The Burden Of Care


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.

What does this look like? My mother’s eyesight began to fail in her late 50s. A blind spot appeared in her central vision and steadily advanced. She was diagnosed with macular degeneration. She would go blind.

As the condition worsened she became unable to drive at night. My sister and I tried to fill the gaps in our brother’s care, but the tragic death of my sister’s husband put an even greater strain on the family. My mother was now looking after a grieving daughter and her two young kids, as well as my brother.

This was a crisis in anyone’s language but the disability support services continued to drag their heels as we coped. We trudged on in good faith.

A large lump suddenly appeared on my mother’s neck and over a matter of weeks it grew into a tumour so big she could barely cover it with a scarf. She was diagnosed with cancer in September and gone 12 weeks later.

The NSW Department of Aging Disability and Home Care (DADHC) offered my brother temporary respite care, but it was clear despite our circumstances that sustainable, permanent care wasn’t possible under the funding arrangements.

Underfunded and under siege, DADHC pushed for me to take over my brother’s fulltime care on a permanent basis. I lobbied the NSW minister and my local state member of parliament as my mother slipped away.

One meeting stands out with a regional manager from DADHC. She would not or could not offer permanent care, it was temporary care or nothing and we wouldn’t give in. She left the meeting only to return a few minutes later demanding to know who had called "the minister". She sat down and renegotiated only to call me a few days later and cynically tell me I was "playing the game very well".

The Productivity Commission rightly confirms that the current system is unworkable. The commission and those I’ve spoken to within the sector argue that a complete overhaul is needed.

The commission recommends creating a disability insurance scheme to move the sector away from a welfare model. This would ensure that a direct funding base, immune to the vagaries of inflation and cost cutting by future governments, is established for the care of people with a disability.

Under this scheme my mother would have been able to choose the most appropriate service provider for my brother and sensibly manage the funds allocated to him, safe in the knowledge that his care would not be suddenly withdrawn or hopelessly inefficient.

The other challenge the commission takes on is the delivery of services. The draft report recommends the federal government take over funding the sector and provide stable but flexible, high quality, long-term care and support for people like my brother.

The commission also recommends a separate National Injury Insurance Scheme be established for those who endure extensive injuries such as the loss of a limb or spinal cord damage as a result of an accident.

I lied to my mum just before she died.

With great effort she pulled herself out from under the haze of morphine and asked my sister and I if our brother was set up in a place to live and cared for. I told her he was in his own home and cared for by drop-in services.

She closed her eyes and lay back to rest again. We both knew I was lying.


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Launched in 2004, New Matilda is one of Australia's oldest online independent publications. It's focus is on investigative journalism and analysis, with occasional smart arsery thrown in for reasons of sanity. New Matilda is owned and edited by Walkley Award and Human Rights Award winning journalist Chris Graham.