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Dan Harrison Health and Indigenous Affairs Correspondent http://www.watoday.com.au/federal-politics/political-news/brighter-light-for-disability-20130630-2p56o.html It began with a mother's plea and had many champions. Australia's groundbreaking disability insurance scheme starts today. Emotional scenes in Parliament after the passing of the disability legislation. Photo: Andrew Meares One day in 2006, Bruce Bonyhady went to visit a kindergarten in the Melbourne suburb of Endeavour Hills. Bonyhady, then chairman of Yooralla, was confronted by a woman demanding to know why she couldn't get the support she needed for her disabled son. ''I went into this very long explanation about how we were doing the best we could and the staff were working overtime and all that sort of stuff,'' recalls Bonyhady. ''I went away from that encounter just appalled with my answer … here was me with all my contacts defending the status quo, which was clearly not acceptable.'' Advertisement That unfortunate encounter with a mother struggling to cope sowed the seed for Australia's new disability insurance scheme, DisabilityCare, which launches today. After his kindergarten visit, Bonyhady asked Brian Howe - a former Community Services Minister and Deputy Prime Minister to Paul Keating - to meet him for a coffee to discuss what could be done. Howe told Bonyhady, now chairman of DisabilityCare, to stop thinking of disability as a welfare issue, and reframe it as a matter of insurance. ''It was a light-bulb moment,'' remembers Bonyhady, who had worked in financial services and insurance for two decades. ''The entire population is at risk. None of us know when or how we might acquire a disability. But when it does happen … it has a huge financial impact, and no one can afford it, so the population needs to insure itself,'' he says. Under the new scheme - partly funded by a levy on all Australians - we will have that insurance. But it has been a long journey to achieve that goal. In early 2008, Prime Minister Kevin Rudd called 1000 of the nation's ''best and brightest brains'' to Canberra for an ideas summit. Bonyhady made a brief submission arguing for a scheme that would guarantee any Australian with a severe disability under the age of 65 the support they needed, regardless of where they lived or how they had acquired their disability. He was not invited to attend the summit, but contacted everyone he knew who was, and urged them to champion his idea. In the meantime, a new parliamentary secretary for disabilities, Bill Shorten, had become convinced of the need for change. ''I felt like I'd found this hidden city in our midst,'' Shorten says of his conversations with people with disabilities, their families and carers. ''You know when explorers go looking for cities in the jungle? We had a city in our midst in which people were living behind walls.'' It is a conclusion that the Coalition disabilities spokesman Mitch Fifield was also reaching. ''We had people in exile in our own cities and suburbs,'' he says. ''It really only took a week or two in the portfolio to realise that I'd been operating on a false assumption that because we're a wealthy First World country people with a disability received the support that they needed.'' Shorten set up an expert committee - the Disability Investment Group - to report to the government on ideas from the private sector to better support people with disabilities. Late in 2009, the group, which included Bonyhady, former Australian Competition and Consumer Commission chairman Alan Fels and John Walsh, a PriceWaterhouseCoopers partner, handed its report to the government. Its principal recommendation was for a feasibility study of a national disability insurance scheme. The group had already begun building the economic case for the scheme, examining the potential gains from increased workforce participation, and the savings that could be made by investing in people's lives, for example through home modifications that gave them greater independence. Rudd's cabinet commissioned the Productivity Commission to take a closer look. In hindsight, Bonyhady says giving the job to the commission - a body with a reputation for hard-headed analysis - was a master stroke. But at the time, it also seemed dangerous. ''What would these economic rationalists think about disability insurance? They could have completely panned it,'' he says. The commission published its report in August 2011, damning the existing arrangements as ''underfunded, unfair, fragmented and inefficient''. The economic benefits of a national disability insurance scheme would far outweigh the costs, it said. Ever since the idea for the scheme had been floated, disability activists such as Rhonda Galbally had been working hard to mend the often bitter divisions between disability rights advocates, carers and service providers. ''Everyone had hated everyone,'' recalls Galbally, who is a member of the DisabilityCare board and chairwoman of its advisory council. People with disabilities had been affronted by the fact that they were characterised as ''burdens''. ''Everyone at that stage was the common enemy of the service sector, because they were seen to be failing at every level. I knew that if carers and people with disabilities were separated, we would never get anywhere,'' she says. Galbally convinced Shorten and the senior portfolio minister, Jenny Macklin, to create a single government advisory council taking in all parts of the sector. This was mirrored by a new community-based organisation, the National Disability and Carer Alliance, out of which came the Every Australian Counts campaign. The newly united movement had a rallying point. Less than two weeks after the commission published its final report, then Prime Minister Julia Gillard declared her unequivocal support. Galbally remembers Gillard's response was ''quick and warm and passionate. There was determination in her response, that this was going to be done.'' The following May, the government committed $1 billion to kick-start the scheme in four locations, a year earlier than the commission had recommended. But questions remained about the long-term funding of the scheme, which carried a price tag of about $8 billion a year, over and above the existing level of disability spending by all governments. While momentum continued to build, Bonyhady admits to harbouring daily doubts that the scheme would come to fruition. It wasn't until May, when Gillard proposed - and Opposition Leader Tony Abbott agreed to - a 0.5 per cent increase in the Medicare levy to provide a secure funding stream for the scheme, that Bonyhady felt ready to celebrate with a glass of champagne with his wife, Rae. ''I reckon there was a month there, when I just walked around with this silly grin on my face,'' he says. Bonyhady says many people deserve credit for helping to make the scheme a reality. But he reserves special praise for Macklin, who nursed the project through cabinet and helped win the agreement of states and territories. ''Success has many fathers, but this scheme's only got one mother, and it's Jenny,'' he says. He also salutes those people with disability who bravely shared their stories to help Australia understand the need for change. People like Lillian Andren, a Queensland woman who acquired a spinal injury in a backyard pool accident that left her paralysed and incontinent. She was entitled to only three showers a week under the old funding arrangements and told a public hearing during the commission inquiry: ''The delightful irony is that to receive that third shower per week I must have daily incontinence issues. So the system allows me to sit for four days a week in my own urine to provide me three showers a week.'' Today, that situation begins to change, Shorten says. ''It gives people control over money. They become consumers, not charity … It gives people control over their own lives.'' Galbally says people with disability in launch areas will be sitting down with DisabilityCare workers and being asked about their goals and aspirations. ''Those words have never been used before. It's a whole new way of thinking,'' she says. Read more: http://www.watoday.com.au/federal-politics/political-news/brighter-light-for-disability-20130630-2p56o.html#ixzz2Z5MQXHkA