There are many sources of help for people 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, support socially. There is help out there. 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.
It is important to be aware that to get access to many of these services you may need a confirmed diagnosis. For more information on diagnosis of FSHD please refer to our ‘Finding answers’ page .
A good starting point for finding help is the Commonwealth Department of Social Services. They have information on the services that may be available and links to your local state services.
With the rollout of the NDIS many people will fortunately start to receive better access to care and services as well as mobility support. Full roll out of the NDIS is not due to happen until 2020. Until then your state department of disability services should be able to give you information. For more information on the NDIS in your area refer to the NDIS website
In terms of employment, the government runs a scheme called Job Access designed to help people access funded assistance to help with continuing to work. This program is funded by the commonwealth and it is done at no cost to the employee or the employer. As part of the scheme they help to identify and remove barriers in the workforce. This may include funding for setting up an office in a way that works best for you such as buying arm rests, specialised chairs, or may include mobility aids to help you get to work and get around at work such as power assisted wheels or help funding an electric wheelchair. They also provide training for disability inclusion for your workplace.
If you are unable to work centrelink administers the government disability support pension. For more information on eligibility and to apply see their website.
There are other non-governmental organisations may provide equipment grants or help with fundraising such as Variety, Rotary and Lions.
The Muscular dystrophy association is another source of information and support. There are a number of support services that they provide that you may be able to get access to.