My brother has an intellectual disability. He is autistic and he can’t speak. He makes noises and flaps his arms. He’s different and he’s charming. He’s demanding and he needs daily care.
My mother cared for him for most of his life. The sheer intensity of his needs bound them brutally together.
She feared that if she died, my sister and I would be bound to him in the same way, so everyday she worked to win his independence.
At first we found small freedoms — a meal without screaming or food flung in frustration; a visit to friends that didn’t end in an apology and a hurried exit; a rare, blissfully uneventful evening out for my mother, a bus ride together, and then years later, miraculously, a ride alone on the bus.
My mother believed in my brother. She loved him and she fought for him.
If she were alive today she’d still be caring for him and as an aging carer she’d still be ignored by the state and federal government disability services. She’d still be reliant on family and friends to shoulder the burden of care.
She’d be forced by yet another agency to prove and categorise my brother’s disabilities in order to receive the smallest of concessions. She’d be even more exhausted, even more isolated.
She’d be told that in a country debating a super-profits tax, there was not enough public funds available to sustain my brother in community accommodation.
She’d be turned away because she would continue to cope and would not give up her son.
She’d be turned away because she was not "in crisis".
As my mother lay dying from cancer, I spent the last precious weeks of her life in furious negotiations with NSW disability services fighting to establish a system of care for my disabled brother.
Last week the Productivity Commission released its draft report into Australia’s disability support services. If the Commission’s recommendations had already been implemented in those precious weeks, our lives could have been so much less desperate.
As it was, the calamitous reality of NSW’s underfunded disability sector forced me into a terrible dilemma — either abandon my brother to become a ward of the state, or take on his full-time care for the rest of my life.
This was exactly the same awful predicament my mother faced 30 years ago and spent half her life trying to resolve. It’s the same predicament families and other carers of people with a disability all over Australia face today.
The Productivity Commission’s draft report confirms that the current disability support system is chronically underfunded. Services are haphazard, inefficient and dependent on irregular state revenues.
The system is characterised by a siege mentality; carers must literally desert those under their care to receive consistent support. Mindful of state budgets and the intense desperation in the community, workers within the system will only allocate scarce resources to those families or individuals in crisis or where a long-time primary carer has died and there is no one in the family to replace them.