When Your Government Makes You Choose Between Dignity and Survival: An NDIS Reality Check
AUTHOR: Giarne is a Multiply Neurodivergent Occupational Therapist, Mother, Wife
What happens when the system designed to liberate you becomes the very thing that oppresses you?
I wear many hats within the NDIS ecosystem. I’m a provider, an employer, a parent of a participant, and a participant myself. This unique vantage point has given me an unfiltered view of a system where ableism isn’t a bug - it’s a feature, carefully engineered to prioritise government savings over disabled lives.
The Dream vs Reality
I started my business at the end of maternity leave, inspired to practice evidence-based therapy that genuinely transforms lives. If I was leaving my baby with someone else, it wouldn’t be for anything less than work that truly mattered. The government sector’s constraints meant I was tired of applying plasters to bullet wounds.
The NDIS initially offered hope - freedom and flexibility to structure supports around each person’s unique disability. No rigid rules dictating reports or service agreements. Just the promise of individualised care.
But freedom without safeguards creates chaos.
The Unintended Consequences
What I discovered shattered my idealism. Whilst I worked longer hours for the same income I’d have earned as an employee, others without an ethical compass were indeed making considerable money. The desperation of families created a marketplace where demand far exceeded quality supply.
I watched my beloved profession - something I’d dreamed of since age 12 - become synonymous with greed. “OT is a licence to print money,” specialists would say. Meanwhile, newly qualified therapists burnt out and left in droves, unable to cope with the system’s demands and their own inexperience.
My Personal Awakening
Life has a way of providing perspective. I recognised autism in both myself and my child. Despite my professional connections and financial privilege, accessing diagnoses cost thousands, and therapy waitlists stretched beyond 12 months. If I struggled with these advantages, what hope did other families have?
Applying for NDIS support brought shame and self-doubt. Was I needy enough? The internal battle between being someone who helps others and needing help myself required genuine therapeutic work to resolve.
The Propaganda Machine
Then came the government’s calculated response to sustainability concerns. Instead of acknowledging systemic design flaws, they deployed propaganda with surgical precision. This wasn’t incompetence - it was strategy. Paint participants as fraudsters, providers as money-hungry exploiters, and shift the narrative from “empowering disabled Australians” to “protecting taxpayers from disabled Australians.”
The agenda was crystal clear: save money at any cost. The cost? Our dignity, our rights, our lives.
The new legislation I eventually read bore no resemblance to the UNCRPD or the original NDIS vision of choice and control. It was a masterclass in systemic ableism - cost-cutting disguised as reform, power centralisation wrapped in accountability rhetoric, all whilst scapegoating everyone except those who designed the fundamentally flawed system.
The Anatomy of Systematic Oppression
This isn’t new. These patterns have played out for decades, but we’re finally speaking because the alternative - silence - has become more dangerous than the retribution we fear.
This follows a predictable pattern: create a villain, systematically marginalise a group, and ensure a silent winner.
The silent winner: A government that established an unsustainable system, failed to implement proper safeguards, then blamed everyone else when problems emerged.
The scapegoats: The workforce they deliberately incentivised to enter disability services, then forgot to quality-assure or properly regulate.
Those being systematically oppressed: Disabled Australians - not victims, but people actively being victimised by deliberate policy choices.
I know there are incredible people working within the NDIA - passionate advocates who joined to make a difference. I’ve experienced their compassion and expertise firsthand. But somehow, the institutional ableism and bureaucratic machinery is suffocating their ability to create the change they’re fighting for from within.
I’ve reported genuinely concerning provider behaviour to the safeguards commission - cases that took 12 months to receive a “no action” response. If one person experiences this, thousands likely share similar stories.
The Human Cost
The “fixing” isn’t working. The people the NDIS was designed to help are bearing the cost.
This isn’t about providers losing income - though that narrative is convenient. It’s about participants who can’t access therapists because transport isn’t funded. It’s about people waiting three years for disability pensions whilst unable to afford the psychiatric evidence required for NDIS access.
It’s about families who, without supports, risk losing their children because systems consistently oppress, infantilise, and ignore their needs.
My Reality Check
I trusted my government. That trust is broken.
My business suffers because the system didn’t support me when I needed help. My child lacks access to safe, accessible education. My functioning has declined in ten months as an NDIS participant because inadequate funding combined with increased red tape has overwhelmed my already exhausted executive functioning.
The cruel irony? I’m simultaneously:
A burden as a participant
Money-hungry as a provider
Failing as a parent of a disabled child
This is ableism from the very government I was raised to believe would catch me if I fell. Instead, they’ve put me in the firing line.
The Statistics That Should Terrify You
The reality of disabled Australian lives should shake you to your core:
Autistic women contemplate suicide 28 times more often, engage in suicidal behaviours 13 times more often, and are nine times more likely to die by suicide than neurotypical women.
Disabled Australians face unemployment rates nearly three times higher than non-disabled Australians, with many more trapped in underemployment or exploitative work conditions.
90% of women with intellectual disabilities experience sexual abuse - yet their voices are consistently dismissed or ignored when they attempt to report it.
Disabled people are twice as likely to experience domestic violence, yet support services remain largely inaccessible.
70% of children with PDA (Persistent Drive for Autonomy otherwise known as Pathological Demand Avoidance) cannot attend mainstream schooling, yet their parents are expected to magically maintain employment whilst providing round-the-clock care and advocacy.
We’re not just statistics. We’re people being systematically denied the basic human rights that non-disabled Australians take for granted - the right to work, to be safe, to be heard, to make choices about our own lives.
These aren’t just statistics. This is my daughter. This is me. This is millions of Australians whose lives are being deliberately devalued by policy designed to save money rather than save lives.
Does it only matter if its personal?
What I Demand from the NDIA - Right Now
This isn’t a polite request. This is a demand for basic human dignity and rights.
STOP THE ABLEIST PROPAGANDA IMMEDIATELY. Own your failures instead of scapegoating the people you were meant to protect.
TRANSPARENCY NOW: Publish your decision-making processes. Show us the evidence behind your “reforms.” Stop hiding behind bureaucratic doublespeak.
ACCOUNTABILITY: Publicly acknowledge your role in systemic failures. Apologise meaningfully. Then prove you’ve learned by doing better.
REAL COMMUNICATION: Stop talking AT us and start talking WITH us. Co-design means disabled people lead the conversation, not tokenistic consultation after decisions are made.
ACCESSIBILITY: Make your information genuinely accessible. If disabled people can’t understand your communications, you’re excluding us by design.
IMPLEMENT THE ROYAL COMMISSION RECOMMENDATIONS: Stop cherry-picking the easy ones whilst ignoring the structural changes that actually matter.
FUND PROPERLY: Stop pretending that slashing budgets improves outcomes. Improve your own processes to stop wasting money. Adequate support costs money - but the alternative costs lives.
FIRE THE ABLEISTS: Create consequences for staff who discriminate against disabled people. We know who you are. Do something about it.
The question isn’t whether you’ll do this - it’s how quickly you’ll act before more lives are lost to your calculated indifference.
The Path Forward
This outcry from the allied health and disability communities isn’t about money - it’s about the lives of disabled Australians who are being systematically oppressed by the very system meant to support us.
We’re done being polite. We’re done accepting crumbs. We’re done dying quietly whilst you balance budgets on our backs.
The fear of retribution that kept us silent is nothing compared to the fear of what happens if we stay silent. We’re speaking now because we have nothing left to lose - and everything to fight for.
We need a system that recognises our humanity, not one that treats us as line items to be minimised. We need leadership that takes responsibility rather than shifting blame. We need policy designed by disabled people, for disabled people.
I’m angry. I’m traumatised. I won’t recover overnight.
But I’ll fight if you will actually listen.
The question isn’t whether the NDIS needs reform - it’s whether you’ll reform it WITH us or continue trying to reform it WITHOUT us whilst wondering why nothing improves.
Stop choosing money over lives. Stop choosing control over dignity. Stop choosing bureaucracy over humanity.
Do better. Our lives depend on it.
If this resonates with you, share it everywhere. Send it to your MPs. Share it in every disability group. Forward it to every provider. Send it to the media. Real change happens when enough voices refuse to be silenced. Our stories matter. Our lives matter. Our time is now.