Submission 45
Submission to the NDIA – NDIS Amendment (Securing the NDIS for Future
Generations) Bill 2026
Personal Circumstances and Lived Experience
I am a single parent caring for a child with complex disabilities. My child is unable to attend school despite repeated attempts across three different schools including support units.
My child has experienced:
- Bullying
- Physical assault at school
- Repeated suspensions
- Partial attendance arrangements that were not sustainable
- Being excluded from school activities and events
- Frequent distress calls requiring early collection Despite all the reasonable efforts, the school environment was not safe or appropriate for my child. As a result, I have been forced into homeschooling, not by choice but due to lack of viable alternatives.
My child:
- Cannot cope in public or noisy environments
- Will only engage with familiar individuals
- Frequently absconds, creating serious safety risks
- Experiences daily meltdowns
- Is unable to independently toilet, shower, prepare meals, dress or education This means my caring responsibilities are constant and intensive.
Impact on myself as a Parent with Disability
I also live with my own disabilities and receive no NDIS support.
I have:
- No family support
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- No informal supports or friends
- A current AVO in place for protection from a family member
- Ongoing sleep deprivation due to caring responsibilities I am effectively isolated at home and unable to participate in the community. I cannot afford to go out, and even if I can, our disabilities and safety prevent this.
System Failures
My experience highlights several critical failures within the current NDIS and broader service system:
- Failure to Support Families Holistically The NDIS treats participants in isolation. Children with complex disabilities rely entirely on their carer.
There is:
- No recognition of the carer’s disability
- No integrated support approach for families
- An assumption that informal supports exist when they do not
- Inappropriate Reliance on the Education System The expectation that children must attend school is unrealistic in complex cases.
Schools:
- Are not equipped to manage high support needs
- Exclude children when behaviours escalate
- Shift responsibility back onto parents This leaves families without adequate education, without support, and without alternatives.
- Lack of Recognition of Extreme Functional Impairment My child’s inability to perform basic daily tasks and regulate behaviour demonstrates significant functional impairment.
Submission 45
However:
- The system often underestimates these needs
- Reports may misrepresent the level of support required
- Funding decisions do not reflect real-world care demands
- Isolation and Risk to Carers Without adequate support:
- Carers experience burnout
- Mental and physical health deteriorates
- Risk of system collapse increases If I am unable to continue, there are no safeguards in place. My child would end up in state care. His father has not seen our child in over 5 years of his choice. We went through the entire family court process, which was just over 4 years in total.
Concerns About the Proposed Amendments
While the Bill aims to ensure sustainability, I am concerned it may:
- Further restrict access to necessary supports
- Increase reliance on informal supports that do not exist
- Reliance on mainstream supports which do not exist
- Tighten funding without understanding real-life complexity
- Penalise families already in crisis Cost-saving measures must not come at the expense of vulnerable families. Especially families that their child/ren cannot attend school. Forcing parents out of the workforce.
Recommendations
- Recognise Carers with Disability
- Automatic consideration of parent/carer disability in child plans
- Access pathways for carers who are clearly eligible but unsupported
Submission 45
- Fund High-Intensity In-Home Supports
- Where school is not viable, provide adequate in-home supports
- Recognise homeschooling in complex disability cases as a necessity
- Strengthen Accountability of Assessments
- Independent review of reports used in decision-making
- Consequences for inaccurate or misleading professional reports
- Reduce Reliance on Informal Supports
- Remove assumptions that family or community support exists
- Base decisions on actual circumstances, not theoretical ones
- Crisis Prevention Measures
- Early intervention for families at risk of breakdown
- Emergency supports for isolated carers
Conclusion
My situation is not unique. Families like mine are invisible in policy but living in crisis daily.
The NDIS must reflect real-world complexity, not idealised assumptions.
Without meaningful reform, the system risks failing those with the highest needs—while placing unsustainable pressure on carers who have no support left to give.