2026 Community Survey: What you told us and what we’re doing

Every year, we run a Community Survey to give you the chance to tell us what’s working, what needs work, what we should be prioritising and how our programs are serving you and your family. This year, 67 people completed the survey, representing a 68% increase on last year. Thank you to everyone who participated.  

We read every response, every comment and every suggestion. Your feedback is helping shape where we focus our time, energy and resources over the next 12 months. 

Here’s what we heard and what we’re doing in response. 

You told us regional access matters

It’s a tale as old as time (or at least as old as our Community Survey): our presence in the regions matters to you. Many of you told us that distance, travel costs and time can make it difficult to engage with our programs and events if you live outside of Sydney. 

Over the past 12 months, we’ve been doubling down on our presence in regional NSW. So far, we’ve been to the Hunter, Central Coast, Central West, Illawarra and Canberra. We’re heading to the Northern Rivers later this year too! But that doesn’t mean our work is done. 

What we’re doing: 

• Continuing to expand Peer Connect Local activities in regional NSW. 

• Using community feedback and data to identify priority locations. 

• Working with community champions to shape and promote regional events. 

Our goal is simple: More people connecting with their neuromuscular community through MDNSW, regardless of where they live.   

You want practical information

You value information that helps you navigate everyday challenges, understand the NDIS and plan for the future. In a sea of unreliable information, you want clarity. 

We’ve been building our collection of practical Tip Sheet resources, covering topics like Accessing NDIS Short Term Accommodation Funding, Accessible Travel and more. But the road doesn’t stop there.  

What we’re doing:  

• Developing new resources on topics you’ve told us matter most. 

• Making the resources easier to find. 

• Exploring different formats to meet accessibility needs. 

You want to hear more about research and clinical trials

Research moves quickly and it can be difficult to cut through the jargon, headlines and hype. We heard loud and clear that you want accessible, trustworthy information about research, treatments and clinical trials.  

This was front and centre at our recent Neuromuscular Information and Research Day, but you told us you want it to be part of the conversation year-round. 

What we’re doing: 

• Spotlighting opportunities to participate in research and clinical trials. 

• Sharing more plain-English research content. 

• Launching an “Ask an Expert” series to provide accessible answers to questions about research, clinical trials and neuromuscular health topics. 

You told us the NDIS is creating uncertainty 

The uncertainty surrounding NDIS reforms was one of the strongest themes in this year’s survey. 

Many of you shared concerns about changing rules, delays, funding uncertainty and what future reforms could mean for you and your family. More than half of survey respondents reported being affected by recent NDIS changes.  

You also took the time to share detailed examples of how these changes are affecting your daily lives. Those insights have already helped inform our advocacy. 

What we’re doing: 

• Advocating for the needs of our neuromuscular community. 

• Highlighting opportunities for you to learn about NDIS changes and what they mean. 

• Sharing timely information through trusted channels. 

Connection is at the heart of what matters to you 

Connection is why you’re here.  

Getting to meet others who just get it, sharing experiences and learning from peers is what makes our community so special. And you want to ensure that connection remains central to our programs and offering. 

What we’re doing: 

• Continuing to create opportunities for connection in-person and online through Peer Connect and Overnight Breaks and Retreats. 

• Exploring ways for you to contribute more deeply to program development and planning. 

Looking ahead 

While there was a lot we could learn from our Community Survey, there was also much to celebrate. You have strong confidence in our advocacy. You have deep trust in our work and services. You have a strong willingness to recommend us to others.  

That feedback means the world to us.  

We can’t do everything at once, but we hope this gives you confidence that your feedback doesn’t disappear into a spreadsheet. It helps shape the work we do every day, from the programs we deliver to the resources we create and the issues we advocate for.  

Thank you again for being part of our community. Your input is what makes it strong, vibrant and enduring. 

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