NDIS – time to lead

In Australia there is this marvellous political construct called COAG – the Council of Australian Governments. It’s meant to promote policy reforms which are “of national significance or need coordinated action by all Australian governments”. In reality it is a stoush. A chance for state and territory premiers and chiefs to prance and preen and belly-ache about lack of money, favouritism or lack thereof and so on and so forth. It meets once or twice a year and yesterday’s gathering was to advance the National Disabilitpy Insurance Scheme. This is a great 10 point document to tell you what the NDIS is and why we need it.

In brief the NDIS is about establishing a Medicare type scheme which would provide a secure and consistent pool of funds for services and supports to the disabled rather than the existing system where there is an annual budget allocation which is never enough and always runs out.

It reframes support to one of investment rather than one of charity.

It places timely intervention and appropriate aids, equipment, training and development as equal investment in an individual’s capacity rather than welfare.

It recognises that  disability is for a lifetime. It looks not just at the individual’s needs now but over their lifetime. For example, you’re profoundly disabled? So you’ll need a wheelchair, ramps, a modified vehicle, a hoist for getting in and out of bed, on and off the toilet, in and out of the shower, on and off the lounge. Right, let’s get that sorted as you are a human being with rights and to not have those things is not acceptable in a civilised society. OH, you’re now 10/15/20/40/OLDER so you’ll need a bigger wheelchair, your transport needs may have changed, an adult hoist/bed etc – let’s update your equipment.

At the moment all of that is in the hands of the family. And if you miss this year’s funding allocation for a bed that can be raised or lowered? Well, you can raise your own funds, go to a charity or just wait.

And you can do that every single time your child grows out of their equipment.

Perhaps you have a highly autistic child or maybe you’re like Oscar with a moderate intellectual disability but relatively mobile and  highly social? Well, you need time with your peers and activities just like any other person your age. On top of that, your unique circumstances mean your mum or dad or carer need some time out. Some time to recharge the batteries and just live for a few hours without the pressures of being the whole world to an individual dependent on you for just the most basic of human functions.

Well you can now ring around, ask others, chance upon some respite services in your area but they only do an intake once a year so your name can go on a wait list for the following year but don’t hold your breath because there’s a big cohort of kids moving up from the primary school group to the high school group and there won’t be any spots unless someone moves out of area.

And on and on it goes.

Having a disability in Australia makes you a second class citizen. FOUR millions Australians have a disability. That’s roughly the population of Melbourne. Then there are the 2.6 million Australians who care for family members with a disability. We’re now looking at the population of Victoria.

Now wrap your head around this cold hard fact:

ALMOST HALF OF THOSE WITH A DISABILITY IN AUSTRALIA LIVE IN POVERTY OR VERY CLOSE TO IT.

In Australia if you are born with a disability or become disabled at some stage during your life you will be pushed to the periphery of its society. You will be forced to look for charity for basic needs in coping with that disability. You will, in light of all this, be punished for being disabled.

People with a disability and their families currently pay a price for disability in the form of social and economic exclusion and a massive lack of choices.

Way to go Australia.

The Productivity Commission report into establishing an NDIS made the very salient point that yes, the NDIS will cost a lot BUT – the overall economic benefits are likely to exceed scheme costs by facilitating economic and social participation by people with a disability and those caring for them.

Imagine that – your provide the additional support to those who need it and low and behold they become functioning members of the community rather than a drain on it. GO FIGURE.

Ironically as state governments cried poor in failing to support and instigate NDIS trials at COAG yesterday, they are staring down the barrel of an economic crisis in the disability sector. The number of people with a disability is rising, someone is diagnosed with a disability every 30 minutes in Australia, while the number of people willing and able to offer unpaid support is falling. The cost of that? To governments? MASSIVE.

So they have a choice. They can wear the massive costs of having a cohort of their population desperately needing resources, not getting them and therefore not able to function in the society OR they can chip in, develop a scheme that empowers and enables that cohort to then have those people able to contribute.

Yesterday there was such an opportunity for our elected leaders to stand up and say, this is important, this must happen, let’s make it happen. Instead they played politics and through their actions – or lack thereof – showed their true colours.

I have moved through incredulity and anger and am now just sad. I despair, truly I do.

 

Onward.

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  • Damien

    I understand why many people have been desperately been trying to maintain this as an issue that has bipartisan support. And of course there are people across the entire political spectrum who are supporters.

    But let’s get real…

    If Australians want this to happen then they are going to have to get behind Labor and Julia Gillard. I can see that Labor is also reticent to come out and state the obvious – the Coalition are not going to fund this policy. Very nice of them. Perhaps there is genuine hope that a bi-partisan position can still be reached. But there is no evidence for this – it is a false hope.

    Labor should get honest and campaign on this issue. The NDIS will only be delivered by Labor – and it is a very strong reason to vote for Julia in the next election.

  • Carli

    I was so angry to read that the Victorian government wouldn’t support a trial. I have a beautiful niece with cerebral palsy and I hear the awful statistics on a regular basis. Feel free to correct me if I’m wrong but she has something like a 1 in 4 chance of being sexually abused and I’m sorry that is not on and it is up to everyone to get behind this, not just those affected.
    Carli recently posted..Four things

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  • http://deminimismater.blogspot.com/ Julie

    In my day to day work I am constantly reminded of this fact – we ‘do’ disability really really badly in this country. It is a national disgrace. Thanks for your ongoing advocacy around this issue.
    Julie recently posted..One day very soon…

  • http://saltycrunchybitterfresh.blogspot.com/ Kathy

    Oh DUDE. I feel your incredulity/anger/sadness/despair, YOU KNOW I DO, but as an American the fact that a program like this was even being DISCUSSED in your government blows my mind. If such a thing were proposed here, there’d be cries of “socialized medicine” and it would never even get out of committee. I know you know this but absolutely everything we’ve done for C has been paid for out of our own pocket because insurance here does not cover treatment for developmental disabilities. Yes. Let your mind percolate on that for a moment. The only exceptions in his 16 years have been (1) the cognitive behavioral therapy he received years ago, which was partially paid for by our mental health insurance (separate thing from medical), until his therapist got so fed up with our crappy insurance company not paying him that he dropped out of their plan which meant we could no longer afford him, and (2) the psychiatrist C is seeing now who is prescribing his new miracle meds, which again is partially paid for under our mental health plan (the doctor visits are; the actual meds come out of our prescription plan), but if this doctor drops out of our plan we won’t be able to afford him either. The stuff that has been covered, including meds, has not been covered 100%; we still pay quite a bit of it. The rest of it, all the years of occupational therapy, all the neurotherapy, all paid for by us. And all 100% initiated and cobbled together by us in lieu of any sort of intake program. And because of the flawed diagnostic system in our public schools here, he receives absolutely no services at school. Accommodations (like being allowed to leave the classroom and go to the counselor’s office if he feels a meltdown coming on), yes. Services (like occupational therapy to render his handwriting legible, social skills group activities, etc.), NO.

    God help us in 2 years when he’s legally an adult. We can carry him on our insurance for a certain number of years yet as long as he’s considered a full-time student, but beyond that he’ll have to hope he gets a job (that is a whole ‘nother kettle of fish that I can’t bring myself to think about right now) with decent insurance or he will be up shit creek and there will be nothing we can do about it. There will be absolutely no services available to him unless he qualifies for government assistance, which right now he and we absolutely do not.

    Ack, sorry, did not mean to turn this into my own rant YET AGAIN. I just find it so interesting the way other countries handle stuff like this, and really I would not know about any of it if not for my invisible internet friends. Keep banging the drum, Kim.
    Kathy recently posted..Summer of storms

  • http://nessaknit.blogspot.com.au/ Nessaknit

    Barry. Time to pull your finger out and make this happen.
    Nessaknit recently posted..Science Fair

  • http://www.allconsuming.com.au/2010/04/100-things/ Gabrielle

    My eldest sister “B” was born severely deaf and with CP. She is now 50. B attended boarding school as a little girl Mon-Fri and we only saw her weekends, broke my heart I missed her a lot. She also attended the the Spastic Centre for therapy as she had irons on her legs until she was 10. B went to “mainstream” high school but couldn’t cope and left after a few yrs without her school certificate. There was no special needs assistance. The government gave us a telephone with a volume control and a ringer that went through low to high sounds – modern technology in its day. They also supplied hearing aids until she was an adult – somehow she was going to miraculously earn enough money to supply and maintain her own. There was no mobile phone to txt, no internet or facebook. There is so much more available now, better but definitely not perfect. I agree with u that providing additional support would take the burden off the community and maybe take a little more pressure off the family (not that we mind).
    Gabrielle recently posted..NDIS – time to lead

  • http://arthousehomelife.com alison

    Kim, as the aunt of a beautiful girl with a profound disability I join your despair over the political game playing on this.

    I will do all I can to spread the word on this, and I hope all your readers will do the same. I can’t think what else I can do to support/promote the issue. Any suggestions?
    alison recently posted..Steph’s Place- ordinary home #3

  • http://www.whatsarahdidnext.com What Sarah Did Next

    What a beautifully articulated post. You’ve covered everything that’s been going through my mind about this issue. It drives me crazy that such an important issue is getting bogged down by political point-scoring and stubborn bloody mindedness by politicians in power. It makes me incredibly angry.

    I hope common sense prevails and we get a resolution and soon. But honestly, I’m not holding my breath. While they’re all posturing and sniping at each other, the disabled community will try to get through each day as best they can. Some will make it, some won’t. They deserve SO much better than this.
    What Sarah Did Next recently posted..Where do bus passes go to die?