This might come as a shock, but last week 11 bills were passed by the House of Representatives and Parliament that dealt with some of the most significant issues of the century so far. And lots of cross party agreement was needed to get this work done.
Substantial events of the week included agreement on a management plan for the Murray-Darling Basin, a quest which is almost as old as Parliament, and steps to create a National Disability Insurance Scheme, a plan once considered unachievable.
In any week, and not just the last, these would have been important signposts of progress benefitting the Australian people.
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As government MPs are inundated with thousands of furious emails about our treatment of farm animals, the nation has quietly forgotten an issue which goes to our treatment of kids with autism and Downs Syndrome, kids with paralysing physical disabilities which require full-time care, and the lot of those families whose relationships and wallets are tested by their children’s needs.
The National Disability Insurance Scheme has not only stalled, it is being chipped away at by people who argue that the budget bottom line simply cannot sustain such an expensive scheme. The NDIS is the easiest thing in the world to set aside on cost grounds, because the cost is immense.
The free market think tank The Centre for Independent Studies has crunched some numbers showing the cost of the NDIS could be $7 billion higher than first envisaged.
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We’re all loving the Paralympics this week, and trotting out the platitudes and clichés like they’re going out of style. Yes, that was a deliberate use of cliché.
Truth is, sometimes there is a place for platitudes. When you watch a bloke like Matt Cowdrey, who overnight swam the 50m freestyle with one arm in a time less than five seconds slower than the able-bodied world record, there’s not much else to say except what a wonderful, brave competitor the bloke is.
The ABC is to be congratulated for showing over 100 hours of Paralympic action, which is a damn sight better than America’s rights-holder NBC, which is showing just four one-hour delayed highlights packages across the full 11 days of Paralympic competition. Way to pay tribute to the 20 Iraq and Afghanistan veterans on the team. But we shouldn’t feel too self-satisfied about the Australian public’s enthusiasm for this event.
At the time, watching my three year old son on life-support in Intensive Care, and being told he would probably die, I thought it was the hardest thing I would ever go through. Joel was left with a profound disability, after sustaining a brain injury when medical treatment for gastroenteritis went wrong.
But even after that, with 15 years as a single parent of three children and 30 years of experience as a Registered Nurse, the hardest was yet to come.
Handing over the care of my 18 year old son, Joel, to Disability Services Queensland (DSQ), after years of fighting for adequate support - that was the most painful thing I have ever had to do. There is nothing that compares to that experience and pain. The nightmares for the five years after relinquishing his care were only made worse by the lack of any level of understanding from DSQ.
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Eds note: Next week news.com.au will be launching a campaign in support of the NDIS with the assistance of the families of children with disabilities. It is the website’s view that this a matter of national importance which can and should be resolved immediately.
Most of us think we have problems. In reality we don’t have any problems at all. If you think you have got problems there is a very special and largely unrepresented group of Australians you should talk to, after which you will skulk off with your tail between your legs, feeling somewhat shamefaced at the imagined hardships in your life.
Last Sunday I wrote a column about the National Disability Insurance Scheme. It was not something I had written about before. The impetus for the piece came about by chance. While getting a coffee on a city street, a boy aged about five wandered up to me and into the path of a car.
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It’s official, the National Disability Insurance Scheme (NDIS) will cost taxpayers around $22 billion a year (gross) in its first full year of operation, a marked increase on the $15 billion figure that is being widely used in the public debate.
The NDIS will provide lifetime care and support to Australians born with a permanent and severe disability or who have acquired one.
The current system of support (which costs around $7 billion a year, not including the disability support pension) has been characterised by the Productivity Commission as “underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports.”
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On Tuesday morning I was getting a coffee near my Adelaide office when something really awful happened.
A little boy aged about four or five wandered up to me on his own as I was waiting at the intersection. He was walking around as if in dreamland. He stepped onto the road into the path of a taxi. A woman standing next to me screamed and I stuck out my arm and grabbed him. His parents were nowhere to be seen.
The two of us stood with him, asking where Mum and Dad were. He couldn’t talk very clearly, and was sort of mumbling to himself.
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I used to think that as a nation, Australians were, generally speaking, a fairly unimpressive mob of hedonistic, sports-obsessed, apathetic airheads.
A little harsh, I accept, but ultimately it was the only explanation I could come up with, for some two decades, as to why and how this wealthy country could treat its weakest and most vulnerable citizens - people with severe disabilities and their family carers - so callously.
Compared with so many other nations, including New Zealand, Canada, the UK and every country in western Europe, Australia’s disability care and support system was - is - an underfunded, ramshackle disgrace. Even the US has vastly more humane laws and publicly funded support services for its citizens with severe physical and intellectual disabilities than Australia.
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While the nation’s leaders spent yesterday haggling over who was prepared to pay for the “launch sites” of the national disability insurance scheme (NDIS), it was just another difficult day for people with disability, their families and carers, supporters and service providers.
For the Keogh family in Brisbane, COAG day was spent mulling over the “thrill” of being able to draw down their superannuation to pay for their a wheelchair accessible van and house modifications, so their seven-year-old son with a disability could move to, from and around the family home.
For Caroline, aged in her 40s living in Melbourne, COAG day was spent waiting for a support worker to help her from her bed at 8am, attend to her personal care, help her eat and settle into her wheelchair for the day at home, until the routine was repeated in the late afternoon. Next month Caroline’s could look forward to her scheduled day of “community access”.
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Sam Paior is a parent of two kids with disabilities. She is a staunch advocate for people with a disability and their families, and is a board member of IDASA (Intellectual Disability Association of SA) and founder of Parents Helping Parents.
As one of the two in five Australians who have a disability, care for someone who does, or both, the NDIS, the National Disability Insurance Scheme has been, to date the opposite of a death by a thousand cuts for me.
The Scheme is kinda like a Medicare for services and equipment related to disability. A scheme where people who need a disability related service, equipment or support can get what they need. With Medicare, you might see a doctor (of your choice) and then pick up your antibiotic prescription (at a pharmacy of your choice), and when a blind person needs a white cane, or an intellectually disabled person needs someone to feed them, it should be just as simple, but it’s not.
Medicare is funded with a levy, but the Productivity Commission, who state that such a scheme for the disabled will self fund within five years, say the funds should come from general revenue.
You might have heard all the hoo-haa last week about the NDIS, or national Disability Insurance Scheme.
In simple terms, it’s like a Medicare for disability. Not many of us use an ICU, but we all pay quite happily, through Medicare, and should the need arise, ICU care is just an ambulance ride away. Disability care and support isn’t that “neat”.
Currently, if you have a broken neck, are incontinent, need a wheelchair and an adapted vehicle, live in NSW and you acquired your disability in a car smash, your personal care support needs will be, for the most part, covered. As will your physio, speech and occupational therapy, your continence supplies (and the personal help you need for bowel and bladder care), someone to give you a shower each day, and even your wheelchair will be supplied, generally in a reasonable timeframe.
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