Inquiry Submission:
Epilepsy in Australia
Opening Statement
My name is . I am a single mother of two children living in a small regional town in
Victoria, just outside . My eldest daughter, (14), has ADHD and Autism and is
currently living with her father. My youngest son, (11), lives with me and has complex needs including epilepsy, ADHD, Autism, Intellectual Disability and a Language Disorder.
was diagnosed at the age of two with Panayiotopoulos Syndrome and later, at five, with Continuous Spikes and Waves in Sleep (CSWS).
This submission is based on my lived experience navigating the healthcare, disability and education systems over the past 11 years. It reflects not only the medical realities of epilepsy, but the compounding challenges faced by families – particularly in regional areas – when systems lack understanding, coordination and accountability. While I acknowledge the dedication of individual professionals, the systems themselves are not designed to respond effectively to complex epilepsy. This leaves families, first responders and frontline workers exposed to trauma without adequate support or training.
Addressing the Terms of Reference
a) Barriers to Diagnosis and Access to Treatment i) Geographic Location Living in regional Victoria creates significant barriers to accessing specialist paediatric care. All major children’s hospitals are located in Melbourne, requiring frequent and sometimes urgent travel.
Local paediatric services are largely staffed by rotating registrars. Each time a registrar moves on, families must repeat their entire history, reliving trauma and losing continuity of care. Fortunately, we eventually found a registrar who, once trained, opened her own practice and has supported us via telehealth for seven years. Consistency – even if delivered remotely – was far better than continually re-telling our story.
During periods of intensive treatment, including IV steroids, we relied heavily on Ronald McDonald House. Without this support, the combined cost of accommodation and food would have made treatment inaccessible. VPTAS (Victorian Patient Transport Assistance Scheme) also significantly reduced fuel costs, though not enough families know this support exists. (Also applicable to section
a) iii) Costs) Victoria has world–class children’s hospitals, but access is not equitable. Regional families face additional financial, emotional and logistical burdens simply to receive care.
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ii) Availability of Medical Practitioners Neurology services are critically under-resourced. MRI availability is extremely limited, causing long delays in essential imaging.
Clinicians are committed, but the system cannot meet demand. We repeatedly waited weeks or months for appointments.
During COVID-19, my son’s EEG was classified as “elective” and cancelled. As a result, he spent months in a constant seizure state – unable to communicate, largely bedridden and completely disconnected from the world around him. We did know that this is what he was experiencing until such time that the EEG could be undertaken. When he was finally admitted through the emergency department to Monash Children’s Hospital (given the advocacy of our paediatrician) specialists were alarmed at the severity and rarity of his condition. We were told they had never seen anything like it. The electrical activity had moved from the back and into the sides of his brain. “That just doesn’t happen in epilepsy” is what the treating neurologist explained. Despite this, earlier intervention had not occurred due to system constraints and triage limitations.
This delay in access prolonged his suffering and placed our family under extreme and preventable distress. Needless to mention the compromise of ’s health and wellbeing and potential long term damage – had he been seen sooner.
iii) Costs While medication costs are subsidised, the true financial burden of epilepsy is not recognised.
During episodes of abnormal brain activity, my son becomes physically aggressive and destroys property within the home. This results in ongoing replacement costs. From TV’s, to iPads, windows and doors – ceiling fans have been ripped out of the ceiling exposing live wires as well as chairs and computers being destroyed.
Combined with travel, lost income and the demands of full-time care, the financial impact is continuous and unsustainable. Particularly if you are on grossly inadequate Centrelink payments.
iv) Cultural and Language Barriers Not applicable in our case.
b) Drug Resistant Epilepsy Although we have now reached a stable balance with ’s medication, the journey to get here was extremely difficult and distressing. He was trialled on almost every medication legally available for children under 12 with several resulting in significant and frightening adverse side effects, including severe behavioural changes and episodes that bordered on psychosis. During this period, we lived through situations that were deeply confronting and overwhelming. When was six years old, his behaviour escalated to the point where he became violently aggressive and I genuinely feared for my safety and struggled to keep all of us safe. These experiences were not only physically challenging but emotionally traumatic and they remain some of the most difficult moments of our lives.
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c) Community Awareness and Understanding There is a profound lack of understanding of epilepsy within the community.
Epilepsy is commonly reduced to visible seizures – drop and fit. In reality, it is a complex neurological condition that affects behaviour, cognition, sleep, emotional regulation and overall functioning.
It is not just the seizure – it is the unpredictability, the recovery and the constant fear of the next episode. Although after a sleep study was conducted for – there was no visible signs of a sleep disorder. To this day he only sleeps in two to four hour stints, with six hours being the most he will ever sleep in one go, which is incredibly rare. Unpredictability is his best character trait! We never know when he’s going to sleep but take it when we can get it.
This lack of understanding leads to isolation. My entire family turned their backs and I was forced to set boundaries because their opinions about “behaviour management” dismissed the severity of ’s epilepsy.
I could not work safely on a broken five hours of broken sleep per night, but I needed work to pay the bills. Both being ‘parental responsibility’ – however nothing left to support this through the community.
The trauma extends beyond the individual diagnosed:
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Families live in a constant state of hypervigilance, never knowing when the next seizure will occur or whether their child will survive it.
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Siblings are exposed to repeated emergency situations. My daughter, at just eight years old, experienced paramedics attending our home and was, at times, left without immediate support or supervision while I accompanied her brother to hospital.
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Parents experience repeated psychological trauma – holding a child who appears lifeless, not knowing if this is the moment they lose them. “Is this it?” – a constant worry
This is not a one-off event. It is repeated trauma over years – none getting easier with time.
There is also an often-overlooked impact on first responders and healthcare professionals. Paramedics attending seizures – particularly complex or atypical presentations – are frequently exposed to highly distressing situations they may not have encountered before. It has been my responsibility to keep them calm and provide support around what treatment needs to occur. Similarly, hospital staff without specialised epilepsy training can be unprepared for the severity and presentation of cases, contributing to stress, uncertainty and inconsistent care.
Epilepsy is not only a medical condition – it is a traumatic experience for everyone involved.
d) Barriers to Support Services (Including NDIS) The NDIS presents one of the most significant barriers due to a lack of understanding of epilepsy.
My son has both an epilepsy diagnosis and an autism diagnosis. However, the presence of autism has resulted in his epilepsy being consistently overlooked and misunderstood.
NDIS decision-making often defaults to autism because it is more familiar and easier to assess. As a result:
- Epilepsy is minimised or disregarded Page 3 of 9
- Medical risks are underestimated
- Supports are based on behavioural assumptions rather than neurological reality
- Needs are incorrectly assessed This creates unsafe and inappropriate care environments and is frighteningly dangerous.
There is a clear lack of education within the NDIS regarding epilepsy and its impacts.
For example:
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Severe sleep deprivation – known to exacerbate epilepsy – was not treated as a priority – our planner literally laughing it off that they use “sleep deprivation as a form of torture”
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Support workers don’t always have adequate training
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Some workers did not understand that waking a sleeping epileptic child can be life- threatening – literally laughing it off like it’s a joke to disturb his sleep because the NDIS are on our backs to get him to attend school
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Neurological symptoms were (and still are) misinterpreted as behavioural issues Accessing appropriate support required relentless advocacy.
Initial access was denied, yet when funding was approved, it did not reflect need. Even as his condition deteriorated, support remained grossly inadequate.
Eventually his case was escalated into the Complex Needs Child and Youth stream within the NDIS involving the Department of Families, Fairness and Housing (DFFH), Support Coordinator and other services. It was a sigh of relief – until I realised that their level of support was limited to an online meeting once every two months. Not the practical support needed for the family and the child.
Following significant escalation and advocacy over a number of years, my son now has a plan worth approximately $650,000 per year and requires 24/7 care delivered by a team of 11 support staff. Yet even with 11 staff members, most are unable or unwilling to work more than one to two shifts per week because they are exhausted.
But for eight years, I – his mother – was expected to provide that exact level of care around the clock, without proper support, raising another child and while living with an abusive husband up until was aged six – at which point I was completely alone. The only real help I had was from the most incredible daughter in the world. We would not be here today without her.
Psychologists repeatedly told me that it wasn’t her responsibility. And I agree in theory — but who else was there? People don’t line up to help with high and complex needs kids. Families like ours are often put into the “too hard” basket, left to manage impossible situations alone.
So when I explained the level of support I needed from her, it wasn’t out of choice or neglect — it was because there was literally no one else. And that was also why she struggled to attend school consistently. She wasn’t defiant; she was exhausted too.
There is no single point of accountability. Instead, I am required to coordinate multiple systems, manage risk and ensure consistency of care. Even at this level, the system remains fragmented.
There is also a significant gap between what services say they will deliver and what they actually deliver – the NDIS is far too restrictive and almost humiliating when they ask ‘which disability
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impacts your life the most?’ – they are a whole person. And this $650,000 is something I have to fight for year, after year after year – just to have basic needs met. Sleep and work – that’s it.
Phrases such as “we’re here to support you” from providers or support services often result in a single meeting with little follow-up. In times of crisis, families are directed to call services such as Lifeline. However, Lifeline does not assist with the practical realities of caring for a child with complex epilepsy. It does not clean the house, prepare meals, mow the lawns or care for other children.
Families do not need more phone numbers. They need practical, consistent, in-home support.
I spent years navigating a fundamental disconnect between systems. The NDIS repeatedly stated that “he needs to go to school,” while the Department of Education advised they “did not have the capacity” to safely support him. This left my son without access to appropriate education and our family without a viable pathway forward.
At the same time, I was trying to explain that I, as his mother, was not simply a parent in the traditional sense – I was his primary source of safety and regulation. My presence was not optional; it was essential to his ability to function, engage and feel secure. This need should be understood in the same way as a physical support requirement – no different to a child who requires a wheelchair to access their environment. But “it’s not really fair for the other children” – is NOT the other children. A temporary solution to ensure long term attendance – completely shut down.
The school’s failure to recognise and respond to ’s needs created an environment that was unsafe and unworkable for his continued attendance. Communication was inconsistent and often non-existent and there was no meaningful provision of learning materials or activities to support his inclusion or education during periods of absence.
Multiple meetings were held with the school; however, these did not result in any practical or sustained adjustments to support . There was a clear gap between what was discussed and what was implemented. During a site visit, I was shown a designated room intended for his use, which raised significant concerns regarding isolation rather than inclusion within the school environment.
At the same time, I was being told that needed to attend school, while the reality was that the environment was not safe or appropriate for him to do so. This placed me in a position where I was required to prioritise his safety and wellbeing in the absence of any viable alternative.
As a result, I made the decision to keep him at home when it was evident that attendance was causing distress and dysregulation. My understanding is that his absences were recorded by the school in accordance with their processes. There was minimal follow-up or proactive engagement from the school beyond infrequent meetings (generally once a term).
’s reluctance to attend school was not refusal without cause - it was a direct response to feeling emotionally unsafe. For example, a minor interaction one morning resulted in a disproportionate response from staff, reinforcing his perception that he was not able to express himself safely. Despite claims of experience in managing behaviours, I was frequently contacted to collect him at early signs of distress, which further disrupted any opportunity for consistent engagement.
This reflects a broader systemic issue where responsibility is placed on the child and family to comply, without the necessary supports being in place to make that compliance safe or achievable.
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Too much of our community still believes that neurodivergent people – including children – should behave and present themselves in more neurotypical ways. This expectation disregards their autonomy and identity as human beings. It places the burden on neurodivergent individuals to change the very foundation of who they are simply to make neurotypical people more comfortable. True inclusion isn’t about forcing conformity; it’s about embracing and respecting differences.
e) Research Funding Epilepsy is one of the most common neurological conditions, yet it remains under-recognised and underfunded.
There are promising advancements, including emerging surgical and technological interventions. However, access is limited and many children with complex epilepsy do not meet the criteria despite significant impact on their quality of life.
Research must extend across the full spectrum of epilepsy, not only the most severe or surgical cases.
https://www.mcri.edu.au/news/news-stories/ai-tool-detects-tiny-brain-lesions-children-with-epilepsy
f) Additional Matters Impact on Families and Carers The burden placed on families is extreme and unsustainable.
Over the first eight years of ’s life, I provided just under 70,000 hours of unpaid care – while raising another child, maintaining employment and navigating family violence.
This level of care is equivalent to decades of full-time work – people are now getting paid to do what society just expects of mothers. We are not superhuman but somehow, we have to be because we don’t have a choice.
Families are expected to function under conditions that would not be acceptable in any workplace:
- Chronic sleep deprivation and fatigue
- Exposure to repeated trauma
- Continuous high-risk decision making
- Exposure to violent behaviours
- Isolation Given my background as a Workplace Health and Safety professional – with a Diploma-level qualification and extensive experience – I find it deeply concerning to witness the way families are treated within this system. The expectations placed on parents, particularly single mothers, would never be considered acceptable in any formal workplace environment.
Time and again, when the level of care becomes too complex or demanding, it is mothers who are left to carry the full weight – often after fathers disengage and leave. The disparity is not only confronting but highlights a broader systemic failure to recognise and respond to the realities faced by families supporting individuals with high and complex needs.
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There is little recognition of caregiver burnout and minimal practical support – and we are often gaslit and made to feel that we are imagining things. But we are just at breaking point and with a very short fuse – complete utter exhaustion.
Simple supports – such as cleaning, meal preparation and respite – would significantly improve family capacity. Instead, families are left to manage alone until they reach crisis point.
Recent tragic events in Australia have highlighted the devastating impact that prolonged caregiver exhaustion and lack of support can have on families. While not all cases are directly related to epilepsy, the underlying issue of chronic sleep deprivation and sustained psychological strain is highly relevant.
Caring for a child with complex epilepsy often involves severe and ongoing sleep disruption, constant vigilance and exposure to repeated trauma. Over time, this creates a level of physical and emotional exhaustion that is difficult to fully articulate.
Parents do not choose for their children to have complex disabilities. Yet they are often left to manage these realities with minimal practical support – right here in Australia – the “lucky” country. When tragedies occur, there is widespread shock and questioning. However, there must also be reflection on the systemic conditions that contribute to families reaching breaking point.
This is not solely an individual issue – it is a collective and societal responsibility. When systems make it difficult to access adequate, timely and practical support, families are placed under unsustainable pressure.
What families are asking for is not excessive. It is support to meet basic human needs - rest, safety and the ability to care for their children without reaching crisis point.
There is a significant gap between the level of support required and what is currently provided. Addressing this gap is critical not only for the wellbeing of individuals with epilepsy, but for the safety and sustainability of the families who care for them.
What shocks me most is this: If I relinquished to state care, he would immediately receive all the support he needs – at a cost likely five times higher than providing early support to our family.
It makes no sense. Help is only offered after families collapse. This is not only ineffective – it is cruel, reactive and economically irresponsible – than providing meaningful early support.
Recommendations
Improve Access to Specialist Neurology Services
o Increase funding and workforce capacity for paediatric neurology
o Expand outreach and telehealth services for regional families
Mandatory Epilepsy Education Across Systems
o Require epilepsy-specific training for NDIS planners, support coordinators, educators and healthcare workers – not just the basics but all of the possibilities and how it should not be dismissed when autism is also a diagnosis
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o Ensure epilepsy is assessed independently and not overshadowed by co-occurring diagnoses such as autism
Improve Safety and Quality of Care
o Introduce mandatory training standards for support workers – PROPER training, not tick and flick
o Ensure understanding of critical risks such as sleep deprivation and seizure management
Reduce Administrative Burden on Families
o Extend plan durations for complex, lifelong conditions
o Reduce the need for repeated reassessment and justification – as stated, sleep deprivation is used as a form of torture – we need it to not only survive, but to go to work and perform in our roles without risk to the health and safety of other people
Provide Practical In-Home Support
o Fund domestic assistance (cleaning, meals, household support) as standard
o Face-to-face in-home mental health support after an episode/seizure – particularly the initial one, but also ongoing. Even if another episode never occurs, proactive education, counselling and psychology would have had the potential to minimise the risk of depression, anxiety and suicidal ideation in family members
o Increase access to respite and support for siblings – they miss out on so much because the NDIS funding is for the child with the disability – not the family. Even though the disability impacts the WHOLE family.
Improve System Coordination
o Establish a single, accountable case coordination model for complex cases
o Reduce duplication and conflict between agencies
Increase Community Awareness
o Fund national education campaigns to improve understanding of epilepsy beyond visible seizures
o Address stigma and social isolation
Increase Investment in Research
o Expand funding across all forms of epilepsy
o Support research into complex and rare conditions
o Ensure equitable access to emerging treatments
Conclusion
Epilepsy is not just a medical condition. It is a potentially lifelong, unpredictable and often traumatic experience that affects not only the individual, but their entire support network – including families, friends, first responders and healthcare professionals.
The current systems are not equipped to respond to this reality.
Families should not have to fight this hard to keep their children, their families and themselves safe.
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Meaningful reform requires not only funding, but a fundamental shift in understanding, coordination and support – so that families are no longer left to carry this burden alone.
People often say they don’t know how I “do it”. The truth is, when I look back, I don’t know either. There was no choice – only responsibility. I made the decision to have children and with that comes a level of accountability that I take very seriously.
What I do know is that I could not accept decisions being made about my son by people who had only spent minutes with him and who did not understand the complexity of his condition or his needs. I was not prepared to allow systems to dictate what was “best” for him when those decisions did not reflect his reality.
I believe my son was given to me for a reason. He has challenged me in ways I could never have imagined, but in doing so, he has also shown me my own strength. I would not have been pushed to this level of resilience, advocacy and determination if I had not been his mother.
I have developed strong advocacy skills out of necessity. I am prepared to challenge decisions, to ask difficult questions and, at times, to make people uncomfortable – because the outcomes matter. This is not about being difficult; it is about ensuring that my child and others like him, are not overlooked or dismissed.
and his amazing sister have taught me my worth. And if having a voice means being labelled as someone who “always has something to say,” then I will continue to use that voice for something that is necessary – driving positive change for those who cannot advocate for themselves.
Mothers of epileptic children have to be some of the strongest, bravest and most courageous people in the world with little to no recognition. This is for them
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