Let many shoulders take some of the burden
Disability touches the lives of millions of Australians. Photo: Reuters
Disability touches the lives of millions of Australians. Almost one in five Australians either has a disability, has a family member with a disability or is a carer for someone with a disability.
Yet our response to disability has not reflected the scale or severity of its impact. In a prosperous nation like ours, it is profoundly wrong that heart-breaking, often shocking, stories of life with disability are not exceptional.
In Parliament recently, I shared a letter from one of my constituents, Denise Reid. Ms Reid wrote to me about her son Tim, a 21-year-old man with Down syndrome. She wrote about Tim's sense of humour and love of music. But she also told of the demoralising task of continually having to prove her son's disability to maintain the modest payment she receives.
She wrote: ''My son has an intellectual disability. There is no cure and he will never grow out of it. … The payment is small and sometimes I feel like giving up the bureaucratic battle. But I don't. I fill out the form and visit the GP to complete another form and wait to hear if I've been able to prove disability. That makes me sad.''
If this situation, where mothers of children with Down syndrome have to constantly prove that their child's chromosomes have not changed, sounds like an unfortunate quirk of the system, we only have to consider some of the other indefensible anomalies in the current system.
Imagine you rented a car from Canberra airport, and had an accident as you drove out of the airport that left you a paraplegic. Your payout eligibility might differ depending on whether the hire car company had registered that vehicle in Victoria or Queensland.
The same disability is treated differently if you got it falling off the roof while cleaning your own gutters or while being paid to clean someone else's.
That is how much of a patchwork our current system is.
Such stories have been heard so often in discussions around the National Disability Insurance Scheme.
People with disabilities and their loved ones don't need a system that makes living with disability a bureaucratic battle.
It is with that spirit and with a recognition that past governments have not provided adequate support to people with disabilities and their carers that the government is putting in place a National Disability Insurance Scheme.
Underpinning the rationale for the scheme is the appreciation of an uncomfortable truth: disability, itself, does not discriminate. Each of us is just a car crash away from a profound disability, a dice roll in the genetic lottery from giving birth to a child with a congenital abnormality.
Under the current system, the risk of falling foul of that lottery - and of the emotional and financial costs that often follow - is heaped on the shoulders of those people with a disability and their carers. It is, in effect, privatised.
What the National Disability Insurance Scheme will do, like other landmark reforms such as Medicare and universal superannuation before it, is transfer that risk across society. It will ensure that those citizens not in a position to meet their own care needs are supported, not swamped.
Prime Minister Julia Gillard emphasised this in a recent address to the National Press Club, saying that the scheme set out to ensure that ''those hit with life's cruellest blows get the help they need''.
A National Disability Insurance Scheme comes with a serious price tag. But that should not prevent us from transferring the risks and costs of disability to where they rightly belong: on the shoulders of the many, not the few.
The scheme will provide people with a disability individual care and support based on their needs, giving them real choice and control over these supports, fostering innovative services that are delivered and
co-ordinated locally, and bringing long-term certainty to the resourcing of disability care and support.
Chief Minister Katy Gallagher lost no time pledging her commitment to the National Disability Insurance Scheme at the outset. As a result, when the ACT becomes one of the NDIS launch sites later this year, about 5000 Canberrans with a disability will benefit.
The National Disability Insurance Scheme is a long-overdue reform, helping to make Australia's social safety net a little stronger and our nation a little fairer. Hopefully it will help thousands of Australians - like Tim and Denise Reid - who should be getting more support and doing less paperwork.
Andrew Leigh is the federal member for Fraser. His website is andrewleigh.com.