‘A CRUEL LOTTERY’
As the media and opposition have been furiously searching for (and failing to find) evidence of some wrong doing by Prime Minister Gillard concerning a fraud that took place 20 years ago, a very important bill is being polished up for presentation to the parliament.
It’s one that will hopefully change the daily lives and future prospects of thousands of people in this country.
It’s the National Disability Insurance Scheme – better known as the NDIS – and now we know roughly what it will look like when five sites are launched for a trial run in mid 2013. Take a look here.
Roughly – because what goes before the parliament this week is likely to change. There are many unanswered questions.
As Disability Services Minister Jenny Macklin admits, there’s still work to do sorting out how to pay for the scheme.
What we do know is that the federal government is putting up $1 billion to set up the scheme. Thereafter, the NDIS will cost an estimated $15 billion a year. And with a price tag that big, there’s no doubt a lot of state and territory haggling over policy detail ahead. But the good news is that the opposition has figured there are no votes in playing politics with disability so the coalition is supporting the scheme.
In the trial period – 20,000 people with disability, along with their families and carers, in NSW, Victoria, South Australia, Tasmania and the ACT will benefit.
Every 30 minutes, an Australian is diagnosed with a disability.
It is extraordinary given that figure, that “we have a cruel lottery where the services and support people with disability, their families and carers receive depends on where they live, what disability they have, and how they attained that disability,” as the NDIS website says.
As anyone with a family member with disability would know, getting help is a tortuous, circuitous nightmare of form-filling and phone calls. Even if you stick with it, what you end up with can often be sub-standard or patchy assistance.
The NDIS has a very ambitious aim. It will look at disability as a lifelong issue. Care and support will be delivered on the same time frame.
“This means that assessment will look beyond the immediate need, and across the course of a person’s life. For example, home modifications might be expensive up front, but if they afford a person with significant disability the opportunity of greater independence, or if they mean that a parent carer can continue to care for their loved one, it’s a good investment” says the NDIS website.
The raison d’etre of the NDIS is to give people with disability flexibility and choose in the kind of care they need and want.
But amid this very noble and necessary policy shift, cracks have appeared. And unless they are ironed out or deleted from the draft legislation, they have the capacity to undermine the aims of the scheme.
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13 Responses to this article
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Linda Robinson November 29, 2012
hope it works out! For 10 years I had to get a yearly statement from our paediatrician that our son had not grown out of his cerebral palsy! I was also told how sad it was that I was so desperate for money that I would claim our 2 children had disabilities! They do have disabilities and are far nicer people than a lot I know
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Monica Attard November 29, 2012
Wow Linda. Have heard so many stories of people being treated poorly by the system. Yours is an appalling one. How did they figure you grow out of cerebral palsy?
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Linda Robinson November 29, 2012
It was considered the “trendy” one to claim at the time,I was told. There is an enormous variation in how badly you have it- from mild to being wheelchair bound. Our son has it mildly but has an intellectual disabillity too; he has a pension but works at anything he can so “other people can get the dole”.
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Susan C November 29, 2012
I’ve been trying to get assistance with my intellectually disabled and visually impaired 23yo daughter for many years. The response is always the same – no funding,go away. Having a disability really does still mean that you and your family become 2nd class citizens. . I’m afraid I am a bit jaded now and I will believe the NDS will make a difference when I see it. But I have everything crossed. I am tired and need some hope…
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Benison O'Reilly November 29, 2012
I have a son with autism so I know first hand the costs involved with raising a child with a disability. In our case we spent $100,000 on early intervention alone. The costs are ongoing and include lost income, as I haven’t been able to take on a full time role outside the home for 8 years because of the lack of special needs holiday care. My son is reasonably high functioning, so this is not a sob story, but he just wouldn’t cope with weeks of vacation care over summer. Fortunately my husband is a good earner and as a writer I can work from home and earn a meagre income. Others are much less fortunate.
At least my son was born with a disability so there wouldn’t be any onus on us to sue a third party. I can see the reasons behind it – no doubt unscrupulous employers etc. would try and weasle out of their obligations if they knew there was an NDIS safety net – but it seems unfairly punitive on the poor old person with the disability.
The NDIS legislation appears pretty good when it comes to provision of funds for early intervention, although the proof will be in the pudding.
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Annie Also November 29, 2012
I can help but be suspicious about any ‘new’ help for the disabled. ‘Disability’ itself has wide ranging scenarios. From genetic disability to ‘acquired’ disability, to accident and disease and aging. It is all relative.
Previously it seemed the two main aims for Govt to ‘help the disabled’ has been to 1 Save money and 2 to get ‘them’ back to work. Neither is helpful when taken on case by case situation. Each one is problematic and individual and there is no ‘one size fits all’. For parents it is different from Children who care for their disabled parent…From those who are disabled from an accident ( road, swimming et al) to those who acquire their disability over a long time ( eg MS). For those who have complex medical problems and outcomes it is even more difficult as there can be days or months of ‘respite’ then wham! another set of problems from disease/s arises.
I am suspicious.
I can’t help but be after dealing with the medical fraternity, Centrelink and changes of Govt ‘policy’ over 21 years of my husbands ‘disability’.
Sometimes, just sometimes those living with and dealing with ongoing medical disability just need to be left alone to survive and enjoy the little freedom they have. The one thing they do not need is more hoops and sticks to jump over just to please the ignorant ‘but they get MY TAXES’ brigade. Trying living on a disability pension and continue with specialists and pharmaceutical costs as well as usual cost of living needs….Sometimes just having a week where there is no bureacratic interaction is as much a relief as is a night without pain. -
ro.watson November 29, 2012
Thanks Monica for providing some critique and context. As someone with post traumatic stress I started the ball rolling on state based criminal injuries compensation and then found I could not handle the anxiety. I had to drop the legal actions. I am now on a disability support pension. I very much admire people with the guts and bravery who go through legal action but I feel it is wrong to force people do this. I was once a personal injuries lawyer. It is a lottery about whether one gets compensation. In a car accident with third party insurance available lawyers can bank on getting their costs back from third party insurers. In other fields,it is so much less certain.
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wendy hancock November 29, 2012
yes, I have to convince super insurers that my amputated leg hasn’t grown back and isn’t likely to! Why they put us through these demeaning procedures is beyond me. I have gotten absolutely nothing from the government. I HAD TO PAY FOR MY OWN WHEELCHAIR!! So, since all this happened last November, if my ma-in-law hadn’t been able to help, I would still be sitting in a hospital bed, rotting. The government has GOT to provide more assistance. I don’t even get a Pharmaceutical benefit card for my multiple ongoing medications. It’s disgusting.
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ro.watson November 29, 2012
From what I have seen~ albeit not much~ ancilliary care is paltry. Sorry Wendy you have had such trouble to get a wheelchair. I hate to think of people in your same circumstances that cannot afford a wheelchair. What then? Such a circumstance is not right.
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Rhoda November 29, 2012
When I think of the money wasted on war and guns… and government hides their lack of compassion behind this silly legislation. Who drafted it? Where is their common sense.
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Melissa November 29, 2012
Perhaps vuts to middle class welfare – eg non means tested baby bonuses- cold be used to help people who desperately need it
