The NDIS, make it real
Posted: Tuesday, 21 February 2012 | By: Barbara Perry
Mr Ken Baker, Mr Patrick Maher, Ladies and Gentleman,
I am very aware this morning that having been asked to speak on the NDIS, that I am preaching to the converted. My aim then, is the same as any self-respecting preacher whose congregation has heard it all before- and that is not to lull you to sleep telling you what you already know, but rather to bring perhaps another perspective to what many of you live and breathe everyday.
I note that on the brochure for this Conference that my segment is called the NSW Opposition address.
Let me begin by assuring you that you are going to hear no opposition to reform from me. I am proud of theformer NSW Labor Government's work in the area of disabilitiesand the bipartisan nature of that work. The foundations for a NDIS were laid beginning with the motor accidents authority reform - a no-fault vehicle insurance scheme, something that needs to be expanded around Australia. The Stronger Together packages recognised the need for long term planning and have provided for more than $5 billion in new funding to be invested in respite services, community participation and transition to work schemes. They constitute the largest amount of spending on the disability sector in NSW’s history and came into being through a lot of hard work, consultation and negotiation with many groups, led by people like John Della Bosca, Brendan O’Reilly, and Kristina Keneally.
The package shows the importance of good planning and will be a platform on which the National Disability Insurance Scheme is built. Stronger Together 2 is continuing steadfast under Minister Constance and whilst this is the case, I have a role in ensuring that that package continues to receive the funding and attention it needs. As Professor Peter Craven argues: “Good Governments need strong oppositions” .
But as we all know, because of the difficult realities facing many people with a disability and because demand in the sector is growing, and our population is continuing to age, Stronger Together has to be backed up by an NDIS.
I am aware, of course,of last years Price Waterhouse Cooper’s reports which found that Australians with a disability are more likely to be living in poverty than anywhere else in the OECD, that Australia ranked in the bottom third of the OECD in employment forthose with a disability and also that Australians with a disability are half as likely to be employed as those without. Ironically our economy is much stronger than many others.
But it is in my role as Member for Auburn, that I am reminded every day of the need for a NDIS.
Last Friday afternoon, as this speech was being prepared, my office received three calls in a row, all in relation to people with disabilities.
One constituent called about his inability to get a consistent carer through the ADHC program. He had had a wonderful carer for many years but his provider had to let him go when, due to staff shortages the NGO had to outsource their program.
We had another call from a constituent who was very upset because her mother had been going to respite three days a week, but she felt the respite centre had deteriorated considerably - there was no longer a nurse or OT working there.
We had a call from an NGO who wanted to apply for Federal and State funding for much needed services in my area. They believed they were coming up against a bureaucracy within State and Federal Government who 'did not understand the concept of what individualised funding really meant.
You don't have to go very far to see that, despite all the work, we have a system that desperately needs fixing.
In so many cases for people with disabilities and their carers just getting basic help requires them to develop the tenacity, advocacy and negotiation skills that would rival a UN negotiator.
We all know it just shouldn't be this hard!
The NDIS has the potential to change all this.It’s title may be uninspiring (nothing like Roosevelt's "The New Deal") but, name or not, it has the potential to transform a system that is unwieldy, impersonal and inconsistent into something altogether different.
The fact of the matter is - we need a NDIS and we need it now.
What we are really looking forward to and what we are working towards is the day that the NDIS becomes an accepted reality of our society, when it becomes part of being Australian, much like Medicare is.
Medicare has become such a part of who we are, that Australians on both sides of politics shake our heads in wonder when we hear American politicians arguing whether universal health coverage is a good idea.
Notwithstanding the differences between Medicare and the NDIS (for example the potential the NDIS has to shape services) I want briefly to look at the history of how Medicare came into being and apply it to the NDIS.
Because Medicare wasn’t always a certainty for us.
The Australian Medical Journal has a great article called “Medibank: from conception to delivery and beyond” by Richard Scotton . I recommend it to anyone here who is interested in the process of bringing about change in public policy.
As Scotton tells it, Medicare began in 1968 as a little paper called "A scheme of universal insurance" one he describes as " lacking in detail” but bearing a strong resemblance to our present Medicare program” . He goes on to talk about the "battle for hearts and minds" that ensued once Gough Whitlam took up the idea. Then there was the working through the details - Scotton writes and I quote:
"What I remember most clearly is the immensity of the task of formulating the details of the programof establishing the administrative and operational machinery of explaining and discussing the program with a host of interested partiesand of putting together legislation on the implementation of which the program depended" .
Sound familiar?
There was opposition from the AMA and the Coalition; a watered down scheme under Fraser. In 1984, Medicare was implemented by Bob Hawke. But it was only in 1996 that it was finally accepted as settled policy, when John Howard supported it in the run up to the 1996 election.
Political Scientists such as John Kingdon, Frank Baumgartner and Bryan Jones have done some fascinating research into the process of political change.
Their research shows us the importance of being realistic as well as idealistic as we seek to bring the NDIS into reality. Both researchers make the fairly obvious point that change is likely to come about when an issue is on the Government’s and public agenda. They also note something that all of us here well know; that the process of getting an issue onto the political radar is often hard and arduous, and even when an issue is on the agenda, it does not necessarily mean a policy will change.
Change Baumgartner and Jones say, comes in the form of ‘punctuated equilibrium”; that is, it is incremental. He says, “conflict and extraordinary effort are necessary for major change.”
In a speech to the Irish Parliament in 1993. Paul Keating painted a picture of what these researchers describe in technical terms.
That it’s like sailing a boat. And I quote:
“The process of, reform [can feel like an eternity]one day flying along with the sails threatening to rip apartthe next day becalmed. And then, of course, there are the days when the ship is immaculately on course and travelling at a manageable rate and you are thinking not of home, nor even of the journey, but of the destination”
For us, the destination is when the NDIS becomes a settled and established part of the Australian landscape.
John Kingdon adds that change comes about when there is a ‘window of opportunity’ –an incident which requires action, and brings the issue to the public attention, or a major event such as an election.
"The policy windows often open briefly, and once the window closes the opportunity for change is lost. This window of opportunity has to be combined with the presence of experienced and skilful ‘policy entrepreneurs’ that step in and exploit the opportunities and focus attention on the issue" .
Kingdon describes policy entrepreneurs as like:
"Surfers waiting for the big wave. Individuals do not control waves, but can ride them. Individuals do not control events or structures, but can anticipate them and bend them to their purposes to some degree ”.
There are a number of points here that are pertinent to the campaign for a NDIS. The campaign has many things going for it. The sector now has a clear voice around a goalwhich has brought it together.
We have some very fine policy actors, or “surfers” working on it – people like John Della Bosca, Ken Baker and Patrick Maher leading us in the campaign. We have the work behind us of the Productivity Commission; commissioned by the federal Labor Government. It is no small thing that in federal cabinet Jenny Macklin now wears the hat of Minister for Disability Reform alongside her other portfolios of Families, Community Services and Indigenous Affairs – the first time a cabinet level minister has had the word disability in their title.
We have a bipartisan agreement about the need for a NDIS –something that Medicare did not initially have. There is good reason for this as Anne Manne notes in her excellent essay in The Monthly:
“The NDIS is a proposition of unusual political deftness; a rarity in Australian politics………. Embedded in the scheme are two powerful ideas more often in conflict than in harmony………… One concerns the individual maximising opportunities in the marketplace…… developing initiative and enterprise in a framework of economic prudence………… The other centres on social justice……..our capacity to stand together and utilise our nation’s wealth to develop a strong safety net in order to care for those in need”.
But the downside of bipartisan agreement is that it is often accompanied by little public attention to an issue. Public attention is focused when there is conflict. That is why we should not be afraid of the current debate– it serves to highlight the case for a NDIS but at the same time pushes the issue into the public arena but also may serve to hasten political change.
We need to plan carefully and push for action. We need to ensure that people with disabilities and their carers have a voice at the centre of this conversation; that they are involved in the details and issues.
We need to ensure
- there is equity in rural and remote areas
- staffing and service capacity
- and that the scheme is not exploited
We need to be very aware of the political constraints, and these are significantbut find solutions and put forward other perspectives.
We need to point out, as Martin Luther King did, that platitudes and "lukewarm acceptance" is sometimes just as harmful as outright rejection. We need to be aware of economic realities, but must argue that the point is not whether we can afford a NDIS, but in the light of growing need, that we cannot afford not to have one.
As the Productivity Commission has pointed out, the federal Government, with its capacity to raise revenue, must face up to its responsibility to fund the NDIS. It must be funded justly and sufficiently to meet the needs of Australians living with a disability.
We need people with disabilities and their carers to continue to tell their stories – so that what is often invisible becomes visible.
We need to continue to publicise the problems with the present system – what it’s like to be left out physically, educationally, socially and economically.
We need to name the barriers that stop people with disabilities being able to flourish in society and reach their potential.
We need to keep talking about the plight of many ageing carers and their fears for their children’s future, the lack of flexibility in the system, the waiting lists, the variations in support between city and country……state and state….. the continued lack of coverage for many.
We need to get it right and be very careful in the foundations we lay.
We also need to continue to make clear the consequences of not moving fast enough. Those who wait may miss out on a chance for early intervention. That not supporting ageing parents means that they will be unable to continue to care for their children at home. That denying people with disabilities the opportunity to participate in employment comes at a cost to us all - As John Walsh points out a normal employment rate for people with disabilities would add 1% to our GDP which would far exceed the cost of introducing a NDIS.
We're looking for a better day where a NDIS is taken for granted;when it's a thing that just is. And we know that when the NDIS comes it will not be the end of the story, but a new beginning.
I thank you for being here today, for sharing your stories, for your work, your advocacy. In a society where one’s worth is increasingly linked to one’s contribution to the GDP, what you do is not just countercultural but critically important to the future of our society.
Keating, who knew a bit about reform, said this:
“As a general rule we don’t get blown to where we want to go – we have to take ourselves there. In politics, as in much else, it requires imagination and a political will and that depends on having not just [a] sense of injustice but [the] ability to imagine a better life".
This conference is where imagination and hard work come together to work towards what we know is, at the end of the day, an issue about justice – the implementation of a NDIS.
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