Welcome to Support for Life, a 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
To see information relevant to your situation, please select if the individual living with Muscular Dystrophy or a neuromuscular condition is:
If you, or a member of your family, have been diagnosed with Muscular Dystrophy or 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We will endeavour to keep the Support for Life site as accurate as possible, but if you find any outdated details, please make us aware through the comments function.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.
RESOURCE: PRACTICAL PLANNING GUIDE FOR THE NDIS
MDWA and Save our Sons have put together a booklet designed for WA families and individuals who are either currently within the National Disability Insurance Scheme or transitioning over the to the NDIS.
It is designed to assist with understanding the NDIS and preparing for a planning or review meeting.
You can use the booklet by either:
a) Filling the information in electronically in the PDF and printing it; or
b) Printing the booklet and hand writing the answers in.
The booklet can then be taken to the planning and review meetings to support your plan.
Other important thing to do when planning include:
- Speaking to family and friends, considered your informal supports
- Talking to service providers, community/education organisations and medical professionals who are involved in your life, known as your formal supports.
For further information on this booklet, the NDIS or to request a hardcopy please contact us.
PLEASE NOTE: The WANDIS and NDIS transition is an ongoing project so we will try our best to keep this information as up to date as possible. If in doubt, please call or email us to clarify any questions you may have. This booklet should only be part of your preparation for a planning or review meeting.