The NDIS has become a cruel swindle for a single mother and her boys with autism
Briana Blackett is a genuine hero and yet few people know who she is or what she does. She’s a hero because she’s taking on the might of the Australian government and the disaster that’s the National Disability Insurance Scheme (NDIS).
She’s not a great solider, celebrity, scientist or star, and the work she does goes unnoticed with the exception of those who depend on her and the few people who give her help.
The only reason I know about Briana Blackett’s life is because she’s a communications consultant for the organisation I lead, and I have come to know her not just as a consummate professional but also as a mother fighting what would look to many as an unwinnable battle.
Her sons Max and Freddy, 10 and 8, are too young to realise how incredible she is, but someday they’ll come to know in their own way the truth.
Max and Freddy are both on the autism spectrum which means that they need a lot more care and attention than most other kids their age.
Their father lives and works overseas and only occasionally visits, so the day to day grind of parenting falls to Briana alone.
Here parents live in Port Macquarie and visit Sydney to help out when they can, and so do her two busy sisters whenever possible.
But the fact is that each night at home it’s Briana looking after Max and Freddy – one strong woman with two lovely boys who in different ways struggle to make sense of their world.
In so many ways they’re like most other families but they’re not. Often there are nights when either one or both boys just can’t sleep.
Their distress and disorientation can set off a chain of events that leads to long stretches of shouting and screaming and repetitive behaviours that last all night.
There are numerous other challenges of the most basic kind that make daily routines so much harder to get through, but Briana backs up again and again to keep it all together.
It’s no exaggeration to say that her stamina, resilience, tenacity and grit are almost super-human and her limitless love for her boys inspiring and transcendent in the most beautiful of ways.
For Briana, Max and Freddy the NDIS was supposed to be the light on the hill – a circuit breaker that would end the years of neglect and deprivation for our society’s most vulnerable and those who care for them.
But that’s not how it’s played out for Briana, Freddy and Max – it has made their lives worse on so many levels. For a start, the NDIS has led to massive cuts to both their funding and support.
The scheme that promised so much for so many has immediately led to Briana and her sons being drawn into a bureaucratic maze of new rules, unclear expectations and ultimately less funding for what are growing costs for their small family.
It’s a complex situation with many elements, but it boils down to this – Briana knows that with the right interventions and support, her sons can live productive and to varying extents independent lives as adults.
But the NDIS has arbitrary cut off points for the funding of basic supports such as speech and behavioral therapies that are essential if her boys are to achieve any level of independence.
Briana knows that if interventions don’t happen now for her boys, there’s no chance to catch up down the track when they’re adults and set in their ways and the patterns of dependence and independence that will define their lives.
Her knowledge isn’t just the wishful thinking of a loving mother; it’s based on solid research that says that early and ongoing intervention for people like Max and Freddy makes a huge difference to their social and life skills which saves money for taxpayers because of the long term independence it creates.
So this week Briana finds herself in yet another round of Administrative Appeals Tribunal hearings about what financial support her sons should and should not receive. It’s a case that’s not just about them but a landmark case for thousands of other people who thought the NDIS would lead to better, not worse outcomes.
And it’s a case that yet again pits a single mother and her vulnerable children against a system with too many highly paid bureaucrats who hide behind poor policy, bad processes, pointless meetings and phony consultations.
If you dig deeper into Briana, Max and Freddy’s story you’ll see a story filled with broken promises, endless heartache and bitter frustration. For them, the NDIS has become the cruellest of swindles justified by a bureaucracy that couldn’t care less.
But more importantly, you’ll see an amazing woman taking up the fight for her two sons and so many others who are never given a voice by the powerful people running the system. Let’s hope for all of us she wins.
Tony Farley is the executive director of Catholic Commission of Employment Relations