthen safeguards for people with disability.
Interested in the outcomes of consultations? The Hub also has a simple summary of what was asked, what was said and what was done.
Learn more:
- Australian Government Department of Health, Disability and Ageing - Citizen Space
- We Asked, You Said, We Did - Australian Government Department of Health, Disability and Ageing - Citizen Space
Become a member of the National MND Lived Experience Network
The experiences of people living with MND, their families and carers are important. The National MND Lived Experience Network helps to connect people with lived experience of MND to organisations and research to better understand the impact of MND.
Learn more:
Provide feedback to MND NSW
We recently conducted a satisfaction survey which we run every second year. We are analysing this feedback and will share the results with you soon. You can submit feedback to us at any time, via phone, email, or our online form.
Learn more or submit a feedback form:
Summary
In conclusion, sharing your opinions and experiences is one of the most powerful ways to shape the future of MND and can help reforms to better reflect the realities of those impacted by MND. As Australia continues to review and improve systems like the NDIS, health services, and national policy frameworks, the feedback of people with MND and their families remain essential.
