National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

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 themwith 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 supportsthat allow children like mine to participate safely and meaningfully in society.

Community Participation Supports Are Essential, Not Optional Iam particularly concerned about proposals or policy directions that may reduce access toc ommunity participation supports.For autistic children, especially those with PDA profiles,community participation is not simply recreational.These supports are closely connected tom ental health, emotional regulation,

confidence-building,and long-term wellbeing.Community participation supportformychildren lookslike:

• emotionalregulationsupport

*helpingthemgraduallytoleratecommunities environments *

*buildingconfidenceandresilience *

*reducingoverwhelmandburnout *

• helpingthremainconnectedtotheworldaroundthem*

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

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. 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 externallybecauseofthe extraordinary amount ofscaffolding happening behindthescenes.Or,nobodyis awarethatautisticchildrenarenotcopingbecausethefamilyarenottabletoleavetheshomeor accessinformalcommunity.Formanyfamilies,everyaspectofdaylliferequiresintensivesupport:

• showering
• eating
• dressing
• attending school
• social interaction
• emotional regulation -transitionsandroutinesThese things do not happen independently.Theyhappen because carers, therapists ,andsupport systems arconstantly workingtomakeparticipationpossible.When policymakersorasessors see a childattendingschoolorappearingverballycapablethey may incorrectly assume lower support needs.In reality,many autisticschildrenarerfunctioning onlybeacause familie sareprovidinglentlesssuppor tathome.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

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:

• Protect funding for social and community participation supports, recognising their role in mental health, emotional regulation, and long-term wellbeing;
• Preserve access to early intervention supports for children with developmental disabilities and neurodevelopmental conditions;
• Recognise autism and PDA profiles appropriately within NDIS policy and assessment processes, including fluctuating capacity, masking, and demand avoidance.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 166

• Avoid one-size-fits-all functional assessments that fail to capture the complexity of neurodevelopmental disability.
• Preserve flexibility within NDIS plans so supports can be tailored to individual needs.
• Avoid replacing individualised supports with generic group programs that may be inaccessible or harmful for some autistic children.
• Reduce reassessment burden and repeated requirements for families to continually prove lifelong disability.
• Recognise and address the strain placed on unpaid carers and families.
• Ensure human decision-making, transparency, and meaningful review pathways remain central to the NDIS.
• 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 confidence emotional regulation , an dthe ability t o participate more safely in th e world around t hem . I understand the importance of ensuring long-term sustainability of ndis however, sustainability cannot come at cost removing very suppor ts prevent crisis isolation family breakdown worsening disabilit y outcomes .I ask committee ensure reforms shaped by genuine understanding disabilities and lived experiences f amilies rely these support every day .Thank you considering submission.