Submission 2062

Submission to the Senate Community Affairs Committee

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

I am writing as the parent and full-time carer of an 11-year-old disabled child with Autism Spectrum Disorder Level 3 and high support needs. I am deeply concerned about the impact the proposed NDIS Future Generations Bill may have on children with significant disabilities and on families already carrying very high daily care responsibilities.

While I understand the importance of ensuring the NDIS remains sustainable, I am concerned the proposed changes place too much emphasis on cost reduction without properly considering the long-term consequences for children with complex disabilities and the families supporting them.

The issue I am most concerned about is the proposed reduction in social and community participation supports.

For our family, these supports are not optional or recreational. They are essential disability supports that allow our child to safely participate in the community with appropriate supervision and support. Without a parent or trained support worker, our child cannot safely attend autism-specific programs, access community activities, or join everyday outings due to significant sensory dysregulation, communication difficulties, emotional overwhelm and safety risks. In practice, many outings require two adults for one child because one adult is often needed to support regulation and safety, while the other manages transitions, siblings, transport, or the environment.

Our child is already highly socially isolated because they now require full-time Distance Education after mainstream schooling became unsafe and unsustainable. We understand education is the responsibility of the education system, not the NDIS. Our concern is that when a child is educated from home for safety reasons, community participation becomes one of the only safe and structured ways for that child to practise social interaction, emotional regulation and participation outside the home.

Most opportunities for community participation, emotional regulation, social connection and skill development now occur through carefully supported disability-specific activities with a parent or trained support worker present.

The Disability Royal Commission warned that isolation, segregation and lack of support place disabled people at increased risk of harm, abuse and exclusion. Despite this, the proposed legislation introduces measures that may reduce community access, tighten eligibility and allow broad reductions to support categories before broader safeguards and foundational supports are properly established.

This is deeply concerning for families like ours because the practical effect may be greater isolation for disabled children already struggling to remain connected to their communities.

For our family, these are not theoretical concerns.

We spent years navigating reviews, evidence requests and the ART process to secure modest and evidence-based supports, including approximately 15 hours per week of support worker assistance and appropriate therapy funding. Even after years of reviews and appeals, the

Submission 2062

supports ultimately secured remained modest compared with the level of daily supervision, regulation and care required.

Those supports were not excessive. They were clinically recommended and necessary to maintain safety, emotional regulation, community participation and family sustainability.

Our child’s treating occupational therapist, psychologist and medical specialists consistently report that:

• gains remain fragile and dependent on consistent supports

• reductions in support would likely lead to regression

• community participation is essential for regulation and wellbeing

• continuity of supports is critical to maintain emerging independence and functioning

Importantly, our family does not rely on NDIS supports to avoid parental responsibility. I am the primary full-time carer and, after a three-year career break for caring responsibilities for our disabled child, I am now only able to work limited part-time hours, fewer than 23 hours per week, around our child’s support needs. My husband is in full-time work and provides significant care and support outside work hours, including evenings, weekends and community outings. This level of care and supervision is beyond what would reasonably be expected for a non-disabled child of the same age.

As a family, we provide the overwhelming majority of care ourselves: supervision, co-regulation, Distance Education support, therapy integration, personal care, sensory management, community safety and managing dysregulation across environments. The additional support worker hours allow our child to safely participate in the community, practise skills in real-world settings, and gradually build independence in ways that would otherwise not be possible.

The impact on our family has been significant. Both parents had established professional careers before caring responsibilities for our disabled child reshaped our working lives and reduced our incomes significantly. This is not a lifestyle choice. It reflects the real level of supervision and support required.

These supports are not about convenience. They help us continue caring safely and sustainably at home while reducing the risk of complete carer burnout.

I am concerned that reforms which expand reliance on “family” and “informal supports” are not neutral in their real-world impact. In our family, both parents provide care. However, in many households, the assumption that families can absorb more unpaid support falls most heavily on mothers, grandmothers and other women carers. It affects workforce participation, income, superannuation, health and long-term security.

There is also a broader workforce impact. Support workers, allied health professionals and small providers are part of the care infrastructure that keeps children like ours connected, safe and developing. Cuts to support work and community participation do not only affect participants. They also destabilise the workforce families rely on.

I am also concerned about proposed mechanisms that may allow broad reductions to categories of support, maximum funding levels, maximum therapy intensity, or worker-to- participant ratios. Information shared at a community forum by disability legal advocates explained that supports could still be assessed as reasonable and necessary, but the funding

Submission 2062

available may be reduced through broader category-based decisions. That creates real concern for families who rely on individualised planning, particularly where safety and community access depend on 1:1 support.

I am also concerned about the significant powers proposed for the Minister to set funding limits or intensity limits across whole categories of support. A category-level reduction may look administratively simple, but it cannot properly reflect the individual circumstances of a child whose capacity fluctuates depending on sensory load, environment, familiarity, regulation, sleep, distress and support consistency.

I am particularly concerned about functional capacity assessment requirements if they rely too heavily on one-off assessments or unfamiliar assessors. Our child does not engage reliably with unfamiliar adults. Capacity can look very different depending on whether the environment is familiar, whether the child is regulated, whether the assessor understands autism, and whether observations occur during a “good” or “bad” period. A single assessment risks missing the real day-to-day level of supervision and support required.

For children like ours, functional capacity must be assessed using evidence from treating clinicians, parents and people who know the child over time, not just a brief interaction with a stranger.

Many children with high and complex autism support needs are also not well represented in broad research cohorts. Families are concerned that “generalisable” evidence could be used to impose hard caps on therapy or support, even where participant-specific clinical evidence demonstrates ongoing need.

NDIA internal autism materials released under Freedom of Information processes acknowledge the risks of autistic burnout, sensory overload and functional regression where autistic people operate without appropriate supports and accommodations. These risks are directly relevant to children like ours, who already experience high levels of sensory overload, dysregulation and social isolation.

At the same time, reforms focused mainly on reducing participant supports risk overlooking broader contributors to Scheme cost pressures, including fraud, price inflation and poor provider practices.

Families like ours are not the cause of unsustainable growth in the NDIS.

We are trying to keep our children safe, connected to the community, emotionally regulated and able to build skills over time with evidence-based supports recommended by treating professionals.

I ask the Committee to ensure the legislation:

• protects social and community participation supports
• preserves individualised planning
• maintains meaningful review and appeal rights
• properly considers participant-specific clinical evidence
• ensures functional capacity assessments do not override longitudinal evidence from treating professionals and families

Submission 2062

-recognises the sustainability of informal care -considers the gendered impact of shifting more unpaid disability-related care onto families -protects the disability support workforce that families rely on -does not reduce supports for people with significant disability through broad category- based cuts disconnected from individual need

This is not about luxury or convenience.

It is about whether children with significant disability remain connected, supported and safe within their communities.

The long-term sustainability of the NDIS should not come at the cost of greater isolation, reduced safety, carer burnout and poorer life outcomes for children with significant disability who rely on these supports to participate in their communities.

Thank you for considering this submission.

Wentworth electorate