Submission 166

Submission to the Senate Inquiry into the NDIS Amendment Bill / NDIS (Securing the NDIS for Future Generations) Bill

Introduction

I am the parent of two children, primary school aged, who are NDIS participants with Autism Spectrum Disorder Level 2 and PDA (Pathological Demand Avoidance) profiles.

Our family has been involved with the NDIS for the past five years. My daughter first presented with global developmental delay and hypotonia as a newborn.. Through early intervention supports funded by the NDIS — including physiotherapy, occupational therapy, speech therapy, play therapy and dietetics — she has developed so many skills and abilities that we once feared may never emerge. One of the most significant milestones was learning to walk independently.

The NDIS has fundamentally changed the trajectory of my children’s lives. It has provided them with opportunities to build skills, regulate emotions, participate in the community, and learn strategies to cope in a world that is often inaccessible and overwhelming for autistic children.

I am deeply concerned that aspects of the proposed reforms risk undermining the very supports that allow children like mine to participate safely and meaningfully in society.

Community Participation Supports Are Essential, Not Optional

I am particularly concerned about proposals or policy directions that may reduce access to community participation supports.

For autistic children, especially those with PDA profiles, community participation is not simply recreational. These supports are closely connected to mental health, emotional regulation, confidence-building, and long-term wellbeing.

Community participation support for my children looks like:

• emotional regulation support

• helping them gradually tolerate community environments

• building confidence and resilience

• reducing overwhelm and burnout

• helping them remain connected to the world around them

Submission 166

Without these supports, isolation increases rapidly. When autistic children become isolated, overwhelmed, or chronically dysregulated, the impacts extend far beyond social participation. It affects schooling, mental health, family functioning, and long-term independence.

I am deeply worried that reducing these supports would lead to significant decline for many disabled children and adults. Preventative support is far more effective and humane than waiting for crisis.

The Invisible Labour of Families Is Being Overlooked

I am also very concerned about the increasing expectation that families and unpaid carers will absorb more responsibility.

Parents of disabled children are already carrying an enormous and often invisible workload. Many families are burnt out, struggling financially, unable to maintain employment, and operating under constant pressure.

What is often misunderstood is that autistic children can appear to be coping externally because of the extraordinary amount of scaffolding happening behind the scenes. Or, no one is aware that the autistic children are not coping because the family are not able to leave the home or access informal community.

For many families, every aspect of daily life requires intensive support:

• showering
• eating
• dressing
• attending school
• social interaction
• emotional regulation
• transitions and routines

These things do not happen independently. They happen because carers, therapists, and support systems are constantly working to make participation possible.

When policymakers or assessors see a child attending school or appearing verbally capable, hey may incorrectly assume lower support needs. In reality, many autistic children are functioning only because families are providing relentless support at home.

Submission 166

If supports are reduced, it is not only the child who is affected. Entire families are pushed closer to exhaustion, financial strain, and crisis.

Concerns About Standardised Assessments and Generic Programs

I am particularly concerned about increased reliance on standardised functional assessments and generic group-based programs.

Children with autism and PDA profiles often do not perform consistently in formal assessment settings. Their presentation can fluctuate significantly depending on anxiety, environment, familiarity, sensory load, and demand levels. They may not even be able to attend the formal assessment setting.

Some autistic children also mask their difficulties in short interactions, which can lead assessors to underestimate their support needs.

Similarly, generic group therapy models or standardised programs may be completely inaccessible for children with PDA profiles. Supports that work for neurotypical children can actively increase distress, dysregulation, shutdown, or burnout in autistic children.

A one-size-fits-all approach risks excluding the very children who need support the most.

The Importance of Early Intervention

My family’s experience demonstrates the importance of early intervention.

Without access to therapies early in life, my daughter’s developmental outcomes could have been very different. Early support gave her opportunities that may otherwise have been lost.

Early intervention should not be weakened or treated as an area for reduction. It is one of the most valuable investments we can make, both for children and for society as a whole.

Recommendations

I respectfully ask the committee to consider the following recommendations:

1. Protect funding for social and community participation supports, recognising their role in
   mental health, emotional regulation, and long-term wellbeing.

2. Preserve access to early intervention supports for children with developmental
     disabilities and neurodevelopmental conditions.

3. Recognise autism and PDA profiles appropriately within NDIS policy and assessment
   processes, including fluctuating capacity, masking, and demand avoidance.

Submission 166

4. Avoid one-size-fits-all functional assessments that fail to capture the complexity of neurodevelopmental disability.

5. Preserve flexibility within NDIS plans so supports can be tailored to individual needs.

6. Avoid replacing individualised supports with generic group programs that may be inaccessible or harmful for some autistic children.

7. Reduce reassessment burden and repeated requirements for families to continually prove lifelong disability.

8. Recognise and address the strain placed on unpaid carers and families.

9. Ensure human decision-making, transparency, and meaningful review pathways remain central to the NDIS.

10. Address the real issues with the NDIS, with a focus on fraud

Conclusion

The NDIS has changed my children’s lives for the better. It has helped them develop skills, certainty, emotional regulation, and the ability to participate more safely in the world around them.

I understand the importance of ensuring the long-term sustainability of the NDIS. However, sustainability cannot come at the cost of removing the very supports that prevent crisis, isolation, family breakdown, and worsening disability outcomes.

I ask the committee to ensure that reforms are shaped by genuine understanding of disability and by the lived experiences of families who rely on these supports every day.

Thank you for considering my submission.