Submission 1895
To the Committee,
RE: Submission to the Parliamentary Inquiry – National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I am writing to urgently seek your assistance regarding the National Disability Insurance Scheme (NDIS) funding situation for my daughter, , who is a 3-year-old child with complex, lifelong disabilities and significant medical needs.
Over the past several weeks, our situation has become increasingly critical due to severe funding restrictions and a disconnect between specialist recommendations and the supports being approved. Despite extensive evidence provided, is not receiving the level of funding required to meet even her basic therapy and safety needs.
was born extremely prematurely at 26 weeks following repeated missed opportunities in the management of preterm labour. She now lives with left-sided hemiplegic cerebral palsy (predominantly dystonic), hydrocephalus with a VP shunt, global developmental delay, severe feeding difficulties, significant speech and communication delay, and severe self-injurious behaviours. She is highly dysregulated and requires constant supervision due to significant safety risks.
She requires ongoing intensive multidisciplinary therapy including physiotherapy, occupational therapy, speech pathology, feeding therapy, behavioural support, and support worker assistance trained in complex disability and medical care. These supports are not optional — they are essential for her safety, development, and long-term functional outcomes.
Despite this, the current NDIS plan is fundamentally inadequate.
We have provided extensive documentation including carer impact statements, 24-hour care schedules, burnout assessments, and more than 15 specialist reports. These clearly outline ’s level of need and recommend ongoing weekly therapy, particularly for speech and feeding. However, not even one consistent weekly hour of speech or feeding therapy has been funded despite clear clinical recommendations.
Instead, the plan appears to rely on weekly occupational therapy, physiotherapy, and intensive therapy blocks totalling approximately 9 weeks across the year, including speech input, as though this is sufficient to meet her ongoing developmental needs. This is not consistent with specialist advice and does not reflect the reality of a child with severe neurological and developmental disability.
We are currently undertaking an intensive therapy block because early intervention is critical for ’s development. However, once this is completed, we will be left with approximately 9 weeks of the 3-month funding restriction block where we have no funding to
Submission 1895
continue essential therapy supports. This creates a direct risk of regression during a critical stage of brain development.
We are also unable to access necessary equipment trials and assistive technology supports because there is no funding available for the required assessment reports. This effectively means that even when clinicians identify essential equipment, we cannot progress because the system does not fund the pathway required to access it. We currently have two equipment trials that need to be completed within the next two weeks, however we cannot obtain the reports required to secure the equipment because there is simply no funding available for report costs.
I am also a single parent managing the entirety of ’s complex care needs largely on my own. The daily load is overwhelming and includes constant therapy implementation, feeding management, medical monitoring, behavioural escalation management, appointments, sleep deprivation, and ongoing advocacy. The NDIS process itself has become an additional full-time burden on top of already extremely complex care demands.
Another significant issue is our location in Tamborine, which is relatively remote for disability services. Support workers are routinely required to travel at least 40 minutes each way to reach our home. This travel time is not appropriately accounted for in ’s funding. As a result, approximately two hours of each support shift is effectively lost to travel, significantly reducing the actual funded support hours available to her.
I also need to raise serious concern regarding ’s escalating self-injurious behaviours, including severe head-banging and head-dropping episodes. These behaviours are increasing in both frequency and severity and are now also placing me at physical risk when I intervene to keep her safe.
These behaviours present an extremely serious medical risk due to her VP shunt. has already undergone six brain surgeries. We have specialist documentation supporting PBS-funded behavioural intervention specifically to reduce these behaviours due to the risk of shunt damage, further neurological injury, and the potential need for additional brain surgery. Despite this, the request has been denied by the NDIS.
At present, there are no funded behavioural supports in place to manage or reduce these behaviours. This leaves a dangerous and critical gap in her care plan and places both and myself at ongoing risk.
I am deeply concerned that despite overwhelming evidence, specialist recommendations are not being reflected in the funding decisions being made. At times, it genuinely feels as though the reports and recommendations provided are not being fully read or properly considered in the planning process, given the enormous gap between
Submission 1895
clinical recommendations and the actual funding outcomes being approved.
is a child who will rely on the NDIS for her lifetime. The current level of underfunding during these critical early developmental years will not reduce long-term costs — it will increase them. Without appropriate early intervention, her future support needs will become significantly higher, and opportunities to build functional skills during the most important developmental window may be permanently lost.
I am now reaching the point where, without urgent intervention, I will have no option but to seek public donations and create a GoFundMe simply to try to access basic therapies, equipment reports, and essential supports for my daughter. As a parent, it is devastating to be in a position where clinically recommended therapies and reports cannot be accessed through the very system designed to support children with profound disabilities. Families should not be forced to rely on begging strangers for help in order to access fundamental developmental and safety supports for their child.
I am respectfully asking for your urgent assistance in:
- Reviewing ’s current NDIS funding
- Advocating for removal of the restrictive 3-month funding limitation
- Ensuring funding reflects specialist clinical recommendations
- Supporting urgent access to behavioural intervention funding
- Ensuring therapy funding includes ongoing weekly speech and feeding therapy as recommended
- Addressing the lack of consideration for regional travel impacts
- Assisting with urgent review before further developmental regression occurs
This situation has now reached a critical point. I am doing absolutely everything possible to support my daughter, but the gap between her needs and the support being provided has become so significant that it is no longer sustainable without urgent intervention.
Thank you for taking the time to read this. I would be incredibly grateful for the opportunity to provide any supporting documentation or discuss ’s needs further if required.
Yours sincerely,
’s Mum