If you have a disability and need attendant care support to participate in community activities and attend venues, the Companion Card can help you with the costs of getting out and about with the support of a companion.
A companion is any person who accompanies a cardholder and provides attendant care support. The cardholder’s chosen companion may be a paid or unpaid assistant or carer, family member, friend or partner.
Companion Card holders receive a second ‘companion’ ticket at no charge at participating venues and on public transport. The companion ticket is also exempt from booking fees.
The Companion Card is issued in the name of the person who has a disability and is valid for five years.
For more information and to identify your State program click the link below.
The charity Muscular Dystrophy Australia is another great source of information and support for people with muscular dystrophy.
There are also state-specific muscular dystrophy organisations that focus on social services, allied health and personal advocacy:
Other non-governmental organisations may provide equipment grants or help with fundraising, such as Variety, Rotary and Lions.
There are many sources of practical help for people living in Australia with FSHD. You may be looking for assistance in getting access to mobility aids, or be looking for help with work, modifications to your home, or social support.
The following list is not exhaustive. It may be helpful for you to connect with people in your community with FSHD, other muscular dystrophies, or people living with disability. Please note, to get access to many of these services you may need a confirmed diagnosis of FSHD. For more information on getting a formal diagnosis please refer to our webpage on diagnosis and genetic testing for FSHD.
The NDIS is a federally-managed program that is available to all Australians with a disability. If you have symptoms of FSHD, and have received a clinical diagnosis, it is worthwhile looking into the support which could be accessed via the NDIS. This could help you maintain aspects of everyday life, your independence, your ability to work or study, or participate in community activities.
Please note you need to have accessed the scheme before turning 65 years old to receive support. As the NDIS supports people with disabilities according to their functional impairment, a diagnosis alone is not enough to guarantee support under the NDIS.
JobAccess is a federally-funded program to help Australians with disabilities find or maintain employment. It provides support such as assistance in workplace training, disability modifications and assistive technology.
If you are unable to work, Services Australia administers the government Disability Support Pension.
The Department of Social Services has information on support that may be available, and links to your local state services.
The Loop is a useful resource for people living with neuromuscular diseases including FSHD.
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