Despite the efforts of this government, the strong commitment to improvement by state governments and the quiet work of many good-hearted and capable people, the system we have is a crisis-driven patchwork of state and federal services.
It is failing to deliver for people struggling to find the aids and equipment they need to have a chance of a job, or for ageing carers who have sainthood forced on them, whether they like it or not.
I believe we are at a tipping point when it comes to disability. It’s a time when the old systems are struggling to cope and when we need to look at new ways of funding the growing costs associated with disability.
The announcement made by Prime Minister Kevin Rudd last night that the Productivity Commission will carry out an inquiry into funding and delivering long-term disability care and support is a fantastic chance to rethink how we approach disability as a society.
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The commission will look at the possibility of replacing the existing system with a new approach to providing long-term essential care and support to people – regardless of how their disability is acquired – and examine whether a no-fault social insurance approach is appropriate for Australia. This kind of scheme would provide an entitlement to services and a strong incentive for early intervention.
An independent advisory panel will also be appointed to advise the Productivity Commission and the government during the inquiry.
There is no doubt that this study is urgently needed, as demographic trends will make disability more of a pressing issue.
Last week’s Australian Institute of Health and Welfare report predicted that the number of Australians with a severe or profound disability will grow from 1.5 million in 2010 to 2.3 million in 2030.
This will occur at a time when the number of informal carers is predicted to shrink as our population ages. Recent trends indicate growth in demand for specialist disability services of 7.5 per cent a year in real terms; this would indicate a doubling of cost by 2020.
Australian governments already spend about $20 billion a year on the disability support and welfare system.
This is made up of $8bn on payments to community care and support providers.
In addition, nearly $3bn is paid to family and other informal carers. The bulk of the remaining $9bn is paid in income support for about 720,000 Australians on the disability support pension.
Anyone who has concerns about the potential cost of any national scheme should consider those numbers.
There is no doubt that a system that focuses on early intervention and on providing lifetime care to individuals has the potential to generate its own savings.
Earlier treatment of disability means a better chance that an individual will be able to work, and a lower chance that their associated health issues will need to be treated through the public system.
A national scheme could also end many of the inefficiencies of the present patchwork of systems.
For example, we have 31 different aids and equipment schemes being run across Australia.
This leads to the ludicrous situation of people with disability turning down a move interstate because it means they will need to return their equipment and join the back of the queue in their new home.
We have state and territory schemes that compensate victims of workplace or motor vehicle accidents, but have nothing for the victims of similar accidents that occurred elsewhere.
Imagine if the government spent millions funding hospital emergency departments that would treat you if you broke your leg in a car crash, but not if you broke it in an accident at home.
It has long been my belief that people with disability are treated as second-class citizens in this country.
Despite the fact there are millions of people living with disability, they have somehow become invisible to their fellow citizens and politically marginalised.
Too many are living in a kind of internal exile, shut out from the workplace and from the benefits this country has to offer.
Too often it is not the disability that makes it difficult to cope but the attitudes and stereotypical perceptions of it, as well as the lack of suitable services.
Much has improved in the past 40 years but we are still neglecting the potential and crushing the dreams of too many people with disability. The difference between a parent whose child is diagnosed with cancer and one who is diagnosed with an intellectual disability is stark.
While both grapple with emotions of shock and grief, the first is given access to treatment through Medicare and the public hospital system.
There is a pathway and support available after diagnosis, and an expectation that care and treatment will be made available.
For the second there is no pathway, just an attempt to navigate through a bureaucratic maze to get help, and a fight for the small amount of services available.
The chance of giving the child the therapy they need to improve in the crucial early years is lost.
The result is difficulties in school, difficulties in getting work and difficulties through life.
A national long-term care scheme for disability would be complex to design and difficult to implement, which is why we want the Productivity Commission to undertake this study. It is a big idea. But so were Medicare, aged pensions and compulsory superannuation. We need to test whether a national long-term care and support scheme would be practical, appropriate and economically responsible.
We need to examine carefully what benefits it would deliver, what the costs would be and how it would fit into the Australian context. Inequality of luck is one of the most pernicious inequalities in society. We are all one bad car accident away from a serious disability. We could all have a child or grandchild born with an impairment. And we are all at risk of acquiring a disability as we age.
The question we need to ask is: what is the best way of being prepared, and of giving to all Australians the peace of mind that if they are affected by disability, they will be looked after?
Bill Shorten is the federal parliamentary secretary for disabilities and children’s services.