Submission 821
Submission to the Senate Inquiry into the NDIS Future Generations Bill
Submitted by: 1IN25 Foundation
Introduction
1IN25 Foundation is an Australian charity supporting families impacted by epilepsy.
We are submitting this response on behalf of our own family, and the many Australian families who shared their lived experiences with us through our “Epilepsy Voices for the NDIS Amendment” survey.
What became overwhelmingly clear through these submissions is that epilepsy remains deeply misunderstood within disability systems, despite the devastating and lifelong impact it has on individuals, carers, siblings, relationships, employment, finances, mental health, education, and safety.
Families repeatedly described feeling invisible, traumatised, exhausted, and abandoned by systems that were designed to support them.
This submission is not theoretical. It is built from lived experience.
Our Story
When we received our daughter Sofi’s epilepsy diagnosis, we asked specialists what supports were available.
The NDIS was mentioned, but we were repeatedly told we likely would not qualify and “didn’t need support”.
At that stage, we had no understanding of what life with epilepsy would become.
We never imagined our life as parents would involve:
- constant seizure monitoring
- repeated hospital admissions and emergency calls
- learning complex medical information so we could advocate for our daughter
- chronic sleep deprivation
- co-sleeping indefinitely due to SUDEP risk
- managing multiple medications, titrations, and side effects
Submission 821
- therapy schedules and developmental delays
- financial stress from reduced workforce participation
- relationship strain caused by living in constant fight-or-flight mode We were not prepared for the reality that epilepsy is not simply “a seizure disorder”. It is a condition that infiltrates every aspect of family life.
Like many families, we delayed applying for NDIS support because we were repeatedly led to believe we would not qualify.
Eventually, after prolonged sleep deprivation and emotional collapse, a community health nurse referred us to UnitingCare for assistance with an application. During the process, we broke down again in front of our paediatrician, who then supported our application with formal documentation requesting psychology, physiotherapy, and occupational therapy supports.
We also requested overnight support hours so we could sleep safely and recover from over a year of hyper-vigilance.
This request was initially denied.
Only after submitting detailed sleep tracking data documenting the severity of the situation were we granted the equivalent of approximately 10 hours per week at standard weekday daytime rates.
At the time, we were surviving on fragmented sleep while still attempting to work, parent, manage therapies, and respond to seizures.
Even now, our daughter’s funding only allows fortnightly therapies despite multiple professionals advising that weekly intervention would significantly improve her developmental outcomes.
Sofi is six years old, but developmentally closer to a three-year-old in many areas.
She lives with Dravet Syndrome and ADHD, and is currently awaiting ASD assessment. She requires substantial support to participate safely and meaningfully in school, yet like many education settings, her school is limited by available resources.
We are deeply concerned about proposed NDIS changes and funding reductions because families like ours are already surviving on the edge.
One mother from Queensland shared that after multiple rejected applications, she was told:
“Maybe if she gets a little more brain damage we can help then.”
No parent should ever hear those words while trying to keep their child alive.
Submission 821
Recurring Themes Across Australian Epilepsy Families
The stories submitted to 1IN25 Foundation revealed strikingly consistent themes across Australia.
Families described:
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repeated denial of NDIS access because epilepsy was classified as “medical”
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years of fighting to justify essential supports
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traumatic review meetings
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profound sleep deprivation
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financial collapse caused by reduced workforce participation
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inability to access respite
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social isolation
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PTSD, anxiety, depression, and chronic hyper-vigilance
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children missing developmental opportunities because therapies are underfunded
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carers being forced to repeatedly prove the severity of lifelong disabilities
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fear surrounding SUDEP and nocturnal seizures
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the emotional toll of never being able to fully switch off One grandmother described epilepsy as: “like waiting for a time bomb to go off.”
Another parent described the review process as: “traumatising and dehumanising.”
A parent from Rockhampton explained: “There is nothing more disabling than a seizure that makes the person completely lose control over their body and brain.”
Families repeatedly described epilepsy as a condition that affects entire households, not just the diagnosed individual.
Parents spoke of:
- leaving careers
- selling homes
- surviving on reduced incomes
Submission 821
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caring for children around the clock
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coordinating medications, therapies, mobility equipment, and emergency responses
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living with constant fear their child may die during sleep One grandmother wrote: “My daughter is in a constant state of hyper-vigilance, chronic stress, and anticipatory grief.”
These are not isolated stories.
They represent a pattern.
What Decision-Makers Need to Understand About Epilepsy
Epilepsy is not simply “managed seizures”.
For many families, epilepsy involves:
- intellectual disability
- developmental delay
- autism and ADHD
- behavioural challenges
- mobility impairment
- PEG feeding
- sleep disruption
- psychological trauma
- social isolation
- constant medical supervision Many families caring for children with severe epilepsy are effectively providing intensive nursing-level care around the clock, often without adequate respite or support.
Epilepsy is unpredictable.
Families cannot simply “schedule around” seizures.
Even basic daily activities require:
- medication planning
Submission 821
- emergency rescue medications
- supervision plans
- seizure management knowledge
- emergency contingencies
- risk assessments One parent explained: “Imagine living your life on high alert and there is no off switch.”
Another wrote: “It doesn’t just take a toll on the person who has it. It really affects the whole household.”
The emotional and physical toll on carers is profound and ongoing.
Recommendations
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Recognise severe epilepsy and developmental epileptic encephalopathies as disabilities with lifelong functional impact.
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Ensure epilepsy families are not excluded from support because epilepsy is incorrectly categorised as “medical only”.
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Reduce the burden of repeated reassessment for lifelong and degenerative conditions.
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Increase funding for regular therapy access, including physiotherapy, occupational therapy, psychology, speech therapy, behavioural supports, and developmental interventions.
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Expand access to respite and overnight support for carers experiencing chronic sleep deprivation and hyper-vigilance.
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Improve epilepsy-specific training for NDIS planners and reviewers to ensure informed, trauma-aware decision-making.
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Ensure support decisions appropriately consider the impact on the entire household, including siblings and carers.
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Improve access to specialised equipment, orthotics, seizure monitoring systems, assistance dogs, mobility supports, and home modifications.
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Increase regional and remote access to epilepsy-informed supports and therapies for families outside metropolitan areas.
Submission 821
Conclusion
Families living with epilepsy are exhausted from fighting two battles simultaneously:
- the condition itself
- and the systems designed to support them The NDIS has the potential to profoundly improve quality of life for epilepsy families.
But currently, many families experience the system as inconsistent, adversarial, traumatising, and deeply uninformed about the realities of epilepsy.
We urge senators reviewing the NDIS Future Generations Bill to listen closely to the lived experiences within this submission.
These families are not asking for luxuries.
They are asking for safety, dignity, sleep, stability, and the ability to survive.
Behind every funding decision is a child whose safety depends on it.
And behind every child is a family trying desperately to hold everything together.
Kind regards,
Melissa and Rafael Garcia Nunez
Co-Founders
1IN25 Foundation