Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
SWAN provides a voice for the many families around Australia caring for children with complex genetic conditions. We exist to raise the profile of SWAN children, put their needs firmly on the public agenda, and ensure they are given every opportunity to thrive.
We advocate for SWAN children and families with local, state and federal governments. We aim to achieve better health, disability, education and social support for the SWAN community. Key outcomes we advocate for include:
Medicare-funded genomic testing – SWAN provided feedback to the Medical Services Advisory Committee as part of a campaign for Medicare-funded genomic testing for children with complex conditions. The campaign succeeded, with Medicare-funded testing commencing in May 2020. SWAN continues to campaign for the program to be expanded to children aged over 10 and be available for children with mild intellectual disabilities or for those who present with dysmorphic facial appearances or one or more major structural congenital anomalies.
Genetic and genomic testing – SWAN would like every SWAN child who requires a genetic or genomic test to receive one within 12 months of needing one to determine their diagnosis. We want fair and equitable access to genetic and genomic testing.
Carer payment reform – Currently only one parent is allowed to apply for the carer payment when their child is in palliative care or has a complex disability or medical needs. SWAN is campaigning for both parents to have access to the carer payment when their child is receiving palliative care.
Improved accessibility – SWAN is campaigning for an increase in accessible (disability friendly) toilets and change rooms in public places, as well as accessible car parking.
NDIS Reform – SWAN wants more flexibility applied to the longevity of NDIS plans. We are also calling for better support pathways for SWAN children and improved staff training about their complex needs. We are currently advocating for functional assessments not to be introduced to participants already on the NDIS.
Hospital support – SWAN is campaigning for better coordination of appointments and expanded telehealth opportunities for SWAN families in regional areas. We would also like to see improved Wi-Fi services and subsidised car parking at hospitals.
Education assistance – SWAN wants teachers to have better access to training on supporting children with disabilities and health conditions. The IQ system that determines access to student support funding needs to be removed or replaced with a more suitable test, such as a non-verbal test for non-verbal students. We are also campaigning for inclusive access to before and after school care and school holiday programs, as well as more funding to support allied health professionals working in all schools across Australia.
You can read more about our advocacy work by visiting the following pages: