Resources
The MEF2C Foundation Australia Resources page is in its early stages of development. On this page you will find a selection of resources that we have found useful as parents of individuals with MCHS, and we welcome resource suggestions from members of the community. When a parent or carer receives a diagnosis for a rare condition for the first time it can be confusing and isolating. MEF2C Foundation Australia was formed, in part to be the first place those with MCHS visit once they receive a diagnosis, to help provide guidance and support, however over time we aim to build this Resources page to help carers at all stages of their MCHS journey. If you have any questions please get in touch – we're happy to help!
Community Social Media Support
To connect with other families of people living with MCHS you can sign up to the following social media pages and groups. Please note that these groups are global (i.e. not only Australian MCHS community members):
MEF2C (MHS) parent support & chat group https://www.facebook.com/groups/148387552018909
MEF2C Medical Personnel and Families https://www.facebook.com/groups/MEF2CMedical
Publications and references
Clinical findings from the landmark MEF2C ‐related disorders natural history study (2022) - PubMeD https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9184670/
https://rarediseases.org/rare-diseases/mef2c-deficiency/
National Disability Insurance Scheme
The NDIS provides funding to eligible people (including those with MCHS). Funded supports can include therapy (e.g. physiotherapy, speech therapy, feeding therapy and occupational therapy), equipment (e.g. specialised shoes, mobility aids, adapted cutlery) and other consumables (e.g. continence products) and funding to engage support workers. You can find out more here: https://www.ndis.gov.au/understanding/what-ndis
We are more than happy to share our experience in applying for the NDIS – please get in contact with us.
Other government support - Carer's Gateway
The Carer's Gateway can assist with tailored support for carers, including following a MCHS diagnosis. For example, the Carer's Gateway can provide short term assistance to fund yard work and house cleaning. They can also provide emergency respite, for example if you become ill or are injured and cannot look after your loved one. You can find out more here: https://www.carergateway.gov.au/
Other government support – Financial assistance
The Australian government provides financial supports to carers if they are eligible. This includes the carer payment and carer allowance. The Carer's Gateway has a good summary of these financial supports. See here for more information: https://www.carergateway.gov.au/help-and-support/caring-me/available-support-carers/financial-support
You may also be eligible to receive a Health Care Card. A health care card can provide access to cheaper health services and medicines, as well as other benefits. See: https://www.servicesaustralia.gov.au/health-care-card
Grant funding for rare diseases
The Steve Waugh Foundation provides grant funding for rare diseases (including MCHS) where the NDIS has not funded the support e.g. for mobility aids, equipment and therapy. You can find out more here: https://www.stevewaughfoundation.com.au/grants/grant-guidelines/
MLAK Key
The Master Locksmiths Access Key (MLAK) system is an MLAA initiative that allows people with disability access to dedicated public facilities, including facilities in National Parks and many Council municipalities, elevators at railway stations, the new Changing Places facilities throughout Australia, disabled toilets that are locked, and even the Liberty Swing. Please refer to https://masterlocksmiths.com.au/mlak/ as information by state may vary.
Companion Card
A Companion Card may be helpful for families with older children. It can help you with the costs of getting out and about in the community with the support of a companion/carer ticket free of charge. States and territories are responsible for issuing Companion Cards. Please refer to https://www.dss.gov.au/supporting-carers/companion-card for more information.
Inclusion Support
The Inclusion Support Program exists to ensure that ALL children have a genuine opportunity to access, participate and learn in early childhood centres such as (daycare centres or kindy) alongside their typically developing peers. To learn about the support options available and how to access support, please see https://www.education.gov.au/early-childhood/providers/extra-support/inclusion-support-program
An alternative option may be In-Home Care (IHC). This is a flexible form of early childhood education and care where an educator provides care in the child's home. It is restricted to families who are unable to access other types of approved care. For more information regarding eligibility, please visit: https://www.education.gov.au/early-childhood/about/service-types/home-care
MyTime
MyTime organises supported groups where parents and carers of children with disability or other additional needs can meet, share ideas and access quality information and resources. It’s a place to socialise, to discuss, to get information, and to support and be supported by other parents and family carers. See: https://www.mytime.net.au/