I am a proud parent of 4 amazing, intelligent, kind, thoughtful, loving and funny children who also all have life long disabilities.
They rely on disability supports that are funded by the NDIS.
I want to share what the NDIS means to me and how the proposed changes would affect the life of my amazing children.
What the NDIS means for me right now
Right now, the NDIS gives them stability.
It allows my family to access the supports we need to function day-to-day, stay connected to our community and build capacity over time.
Without the NDIS, many of the things we rely on social supports, therapy, community participation and capacity building would simply not be possible.
The NDIS is not a luxury. It directly impacts a person’s quality of life.
My lived experience
One of my amazing children, who is now 11, shows just how life-changing early intervention truly is. He is a shining example of the difference it can make to someone’s quality of life
At three years old (in 2018), the paediatrician assessed him as severely disabled and predicted that he would have no meaningful quality of life. He stated he would never develop speech, would not participate in the world around him and would remain isolated in his own environment. The paediatrician went as far as to say that, if institutional care still existed, it would be considered the most appropriate setting for him.
There is no miracle cure that will make him “normal,” and his daily struggles will remain throughout his life.
No treatment can erase his disability.
What we do have are evidence-based supports that allow him to experience a meaningful quality of life, remain at home with his family, and continue developing into the best version of himself.
I am deeply grateful that he was born in Australia in 2015 and that the NDIS has supported him.
I cannot comprehend why anyone would consider removing the very supports that make his life possible.
How I feel about the proposed changes
I feel scared, frightened, anxious, terrified and confused about the proposed changes to the NDIS Act.
What does it feel like for me parent a children with disability
Being the parent of disabled children feels like living out in the open ocean.
I can’t see land and I’m treading water every day. Keeping my children safe and afloat while the waves crash over us.
I don’t get to stop.
I can never stop.
The NDIS has been the flotation gear and sometimes the life raft.
It has literally kept us from going under and dying.
If those supports are taken away, you’re not just abandoning me in that ocean.
You’re abandoning the children who depend on me.
Have the changes been explained clearly enough?
No. We already struggle to navigate the system, and adding more complexity will make things harder, not easier.
What these changes would mean for me, my family and my community
If these changes go ahead, I fear my children and every other participant could lose essential supports.
I also worry about other vulnerable members of our community. Many of them already face barriers accessing treatment, assessments and services.
If eligibility becomes stricter or harder to prove, they could fall through the cracks.
The community relies heavily on the NDIS. Removing or reducing supports would increase pressure on families, carers, schools and local services that are already stretched thin.
Impact of reducing or removing social and community supports
If social and community supports were reduced or removed, the impact would be immediate and severe.
These supports help people stay connected, avoid isolation and participate in everyday life.
These supports keep people alive.
Without them:
- No access to food - yes food - the simple thing all of us need to survive
- No access to medication
- No access to medical care
- People would become more isolated
- Mental health would decline
- Families would experience more stress and burnout
- Community participation would drop
- Many people would lose the progress they have worked hard to build Social supports are not optional.
They are vital to a person’s wellbeing.
The government may celebrate the idea of “saving” money in the NDIS, but those savings will come at a much greater cost.
It will include more hospitalisations, more ambulance and police callouts and more people forced onto disability pensions because they’ve lost the supports that keep them stable, safe, and able to work.
Impact of reducing or removing capacity building supports
Capacity building supports are what allow people to grow, learn and become more independent. Without them or if we never had access to them in the first place many people would never reach their potential.
They would remain stuck, dependent and unable to develop the skills they need.
For my family, losing capacity building supports would mean:
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Inability to communicate
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Zero quality of life
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More reliance on crisis services
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More pressure on informal carers (myself - their only family member who can care for them)
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Fewer opportunities for independence
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Inability to contribute to society
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Inability to develop skills to gain employment and pay taxes (yes you read that right - they want a job - they want to pay tax and contribute your community)
These supports change lives.
Removing them would cause long-term harm.
For me and my family, this change could also mean:
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Delayed access to supports
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Being forced to pursue treatments that are not suitable, not affordable, or not available
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Increased stress and uncertainty
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Risk of losing eligibility altogether •
What these changes to permanence would mean for me
If the definition of permanence becomes stricter, I worry that my children would be labeled “not disabled enough” or “not permanent enough”. Even though our challenges are lifelong.
I worry that people will be pushed out of the NDIS simply because they cannot access or afford certain treatments to continue to prove to the NDIS how disabled they are.
The NDIS was created to support people with disability, not to make them jump through endless hoops. The proposed definition feels like a step backwards.
My final message
I ask that the government keep the NDIS simple, accessible and focused on the people it was designed to support.
The proposed changes feel confusing, restrictive and disconnected from the realities of living with disability in Australia.
Please listen to participants, families, carers and workers.
We rely on the NDIS and we need it to remain strong, fair, and compassionate.
My last question is simple: have you truly thought about the person living with a lifelong disability?
Could you sit beside them, acknowledge how much the NDIS has helped them, and then be the one to tell them you’re taking that support away? Have you really imagined what it feels like to live with a disability every single day — the grief, the sadness, and the constant challenges that weigh on both the person and their family?
We watch other families plan birthdays, play dates, sports, and holidays while we work tirelessly with professionals just to help our child communicate basic needs — to tell us they’re thirsty, unwell, or frightened. I have lived with broken sleep and survival-level stress for years. Research shows that parents of children with disability experience stress levels higher than soldiers in war.
Do you ever stop and think that people with disability never chose this life?
A person with a disability does not want this to be their path.
I believe politicians enter public service to support and advocate for all Australians.
You have the power to protect the most vulnerable yet these changes would take away the very supports that allow them to live with dignity.