National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1078
May 2026
Submission to the Senate Inquiry
Inquiry: The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I am the parent of an 8-year-old NDIS participant with autism (Pathological Demand Avoidance (PDA) profile) and ADHD. My child has been on the NDIS since approximately four years of age and currently relies on speech therapy, psychology, occupational therapy and positive behaviour support. I have also recently requested additional support worker funding due to a significant escalation in unsafe behaviours within the home and increasing family crisis.
This submission specifically addresses concerns regarding proposed changes to reasonable and necessary supports, reduced access to social and community participation funding, increased reliance on unpaid carers, the use of automated decision-making, increased reassessment and administrative burden, and expectations that families rely on mainstream systems before accessing disability supports.
I am deeply grateful for the supports the NDIS has provided. Without them, my child would not have made the progress they have in communication, emotional regulation and participation in daily life. However, I am extremely concerned that aspects of the proposed reforms under the NDIS Amendment Bill risk causing significant harm to children and families like mine.
Social and community participation funding is a reasonable and necessary support for my child’s disability. It is not discretionary or recreational support. My child currently cannot safely access the community without support. These supports allow my child to leave the house safely, practise skills learned in therapy, build social capability, and experience inclusion in the community. As a single parent with two children, I cannot physically or emotionally manage these activities alone.
Reducing access to these supports would not increase independence. It would isolate disabled children further and place unsustainable pressure on families already at breaking point.
There appears to be an increasing assumption within reforms that unpaid family carers can absorb gaps in support. In reality, many families cannot continue carrying additional responsibilities without serious consequences.
I have exhausted my carer’s leave and am now taking unpaid leave due to my child’s escalating needs and reduced school attendance. My child is currently unable to attend school more than three days per week and is experiencing autistic burnout. The ongoing
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1078
instability places my employment, financial security and housing stability at risk. I do not receive child support and am the sole income earner for my family.
This pressure also impacts my younger child, whose wellbeing is affected by the stress and instability within our home.
My child has recently developed self-harming behaviours and there has been a significant increase in physical aggression during periods of distress, including hitting, kicking and unsafe behaviours involving throwing household objects and knives. These behaviours are not the result of poor parenting or a lack of effort. They are indicators of a nervous system under extreme stress.
Despite being in crisis, we continue to face lengthy delays, administrative barriers and uncertainty while trying to access increased supports through the NDIS. Families should not have to reach breaking point before receiving help.
I am also deeply concerned about any move toward automated decision-making within the NDIS.
Autism is not one uniform experience, and PDA profiles in particular are poorly understood within many systems. Emerging international literature increasingly recognises PDA as involving extreme anxiety, demand avoidance, nervous system dysregulation and highly individualised support needs. Standard behavioural approaches often fail these children and can worsen distress.
There is currently limited Australian research and recognition regarding PDA, but lack of evidence is not evidence of absence. Many conditions affecting disabled people remain under-researched, particularly where children, women and complex neurodevelopmental presentations are concerned.
Automated systems cannot adequately assess the nuance, complexity and contextual factors involved in disability support decisions. There are also well-established concerns internationally regarding bias within algorithmic decision-making systems, particularly where datasets are incomplete or populations are poorly represented.
I am concerned that automated or overly rigid processes will disadvantage children whose disabilities do not fit neatly into standardised frameworks.
I am also concerned about reforms that place greater emphasis on accessing mainstream or community services before disability supports are approved. In our experience, mainstream systems have neither the expertise nor capacity to safely support a child with complex autistic and PDA-related needs. Public waitlists for support are often years long, despite strong evidence that early intervention is critical to long-term outcomes.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1078
One of the most difficult aspects of the current NDIS system is the constant need to prove disability and justify support needs. The system often feels highly medicalised, deficit-focused and traumatising for families and children.
Children can hear adults repeatedly discussing what they cannot do, how impaired they are, and why they need help. This has real psychological impacts.
At the same time, families are forced to navigate enormous complexity with little meaningful guidance. In my experience, Local Area Coordinators often function primarily as communication channels rather than skilled navigators who can genuinely help families identify appropriate supports for complex needs.
The supports that have worked best for my child have come from my own extensive research and persistence, not from coordinated system guidance.
Importantly, flexibility matters. Children’s capacity fluctuates. At times, my child can tolerate more therapy, and at other times therapy intensity must reduce to avoid further burnout. I worry that families are increasingly pressured to fully utilise budgets out of fear future funding will be reduced, even when pacing support more carefully would lead to better long-term outcomes.
The consequences of reducing support will not disappear. Costs will simply shift elsewhere.
Without adequate early intervention and disability supports, Australia will likely see increased pressure on emergency departments, mental health systems, schools, child protection services, income support systems and housing services. Parents will leave the workforce. Carer burnout will increase. Families will break down under pressure.
This is not only a disability issue. It is a social and economic issue.
Australia also has obligations under the United Nations Convention on the Rights of Persons with Disabilities and the Convention on the Rights of the Child. Disabled children have the right to participate in community life, access appropriate supports, receive education safely, and live with dignity. Policies that reduce access to meaningful supports risk undermining these rights.
I respectfully ask the Committee to consider the following recommendations:
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Protect access to social and community participation supports for children with complex disabilities.
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Ensure automated decision-making is not used for complex eligibility, funding or support determinations without strong human oversight.
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Improve recognition and understanding of complex autistic presentations, including PDA profiles and fluctuating capacity.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1078
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Reduce administrative burden and delays for families in crisis.
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Implement trauma-informed approaches across the NDIS, particularly for reassessments and evidence gathering.
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Recognise and address the economic and mental health impacts on unpaid carers and single-parent families.
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Preserve flexibility within plans so therapy intensity can respond to a child’s changing capacity without fear of funding reductions.
The NDIS has made a meaningful difference in my child’s life and our family’s wellbeing. I am grateful for the support we have received. However, reforms that prioritise cost reduction over lived reality risk causing significant long-term harm to disabled children and their families.
I ask the Committee to ensure that future reforms protect the dignity, safety, participation and human rights of people with disability and the families who support them.