The seed of DisabilityCare Australia, also known as the National Disability Insurance Scheme (NDIS) was sown in a conversation in the south-eastern suburbs of Melbourne one day in 2006. On a visit to a kindergarten, Bruce Bonyhady, then chairman of disability service provider Yooralla, was confronted by a woman who demanded 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, the chairman of the board of DisabilityCare, which launches today.
‘‘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.’’
Bonyhady asked Brian Howe – a former deputy prime minister to Paul Keating, and Community Services
Minister in the Hawke and Keating governments – to meet him for a coffee to discuss what could be done. Howe told Bonyhady 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 worked in financial services and insurance for two decades.
In early 2008, the new 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 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 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 feel 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. We had people in exile in our own cities and suburbs.’’
Coalition disabilities spokesman Mitch Fifield recalls a similar discovery. ‘‘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 that 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 innovative ideas from the private sector to better support people with disabilities.
Late in 2009, the group, which included Bonyhady, former ACCC chairman Allan Fels and John Walsh, a PriceWaterhouseCoopers partner with expertise in accident compensation schemes, handed its report to the government.
Its principal recommendation was for a feasibility study of a national disability insurance scheme.The Disability Investment Group had already begun building the economic case for the scheme, examining the potential gains from increased workforce participation, and the savings to future support costs that could be made by investing in people’s lives, for example through home modifications which gave them greater independence.
‘‘I knew that any big policy idea was going to have to run the gauntlet of Treasury, Prime Minister and Cabinet and Finance, and so you had to have an economic case,’’ says Bonyhady, a one-time Treasury bureaucrat.
Kevin Rudd’s cabinet commissioned the Productivity Commission to take a closer look.In hindsight, Bonyhady says giving the Productivity Commission – a body with a reputation for cool-eyed, hard-headed analysis – was a masterstroke.
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.’’
‘‘They provide no certainty that people will be able to access appropriate supports when needed,’’ presiding commissioner Patricia Scott, and John Walsh, who worked on the inquiry as an associate commissioner, wrote.
The commissioners concluded the economic benefits of a national disability insurance scheme would far outweigh the costs. 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,’’ remembers 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 people with disabilities 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.’’
Galbally had convinced Shorten and the senior portfolio minister, Jenny Macklin, to create a single government advisory council taking in all parts of the sector, which she chaired. This was mirrored by a new community 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 Productivity Commission published its final report, Prime Minister Julia Gillard declared her unequivocal support for the scheme.
Galbally remembers Gillard’s response was ‘‘quick and warm and passionate’’.
The following May, the government committed $1 billion to kickstart the scheme in four locations a year earlier than the Productivity Commission had recommended. But questions remained about the long-term funding of the scheme, which carried an estimated price tag of $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, with bravery and dignity, 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 which left her paralysed and incontinent and yet entitled to only three showers a week.
She told a public hearing during the Productivity 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,’’ he says. ‘‘They become consumers, not charity. It becomes a market. There becomes competition to provide services for people. It gives people control over their own lives.’’
From today, Galbally says people with a 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.
Shorten can’t believe how far the nation has come in six years. ‘‘There’s a long way to go and a lot of work to be done, but this is one train that’s left the station. It ain’t coming back.’’
Hope dawns for family
When Jacob Arbuthnot was diagnosed with autism aged 2½ in 2007, his mother, Alana, had no choice but to quit her job to care for him and ask her parents to fund his speech therapy.
”I couldn’t go back into the workforce as planned,” Mrs Arbuthnot said. ”That was a huge strain on us financially – we were pretty stressed being reduced to one wage.”
A year later, the new Helping Children with Autism funding allowed Jacob to receive some speech and occupational therapy, until it cut out at age six.
Today there is renewed hope for the Arbuthnot family, who live in the Barwon district in Victoria, one of the five launch sites for DisabilityCare, the national disability insurance scheme. As Jacob, who attends special school, nears his ninth birthday, help cannot come soon enough.
Mrs Arbuthnot explains that when Jacob had therapy, he made good progress. When it stopped, his acquisition of self-care skills slowed down.
”He has just learnt to brush his teeth,” Mrs Arbuthnot says. ”He has only basic cutlery skills. He needs basic self-care help. When he had Helping Children With Autism [funding] it brought him along much faster with these things. When the therapy stopped he stopped progressing as quickly as he was. We are hoping to regain that through NDIS.
”If Jacob is provided with therapies that teach him functional skills, he has a greater chance of living a purposeful life, actually participating in life, rather than simply being cared for and passing time. Jacob has as much right to meaningful life as his sisters.”
Mrs Arbuthnot also hopes her family will be able to access respite. She worries terribly about her neurotypical daughters Gemma, 10, and Lucy, 4, missing out on normal childhood experiences because going out as a family is too fraught to even consider. They miss a lot of community events in which they would like to take part, such as going to the footy.
”If we can get respite to take care of Jacob at home we could take the girls out for a day,” she says.
”We can’t leave Jacob with anyone except family. My parents are my respite. They’re in their 60s, they can’t do it any more.”
Though DisabilityCare begins today the Arbuthnot family doesn’t expect any help before the end of the year. ”I believe access will be prioritised and we would get seen around the end of the year,” Mrs Arbuthnot says. ”These things take time to implement. I am very pleased it is starting, and we are incredibly fortunate we live in the Barwon district. I am also very pleased it has bipartisan support so we can be confident this will continue next year. You finally feel like it is going to happen.”
In the future Mrs Arbuthnot, a cinema projectionist, would like to return to work part time.
The starting point for families in the launch sites wishing to access DisabilityCare is the access checker, an online form which asks very broad questions to assess eligibility. Mrs Arbuthnot says it showed Jacob would be eligible. So the wait begins. ”We are told we will be contacted as we are listed in the Victorian disability register,” Mrs Arbuthnot says. ”I’m not that sort of person. I’ll be on the phone.”Source: Sydney Morning Herald – As DisabilityCare begins today, Dan Harrison traces its path from some very humble beginnings (Kathryn Wicks)
- The hidden costs of Australia’s National Disability Insurance Scheme (craighill.net)
- Brighter light for disability (theage.com.au)
- The day we stop trying our best and start doing our best (smh.com.au)
- DisabilityCare: Labor’s national disability insurance scheme to be rolled out today (abc.net.au)
- National Disability Insurance Scheme: The Productivity Commission’s Final Report (thepolicytank.wordpress.com)
- DisabilityCare Australia: The national disability insurance scheme (abc.net.au)
- DisabilityCare: a tribute to Parliament’s better angels (abc.net.au)
- Disability care and the NDIS: our readers respond | The people’s panel (guardian.co.uk)
- Rudd held party to ransom – and got paid (smh.com.au)
- Gillard chokes back tears on NDIS (smh.com.au)
- Only fools would rush into disability insurance scheme (crikey.com.au)