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With news that the newly minted post-election cabinet includes a Minister for Disability and the National Disability Insurance Scheme, the NDIS is garnering continued media attention. The Minister doesn’t appear to have any lived experience of disability and had some odd management around the ever-present pandemic. I’m not filled with a lot of confidence.
Obsession with NDIS cheats carries on peppering the narrative, but the j’accuse finger is pointing the wrong way.
In her recent AFR article, NDIS participant Zoe Mithven urged the Albanese government to “...rebuild its fractured relationship with NDIS participants. Over the past term, reforms and legislation have taken precedence over engagement, with public messaging often blaming participants for the scheme’s rising costs. This narrative – shaped by political strategies from RedBridge to justify reforms and cost-cutting – has fuelled stigma.” Mithven also described the erroneous perspective coming from outside our community. “Online, many of us face hostility from non-disabled Australians who question our disabilities or label us “rorters”.... The government must counter this by depicting participants more positively as valued citizens, not expenses, to restore trust and combat social exclusion.”
When I was first granted access to NDIS support, I was blown away in equal measure by the life-changing positive difference to my family and the way providers from large businesses seemed trained to waste time in increasingly absurd ways. Nowhere has it been truer that time is money than in the land of NDIS support.
With high turnover of staff in positions created to work with NDIS participants, the luck of the draw can have dangerous and expensive consequences for disabled Australians. Once the funding in your plan is gone, it’s gone. Wasted funds resulting from actual rorters means we go without support. We aren’t accessing supports to cross off bucket list items like smooching Pablo Pascal or driving Go Karts on Mars. We need these supports to achieve equity in our lives.
The most common story participants have of strange and unethical interactions relates to occupational therapists. Part of my funding is there to support my functioning with mental illness, so I was slightly worried I was losing the plot each time an OT came to my home. Each visit brought increasingly curious behaviour on her part. When I showed her that I wasn’t able to open and close the doors of our linen press, she told me a long story about building her own home, adding in a stern voice that doors are very expensive. If you want help with this, she told me, the NDIS might start asking questions.
I had some questions of my own. As an occupational therapist, my understanding was that her role was to help me access my own home so I could do my share of the labour, not to drone on about irrelevant personal stories for an uncomfortable portion of the hour. An hour that was about supporting me to function in my life.
Each time she assured me that she would keep notes, so I didn’t need to, but after the third consecutive time she forgot I began to keep records. Later, a home organiser ripped the doors out for me, solving the problem in two minutes.
This weird stretching out of time on bizarre side quests to la la land doesn’t tend to happen with sole traders. People who’ve identified a need for support from NDIS participants, and work with individuals to cater their shifts to what the most pressing requirements are. When you face one another as equals, there’s no wasted time following a one-size-fits-all approach to care which benefits the larger business model rather than the individual.
Seeking stories from the disabled community filled my DM’s with horror stories.
"I engaged an OT company who sent an OT for an assessment. That was all the work they did.
They charged me for a full functional capacity assessment, the report of which was never provided. They charged me for communications with builders which never eventuated.
The final straw was sending me check in, "how are you?" Texts for which they charged $50 a pop. They then charged me the same $50 for sending a cancellation text for an appointment THEY cancelled.
I only claimed back $50 from thousands of funds. I reported them to NDIS Quality and Safeguards Commission who cancelled my complaint as it was in writing, not verbal."
"I made an enquiry with a support work agency which I chose not to pursue. Several weeks later, someone turned up at my door as I was resting.
They rang the doorbell, banged on the door, tried the door handle and my lock keypad. Essentially, they tried to force entry for 15-20 minutes.
I was alone at home, unable to move or even reach for my phone due to my disability. I finally managed to contact my father, who was on the phone to this support work agency. They had sent a worker, without my permission, knowing I would be alone and vulnerable. They then rang my emergency contact when I didn't answer the door.
He told them to leave, but I remain traumatised by this event. I was never a client of this agency, nor did I schedule shifts with them. I am uncertain how they knew my address.
I have since been informed by those in the industry this is a common scam - send a worker to a vulnerable clients home when they are alone, convince them they have a shift, and claim from their ndis or aged care plan. I fear what would have happened had I been unable to advocate for myself.”
There are endless anecdotes of this nature that seem to result in a lot of hand-wringing and tongue clicking. But it can’t be true, people say. How unfair! That’s all well and good but I’d like to know where the justice, access to care and protection from harm will be coming from. They sure as hell don’t seem to be coming from NDIS service providers, the powerful majority who not only worked out how to rort the system but actively created dangerous conditions for disabled people in the process. It’s not good enough and we are so exhausted from the merry-go-round of changing systems, reassessments echoing Robodebt, and engagement from the NDIS itself that fighting another losing battle feels completely out of reach