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Clowns to the left, jokers to the right. I’m stuck wondering who’ll speak up for children in the Federal Election?.
Which PM will hate children less? It’s a horrifying yet timely question to ponder. As the Federal election looms large, every adult Australian citizen needs to make a choice. Your vote is powerful and will impact the lives of children in this country.
As Gandhi famously said, “The true measure of any society can be found in how it treats its most vulnerable members”. Although this refers to many groups, for the purposes of our time together today I’d like us to consider the experiences of disabled children.
I feel profoundly let down by Albo, who as he has repeatedly reminded us, is the son of a disabled single mother. As Prime Minister he has overseen the bloodletting chaos wrought by the NDIS and its flow-on supports that can change lives in varying directions. Access to support can be brilliant once you find the right match for your family. Excellent support enhances wellbeing, independence and quality of life. The flip side is that if the NDIS gives it, they can also take it away.
Those who’ve run the gauntlet of interacting with the NDIS will have intimate knowledge of the perpetual double edged sword. Your vote will decide which one of the major parties will be pulling the trigger, and as a result which disabled children will get to live their lives with dignity and autonomy. The eternally hovering threat of requests to provide additional evidence and proof of disability is a mysterious maze devoid of clear guidelines.
Journalist Rick Morton, who previously uncovered the deadly perils of Robodebt, has been investigating the NDIS since 2024. He speaks in The Saturday Paper to recent trends under the scheme: “People with serious and profound disabilities had their eligibility revoked only to later have it reinstated after fighting for review.” The review process takes time and resources disabled people can ill-afford.
In a cost cutting campaign in late 2024, each week one thousand families with children receiving NDIS support received form letters demanding additional diagnoses and further evidence. But there’s no clear explanation of what’s missing.
My family is included in those numbers. Part of our letter stated: “You don’t need to give us any evidence that we already have. We’ve already received the following evidence” before listing the reports and letters that allowed us to access NDIS support in the first place.
It’s a gamble - do we do our best to access a specialist appointment and hope they’ll be able to use the right kind of language to get through the next of an unknown number of hurdles? Will the specialist even have up to date knowledge about best practices for management of the disability in question, or will it all have been for nothing, leaving us substantially out of pocket and demoralised? Will the report they write, if they agree to write one, have a landmine of a single word out of place that the NDIS will point at as proof that you need to return to Go and not “collect” the right to access support?
The most crucial piece of the puzzle is that we did not want our child to go through further grueling assessments filled with statements and questions that would lead them to feel othered or less than. We can’t control the narrative of a system that relies on a deficit model, or health care professionals who will use language indicating that something’s wrong with our kind, funny, spectacularly beloved kid. They just happen to need some formal support to access education and activities.
We opted to hope that the evidence already provided would be sufficient. It wasn’t like our child’s needs had evaporated overnight. In the same timeline I’d experienced a significant breakdown after much of my plan had been slashed in a surprise planning meeting. Our family was doing our best to keep our heads above water after feeling like we’d been caught in a rip. For the two years we had access to support for both my son and I, life had become expansive and beautiful.
Then I received the phone call letting me know my kid’s funding would be coming to an end due to lack of additional evidence. I asked the anonymous person representing the NDIA what I should do to access appropriate ongoing support. They indicated the mainstream healthcare system would be taking care of everything now. It was difficult not to laugh bitterly in response, but not wanting to rock the boat and have even more of my own plan sliced away, I set my jaw and politely ended the call.
I’m no rocket surgeon but the equation seems pretty simple to me. Families with young children, particularly those with disability in the mix, are rarely resourced with funds, time or energy to hunt down unclear additional evidence in the bottleneck of the health system. The process of accessing the NDIS is unbelievably complex and outcomes often depend on which way the wind is blowing. Without evidence that quells the system’s thirst for spreadsheet handsomeness, or whatever the hell is going on there, kids are handballed back to that bottleneck. In the meantime a lack of support leads to a pile-on of unnecessary challenges not just for those children, but their families and the broader community.
Being sent on a bamboozling wild goose chase littered with obfuscation doesn’t stop disability happening. It doesn’t mean early intervention isn’t crucial for the wellbeing and quality of life for children with disability or developmental delays. Sending letters and asking for something that doesn’t exist is a ridiculous exercise echoing Robodebt, and everyone should care about the outcomes and impacts this is having for families across the country.
Albo and Dutton can point at each other and bicker “they started it!” like a couple of jerks all they like, but in the meantime everyone in the broader community is penalised. When supports are removed, disabled people are also removed from the community. Our invisibility and lack of presence is segregated ableism. When we are no longer afforded an opportunity to collaborate, be visible and contribute, the world moves on without us and it’s so much easier to perpetuate exclusionary outcomes.
There have already been increasing numbers of neurodivergent children shifting to the homeschool model after irreparable damage was done in mainstream classrooms. Data most recently available suggests that homeschooling rates have doubled since 2018.
In conclusion, we’ve got myriad systems that are under-resourced and unable to provide basic dignity and care for families with disabled and/or neurodivergent children.
The Coalition have promised the NDIS will “always be fully funded” although the actual meaning of the word “fully” is conveniently unclarified. They have stated that the scheme is “growing faster than expected” which makes it unsustainable. Sounds victim blamey to me. Do your job properly and don’t throw us under the bus for having the temerity to exist.
Labour has promised to reform the scheme if elected, which as we’ve seen since legislation changes late in 2024 has led to kids being booted off and leaving families high and dry. They’ve mentioned working with disabled people on any future changes to the NDIS, but seem unable to ever answer Jordon Steele-John’s questions about process and procedures that fall short.
My vote will be going to the Greens. Their policies make sense to me, with no wilful ignorance or pretending reality isn’t happening. The more seats the Greens have, the more likely they’ll be to:
Make Autism and ADHD assessments available on Medicare
Create a long-overdue position for a Disability Minister
Invest in the public hospital system, easing the bottleneck effect
Every marginalised group you can think of is hurting and watching the election coverage closely to see what will become of them. I urge you not to forget about disabled and neurodivergent children and their loving carers when you’re out and about, even if you don’t see us anymore. We’re waiting for the hammer to fall and hoping sensible and compassionate people get enough seats in the House of Representatives to let us get back into the swing of things. We’re hoping the PM doesn’t hate our children.