SUPPORT HUB

This is a self-management resource created for Western Australians living with any of the many different types of neuromuscular conditions. A diagnosis of a neuromuscular condition presents unique challenges for individuals and families, and this resource has been designed to help achieve the best possible quality of life from the point of diagnosis and beyond.

Please note: The focus of this resource is on providing support beyond medical assistance and therefore does not focus on providing information on therapy, medical management or research.

Contained in this resource is essential information that yourself and your family may require to understand and access government-funded support services through disability schemes and other avenues of financial assistance. You can also find information on a wide range of areas, such as:

  • Tips for travelling and booking accommodation

  • How to apply for a Companion Card so that accompanying carers can attend events in the community at no extra cost

  • Optimising your home for the use of someone with a neuromuscular condition

  • A list of support groups and counselling services

  • What disability advocacy is, and who to contact should you feel that you have been unable to access your rights

  • How to manage the education of a child with a neuromuscular condition

  • Opportunities for employment

  • Obtaining and/or maintaining a vehicle licence

  • And more

If you, or a member of your family, have been diagnosed with a neuromuscular condition, we strongly recommend that you ask your neurologist about having the diagnosis registered. Patient registries are databases that contain information about individuals affected by a particular condition. Having a state-wide, accurate registry is important for directing funding, research and clinical trial opportunities.

We will endeavour to keep the Support for Life site as accurate as possible, but if you find any outdated details or believe there is information missing, please make us aware by emailing info@neuromuscularwa.org.au

If you need further support or can’t find the information you are seeking, book in to meet with one of our System Navigators to help identify and link you to the supports and services you need by following this link to our website: neuromuscularwa.org.au/system-navigation

Any links provided on this website are to other websites which may have no relevance or application to you. They are provided in case they are of interest to our community. Further please note that such linked websites are not under the control of and neither do they form part of Neuromuscular WA. We accordingly make no representation whatsoever as to the nature, content and availability of those websites and accept no responsibility for them. The inclusion by us of any links does not imply any recommendation or representation about the website or its content and we do not endorse the views expressed within them. We strongly recommend that external sites and content links are never used as a substitute for professional medical advice, diagnosis, or treatment.

Neuromuscular WA acknowledge that disability services are constantly under review, and for that reason information may go out of date quickly. We will endeavour to keep the Support Hub site as accurate as possible, but if you find any outdated details, please make us aware through the comments function. In addition, if you believe that there is information missing from this resource, please let us know by commenting and we will endeavour to make that information available.

Please note that throughout Support Hub we do not provide financial or medical advice, diagnosis or treatment. We will always recommend you seek the advice of a specialist or other qualified professional with any questions you may have regarding your financial situation or medical condition. Never disregard professional medical advice, or delay in seeking advice because of something you may have read on this site or any of the other links.

ACKNOWLEDGEMENT OF COUNTRY

We acknowledge the traditional custodians of this land on which we live and work, the Nyoongar Whadjuk people, and we wish to acknowledge the strength of their continuing culture and offer our respects to Elders past and present.