The anguish is palpable amongst the thousands of pages that make up the report of the Productivity Commission's Inquiry into Disability Care and Support. An elderly couple caring for their "violent" autistic grandson weeping in despair at a public meeting. A man with a disability telling of his anxiety at the prospect of losing all care and support when his elderly parents can no longer assist him. A psychiatrist who "regularly" meets carer-parents fantasising about murder-suicide.
More than 1000 people and organisations made submissions to the Productivity Commission's enquiry over its 18 month lifespan. It's hard to be unmoved by the stories of those at the pointy end of the disability care crisis – people pushed to breaking point by a "system" the Productivity Commission described as underfunded, unfair, fragmented and inefficient.
Earlier this month the Minister for Disability Reform, Jenny Macklin, was even more direct. The system, she said, was one that "exploits the love of family carers, too often leaving them exhausted and alone"; one that "that drips out support rather than [investing] in someone's future".
Disability reform is long overdue and desperately needed. How much assistance – whether you receive assistance at all – depends on when and how you acquired your disability. It is a perverse situation where those born with a disability must envy those who acquired their impairment through a work or road accident, and thus qualify for insurance payments for essentials such as wheelchairs, home modifications, attendant care and therapy.
Labor frontbencher Bill Shorten, a champion of disability care reform, reportedly blackly joked: "It has been said to me that the best thing to do for someone who has fallen off the roof of their home and suffered a spinal injury is to bundle them into the car and drive it into the nearest lamp post."
So what to do with our broken, dysfunctional system? The solution proposed by the Productivity Commission – and accepted by the government – is the National Disability Insurance Scheme (NDIS). A universal, Medicare-style safety net for people under 65, it will pay for equipment, therapy and support. The scheme will assist around 410,000 Australians with permanent and significant disability (and their carers) to participate in society.
The Commission recommended the launch of the scheme in pilot from mid- 2014, with trials in selected regions around the country.
The size of the challenge cannot be under-estimated. At a forum in Melbourne this month, Minister Macklin described the NDIS as a one in a generation social change; the biggest reform since Medicare.
The design of the scheme – who is eligible, how it is administered by the states and how the extraordinary $6.5-$8 billion annual cost is met – are questions that are currently exercising the minds of federal bureaucrats, as the government completes what it describes as the foundation work for the scheme.
Although the Federal Opposition has recently given a welcome assurance of bipartisan support, these are challenging times, politically and economically, for a reform of this magnitude.
And while designing and implementing this scheme is a daunting proposition, the government can take some comfort from looking to successful examples of the NDIS principles in action.
My organisation operates a centralised assessment and referral system in Tasmania called The Gateway, which is very similar to the model proposed for the NDIS. It's an innovative approach that frees carers and those with disabilities from current revolving door system and helps them get the support they need, when they need it.
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