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Farewell Stella Young

This morning I took to Twitter as I usually do throughout the day to keep an eye on the latest breaking news and information about politics and the world around us. Cruelly though, the first thing that caught my eye was a newly sent out tweet breaking the sad news that disability advocate and comedian Stella Young had passed away suddenly and unexpectedly on the weekend.

I had to do a double-take. Were my eyes really seeing what was on my phone screen? Still recovering from the tragic passing of Phillip Hughes, now I had to contemplate the loss of another prominent Australian figure. This time a little more personal.

A couple of years ago a report was released by PricewaterhouseCoopers about disability in Australia. It contained some truly distressing statistics in terms of employment and poverty among those with a disability in Australia.

At that point I had been writing for a brief period of time. I had nothing published at that point aside from some thoughts on my own personal blog at the time. I began to furiously write a piece railing against those terrible numbers.

I hammered that piece out in about 45 minutes and shot it off to The Drum, not knowing about the existence of Ramp Up at that time. A short time later I received an email from Stella introducing herself and offering to publish my angry rant on the ABC disability portal.

I had always been an advocate for people with disability, having been born with one myself. But the opportunity Stella gave me opened up a whole new avenue of advocacy I had never contemplated. It gave me the belief that my message, however small and insignificant, could help deliver change in the lives of those with a disability in Australia.

Stella was an intellectual giant – not just in the field of disability advocacy, but also comedy and feminism. She brought her thoughts and feelings to us with incisive wit and sharp and biting humour.

Issues related to disability are all too often overlooked and that people with a disability are often underestimated, even downright forgotten about.

I remarked today that there are two people in Australia I see as having had the biggest impact on disability politics in Australia in the 21st century – both in different ways, but both so important. Stella Young was one of those people. Assisted by the platform given to her by the ABC, but sadly taken away by a narrow-minded funding decision, disability suddenly had an energetic national voice aside from that of Bill Shorten – whose job it is as a politician to institute programs to help the vulnerable.

I never met Stella, but emailed her a number of times over a couple of years with pitches. She was enthusiastic and offered all-important constructive criticism. Despite that, I am deeply saddened by her sudden and unexpected passing.

Knowing her has helped me grow as a person. And her work will help the nation take a big leap forward.

Her voice and presence will be hard to replace. It will probably take a number of people to fill her shoes.

Thank you Stella. Thank you and goodbye

We Must Remain Vigilant

The National Disability Insurance Scheme, now renamed DisabilityCare is a step closer to becoming reality after the Queensland Premier Campbell Newman signed an agreement with Prime Minister Julia Gillard in Brisbane. The agreement confirms the funding commitment of both levels of government to the disability scheme.

The deal will see Queensland contribute $1.9 billion dollars over the next decade and see the disability reform starting to emerge in 2016, before it is fully operational in 2019-20. In signing up, Queensland now joins New South Wales, Tasmania, Victoria, South Australia and the Australian Capital Territory as signatories to the funding arrangements. That leaves Western Australia and the Northern Territory as the only governments still to put ink on the page.

Understandably, excitement is growing about the future of disability care in Australia and that has accelerated with each individual agreement reached between the state and territory governments and the commonwealth. People with a disability around Australia, their carers and families, are slowly rediscovering a long lost hope, that their needs might be sufficiently met by government. Of course there is going to be palpable excitement. Of course there will be some celebration.

But we need to be very careful about how we view recent events. As advocates and supporters of this much-needed reform we must not allow ourselves to get too swept up in the emotion of important days like yesterday. There is no doubt that commitments like that agreed to by Julia Gillard and Campbell Newman are a big step forward, but a lot can still go wrong between now and 2018-19. In fact, there is a need to continue to be cautious until well after the scheme is fully operational across the country. Things can still go a bit pear-shaped.

The first, but most surmountable roadblock is getting the recalcitrant state of Western Australia and the Northern Territory to agree to a funding commitment for the rollout with the commonwealth.

Western Australia wants to sign up but wants more decentralised control of the scheme in the state and that is fair enough, because service delivery should be based on a largely decentralised bureaucracy. Negotiations between WA and the federal government will continue and a resolution of some sort appears inevitable. But caution is still the order of the day here and both the state and the commonwealth must continue negotiations with an open mind and a desire for compromise on the specific issues WA has with the policy.

The Northern Territory will also need to get the pen out and sign a deal with Canberra for the full rollout of DisabilityCare. The NT Government just recently penned a deal to have their own launch site in the Barkly Region. In light of this, realisation of the funding for the full commitment surely cannot be too far away. But again, all possible eventualities must be taken into account, including the negative ones. even though 6 of the 8 states and territories have agreed to terms with the Gillard Government.

Bilateral agreements aside, there is still the issue of where the commonwealth, even the states, will get the rest of the money for the disability insurance scheme, despite the commitments to fund the scheme. At present the agreements are simply words between two parties and in the interest of making sure DisabilityCare happens, the positive developments must be viewed with the utmost wariness until the full policy has actually commenced.

The Opposition too, who will almost certainly be in government come September, will need to be pursued just as relentlessly over its commitment to the NDIS. There is bipartisan support but it means nothing until we actually see the policy up and running.

Finally, we must continue to run a critical eye over the policy even when it is operational. There may be shortfalls in standards of delivery and even funding and we should not be particularly surprised if either of these possibilities arises. In fact, it is completely within reason to expect that both problems may exist, though hopefully the  launch sites will allow enough time to remedy most, if not all potential issues.

With the agreements signed to date between commonwealth and state and territory governments, about 90% of Australians with severe and permanent disability and those that look after them can now have a little more hope.

We need to make sure over the coming years that the agreements are transformed from words on a page to deeds.

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