System Navigation -
YOUR SUPPORT FOR LIFE
Whether you’ve been recently diagnosed with a neuromuscular condition or have been managing one for years, System Navigation is here to help you navigate systems with ease!
This service connects you with the right supports and services when you need them, with the help of a dedicated Navigator who guides you through the process – saving you time and effort, all at no cost to you.
Eligibility:
The system navigation program is available to people living in Western Australia who have a neuromuscular condition or are awaiting a diagnosis of a suspected neuromuscular condition.
What System Navigation Covers:
Our navigation services span not only health and disability but also NDIS, Centrelink, advocacy, equipment, transport, education, housing, employment and mental health, anything you require assistance with.
Examples of how our navigators help:
Our experienced navigators can help with any support or service you need. Specific examples include; help with accessing NDIS or aged care, recommendations for mental health support, awareness around subsidies for example carers allowance and companion cards, accessing equipment and awareness of social programs available.
Health professionals can refer people to the program or you can self refer! Click here to complete the form.
Outcomes for Participants:
Recent evaluation of the program has shown that participants feel more emotionally and mentally supported. Participants also reported feeling more motivated to take action and felt less alone.
This service is free of charge, as we believe in providing Support for Life. Self-referrals are welcome! Click below to start your self-referral or provider referral.
If you have any questions, contact us or to get started on your journey, click on the Access This Service button at the top of the page.
Why system navigation?:
In 2020, a community survey identified a key gap in services and supports for the rare, genetic and undiagnosed community in Western Australia, particularly a lack of coordination of information and care across the service system. In response, we undertook extensive research and resource development over a 12-month period, supported by our community consultation committee. This work led to the launch of a pilot System Navigation program in May 2023. The program is currently funded by the WA Department of Health through to June 2027, enabling us to continue, consolidate and refine the service, as well as expand our reach into regional and remote areas across Western Australia.
The program continues to grow from strength to strength with our navigators. We regularly visit regional centres across WA, building strong connections and relationships with local providers and support services to ensure regional communities are supported and can access the most appropriate services at the right time. This work is continually evolving as we expand our reach and responsiveness across Western Australia.
Expanding our impact in rare conditions
From October 2025, Neuromuscular WA began a pilot within our system navigation service to explore how our model could support people living with other rare conditions. After extensive consultations with a range of rare condition organisations, Connective Tissue Disorder Network Australia was chosen to work in partnership with Neuromuscular WA to extend navigation support to people living with heritable connective tissue disorders across the metro area of Western Australia. This service provides personalised support to help individuals and families better understand, access and coordinate the services they need across health, disability and community systems.
Importantly, this remains a focused pilot. While we deliver navigation support to the CTDNA community, the broader exploration of need across other rare conditions continues to help shape future service models in WA and nationally. This work does not impact our services or support for the neuromuscular community. Our commitment remained the same, putting our neuromuscular community first and ensuring the support you need is always within reach.
This initiative is delivered in partnership with Connective Tissue Disorder Network Australia (CTDNA). You can learn more about their work via their website: Connective Tissue Disorders Network Australia (CTDNA)
“The system navigation service provided someone to spend time seeking support information for me. It gave a sense that someone cared about how I was coping. I felt less alone in my battle with increased disability.”
“There is a clear gap between hospital services and government services and Neuromuscular WA helps fill this and provide a social network for patients.”
“It’s a fantastic initiative that provides support not only to patients and families with neuromuscular disease , but also clinical teams with limited capacity and relatively limited expertise regarding community support services.”
“Yes, the service helped me hugely. On the action plan they put ACROD permit, which I wouldn’t have done without them. They gave me all the information to print out and give to the doctor. I wouldn’t have done it without them.”
If you are a HEALTH PROFESSIONAL or a SERVICE PROVIDER looking to refer someone to our services, please click on the Referrals button at the top of the page.