National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 787
Introduction
I am a parent to three children who are NDIS participants: my ten-year-old identical twin daughters and my eight-year-old daughter. All three have diagnoses of co-occurring neurodevelopmental conditions, including Autism Spectrum Disorder (Level 2) and ADHD. Two have significant Sensory Processing Disorders, two have co-occurring Dysgraphia and Dyslexia, and one has Developmental Coordination Disorder (Dyspraxia).
These are not isolated conditions. My children experience complex, overlapping impairments that cannot be separated and that significantly affect their daily lives. Their needs span emotional regulation, sensory processing, motor coordination, communication, and social interaction. These challenges interact with each other and often amplify each other.
As their parent, I provide intensive daily support across all areas of their functioning. I am also responsible for navigating the NDIS system, coordinating supports, advocating for their needs, and managing the cumulative impact of caring for three children with disability.
Increased expectations on unpaid carers
One of my primary concerns with the proposed amendments is the increased expectation placed on families and unpaid carers.
As a parent of three children with disability, my caring responsibilities exist on multiple levels. Each individual child requires significant daily support. However, all three children call for a cumulative degree of daily support, which may compound the demand or be in competition with each other.
The NDIS typically assesses each child individually. While this is important, it does not reflect the reality of caring for multiple children with disability at the same time. My capacity as a parent does not increase because there are more needs—it is divided across them.
Similarly, my informal support network does not expand simply because I have multiple children requiring support. The same finite resources—time, energy, external supports—are being stretched across all three children.
This becomes critical when determining what is considered “reasonable” for a parent to provide. One-to-one care and three-to-one care are not the same. What may appear reasonable in isolation for one child becomes unreasonable and unsustainable when applied across multiple children with significant and ongoing needs.
Without recognition of this cumulative load, the system places unrealistic expectations on families and risks transferring formal support responsibilities onto unpaid carers in a way that is neither fair nor sustainable. If a carer has no capacity for one child, all children are impacted. Over time, this creates a sustained level of pressure that is difficult to maintain safely or sustainably, both for me as a parent and for my children.
Challenges in applying the law and interpreting evidence
I recently applied for a change of circumstances for my two ten-year-old daughters. They had both been granted access six months previously using a diagnostic report of one condition to demonstrate impairment. I was pleased and grateful for the package provided.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 787
However, as we commenced therapies, the degree of impairment and impact on daily life began to emerge. Each was diagnosed with broader co-occurring conditions. The demands in their daily lives shifted significantly, and their skills could not match those demands. It was clear through lived experience, and supported by clinical reports, that their level of need far exceeded that of same-aged peers and the provisions in their plans. Their functioning was regressing rapidly, and I could not meet the level of their daily needs alongside broader complexities.
The purpose of the change of circumstances was to demonstrate this shift in functional capacity and informal support. I provided multiple clinical reports and a detailed carer impact statement outlining:
• the level of care required across all three children • the specific needs of each child • the cumulative impact on me as their primary carer
For one child, the application was declined outright without any discussion. I was given written notice that I had not provided sufficient evidence and that the supports requested fell within typical parental responsibility.
For the other child, I was contacted directly and told that caring for a 10-year-old is the responsibility of a parent. When I attempted to explain that the level of care required went beyond what is typical, I was told that my explanation did not align with my evidence.
It became clear that the issue was not a lack of evidence, but a lack of recognition and understanding of what that evidence meant in practice.
However, I was able to advocate for the release of funds for a functional capacity assessment. That assessment showed that my child’s functional capacity is lower than 99% of same-aged peers.
This demonstrates both the extent of the need and the gap in how evidence is interpreted. It should not require extensive and costly assessments to validate what parents—supported by clinical evidence—are already describing accurately.
Challenges in recognising same-aged benchmarks and substantial supports
I have also experienced a significant gap in the NDIS’s ability to understand what is developmentally typical, and therefore to appropriately determine what constitutes “reasonable” versus “substantial” supports.
When I applied for core supports to assist with daily living and community participation, I outlined a number of barriers. These were dismissed on the basis that supporting a 10-year- old child in these areas is a parent’s responsibility.
However, this interpretation does not reflect the reality of what is required. I want to be able to support my child in a way that is reasonable and meets her needs. But the current expectations do not achieve this—they leave both of us exposed, vulnerable, and exhausted.
For example, consider what it means for my daughter to attend a birthday party. For most parents of a 10-year-old, this involves dropping their child off and returning later. That is not my reality.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 787
For a two-hour party, I need to:
• remain present for the entire duration • support my child to enter and engage in the environment • respond to sensory overwhelm • assist with emotional regulation, including processing social interactions or providing physical regulation • remain constantly available, whether or not my child seeks help
After the event, my child is often extremely fatigued from the effort required to navigate social interactions. This frequently results in meltdowns.
This is not a typical community participation activity. It involves:
• sustained supervision • complex scaffolding of skills • high emotional and cognitive load • significant time before, during, and after the activity
It also requires skills that go beyond those expected of a typical parent. It is emotionally demanding to constantly assess, anticipate, and respond in real time, knowing that without that support, my child will struggle to participate or feel safe.
Despite this, the NDIS classified these support needs as “parental responsibility”.
I want to be clear: I want to parent my children. But the level of demand placed on me is not reasonable when it exceeds typical parenting expectations by such a significant margin.
As a result:
• I become overextended • my children’s needs are not fully met • access to the community becomes limited for both myself and my children • risk of distress, dysregulation, and social exclusion increases
There is currently no consistent way for parents to communicate this level of complexity in a way that is reliably recognised within the system.
What can be overlooked by others
There are aspects of raising a child with disability that are difficult to see without lived experience.
There is often a deep sense of isolation. The demands that both the parent and the child are carrying are largely invisible. When a child struggles, it is frequently interpreted as behavioural or as a reflection of poor parenting, rather than a manifestation of disability.
This creates an additional layer of judgement, at a time when you are already working intensely to support your child. You can find yourself isolated not only because of the load you are carrying, but because of a lack of understanding from others.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 787
What is overlooked by the NDIS
There is also a cumulative impact of having to continually prove the legitimacy of your experience. Within the NDIS system, there is a requirement to demonstrate that your challenges are significant. This creates a tension where you are told, implicitly or explicitly, that you should be able to manage—while at the same time living the daily reality that you cannot meet your child’s needs without appropriate support.
You are left constantly bridging that gap, often at personal cost, and then picking up the pieces for your children when their needs exceed what you can sustainably provide.
The concept of “parental responsibility” assumes a baseline that does not exist for many families. The level of supervision, intervention, skill, and time required can be continuous, intensive, and highly specialised. It is not comparable to typical parenting of a same-aged child.
The effort required for children with disability to participate in everyday activities is often invisible. What appears to be a simple or routine activity—such as attending a birthday party—can require significant preparation, in-the-moment support, and recovery afterward. Without that support, participation either does not occur or comes at a substantial cost to the child’s wellbeing.
There is an assumption that families will absorb unmet need. In reality, when formal supports are not provided, the demand does not disappear—it shifts. It is absorbed by the child, through distress and reduced participation, or by the carer, through exhaustion, burnout, and reduced capacity to meet even basic needs.
When caring for multiple children with disability, these pressures compound. The expectation that families can meet these needs without formal support does not reflect the reality of finite time, energy, and resources.
Without a clearer understanding of these realities, there is a significant risk that policy settings will underestimate need and overestimate informal support capacity.
Recognition of evidence and the need for netter Tools
My experience highlights a broader systemic issue: the gap between the evidence provided by families and how that evidence is interpreted.
At the point of access, diagnostic reports provide a baseline of impairment. However, they do not capture the day-to-day functional impact.
It is only through lived experience—and later through detailed assessments—that the true level of need becomes visible.
While I support the use of functional capacity assessments to be able to highlight some of the daily needs and complexities, it is not reasonable that:
• recognition of need depends on access to expensive assessments • parent-provided evidence is consistently discounted • non-specialist decision-makers are required to interpret complex presentations without adequate tools
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 787
There needs to be:
• structured tools for parents to describe daily functional impact • consistent frameworks for interpreting this evidence, with transparent and accountable decision-making • clear benchmarking against functional capacity • improved training and guidance for decision-makers
Without this, the system will continue to undervalue both specialist evidence and lived experience, misinterpret need, and misalign resources.
Recommendations
I respectfully recommend that the Senate Committee:
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Require the NDIS to consider cumulative carer load Decision-making must account for the total demands on carers supporting multiple participants, not assess each child in isolation.
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Clarify the boundaries of “parental responsibility” Guidance must distinguish between typical parenting and the significantly elevated care required for children with complex disability.
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Improve recognition of lived experience evidence Parent-provided evidence should be a valid and consistently recognised source of information regarding functional impact.
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Introduce structured assessment tools Develop tools that allow families to clearly communicate daily care demands and enable consistent interpretation by the NDIS.
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Ensure functional assessments complement—not replace—lived evidence Functional capacity assessments should support, not gatekeep, recognition of need.
Conclusion
My experience is not about isolated decisions—it reflects a broader issue in how need, responsibility, and support are understood.
Without reform in how evidence is recognised and how carer responsibilities are assessed, changes to the legislation risk increasing pressure on families while reducing access to essential supports.
I want to parent my children, and to do so in a way that is sustainable, safe, and allows them to participate in the world alongside their peers.
It is critical that the NDIS recognises the difference between what is reasonable and what is simply being expected because there is no alternative.
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