Why Believe In Miracles
NDIS - How we may believe in miracles
Erik Leipoldt
March 2010
“how we care for people with a disability is a fundamental matter that goes to our values and our character as a nation'”
Prime Minister Kevin Rudd (2010)
It is interesting to note that it appears that a number of people and groups have either signed up or tacitly support NDIS, as it is currently crafted and marketed by a select group of experts in banking, business, bureaucracy, competition policy and medicine.
How could this be, when so many things do not add up: for example, it's implicit market/medical values; our non-participation; leaving out vital issues including service quality, our needs, funding for advocacy, the reasons for a "broken service system and so on, discussed elsewhere.
Cognitive dissonance
Which story would you rather believe:
... the feasibility study will need to engage and consult with a wide range of stakeholders.
The key stakeholder groups should include:
people with disability (peak advocacy bodies and individuals, whose needs and care are at the centre of the new support framework)
(DIG Report. Appendix B, p.55)
OR...
The feasibility study should be led by a specialist taskforce drawn from across government and including specialists from outside government and its work should be supported by a dedicated specialist secretariat.
(DIG Report. Appendix B, p.55)
Seems contradictory? They are on the same page of the same report! And we are not the “specialists!” Read on...
In a nutshell, cognitive dissonance says that when faced with two contradictory 'stories' or ideas. This makes us feel uncomfortable and we try to reduce this by either changing our beliefs, attitudes or behaviour about the issue or rationalise it away.
I want to understand so here are my thoughts.
Reasons for scratching your head
I propose there are various reasons why NDIS, as currently presented, appears confusing and appealing at the same time, including the below. Obviously I am not the only person proposing these. I also hear them said - in private. So, here is the smoke, and the mirrors:
- Tapping into real desperation and frustration;
- Tapping into a popular disability movement idea;
- Presenting the problem as a "broken service" problem;
- The correct rhetoric applied to disabling concepts;
- The appearance of a grass-roots advocacy action;
- A well-planned marketing campaign;
- Apparent wide support at all levels;
- Complexity presented by experts;
- Some people completely support all that NDIS stands for.
Tapping into real desperation and frustration
There is no doubt that, despite the billions of dollars spent by all three levels of government, disability-related needs are often not well-met or not at all. Desperation from family carers in particular has been a main feature in the NDIS campaign. Not that of people with disabilities. Not surprising perhaps as the Big Three (Yooralla Society (VIC); Spastic Centre (VIC); National Disability Australia) have a large stake in family-driven services. Nothing wrong with that in itself but a big problem for me is that this campaign appears to have used desperate family carers as a means to its own ends, involving public images of people with disabilities as burdens that are dumped at respite centres, subject of attempted killing by desperate carers even, and placement in segregated and congregated care (the last one through the campaign's juxtaposition with the recent Four Corners program). That is not the type of campaign we should expect from people that say that the needs of people with disabilities are central in their Plan.
There are good reasons why various publicly televised National and State fundraising programs received criticism from the disability movement when they do this in ways that cast people with disabilities as eternal children, to be pitied, and therefore deserving of charity. We do not need to have any more negative imagery heaped upon us by means of the national NDIS campaign (Disappointingly, I am not aware of any strong public voices speaking out against this form of abuse in the name of the NDIS cause).
What does this say about the campaign's actual values and priorities? All about people with disabilities? Or more money?
Though I have my experience of quadriplegia, and am a parent, I do not know what it is like to be a parent of a child or adult with disability and can only imagine that situation and listen to my friends in those situations. I know that, for them also, it is often a life-long struggle with negative attitudes from services, schools, professionals and so on in getting their sons' and daughters' needs met.
I also know of rewarding lives where good, community-based support networks are in place, based on values that put development, relationships and safety of the person with disability first. Not enough of these efforts are properly supported by government, yet these are the sorts of building blocks towards a National Disability Strategy, and perhaps an NDIS, that put the person with disability central. They are valuable parts of the government-funded initiatives of a system of which NDIS campaign can only say it is 'broken.' But why then does the NDIS terms of reference and reports leading up to them completely ignore identifying where and how it is 'broken' (i.e., it does not meet needs or disables people), examination of strategies for changing this (funding always comes with powerful strings) and what positive aspects to build on? Surely this would lead to better quality value for public money!
Of course, the reservoir of frustration and desperation is broader than the family/carer constituency. As someone with experience of quadriplegia I know how hard it is to get good quality assistance for example, and through other involvements, know how some services, negative social attitudes, bureaucracy and social distantiation disable us. Then again, all things being relative, I know things are worse in the Eastern States than here in WA, so am 'privileged' in that respect.
Something must be done but obviously genuinely productive change, any paradigm shift, cannot be borne from anything that contains the dysfunctional-values elements of our disablement. However, my main point here is that the main NDIS campaign strategy now appears to be a broad-cast picture of desperate people in a complete wasteland of services, while promising "revolutionary", "fundamental" change, with the logical effect of people rushing to support such a life raft. But the life raft is actually mainly there for government Treasuries and the disability services industry: the entire NDIS focus, process and terms of reference pronounce it. But that is a difficult and uncomfortable message that many of us do not want to hear. It's the well-researched phenomenon of cognitive dissonance, at work across several of these reasons for supporting NDIS. We are all subject to it all of the time.
Tapping into a popular disability movement idea
A no-fault disability compensation or insurance scheme has long been part of disability dreaming, going back as far as, at least 1973-74. Indeed I also made a submission for a form of it to the national summit in 2007.
Unlike the situation in '73-'74, in 2007, governments observed with wary eyes the annual rise in Treasury expenditure on disability, in services and in pensions. Hundreds of BILLIONS of dollars sucked out of Treasuries, at a growing rate, over decades to come, spells disaster if not fixed. It requires statesmanship with big prizes for who can pull this off. Well, a public levy on disability, like Medicare and superannuation, would shift that burden, to a great extent, to every Australian. Treasuries saved!
In principle all three levels of government would benefit but, taking, in isolation, a tax policy like that to the people, is political kamikaze for any government. However, together with a disability narrative, drawing on a long-standing Light-On -The-Hill-Idea, owned by the 'disability movement', accompanied by a concerted campaign that tugs at the political constituency's heartstrings, suddenly makes this a viable option.
Obviously, some people then sat around and decided how to run this campaign, and who should drive it: using the disability narrative of frustration arising from 'broken services' (hey!, no longer 'unmet need?), by service providers, backed by a government inquiry that reflects in the main the needs of these two powerful interests. 'We' were not at that table, and have not been at any stage from that point on.
I know that, at this point, head-shaking, murmurs of 'conspiracy theorist', and 'cynical' arise for some readers. But how do you explain the discrepancies between rhetoric and substance that I have laid out in this blog, and is also reflected here? Love to hear your thoughts! Yes, I mean you.
Let me give you one historical example. Together with the late, and greatly respected, Dr Christopher Newell, and Maurice Corcoran, we published about people with disabilities apparently being used to serve the ends of the NSW State government, in 2003. Billions of dollars at stake then too. Heart strings pulled. I am not aware of NSW improving its disability services system dramatically since then. I have not heard of a rosy-cheeked, happy "morning after" for people with disabilities there, and the 'kisser' has moved on. Same mechanism at work today, I suggest.
Always beware of grand promises in solving complex issues.
Presenting the problem as a "broken service" problem
As mentioned already, presenting 'The System' in general as 'broken' is simplistic and untrue. Yes, there are many things wrong with most parts of it. But there are also some approaches to our needs, funded by governments, that appear to work well.
But portraying the problem in this way does several things in generating support for an NDIS. One, it taps into a chorus of genuinely disaffected people: They don't get good service, or get none. Fact. They want more and they want better. Fact. The flawed NDIS story, and their factual story converges, prompting a plausibly rational reason to support NDIS. Internal dissonance fixed.
When service providers themselves, backed by government, pronounce that the 'system' they run and fund is broken, that stated motivation for changing things, naturally inspires trust - and relief. Wonderful. The message must have sunk in! All this lobbying and advocacy has paid off! We're now on the same page. We can take a back seat and let them take charge because they've got 'it.' Good old government and services... Welcome aboard this leaky boat we've been rowing for so long! Give us a break!
When the main message accompanying the 'broken system' that will be fixed by NDIS, is that the system is crisis-driven and under resourced, for many that translates as sufficient explanation, rational reasons, for the brokenness they also often directly experience. The presented nature of the problem provides its own answer: more money.
Obviously all that is needed to fix it is more money, which NDIS promises, will be forthcoming. People can be bought out of their desperation. Because human nature, including mine, has parts that prefer a simple message, involving the least expenditure of my energy, money-as-a-fix is very attractive. In our society we still like to say things like "if you pay peanuts, you get monkeys" and "if you pay a bit more you buy quality.' Except, in many cases, if you paid coconuts you might still end up with Great Apes (no insult intended to our intelligent cousins) and I am not aware of credible evidence that the more money you throw at disability services, the better it gets. There is evidence to the contrary (Kerr & Savelsberg, 2001).
Even when we can see that the scheme is restricted to only a narrow medically-assessed category of people, not involving examination of needs, vulnerability, quality of service, and so on, the 'broken system' idea wipes those off the table. Many people will still choose the simple option that feels comfortable, especially to worn-out people: money will fix it and They are the experts that will do it. Alternative options involve (self) examinations that take more time and effort and seem more complex. I understand that as processes explained by cognitive dissonance theory.
The 'broken system' idea is also an attractive idea because most people think that paid services are the preferred, perhaps only, way of helping people. In truth paid services often stand in the way of having one's real needs met, identified in the Shut Out report, where, for example, 56% of respondents said services were "barriers" to their "participation." The inappropriateness and insufficiency of many services in addressing 'needs' is glaring us in the face. Of course we cannot analyse the Shut Out conclusions properly because its analysis is lacking, caused by framing its inquiry around a central concern in disability issues as no more than "barriers" to "social and economic participation." Just like NDIS prompts our answers in the way it casts the problem.
The correct rhetoric applied to disabling concepts
What to think, when you are told, by the NDIS campaign, that: "it's time to change the way services are funded and structured"; make them "effective equitable and efficient"; "NDIS would be a major social and economic reform, on a par with the introduction of Medicare and compulsory superannuation; "; Australia's approach to disability services is crisis-driven and welfare-based. A National Disability Insurance Scheme (NDIS) would change this; and "Australia faces social catastrope (sic) as an entire generation of ageing carers die, other carers and people with disabilities become increasingly isolaated (sic) from the labour force and the community, and many more families collapse under the strain.."
Sounds pretty bad and it seems to be all about our needs.
But as we know:
- NDIS is said to be needs-based but does not define needs nor are they part of the terms of reference
- NDIS is about "social and economic participation" but has excluded "people with disability (peak advocacy bodies and individuals, whose needs and care are at the centre of the new support framework)."
- NDIS is about disability but implicitly defines it in disabling terms, and doesn't define it explicitly at all
- NDIS is said to be about disability but under its medical/market model of disability, highly vulnerable people will fall outside it's scope.
How are the words reconciled with the substance? I cannot do it. Can you?
Again, if people still prefer to accept NDIS as presented to us right now, and be consulted within a framework that excludes our vital issues, all I can put it down to is cognitive dissonance. The "correct" rhetoric helps us to gravitate to the story we would like to believe. Carrots and sticks of course play a role here too, but that's for another day.
There is another troubling use of language involved in describing the guiding panel to the Productivity Commission's inquiry as “independent.” That really takes the cake! As laid out out elsewhere the Independent Panel membership is dominated by the same experts that have hogged the substance and process of NDIS all along, with a token representation of our interests by means of the National People with Disabilities and Carer Council. The only independence it can claim is independence from our interests, not of their own. Independence in such contexts is intended as an important safeguard against conflicts of interest. I have heard people already happily refer to the Independent Panel as a reassuring feature of the inquiry, as if saying it makes it so. In my view this choice of words by these NDIS architects cannot be accidental.
The appearance of a grass-roots advocacy action
People with disabilities and some family-based advocacy have for decades been used to statements of disgraceful anomalies and calls to action.
The NDIS campaign site, run by those interests towards whom much disability has often been directed, looks and feels like one of 'our' advocacy efforts. The images look like they are about us, against an injustice, including calls to action.
Therefore, the tone of its website, predisposes the visitor towards supporting its progressive actions, whatever it's actual message. Cognitive dissonance at work. We see and hear what we prefer to.
A well-planned marketing campaign
Obviously the entire NDIS campaign is well-planned. It's overt disability message is media-friendly. Ample resources seem available from the service system, and government, in time, marketing and money in pushing its quest for financial sustainability. It's well done, people can sign up easily and be cast in the mould of 'supporter' without having to qualify whether they agree with all of this NDIS plan, or a more general idea-in-principle of it.
There is no participative element to it. You can support it as a given Good Thing. That's it.
As you know, we had little real part in framing any reports nor Productivity Commission's terms of reference, nor are we adequately represented on the “Independent Panel' guiding the study. I say that as having one or two individuals with disabilities involved, one of whom is explicitly affiliated with the accountancy firm who analysed the first report (PriceWaterhouseCoopers) towards designing the NDIS tor's and another with a banking affiliation, does not constitute deep or wide disability participation - with respect to these persons.
Apparent wide support at all levels
Because of the ambivalence involved in signing up, not all organisations, shown on its main page, are necessarily supporters of all its aspects.
Because of the obvious political support from the service industry's paymasters, some services may feel it 'politically correct' to join up. As they see other organisations have also joined, it becomes easier to think that this NDIS is alright. If they have any concerns, perhaps they are missing something in the big picture. Surely that many people do not join for no reason?
When leaving a comment on the site, you must first sign up as a "supporter." When I placed my own, critical, comment there for example, I became a supporter in its statistics. I notice many other comments there from people who do not agree with NDIS or just vent their personal frustrations. All supporters.
And... Sorry? Ah, yes, of course you're right to point out that the National People with Disabilities and Carer Council is represented on the “Independent” Panel to the inquiry. But that does not help us in dispelling discomfort about the NDIS process. That council, and therefore its focus on disability, is diluted in its dual disability/carer brief.
Together with people with disabilities, its membership also includes the interests of disability services industries, unions, media, and big business. There is not enough space here to begin to analyse the big conflicts of interests involved here. Therefore I don't accept that the NPDCC could be a voice on the Panel, wholly representing the interests of people with disabilities in guiding NDIS. But its presence sure could be part of anyone's rationalisation that we do have a place with a strong voice at that table.
Complexity presented by experts
It is always reassuring to accept that you cannot know everything and when complex issues come along, you get in the experts. You don't need to get into the detail. In our technological society we hear a lot from experts, and because they know things we don't, we must accept some things on face value. We must have trust in some institutions and people to get by.
With NDIS, as the problem has been cast as one of money and funding, where we, the 'consumers' or liabilities, are described through a medical diagnosis, we got (not sure that the disability movement invited them) people with backgrounds in banking, business, bureaucracy, competition policy and medicine.
In this case we may have forgotten that the issue is actually disability and that we are often quite expert on that.
Some people completely support all that NDIS stands for
Of course there are also supporters who support everything that NDIS stands for. In that case it would help greatly if they would answer some core questions about this NDIS so that I can feel comfortable about it too and can turn my efforts elsewhere.
I want to feel just as comfortable about it as you might. Please explain it to me! I'm serious.
If you cannot, I can only refer back to efforts of making the NDIS terms of reference something, the consequences of which we can all live with for the next decades.
In Summary
NDIS is presented to us in ways where much of the rhetoric masks its actual substance and real purpose. It broadcasts the message that all this is for our interests, but when looking deeper, it is not so.These dynamics are,
in effect, helping us to pull the wool over our own eyes. At this point, only substantial amendments of the inquiry's terms of reference, in ways suggested by us, can begin the long journey towards regaining some trust. Trust that is essential in building a genuinely rich and sustainable framework that is in our interests.
References
Kerr, L, Savelsberg, H. (2001). The community service sector in the era
of the market model: Facilitators of social change or servants of the state? Just policy, 23, 22-32.
Taking action now.
Words without action do not go far. We mean you. Please contact the PM, The Minister and Bill Shorten. Tell them that, given their expressed concerns about people with disabilities and carer/families, you see no barriers to them amending the inquiry's terms of reference immediately as suggested.
For example. apart from seeing his disability portfolio as an economic one, there seem no contradictions in Bill Shorten's words here in embracing our proposed amendments.
Thank you for helping yourself and the next generation of people with disabilities!
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