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<p>Photo by Mike Bowers.</p>

Photo by Mike Bowers.

Connor Gardiner, 16

Hidden In Plain Sight (Part Two)

“Every Australian Counts” is the grassroots effort to lobby, educate and gently “blackmail” Australia's politicians into making the National Disability Insurance Scheme a reality. Meet the long-time political heavyweight who is behind the strategy and the well-connected businessman who has drafted an inarguable economic case for change.

John Della Bosca knows how to campaign.

The former secretary of the ALP in New South Wales was the architect of Labor's electoral dominance in New South Wales for nearly a decade before entering State Parliament himself to become a respected senior minister with a head for policy detail.

It's said that at one point "Della" imagined he might rescue a fading Labor force in the state by becoming the Premier himself, but a variety of minor but messy personal incidents put paid to that.

Instead, you would have expected him to carve out a profitable, post-political life: advising a property developer, a merchant bank or some such. But he can be found at a cramped cubicle in a shared office in Sydney's CBD leading the campaign to see Australia introduce a comprehensive National Disability Insurance scheme.

He can't be there for the money.

"Nooo," he laughs. The closest he'll come to explaining his motives is a meeting in his electorate 7 years ago, soon after he had been made the Minister for Disabilities, an appointment which he admits had left him, then an ambitious MP hoping to rise in the ranks, "a bit crestfallen".

“What scares the crap out of me is that [government will] fix [the system] in a half-hearted way so that they don’t take advantage of the opportunity we’ve got.”

Asked to meet with a parents group, he was stunned to enter a room and discover elderly men and women in their 70s and 80s waiting to meet him.

"I thought 'I am in the wrong meeting,'" he says, having expected people wanting to talk about their young children.

Instead an elderly man spoke for the group, as Della Bosca recalls. "He said his wife had just died, I think from overwork, and all he wanted to know was what was going to happen to his 52-year-old daughter, from memory, who had Down syndrome and couldn't look after herself. What was going to happen to her after he died? And of course I didn't know the answer.

"Suddenly I got it. I realised how important this was. How unfair it was. And it wasn't just a little problem. It was a big problem and was going to get more difficult. And it was worthwhile committing to — emotionally."

Della Bosca has a way of cutting through a complex policy debate so you can see just what needs to be addressed.

He tells me a story about anxious Melbourne spinal surgeons who inquire whether injured patients in emergency had been in a motor vehicle accident or not. The doctors know the answer makes a world of difference. If you are injured in a car accident and confined to a wheelchair, state insurance systems in Australia will generally provide whatever equipment, modifications to vehicles and homes and therapy is needed to allow you to get on with work and life.

If a home handyman or woman falls off the roof and is paralysed, they will have to fall back on the substandard welfare system which could see them wait years for a decent wheelchair and for the services and therapies needed. Unemployment and poverty will be waiting. It's the same scenario for anyone confined to a wheelchair as a result of acquiring a disability, such as motor neurone disease.

Della Bosca explains that the NDIS would bring the "insurance" mindset into the welfare sector, transforming the entire culture of disability services in Australia. Instead of scarcity, the system would respond to what is reasonable and necessary.

In essence, the national scheme would provide a universal no-fault insurance scheme for all Australians born with or acquiring a permanent and significant disability — because disability can happen to anyone at anytime.

The federal government would pay into a vast national premium fund.

By 2017, the NDIS would provide direct funding to more than 400,000 people with a severe or profound disability, to cover the cost their long-term care and support. That includes those with a permanent or ongoing psychological disability and children undergoing early-intervention therapy.

<p>Supplied photo</p>

Supplied photo

John Della Bosca, Campaign Director, National Disability Insurance Scheme.

This one, centralised agency would be built around the needs of the individual, finding a way to tailor care and support, taking account of every disabled person's goals in life and what support their informal carers may need. For those with the greatest needs, the agency would develop a detailed, personalised support package.

Co-ordinating everything from wheelchairs to vehicle modifications, it would also fund whatever therapy was necessary, organise respite care, employment services, specialist accommodation, support or help with transport.

The NDIS would also do the bureaucratic run-around with government departments, advocating for the disabled clients, rather than having the disabled person or their carer do battle with the system.

Crucially, it would offer disabled people choice and control over how they receive support and who provides it. They would even be able to cash out their support package and allocate funds themselves. (The Productivity Commission proposed a separate scheme to cover those suffering catastrophic injury from an accident.)

It makes economic sense, too.

A detailed report by professional services firm PWC estimates that the cost of inaction becomes greater than the cost of action by 2020.

The report estimates that if enough tailored support were provided, 370,000 disabled people could re-join the workforce by 2050, adding $50 million in GDP. Some 80,000 of their informal carers — most likely family members — might also be freed up to return to the workforce. That would swell GDP by another $1.5 billion.

But policy wonks will tell you that in Australia you need much, much more than the power of a good idea to drive legislative reform.

“There’s a hint of subtle – I won’t say blackmail – but they’re on the political record. If lots of backbenchers from both parties, all parties, are there with the sign saying they support the thing, how are they going to explain themselves if they don’t?”

The Productivity Commission has sketched out this framework for the NDIS and set down a timetable for its implementation, beginning with a full-scale rollout to selected trial regions, now planned for mid-2013.

The Prime Minister Julia Gillard has embraced the NDIS, and Opposition leader Tony Abbott has said it's "an idea whose time has come".

Yet no-one in the political system has committed to specifics: How will the scheme be funded? Who will pay? When will the funding begin? When will enabling legislation be drafted and put up for a vote in Parliament?

One of the authors of both the PWC report and the Productivity Commission's report is PWC senior partner and actuary John Walsh.

Left a high-level quadriplegic by a youthful football injury in 1971, Walsh's meticulous research and analysis over 25 years has been critical in crafting the compelling economic and social case for change. And he is concerned about whether all these good intentions will translate into meaningful change.

"I get very emotional when I see children with disabilities, particularly because I know what they're going to have to go through for the next 40, 50 years. And I suffer for them when I see that. I feel outraged particularly [thinking about] what their future life looks like under the current system," he says.

"What scares the crap out of me is that [government will] fix [the system] in a half-hearted way, so that they don't take advantage of the opportunity we've got," he says. "There's a huge groundswell of support. I'm sure they'll do something. My concern is that they will not do the full package."

The disability sector concluded that what was needed was a savvy grassroots campaign, to bring some blunt force to the argument. And Della Bosca is just the man to help deliver it.

<p>Supplied photo</p>

Supplied photo

John Walsh, partner at PricewaterhouseCoopers.

The resulting campaign, called Every Australian Counts, seems to borrow its feel-good tone from US President Barack Obama's uplifting Yes We Can theme, while engineering a wholesale political blackmail of federal MPs. In the nicest possible way, you understand.

Rather than have professionals spearhead the lobbying campaign, training sessions were run for disabled people and their carers, who were then sent out to see their local MP. Their riding instructions were clear: they had to come away with a smiling photo of themselves with the politician, who would be holding a sign that reads "I Count. NDIS — revolutionising disability services", as proof of their commitment to back the scheme when enabling legislation comes up for a vote  in Parliament.

"One of the problems with disability groups is they go to see ministers or MPs and they're angry. They're inarticulate. They're upset," Della Bosca says. "They don't even know what they want half the time, and the member of parliament feels very embarrassed and uncertain. So they say, 'Thanks very much for the meeting' and make a note never to see those people again.

"So what we wanted to do is say, no, people with a disability have a case to make. And we said the objective is to recruit the member of parliament to be a champion for you, not to tell them they're bastards and the system's hopeless."

So far 100 of the 150 of the members of the House of Representatives have their smiling photos on the website.

"There's a hint of subtle — I won't say blackmail — but they're on the political record. Once you're in the cyber world with an 'I Count' sign in front of them, that's going to count one day in the political debate. If lots of backbenchers from both parties, all parties, are there with the sign saying they support the thing, how are they going to explain themselves if they don't? It's a subtle point made."

Della Bosca openly talks tactics. But he is much more reluctant to speculate about why Australians have been willing to tolerate such inadequate treatment of the disabled by the State.

"The analogy I like [to use] — and it's probably a pretty corny one — is if you had an education system and it was only educating half the kids, or a health system where you're only able to treat half the patients, there'd be riots in the streets. There'd be upheaval of the existing regime," he says.

“There’s this cultural pressure to be like a saint. And if they can put you in that basket then you’re not like them. It’s not what you want to hear, and you hate being pushed away like that.”

"Yet we happily have lived for two generations with a disability system which is only capable of supporting half the number of people who need it. And that's probably optimistic. It's probably closer to 40 per cent.

"One way of thinking about this is, there seems to be a fear of coming to grips with the issue and maybe that has something to do with a fear of disability in Australia, which is more intense than in other societies, I don't know," Della Bosca says.

"We're all in a tizz now in New South Wales [because we had been ranked] second in literacy in the world and we've dropped back to five or six or seven. And we think that's all a bit of a tragedy. And I'm not saying that's not a serious point. But we're consistently bumping down around 25, 26, 27 in the OECD in terms of disability.

"I think you're almost talking about a policy of ignorance. People are deliberately choosing to ignore it," he says.

It's an analysis borne out in the daily experience of the disabled and their carers.

Clare Ainsworth, who cares for a 14-year-old daughter, Grace, who has a rare genetic disorder, says other Australians tend to push her away, leaving her isolated and lonely. It's not so much active discrimination that does it; others distance themselves by using an odd sort of kindness.

"Everyone's always very kind. They look at you and they're very kind to you and they have this light behind their eyes that says, 'You poor thing. You poor dear,'" she says.

"And right from the very start you get pushed into being like a saint. That's what they want you to be. There's this cultural pressure to be like a saint. And if they can put you in that basket then you're not like them," Ainsworth says. "It's not what you want to hear, and you hate being pushed away like that. [You want to say] 'I'm just like you. I'm not a saint. I'm not amazing. If you think this would be difficult, you're right, it is difficult.'"

It is that subtle isolation of the disabled and their carers from the community that is perhaps hardest to define and to tackle.

"Cultural change for us, it's a difficult thing," says John Walsh. "We've seen it in moving from a white Australia policy to a multicultural, ethnic place. We've seen it probably more slowly in the story of reconciliation with Aboriginal people. And this change for the disabled will be something like that.

"We all have those biases — even me, I've been in a wheelchair for 40 years, but I still feel uncomfortable sitting next to someone with a disability, from the way I've been brought up," Walsh says. "Or from the way we Australians think about the model of the bronzed, active Aussie. That's our national identity, and compromising that [by acknowledging], 'Oh we're also a nation of people, a large percentage of which have significant disabilities,' I think that's a confronting thing for the average Australian."

In the next few months, Della Bosca talks about sinking two concrete pillars to make the ambitious, complex National Disability Insurance Scheme a reality. The first is that Parliamentary vote, which he hopes will take place before year's end. It will come in the form of a Bill to establish the National Disability Support Agency, a statutory body with a chief executive officer and a board, which will be charged with rolling out the new system. The second is funding for a significant regional trial of the new arrangements.

These two steps would move the entire scheme out of the political realm, freeing it from the vagaries of electoral cycles and the uncertain support of any future Coalition, or indeed Labor, Government.

"They make it very difficult for any government to undo it, yeah. Once it's underway," says Della Bosca.

"The NDIS is a game-changer," says Kirsten Deane, the executive director of the National Disability and Carers Alliance, who is also Della Bosca's deputy campaign director.

"It will fundamentally transform people's lives. It will take a broken, rationed, crisis-driven system and finally give people with a disability and their families things the rest of us take for granted. [They] are incredibly determined, and they will not stop until this becomes a reality. They won't let this rest. This is the year we want to see some real action."

Part 1 of Ellen Fanning’s story on the National Disability Insurance Scheme investigates what’s wrong with the current system of disability support in Australia. The story features interviews with carers and with Paul Barry, who suffers a rare type of motor neurone disease. You can click through to Paul's blog from our story and read his sometimes humorous, always closely observed posts about the issues of mobility and access for the disabled and government policy relating to those topics.

4 comments on this story
by Katharine

I can not for the life of me understand why you didn't see the perspectives of people with disabilities themselves as being a valid one in your reporting. Since the announcement of the NDIS it has been noted that there has been a failure to continue to consult with people with disabilities and their representative bodies. The way John Della Bosca characterises the representation of disability groups lacks insight into the role of established disabled people's organisations. Whilst this rhetoric continues how do you think that the general population will ever take people with disabilities seriously.

Person with a disability.

March 27, 2012 @ 5:16pm
Show previous 1 comments
by Colin

I'd have thought a good place to start would be a levy, similar to the Medicare levy. A just and compassionate society can't neglect this sort of care.

March 27, 2012 @ 6:02pm
by Barry

While the ndis scheme will be good for the severely disabled needing round the clock supervision and help there are many disabled that are worried it will be used to “reform” and cut out the DSP payment for many disabled people. A read through the Productivity Commision inquiry reports on the gov website is eye opening.

Personaly to me it looks almost to be an effort to privatise welfare payments for the disabled offering a carrot of more funding and a stick:- The Commission looks to be ready to kick the boot into many, by recommending the Disability Support Pension should be reformed as a transitional support benefit and the work test should be removed from it to encourage people to find work. They specifically mention the blind here. How will people with multiple sclerosis or myalgic encephalomyelitis or the blind and others with similar conditions .fare.
Its a worry that the productivity commission that looked into the scheme advising the government was heavily stacked with many more business and finance types than health professionals.

March 28, 2012 @ 1:19am
by Lesley Porter

I do not see that it is a carrot being offered to anyone accept those that are in need. What about those families that are caring for a disabled family member that will never be mobile on their own. Some people do this for a lifetime and could use some respite, some help to also have a bit of a break. Of course there are also those that would like to have a say in their what happens in their own lives and have some sort of autonomy.

So what does it have to do with their pension allowance? What would they have left to pay their way with the same as we all do. It is just about doing the right thing for once.

July 1, 2013 @ 10:59pm
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