Submission 311
From: Sent: Wednesday, 20 May 2026 21:48 To: Subject: Submission to Senate Inquiry on Proposed Changes to the NDIS and Funding Reforms
To the Senate Committee,
I am a senior and experienced health professional, and the mother of Stella, a young child living with Developmental and Epileptic Encephalopathy (DEE), a severe, lifelong neurodevelopmental and epileptic condition.
I am writing with both clinical understanding of disability systems and the lived reality of caring for a medically complex child whose condition is unpredictable, non-linear, and permanent.
I am deeply afraid of what the proposed NDIS reforms will mean in practice. Not in theory, but in the day-to-day survival, development, safety, and long-term trajectory of children like my daughter. These changes are being framed as sustainability and fairness. For families like ours, they translate into reduced support, increased burden of proof, delayed access, and preventable deterioration.
Developmental and Epileptic Encephalopathy (DEE) refers to a group of rare, severe neurodevelopmental disorders characterised by
Early onset, often refractory epilepsy Direct impact of epileptic activity on brain development Severe global developmental impairment Cognitive, motor, communication, and behavioural disability High risk of regression or stagnation over time Complex, multi-system medical and functional needs
DEE is not a single condition but a spectrum of severe epileptic encephalopathies, often genetic in origin. It is typically lifelong and profoundly disabling.
In Australia, epileptic encephalopathies collectively affect approximately 1 in 2,000 to 4,000 children. While individual genetic subtypes are rare, together they represent a significant cohort of children with high medical complexity and lifelong disability needs.
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Submission 311
DEE is not static. It is a lifelong condition with evolving care needs across the lifespan
In early childhood there is frequent uncontrolled epilepsy, feeding difficulties, global developmental delay, and high medical surveillance needs In childhood there is ongoing refractory epilepsy, intensive allied health involvement, communication and mobility impairment, and full dependence for activities of daily living In adolescence and adulthood there is lifelong disability support, ongoing seizure management, functional plateau or regression risk, and high care dependency
DEE therefore requires continuous, coordinated, multidisciplinary support across the entire lifespan, not episodic intervention.
The proposed NDIS reforms, particularly tighter eligibility thresholds, increased reassessment requirements, stricter application of reasonable and necessary criteria, and more centralised planning controls, will have direct and harmful consequences for children like Stella.
For DEE, functional snapshot assessments are fundamentally inappropriate because presentation fluctuates with neurological instability. Tightened eligibility frameworks risk
Underestimating disability during stable assessment windows Missing regression that occurs outside assessment periods Reducing funding based on best day presentation rather than baseline function Increasing reassessment burden during medically unstable periods
In practical terms, this means support decisions may no longer reflect real functional need.
Increased reassessment and documentation requirements will also delay intervention. For children with DEE this is not administrative delay. It is developmental loss. Therapy delay during critical neurodevelopmental periods leads to
Loss of communication gains Reduced motor development Increased regression risk Permanent loss of skills that cannot be recovered
Stricter interpretation of reasonable and necessary funding risks removing or reducing
Preventative allied health input Early intervention services that maintain function Family training and capacity building Therapy that supports participation rather than only basic maintenance
For Stella, these are the supports that prevent deterioration, not optional extras.
The shift toward more centralised decision making and reduced planner discretion also reduces the ability to respond to clinical nuance in complex neurodisability. Children with DEE do not follow predictable pathways. They require responsive, flexible planning that reflects neurological change, not rigid administrative categories.
If technical advisory processes are increasingly used in decision making, there must be transparency regarding
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Submission 311
When technical advice is applied How it influences outcomes The reasoning behind decisions
Without this, families are left with decisions they cannot understand or challenge, even when those decisions are clinically significant.
There must also be genuine access to independent clinical expertise and review outside of the NDIA, including separation between decision making and review functions, and transparent reporting of Administrative Review Tribunal outcomes. If decisions are frequently overturned, this indicates system design issues rather than individual disputes.
Families of children with DEE are already the primary care system. We provide
Complex medical care and seizure response Feeding and nutritional management Therapy implementation and continuity Behavioural and sensory regulation support 24/7 monitoring and coordination of fragmented systems
There is no remaining capacity to absorb further reductions in formal supports. Any reduction does not create efficiency. It transfers risk to families until crisis occurs.
The NDIS must also explicitly recognise parental capacity building and whole family system support as essential components of disability support. Without this, families are expected to indefinitely sustain clinical, developmental, and coordination burden without adequate system support.
Australia is a signatory to the United Nations Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities. These frameworks guarantee
Right to development and early intervention Right to participation and inclusion Right to health and rehabilitation supports Right to non discrimination
Any reform that reduces access to essential supports for children with profound disability risks undermining these rights in practice.
There is also a critical need for better integration between the NDIS, state education systems, and early childhood education and kindergarten services. Families should not be required to bridge fragmented systems.
Children with DEE require coordinated supports within education settings, including allied health integration and reasonable adjustments to enable participation. Without this
Children are excluded or effectively segregated Participation depends on parental capacity rather than system design Inclusion becomes theoretical rather than real
True inclusion requires cross sector collaboration, not families compensating for system fragmentation.
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Submission 311
As an Occupational Therapist and senior health professional, I am trained to assess function in context, manage bias, and interpret lived experience alongside clinical presentation. This is essential in complex neurodisability where impairment is not always visible or stable across time. The same principles must be embedded in NDIS planning systems to ensure decisions reflect real world function, not administrative simplification.
Finally, I want to be clear about what this means in real life for Stella and children like her. If these reforms proceed without safeguards for complex neurodisability, the likely outcomes include
Reduced access to early intervention during critical developmental windows Increased regression in communication, motor, and cognitive skills Higher seizure related hospital admissions due to loss of preventative supports Increased parental burnout and family system strain Reduced participation in early childhood education settings Lifelong increase in support needs due to missed intervention opportunities
For Stella, this is not abstract policy change. It is a change in developmental trajectory.
I am writing this as both a health professional and a mother who is genuinely afraid of what these reforms may mean for my child’s future. Stella is not a system category. She is a child with a lifelong neurological condition who requires stability, coordination, and sustained support.
We need a system that recognises complexity, protects early intervention, enables inclusion, integrates across education and health systems, and upholds the rights and dignity of children with profound disability.
Sincerely,
A senior and experienced health professional and mother of Stella, advocating for children with complex, lifelong disability in Australia
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