Navigating life with DEE-SWAS in Australia
This hub is an independently created community information resource for families affected by DEE-SWAS and related developmental and epileptic encephalopathies (DEEs) in Australia.
Information is for general support and service navigation and awareness only and should not be relied on as medical, legal, educational or professional advice.
Inclusion of clinicians, organisations or services does not represent endorsement or recommendation. Information may change over time. Families should confirm details directly with providers.
NDIS
This section brings together practical information, resources and links that may help families navigate NDIS access.
Senate Inquiry Submissions
This page has links to all submissions to the Epilepsy in Australia Senate Inquiry related to DEE-SWAS and other DEEs.
The submissions include perspectives from families, clinicians, researchers and organisations. They describe the challenges people with DEE-SWAS and other DEEs face in their health, education, relationships and everyday life in Australia.
Education and schooling
Children with DEE-SWAS can experience significant school challenges, including seizures, fatigue, fluctuating cognition, learning difficulties, sensory overwhelm and changes in behaviour, communication or participation. This information is provided by families on education supports, advocacy services, school pathways and useful resources to navigate Australia’s education systems and support participation in learning.
Neurologists
Clinicians and services listed here are included based on publicly available information and/or reports from families regarding experience with DEE-SWAS, CSWS/ESES, LKS or related DEEs.
This website does not assess, accredit, rank or evaluate clinicians and cannot guarantee availability, suitability or outcomes of care.