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.

Assistance at last

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.

Those funds are what it is all about. It is estimated to cost an extra $8 Billion (with a B) per year. That’s a great deal of moola, but given the desperation of disabled folk and carers, and Australia’s bottom ranking among all OECD nations in terms of disability support, I reckon we’ve got room for substantial improvement.

Don’t confuse this with the DSP (Disability Support Pension). DSP is income support – it is supposed to keep people fed with a roof over their head and preferably running water and electricity (though this is becoming increasingly out of reach for many).

The NDIS is supposed to fund stuff like wheelchairs, and personal care so that people get the assistance they need to have a shower. It would also fund all the extra support needed by people with multiple disabilities, or those with some intellectual disabilities who need round the clock care and supervision, for example.

Before I had a kid with disability (my twelve year old son has Down syndrome) I assumed that in a country as rich as Australia, that people with disability would be relatively well cared for. The truth is a little more muddled than that. In most states, if you are lucky enough to sever your spine and smash your brain in a car crash, your rego fees include insurance that will fund decent equipment and supports.

If however, you fall off a ladder, or hit a log water-skiing you are in for a world of pain – physical, emotional, and financial – even your average $2M self funded TPD insurance won’t provide you a lifetime of care – and let’s face it – how many uni students/low income/children have TPD insurance? You can’t insure against a kid born early with cerebral palsy, or near drowning.

It’s been a long running non-joke that if someone you love has a near drowning at a lake, you’d be best off driving a car into said lake and say your loved one was driving.

So, today Julia Gillard announced that her Government will be funding 10,000 people with disability in four “select sites” to be supported through a newly established NDIS from July next year – a full year earlier than the productivity commission recommendation. She also announced that 20,000 people will be funded in 2014.

People with disabilities and their families are excited. I am excited.

But it feels a little like the life of a thousand band-aids. It’s the opposite of creeping normalcy, with each little announcement giving us more and more hope for the future, but none of the announcements actually achieving anything.

There are 20,000 people with disability who need services in South Australia alone. Nearly a thousand of them were at a rally in Adelaide this morning, one of a series held around the country. After I heard Kate Ellis speak on the PM’s behalf, announcing the roll-out of the scheme, I asked the Federal Member for Adelaide “How much money is the Government actually committing?” She let me know the answer would be in the budget on May 8th. I will be one of hundreds of thousands of Australians awaiting those federal budget figures.

I am eager to hear exactly how much money our country is willing, and more pertinently, able, to commit? Then, finally, if the numbers look good, I might consider our wounds healed, rather than just covered over with yet another band-aid.

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40 comments

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    • Ben says:

      06:24am | 01/05/12

      Why does the headline say “disabled families” when the article does not?  The families themselves are not disabled.

    • sha says:

      10:43am | 01/05/12

      Every family that has a disabled member is a “disabled family”.The disability impacts on everyone in that family.I think that is what the headline is referring to.

    • David Gleeson says:

      11:14am | 01/05/12

      neither are the people! Individual have disabilities, they themselves are not disabled. It’s pedantic but important

    • Sam Paior says:

      11:33am | 01/05/12

      There is a school of thought and large number of people with disabilities who prefer the term “disabled” using it because they are disabled by society, not by their own limitations.
      I used to only use the term “with disabilities” but now mix it up.

    • acotrel says:

      02:43pm | 01/05/12

      @Sam Paior
      I agree,
      Tony Abbott has never claimed any special dispensation for being an idiot..  He sets a good example of what can be achieved with determination !

    • Robert Smissen of country SA says:

      12:06am | 02/05/12

      @acotrel, WOW, no matter what the post is about you still make it Abbott’s fault, acotrel you are legend in your own lunchtime

    • nathan says:

      06:33am | 01/05/12

      Instead of middle class welfare this is where money should be going…good to see

    • Admiral Ackbar says:

      12:03pm | 01/05/12

      Yes. And to think they’d have all the services they need, for free, if they had have come off a boat.

    • Rose says:

      12:39pm | 01/05/12

      Bullshit ‘Admiral”, you’re just showing your ignorance and narrow-mindedness with this comment. If you think refugees (that’s what they are if they’ve been processed and allowed to settle) get some sort of mother-load in terms of benefits and services you are absolutely deluded.
      We have a safety net for all in need, it’s not always adequate but it does exist and yes refugees are entitled to assistance, but it is according to the same criteria that applies to everyone, nothing could be fairer than that.

    • Admiral Ackbar says:

      01:48pm | 01/05/12

      Bullshit nothing Rose. You’re showing your own ignorance and narrow mindedness by labeling me as such without even knowing a thing about me. Good work.

      As far as I’m concerened ‘refugees’ aren’t entitled to shit if our own disabled can’t even get the assistance they need. Don’t get me started on how they apparently don’t recieve much because I’m sure you know that’s also bullshit. They get a shit tonne more than our disabled, and certainly, without a doubt, a hell of a lot more than our elderly. And for free no less.

      p.s. There are currently ambulance shortages in regional communities (and some not so regional communities) due to the high number of call outs to detention centres who get preferential treatment over our own citizens. Nothing will sweet talk me into pittying anyone who takes away from our own in need. Boat people, Rose, are illegal. As such, if we had have grown a pair years ago and turned them around like we should, then this wouldn’t even be an issue as we’d have the resources to take care of our own people first. If that makes me a bigot or racist or whatever then fuck yeah, bigots assemble.

    • Rachel says:

      02:09pm | 01/05/12

      Boat people are NOT illegal. It is legal to seek asylum.

    • Sam Paior says:

      02:12pm | 01/05/12

      Hi Admiral,
      While I appreciate your support for people with disabilities, I don’t think it needs to be us or them. We should be wealthy enough to support people with disability as well as refugees.

    • TheRealDave says:

      02:42pm | 01/05/12

      @rachel - its NOT Asylum when you pass through 5 or 6 safe countries and hand over thousands of dollars to people smugglers and destroy your own documentation along the way.

      That’s called Country Shopping.

      Asylum seekers lob up at the first safe haven they can get to to get out of truly horrific and shitty situations.

    • Admiral Ackbar says:

      02:46pm | 01/05/12

      You keep telling yourself that Rachel, after asking yourself if it is still legal for them to be here despite them having passed other acceptable countries, destroyed documents and so on. I seriously could care less about people like that, while resources are being redirected away from our own needy to support freeloading criminals.

      Sam this just shits me to think that we don’t have enough resources to support our own while we fork out a butload of money to people who sneak in the back to door in order to claim the very things we’re struggling to give our own disadvantaged. It shouldn’t be about money at all, because technically we already have it, just wasting it on other things.

    • acotrel says:

      06:55am | 01/05/12

      It is great that Tony Abbott is playing ‘me too’ on the NDIS ! See - he’s not really all mindless negativity and personal ambition !

    • SteveKAG says:

      07:53am | 01/05/12

      What the…........what has Tony Abbott got to do with this story?

    • acotrel says:

      08:14am | 01/05/12

      The only time recently that he ‘s gone bipartisan on any issue ! ! ! An exciting new trend ?

    • Paddy says:

      08:36am | 01/05/12

      Please people, settle down.
      Read Wayne Swan’s lips….there is no money and there is no votes…...it is a furphy to get people running down rabbit burrows with excitement.
      Shorten would like it to happen, however, it is just what it is….simply wind.

      Do we need it…yes!
      If Labor had been serious it would have introduced initial funding, when money was no problem,  for the building blocks essential to underpin the scheme some time ago. This upcoming budget might have a tickler in it…and that’s all it is a tickler.

      Press release and talking up is not a scheme. It is a deliberate act designed to be misleading and deceptive.

    • Rose says:

      09:08am | 01/05/12

      When has money not been a problem? John Howard refused to increase funding for pensioners, disabled etc due to budget constraints (which didn’t stop him wasting billions on middle class welfare though) and the Rudd government weren’t in for that long before the GFC hit. So there has never been the available funds, unless Howard and Costello were just mean spirited and lied about having no money to help those in need,
      We will find out exactly what funds are available in next weeks budget, however the Government’s apparent commitment to improving funding and services makes a very nice change from the norm, where minimum money has been set aside and the disabled have been saddled with services they didn’t need while missing out on what they do need.
      For all the problems of this government, there are have been some significant steps forward, and this is one of them.

    • acotrel says:

      09:30am | 01/05/12

      Rose
      When Costello was treasurer he lost a cool $40B playing the money market with our dosh !  OOPS ! SAWREEE ! But nothing for the pensioners.

    • Bev says:

      09:51am | 01/05/12

      Rose says:10:08am | 01/05/12

      This policy has been launched (like many others) by Juliar with no planning.  It is dependent on the states coming to the party.  All the states have done is agree in principle.  As yet no legislation, no planning and no agreement from the states. If you want a policy to work you need to have everthing in place otherwise you wind up with a disaster.  Labor has had plenty of those.  This could be another. Just another attempted circuit breaker whichmay fail. The disabled deserve better than to be usedas pawns in a desperate attempt to hang on to power.

    • Rose says:

      10:37am | 01/05/12

      I think you’ll find both parties can lay claim to plenty of disasters. Many of us look back on Howard’s years as a complete waste due to his addiction to vote-buying middle class welfare and kow-towing to Bush, among other failings. In tough times the ALP is still making a concerted effort to improve things for the disabled and others, that is something to be congratulated. If the states stand in the way of this it will solely be Liberal Premiers playing party politics with some of the most disadvantaged of our citizens, selling them out to further tarnish the Federal Government.
      This is one of the most important reforms of the past 20 years and should have bipartisan support as well as backing from all the states and territories, just because it’s the right thing to do.

    • Bev says:

      12:48pm | 01/05/12

      Rose says:11:37am | 01/05/12
      About the only thing I agree with is Howards middle class welfare was wrong.

      If not for the Howard government where would the money have come from to save us going down the gurgler.  Labor has managed to spend that plus more like a drunken sailor on leave. If/when a second GFC strikes we will be in the same boat as other countries there is nomoney in the till just I.O.U.s.

      State governments cannot just suddenly find the very large amounts needed to fund this.  No party politics involved.  To do so would have us sitting along side Greece, Spain and Italy.  It is needed and the LNP have agreed but don’t thing we should stuff everything else in the process.  Get the machinery in place first then you can roll out a fair and equitable system.

    • Nerryl says:

      10:49pm | 01/05/12

      I thought the announcement was a political game rather than of any substance. This is todays press release from the NSW government. It is not the states playing games, it is the federal government…

      NDIS FUNDING COMMITMENT MUST BE REVEALED
      NSW Treasurer Mike Baird and Minister for Disability Services Andrew Constance have called on the Prime Minister and Treasurer to fully outline the detail on how the Commonwealth intends to fund and rollout the National Disability Insurance Scheme.

      “The Prime Minister said the Federal Labor Government would fund its share for the NDIS trials to begin next year. However, it’s critical that the States, the disability sector and indeed the whole community knows how this will be paid for,” Mr Baird said.

      “The Prime Minister has raised everyone’s expectations that the NDIS is being delivered, but our fear is that this could be raising false hope,” Mr Baird said.

      “The Productivity Commission recommends that the Commonwealth should be the sole funder of the NDIS. If that recommendation is rejected then the Commission suggests that a pooled funding agreement should be signed with the States and Territories.”

      “The truth is the States have not been consulted on an appropriate funding model, which means the Federal Government is either paying for it entirely or they have not done the work.”

      In 2009-10, State and Territory governments invested $4.7 billion in disabilities – more than double the Commonwealth’s investment.

      “The States can’t do it alone. If the NDIS is to be delivered, we need to see significant funding dollars from the Federal Government in next week’s Budget,” Mr Constance said.

      “Unlike some of the other States, NSW is investing heavily in disability services with $2 billion in growth funding to be delivered over the next five years.”

      “We won’t be using our record investment to prop up the other states that are dragging the chain.”

      According to the Productivity Commission, $900 million is needed for the NDIS trials.

      “If the Commonwealth is committed to beginning the trials a year earlier, then it needs to bring forward its investment as well,” Mr Constance said.

      “The Prime Minister cannot play political games with such an important reform.”

    • Karen from Qld says:

      08:46am | 01/05/12

      As a mother of a young man with a disability I welcome the news but just can’t shake the feeling that this is going to be another “pokie reform moment”. I’m sorry but I just don’t trust Gillard

    • acotrel says:

      09:33am | 01/05/12

      But you trust Abbott ? Well - that makes sense (sort of ) !

    • Peter says:

      10:02am | 01/05/12

      Gillard willt deliver..another Labor Lie…

    • Rose says:

      10:49am | 01/05/12

      And if it works out, will you reassess your opinion of Gillard?

    • Karen from Qld says:

      11:09am | 01/05/12

      Acotrel - I would trust the devil before I trusted Gillard. I will judge Abbott’s performance as PM after the next election.
      Rose - I will believe it when I see it

    • CD says:

      08:59am | 01/05/12

      Sadly I’d suggest you keep a lot packs of bandaids handy. We need Disability Insurance but I fickle Gillard has just used this a ‘feel good’ exercise now that her world is totally collapsing.

      A budget with no money and a tightening like never before but an announcement to spend.  Does it sound right to you?

      I have my fingers crossed for you because I’m one of the disabled but fortunate enough that my partner can support me….for now.

    • Robert McCormick says:

      10:29am | 01/05/12

      This legislation will pass in the House of Reps with the full support of the Coalition. Wilkie’s vote will be irrelevant so any threat by him to vote against it unless Gillard enacts his Pokies legislation (what good it would do is anyone’s guess for outside the ACT & NT, it is the State Governments who control gambling) is a waste of time!
      The problem will arise when this legislation gets to the Senate for no-one ever knows what sort of conditions the Greens will attach to their agreeing to pass it or any other legislation. It all depends on what absurd, economy-destroying plans they will demand the Government pass.

    • WayneT says:

      02:08pm | 01/05/12

      The Greens will be on the sidelines on this as there is bi-partisan support for the Legislation in principle.  As long as Labor don’t hobble the program then it should pass.  Problem will be related to funding.  If the legislation doesn’t have a funding mechanism then it will not pass.  Also what has been lost in all this is that Labor are only rolling out pilot programs, not a full blown scheme.

    • sue oreilly says:

      02:56pm | 01/05/12

      @ Robert McCormick - if the NDIS enabling legislation sails through the House of Reps with bipartisan support, which it will, exactly as you state, then why would it not equally sail through the Senate with the same bipartisan support?? Plus you are obviously not aware of this, but Wilkie has been a passionate NDIS supporter for the past couple of years, and the Greens are also committed to it in their policy platform.
      Meanwhile, as someone who has been following the NDIS saga extremely closely for the past three years now - indeed, having written the first national newspaper story about this proposal when only about five other people had even heard of it, published in the Weekend Australian Magazine in March 2009 - I am dismayed about the extent to which knowing barely anything about a subject is nevertheless no deterrent to people expressing ignorant, alarmist, factually false and/or highly critical comments. Still, I suppose that’s the blogosphere for you, or the “postosphere” perhaps….

    • David Gleeson says:

      11:21am | 01/05/12

      This is the first time I’ve read or heard how the NDIS is going to work, thanks! If it keeps people with disabilities living at home and in the community it will save money in the long run. How much does it cost the nation for a person to live in fully supported accommodation like a hostel or nursing home per annum? Heaps more than supplying in home attended care is my bet. Not to mention the benefits to our fellow Australians who are then ABLE to participate in life to the maximum of their ABILITIES. ( Sorry bout the caps, but i needed to shout there.)

    • Stan says:

      03:53pm | 01/05/12

      Sadly, every substance abuser, ‘chancer’ and ne’er do well (and their lawyers) will exploit this legislation to the fullest. Just like the criminal injuries compensation laws, “psychological”,“stress” and such like ‘rortable’ presentations will take most of the money.
      In a very short time the disability commission will be broke and more and more taxes will be required to fund an ever growing bureaucracy and ever increasing claims.
      The law must be limited to persons with evident physical disabilities only.

    • Sam Paior says:

      04:58pm | 01/05/12

      Interesting position Stan. What about folks with Autism, or intellectual disability? - they frequently have no physical disability but are certainly in need of supports. In fact, many of the stories that make the case for an NDIS so compelling are those of elderly parents still caring for their adult sons and daughters with intellectual (and/or severe physical)  disability at home, distressed about what will happen to their children after they pass on.
      The scheme is supposed to be designed to eventually help 400,000 Australians with disability. That is a pretty low number so will be confined to those with severe/profound disabilities in any case. I doubt the rorters will be interested in shower chairs, nursing care, ramps, occupational therapy, speech therapy, respite, wheelchairs, day options programs, Braille readers etc.
      Of course there will always be a few rorting the system - no system is immune from that, but I suspect it will be minimal.

    • Davoe Magpie says:

      04:59pm | 01/05/12

      Nothing like a good old generalisation is there"Every etc etc yadda yadda’
      I think the medicoes will have quite a say in who has a disablity and who has not.
      “Evident physical disability” misses out on quite a few things that even I can think of.

    • snapperking says:

      05:49pm | 01/05/12

      Maybe Clive Palmer could put some of his Titanic wealth towards these sad Australians and their families?

    • stephen says:

      10:35pm | 01/05/12

      Now that you mention it, I’d like to see the rich, such as Mr. Packer, Palmer, Lew and many others makes an effort to employ disabled personnel and to furnish their workplaces accordingly.

      Because they are noted often in the business and finance, as well as the social pages in our daily papers, I think they should set an example of how a modern workplace could be made attractive and a pleasant environment to be in.
      Their employees would like being there, and would work better to keep their jobs ... disabled and otherwise.

    • Dell and Michelle Stagg says:

      09:12am | 03/05/12

      As the mum of my adult daughter who is 47 years of age and just coincidently has profound severe and multiple disablities…(BTW ...we are not a “disabled family”—- her disability HAS NEVER DISABLED US…in fact we are quite capable and useful contributors to the world around us and in particular the disablity movement, as we work toward achieving “good lives” for people with intellectual disablity)...AND we are also ONE OF THE FAMILIES who lobbied the Whitlam Government, (late 1970’s),for a scheme similar to Medicare.

      How bitterly disapointed we were when the change of governement saw our work go down the drain…but we never actually stopped…many of us continued working in the background over all of these preceding years…to make this “dream” of ours happen. For those of us who “can remember” ...we are now at the point that we can bask, (a littel bit),  in the sunshine of all our hard work, as we watch the NDIS unfold.

      While giving credit to Prime Minister Gillard, we should never forget Bill Shorten, who without his passion and committment to those of us who alerted him to to the the appalling state of affairs for people witbh disability and their famliies, many would probably still be in the “too hard basket”  Thanks Bill, from the bottom of our hearts!! Dell and Michelle.

 

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