Submission 1573
Submission on the NDIS Amendment Bill
Name:
I am a: ☑ Family member / supporter ☑ Advocate
1. Introduction / my connection to this issue
We have been engaged with the NDIS through our children since 2022.
When my son started Prep, it became clear he was struggling, not just with learning, but with the basics of everyday life. His self-care skills were not at the same level as his twin brother. We initially funded therapy privately, believing we were fortunate enough to manage it.
What we quickly learned was that access to allied health is limited - especially in a regional area where we live, progress is slow and layered, and the cost is ongoing.
Cause → Effect:
Limited access + high cost → delayed and inconsistent support → increasing need over time
Even with two incomes, it became unsustainable.
Over the past four years, our lives have changed in ways we never anticipated. We now have two children diagnosed with Autism and ADHD with significant anxiety. also has Developmental Coordination Disorder.
On paper, our children look similar. In reality, they could not be more different.
This gap - between what a system can capture on paper and what a life actually looks like - is where this reform risks causing harm.
Submission 1573
2. My overall position on this Bill
☑ I have serious concerns / I do not support it
This Bill risks introducing rigidity into a system that must remain responsive to human lives that are anything but predictable.
Cause → Effect:
Rigid systems → delayed or inappropriate support → escalation of need → higher long-term cost (human and economic)
Disability, particularly in children, is not static. Needs unfold over time — sometimes gradually, sometimes suddenly, and sometimes in crisis.
⸻
3. My key concerns
☑ Community participation
Support workers are the bridge between care and independence
My son has learned through therapy how to understand his emotions and responses. But that learning does not happen in isolation.
It happens in real life - at the park, at the movies, in social settings other children take for granted.
Cause → Effect:
Therapy alone → insight without application
Support worker in community → safe practice → confidence → independence
There is a clear developmental progression:
Parental responsibility → Support worker scaffolding → Independence
Submission 1573
Support workers sit in the middle of this progression. Without them, children do not bridge the gap — they remain dependent for longer, sometimes indefinitely.
This is not a “nice to have.” It is the mechanism through which independence is built.
──
Children and evolving needs
Children do not grow in straight lines
and share the same diagnoses. Their needs are entirely different.
requires support across almost every life domain — self-care, safety,
communication, and daily functioning. His most recent assessment compares his needs to that of a toddler in some areas.
As grows, we are seeing new layers of need emerge.
Cause → Effect:
Development over time → widening gap from peers → emerging needs/diagnoses Static funding or assumptions → unmet need → increased dependency and distress
This is not a failure of the child — it is the reality of development. A one-size-fits-all or fixed model will fail children like because it cannot respond to who they are becoming.
──
System interaction
When one system changes, the child absorbs the impact In April 2025, experienced acute burnout.
Submission 1573
The only change in his life was that his school reduced his 1:1 support to a shared model.
Within 10 weeks, we lost our child as we knew him.
He went from:
- a happy, gentle and engaged learner
to
- a child unable to walk independently
- unable to leave the house
- unable to communicate or participate in family life
He was still physically present in our home, but not able to be part of it.
Cause → Effect:
Reduced school support → sustained overload → acute burnout → loss of function → increased NDIS and family support needs
This was not theoretical. It was a medical and functional crisis.
And in that moment, we did not experience “education” and “NDIS” as separate systems.
We experienced a child whose world had collapsed and a desperate need for those systems to respond together.
– ☑ Administrative burden
Why support coordination is essential.
I am a professional with experience in policy, systems, and workforce capability.
I now require a support coordinator to navigate the NDIS.
Cause → Effect:
Submission 1573
System complexity → families cannot self-navigate → reliance on intermediaries → funding diverted from direct support
Support coordination is not inefficiency — it is a necessary response to a system that has become too complex.
If someone like me cannot navigate it confidently, many others cannot either.
⸻
☑ Workforce participation
Childcare → NDS → employment
I have worked consistently throughout my adult life.
Before childcare reform, I could not increase my working hours without it costing more than I earned.
Reform changed that.
Cause → Effect:
Accessible childcare → increased workforce participation → economic contribution
I held onto my career through years of balancing work and parenting.
But when experienced burnout:
Cause → Effect:
Increased care + system navigation → unsustainable load → forced resignation
For the first time in my working life, I had to step away from employment.
We are now a one-income family.
Submission 1573
Without appropriate NDI S support, I will not return to the workforce.
This is not just a personal story. It is a direct economic consequence of how systems are designed and funded.
–
\x96 Long-term societal impact
Early support prevents future cost
What happens to children like mine matters beyond our family.
Cause \u2192 Effect:
Reduced support in childhood \u2192 unmet needs escalate
Escalation \u2192 disengagement from school \u2192 behavioural distress
Unmet needs in adolescence \u2192 increased risk (mental health crisis, justice system involvement)
We already know the trajectory for unsupported neurodivergent children.
And we already know the cost - financially and socially - of responding too late.
Reducing support now does not remove the problem. It shifts it to:
● the health system ● the education system ● the justice system ● and the broader community
Submission 1573
My lived / professional experience
I have built a career contributing to organisations and communities. I have worked hard to maintain employment while raising my children, even when it meant long days, childcare from a young age, and constant balancing.
We made decisions to create stability through education, steady work, contributing to our community and not relying on support unless it was truly needed.
And still, when reached burnout, it was not enough. I had to resign from my job in a field that is very much servicing the vulnerable, and something I loved to do.
That is the reality for many families. We do everything “right,” and still reach a point where the system determines whether we can continue to participate or not.
–
What I believe this Bill gets wrong
This Bill assumes that disability can be simplified.
It cannot.
It assumes support can be reduced without consequence.
They cannot.
It assumes systems operate independently. They do not.
When supports are reduced in one place, the impact is felt everywhere — most of all by the person at the centre.
Submission 1573
What needs to change or be protected
- Protect support worker access as the bridge to independence
- Maintain flexibility to respond to changing needs
- Recognise that children’s needs evolve over time
- Retain support coordination as essential, not optional
- Design reform with system interaction in mind, not in silos
- Focus on regulating providers and inefficiencies, not reducing participant supports
- Protect continuity of trusted allied health relationships
⸻
Final statement
This is not just about funding. It is about outcomes.
When supports are in place:
- children participate
- families contribute
- independence grows
When supports are reduced:
- families leave the workforce
- children disengage
- and costs are pushed downstream
The NDIS, when working as intended, is not a cost — it is an investment in people, in participation, and in the future of our communities.
I ask the committee to consider my lived experience when reviewing this Bill.