Submission 2084

Submission to the Senate Community Affairs Legislation Committee – Inquiry into the National Disability Insurance Scheme Amendment (Getting the NDS Back on Track No. 1) Bill 2024

I am the parent of a 9-year-old autistic child with a PDA profile, ADHD, and anxiety. I am making this submission anonymously to share our family’s lived experience with the NDIS and our concerns about the direction of the proposed reforms.

Our family has been involved with the NDIS since 2024. Prior to this, we privately funded limited therapy supports from 2022 while trying to support our child without adequate assistance.

My child currently attends a specialist school after experiencing significant trauma within a mainstream school setting that was unable to appropriately meet even basic disability adjustments. During this period, my child experienced severe anxiety and dysregulation at school. Sensory needs and accommodations were not consistently understood or implemented, which resulted in repeated distress, full meltdowns, and episodes of absconding from classrooms and school environments. These behaviours were not “bad behaviour”, but signs of a child in significant distress whose disability needs were not being safely supported.

During this time, my child was out of school for approximately three months due to mental wellbeing concerns. This experience reinforced for our family that mainstream educational settings cannot simply replace specialised therapeutic and disability supports. The external therapy and behaviour support funded through the NDIS became essential in helping my child rebuild trust, emotional safety and capacity to engage in learning again.

The NDIS has not provided luxuries to our family. It has provided access to therapies and supports that have improved my child’s safety, emotional regulation, learning, social understanding, and overall wellbeing. It has also reduced pressure on our family and prevented further escalation and crisis.

Our first NDS plan included occupational therapy, speech therapy and psychology, however the funding amount was insufficient to allow regular access to all recommended supports. Our most recent plan includes occupational therapy, speech therapy, behaviour support and support work, and the difference this has made to our child’s life has been significant.

Occupational therapy has helped my child identify sensory needs, understand how different environments impact functioning, and develop practical strategies to regulate emotions and the nervous system. It has also helped my child understand their neurotype in a positive and affirming way, improving self-esteem and reducing shame around being autistic.

Speech therapy has supported my child to navigate social relationships and friendships, identify positive and safe friendships, understand consent and personal space, and recognise when another person may feel uncomfortable. These are

Submission 2084

critical life skills for vulnerable autistic children and cannot simply be taught through standard classroom learning.

Behaviour support has helped our family and child understand the causes of emotional distress and dysregulation, identify triggers and preventative strategies, and reduce fight-or-flight responses. This has created safer environments for both our child and the people around them.Behaviour support has also assisted teachers and school staff to better understand how to provide appropriate support within educational settings.

Support workers have helped my child rebuild trust in other people after traumatic school experiences, re-engage with the community, leave the house more confidently, and participate in activities that support emotional regulation, concentration and learning readiness.

My child’s transition to the current specialist school has only been successful because of the combination of reduced school hours, appropriate disability supports, therapeutic intervention, and consistent support workers.These supports have helped my child feel emotionally safe enough to re-engage with education and the community after significant school trauma.

Support workers have also played an important role in helping my child regulate after school, rebuild trust in others, and participate in activities that support learning readiness and emotional wellbeing.Without these supports, our family’s ability to maintain employment and family stability would be significantly impacted.

This highlights the broader role the NDIS plays not only in supporting disabled children directly, but in preventing family burnout and allowing families to remain connected to work and community life.

Importantly, consistent access to therapy and support through the NDIS has allowed us to reduce medication.We saw significant improvement once regular therapy became financially accessible compared to the minimal privately funded therapy we were previously able to afford.

Our experience has shown that consistent therapeutic and disability supports are far more effective, humane and cost-effective than waiting until children and families reach crisis point before help is provided.

One of my greatest concerns with the proposed reforms is the increasing burden placed on families to repeatedly prove permanent disabilities and justify supports through ongoing reports and assessments.

Families are being required to spend thousands of dollars on Functional Capacity Assessments and supporting reports simply to continue accessing supports for lifelong disabilities.Allied health therapy itself already costs close to $194 per hour. Every hour of funding spent on unnecessary evidence gathering and reassessment is funding taken directly away from therapy and practical support that improves a child’s daily functioning and wellbeing.

Submission 2084

The current system already places enormous emotional and financial strain on families. Requiring repeated reassessment for permanent disabilities does not improve outcomes for children. It simply redirects funding away from therapeutic intervention and into administration.

I am also deeply concerned about the increasing expectation that mainstream systems, particularly schools, should provide supports that are currently funded through the NDIS.

Our family’s experience demonstrates why this approach is unrealistic and potentially harmful. My child experienced significant trauma within a mainstream school environment that could not appropriately accommodate disability needs despite repeated attempts to seek support and adjustments.

The suggestion that schools can replace specialist disability supports does not reflect the reality many families experience. Teachers and schools are already under pressure and often do not have the specialist training, resources, time or therapeutic relationships required to support complex autistic children, particularly those with PDA profiles.

For children like mine, trust and emotional safety are essential foundations for engagement and learning. Therapy success has depended heavily on being able to choose professionals who understand this neurotype and with whom a trusting relationship could develop. My child is highly sensitive to unfamiliar people and environments. Finding the right therapy team has been critical to progress.

I am concerned about any reforms that reduce participant choice and control over who provides support or how support is delivered.

For my child, therapy delivered at home has been significantly more effective than clinic-based or school-based support. Familiar and emotionally safe environments allow engagement, regulation and participation in ways that are often not possible elsewhere. Flexibility in how supports are delivered has been essential to achieving positive outcomes.

I also worry about reforms that may unintentionally punish families whose children do not fit neatly into traditional disability presentations. Children with autism, anxiety and PDA profiles often require highly individualised, relational and flexible approaches. Progress is rarely linear, and engagement can depend entirely on trust and nervous gystem safety.

Without continued access to consistent and appropriate supports, I believe there is a significant risk of increased distress, school disengagement, social isolation, behavioural escalation, family burnout, and greater reliance on crisis services and medication. These outcomes are not only harmful for children and families, but ultimately more costly for society.

The NDIS has allowed our family to move from crisis management toward stability, understanding and prevention. That progress should not be undermined by reforms

Submission 2084

that reduce flexibility, increase administrative burden, or assume mainstream systems can fill gaps they are not currently equipped to manage.

I respectfully ask the committee to consider the following recommendations:

• Reduce unnecessary reassessment and reporting requirements for permanent disabilities.
• Ensure funding is directed toward direct therapeutic support rather than excessive administrative evidence gathering.
• Protect participant choice and flexibility in selecting providers and determining how supports are delivered.
• Recognise the importance of therapeutic relationships, emotional safety and individualised approaches for autistic children, including those with PDA profiles.
• Avoid relying on mainstream schools as substitutes for specialist disability supports.
• Ensure reforms do not shift increasing responsibility onto unpaid carers and families already under significant pressure.
• Protect access to early intervention and consistent supports that prevent crisis and long-term escalation.

Thank you for the opportunity to provide this submission and consider the lived experiences of families navigating disability support systems every day.

While there is always room to improve the NDIS, reforms must not lose sight of the real people affected by these decisions. For families like ours, these supports are not optional extras. They are the difference between survival and stability, between isolation and participation, and between ongoing trauma and genuine progress.