The response reflected an overwhelming demand for a fair and equitable solution to support Australians with disabilities, but also signalled that a major disability reform was long overdue.
One of the impetuses for change started with a ‘light bulb’ moment from Bruce Bonyhady, the current Chairman of the National Disability Insurance Agency. It was a simple moment of realisation, which helped created a historic momentum for change in Australia.
Time for change
Prior to the introduction of the NDIS, Australians with disabilities that fell outside the existing Workers Compensation and Motor Accident schemes, were offered a range of disjointed and discrete services, often ad hoc in their delivery. Many viewed the disability sector as fragmented and disconnected. Every disability advocated for its preferred approach, which created competition between and within groups for the limited resources available, as each tried to ‘prove’ the priority of their disability.
However, the tide started to change when Bruce Bonyhady – then chairman of Yooralla, one of Australia’s largest disability agencies – visited a support centre and sat down to chat with the mother of a young boy with a disability. Bruce remembers her asking, ‘Why can’t my son get the early intervention supports he needs?’
“I went into a long explanation about how the organisation was doing the best it could with the funding we received and how the staff were working overtime,” Bruce explains ‘“But I was appalled by my answer. I was justifying the status quo.
“This was a struggling mother, from a non-English speaking background and I was justifying why she couldn’t receive the support her son needed. At that moment, I thought, ‘Right, this is wrong, I need to do something’.”
In 2005, Bruce Bonyhady started to investigate the disability sector at a broad level, and his findings were conclusive. It was apparent that the existing charity and welfare model operating at the time was failing.
“There was an overwhelming sense of unfairness and injustice,” he explains.
As a result, he started to focus on two areas: those with disabilities who received no support, and those receiving some support, but not the support they needed.
An economic issue
Through his work with disability agencies at a senior level, Bruce connected with like-minded politicians who understood the inequity in the disability sector.
“I was discussing the issue with the former Deputy Prime Minister Brian Howe, and he said to me ‘Stop thinking about this as ‘welfare’, this is a classic insurance problem’.
“I realised he was right – the entire population is at risk. A very small number of people have significant permanent disabilities before retirement age and the best way to support them is for everyone to make a small contribution into a central pool. Those who then acquire or are born with a very significant disability are covered by that ‘insurance policy’.
“It was clear to me that in order to get reform in this area you had to demonstrate that this was an economic as well as social reform,” he explains.
Bruce understood the central role that economic analysis plays in policy formation, having started his career in the Australian Treasury, and how an economic framework determines government priorities, even when there is a social component in the framework as well.
“A welfare scheme seeks to minimise costs in a given year, whereas an ‘insurance scheme’ seeks to minimise the cost of supporting someone and maximise their opportunities over their lifetime,” says Bruce. “What results is the most efficient and effective way to support people with disabilities in our society.”
According to Organisation for Economic Co-operation and Development (OECD) rankings, Australians with a disability are more likely to be living in poverty than in any other country. Moreover, those with a disability are 50% as likely to be employed as those without a disability – whereas the OECD average is 60%. The 2009 Pension Review Report for the federal government found that those on the Disability Support Pension were, on average, less well off than other income support recipients because the costs associated with disabilities are so high.
The facts spoke loudly; the time for change was upon Australia.
The NDIS will ensure everyone with a disability has access to services and support regardless of the nature of their disability or how they acquired it based on their essential needs. Individualised support is available for eligible people in a flexible ‘whole of life approach’. It provides information and referrals, support to access community services and activities, personal plans, and support over a lifetime.
“The NDIS corrects the mistakes of the past and creates a framework to support future generations in a way that is fair and equitable,” Bruce explains.
Finding a voice
For the NDIS to engage the public, government and public sector, the early grassroots movement needed two languages – one of economic logic and rational, structured arguments, and one to connect with the heart of the Australian public. The ability to appeal to both the head and the heart was a defining success of the campaign.
“It was revealing the ‘unvarnished reality’ that made the impact,” remembers Bruce. “The real heroes of the campaign were the people with disabilities and their families, who told their stories with enormous dignity and courage.
“Without exaggeration they simply said, ‘this is what it’s like’.”
Through the Every Australian Counts campaign, people shared their stories – and those stories resonated. What resulted was a great sense of indignation and unfairness, with powerful statistics making the personal stories more compelling.
“The evidence flew in the face of Australia’s identity,” suggests Bruce. “There was a strong sense that this is ‘un-Australian’ to treat many of our most vulnerable in this way.”
One of the most significant and important success factors of the NDIS campaign was a universal acceptance of the need for change. There was unity within the government, within the disability sector and across the Australian public. There was a collective acknowledgement that this was something that must happen.
“We were fortunate to have the leaders on all sides of politics who understood the necessity and potential of the NDIS,” says Bruce. “There was unity and visionary leadership to see the potential of something so different which would make such a transformation.
“There was also an enormous sense of goodwill and recognition that this was a special moment in time. This was a unique opportunity to learn, to build and to get it right.
“That spirit of co-operation and a shared goal remains very strong,” says Bruce. “Everyone wants the NDIS to work and is prepared to go the extra mile to make sure that happens.”
“There is a deep commitment and ownership of all governments, and this remains undiminished.” This is reflected by the fact that since the NDIS scheme started in 2013, there have been four changes of government, yet not one instance of momentum has been lost during the continuing trial phase of the NDIS.
As a father of two sons with cerebral palsy, for Bruce Bonyhady this has never been personal. “My motivator has always been about inequity and those who haven’t been fortunate or had resources. This is about the people who can’t advocate for themselves.”
The NDIS is in trial phase in eight different sites around Australia with 20,000 people with disabilities already eligible for the scheme and more than 17,000 with approved support plans through the scheme. The rollout is on time and within budget; targets are being met and client satisfaction is measuring over 90 per cent. “We have a really strong performance culture, so we hit our quarterly targets,” says Bruce. “We’re also making sure we adapt and learn as we go.”
With sophisticated outcome frameworks and measurement tools, the NDIS is building a significant and important longitudinal and cross-sectional database on disability that can help identify the key ingredients for building better lives.
“The NDIS is relevant to every Australian and not just those with a disability,” suggests Bruce. “We’re investing in people with disabilities, we’re investing in their families and we’re trying to
build their capacity so ultimately they’ll have a better life and can participate in the community and be more independent.”
The NDIS signifies a remarkable period of Australian history and provides a template for how a nation can work together to make a positive change.