Submission to the Inquiry into the National Disability Insurance Scheme Amendment Bill

About Me

My name is Rizza , and I am the proud mother of two autistic boys—one diagnosed with Autism Spectrum Disorder (ASD) Level 3 and the other with ASD Level 2. Both of my sons have been participants in the NDIS since the Scheme began.

I live with my husband, who works full-time, and my mother, who has lived with us since my eldest son was born. I work part-time during school hours so I can balance work with school runs, therapy appointments and caring responsibilities.

Like many families, our lives revolve around helping our children develop the skills they need to become as independent as possible.

I am writing this submission because I am deeply concerned about how the proposed changes to the NDIS may affect not only my two sons, but many other families like ours.

Our Journey

From the moment my eldest son was born, life was different.

He cried constantly, slept for only two-hour stretches and needed to be carried almost continuously. He was extremely sensitive to light, sound and touch. He was later diagnosed with Autism Level 3.

For many years he was non-speaking and required constant supervision because he had little awareness of danger. He frequently injured himself or placed non-food objects into his mouth and ears. Everyday life required constant vigilance.

My younger son was later diagnosed with Autism Level 2.

Like his brother, he was initially non-speaking until around two to three years of age. With early intervention and therapy supported through the NDIS, his speech developed significantly.

Today he talks non-stop, has endless energy and is incredibly curious. However, he also masks his autism extremely well. Many people see a happy, capable child, but they don’t see the

anxiety **and mental exhaustion that comes from trying to fit into a world that doesn’t always understand him.

Although autism affects them differently, both boys experience ongoing challenges with sensory processing, emotional regulation, communication, executive functioning, motor skills and social interaction.

Their Strengths and Potential

My boys are incredibly intelligent.

Both have hyperlexia and taught themselves to read through their remarkable photographic memories and intense interests.

My eldest became fascinated with letters, colours, shapes and logos and learned to read independently.

My youngest memorised the periodic table at just three years old, then taught himself several alphabets including Russian, Greek and Serbian. Today he knows every country’s flag, has a passion for World War history and excels in mathematics.

Their disability has never defined their intelligence.

What they need is the right support to help them participate in everyday life.

The Difference the NDIS Has Made

The NDIS has transformed our family’s life.

After years of support from occupational therapists, speech pathologists, psychologists, physiotherapists, dietitians and dedicated disability support workers, my boys have achieved things we once thought were impossible.

Their therapists teach them new skills, but it is often their support workers who help them practise those skills in everyday life. Whether it is travelling on public transport, participating in community activities, developing social confidence or learning greater independence, support workers help turn therapy goals into real-life outcomes.

My eldest, who was once non-speaking, now communicates verbally. He prepares simple meals, showers independently, catches public transport with his support worker and helps around the house.

• My younger son is now a student representative, attends school camps, rides his bike independently, swims confidently and participates in community activities with his support worker.

• These achievements did not happen because autism disappeared.

• They happened because the right supports were provided consistently over many years.

• The NDIS has not created dependence.

• It has created independence.

The People Behind Our Success

The success my boys have achieved has never been the result of one person.

It has taken a village.

I am incredibly grateful to every occupational therapist, speech pathologist, psychologist, physiotherapist and dietitian who has supported my children over the years. Their expertise has helped my boys develop communication, emotional regulation, motor skills, confidence and independence.

I also want to acknowledge our disability support workers.

Support workers have become part of our village.

Many people think support workers simply supervise children or provide respite for parents, but they do so much more.

They help my boys put into practice the skills they learn in therapy by supporting them to access the community, develop friendships, build confidence, solve everyday problems and become more independent.

They have travelled on public transport with my eldest son, supported both boys to participate in community activities, encouraged them to try new experiences and celebrated every milestone alongside our family.

Most importantly, they have believed in my boys and encouraged them to believe in themselves.

Their role has been instrumental in helping my children work towards the futures they dream of and greater independence.

I also want to sincerely thank our Plan Managers.

Many people assume their role is simply to process invoices, but for our family they have been

so much more.

They have been my first point of contact whenever I have needed guidance about provider charges, NDS Pricing Arrangements and whether services align with NDIS policies and guidelines. Their support has given me confidence that my children’s funding is being used appropriately.

To our Support Coordinators—thank you.

You have helped organise my boys’ care team, coordinate meetings, advocate for my children and guide me through what can often feel like an overwhelming system.

In the early years I tried to manage everything myself. I organised services, monitored budgets, checked invoices and tried to understand every NDPS policy because I wanted to protect my children’s funding.

Eventually, the administrative burden contributed to severe burnout.

Accepting the support of our Plan Manager and Support Coordinator has allowed me to spend less time navigating paperwork and more time simply being a mum.

Every person in our care team has played an important role in helping my boys thrive.

The Impact on Our Family

Several years ago I experienced severe burnout and a mental health breakdown.

I was later diagnosed with Autism and ADHD myself.

Despite this, I have never applied for the NDPS because all of my energy has been focused on supporting my children.

My husband and I work as a team. He works full-time while I coordinate school, therapies, appointments and daily routines. We rarely spend time together because caring for our boys is effectively a full-time responsibility outside our employment.

Like many carers, we gladly do this because we love our children.

But we cannot do it alone.

My Concerns About the Proposed Bill

I understand that the Government wants to ensure the NDIS remains sustainable for future generations.

However, I am concerned that the proposed changes could unintentionally disadvantage families like mine.

My greatest concern is that my children’s progress may be interpreted as evidence they need less support. The opposite is true.

Their progress is the direct result of years of consistent therapy, community participation and individualised support funded through the NDIS.

If those supports are reduced because they appear more capable today, families risk being penalised for the very success the NDIS has helped create.

I am also concerned that standardised assessments may not accurately capture the needs of autistic children who mask their difficulties.

My younger son often appears capable to people who do not know him well, yet maintaining that appearance comes at an enormous emotional cost.

Autism is lifelong.

Support needs change over time, but they do not simply disappear.

Reducing therapy, support workers or community participation may place families under greater pressure, increase carer burnout and ultimately reduce participants’ independence rather than improve it.

Looking to the Future

As a parent of two children with lifelong disabilities, my greatest fear is not autism itself.

I am wondering what will happen when my husband and I are no longer here.

Everything we do today is about preparing our sons for adulthood.

My eldest dreams of one day working at McDonald’s and becoming a Metro train driver.

My youngest wants to become an engineer.

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Recommendations

I respectfully ask the Committee to consider the following recommendations:

• Do not reduce support simply because participants have made progress through the NDIS.
• Continue investing in therapies and capacity-building supports that promote lifelong independence.
• Recognise that autism is a lifelong disability and that many autistic people mask their difficulties during assessments.
• Ensure participants continue to receive sufficient funding for disability support workers where they are essential to achieving independence, community participation, safety and capacity-building outcomes.
• Recognise the value of Plan Managers and Support Coordinators in helping participants navigate the NDIS, safeguard funding, coordinate supports and reduce carer burnout.
• Consider the wellbeing of unpaid carers when assessing the broader impact of any proposed reforms.
• Ensure future reforms remain genuinely person-centred and are based on each participant’s individual needs rather than standardised assumptions.

Conclusion

My family is living proof that the NDIS changes lives.

It has helped my eldest son find his voice.

It has helped my younger son develop confidence and dream of becoming an engineer.

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It has allowed me to continue working, contribute to my community and become an education support worker because I wanted to give back to other families.

The progress my boys have made should never be viewed as evidence that they need less support.

It should be recognised as evidence that the NDIS is working exactly as it was intended.

I respectfully ask the Committee to ensure that future reforms continue to invest in children like my sons so they can grow into adults who are as independent, connected and fulfilled as possible.

My sons are not asking for special treatment—they are asking for the opportunity to continue building the skills they need to live independent, meaningful lives. The NDIS has given them that opportunity, and I hope future reforms will ensure it remains available for families like ours.

Thank you for considering my family’s submission.