Monday, October 5, 2009

NDIS - Best Thing Since Sliced Bread For Australians With Disabilities?

The National Disability Insurance Scheme (NDIS) is a proposal for a no-fault disability national insurance scheme, paid for by a public levy, like Medicare or Superannuation.

We need something because right now some folk get a multi-million dollar pay-out to support them in their high-cost lifestyle as disabled bod, following, say a car accident. But other have to make do with a disability support pension and live in poverty. Just because they were born with an impairment or had an accident they were not insured for.

Plus, numbers of people with disabilities are increasing (from 1 in 5 now) because  of a range of causes,  including that we live longer. How can our society best support them?

NDIS arose from a national "20-20" brainstorm summit courtesy of our Prime Minister Kevin Rudd, who likes such participatory approaches to democracy. So do I! And I too had written in suggesting a national no-fault disability insurance scheme be introduced. An idea whose time has come, so many people think.

So, everyone happy you say? Nothing to write about? Boring blog!

No, no, no! Hang on a minute, let me finish...

I do NOT support NDIS as proposed. Why not? OK, here goes, but be warned it requires a bit of reading.

Oh, and it's relevant to say that I have some 30+ years of experience of disability. I broke my neck in the surf of the Indian Ocean in 1978. And no, I did not drive my car in to it, so no multi-millionaire created there!

I started this blog as a voice for good people who want to have a platform for proposing a better approach to NDIS. Or, rather, towards better overall support approaches. Doesn't necessarily have to include NDIS. Approaches that promise to support us to live good lives together with everyone else. Your stories are needed to show the disability industry, and the government, what is possible with a bit of recourse to the lived experience of disability.

Even though I think NDIS as-is is more likely to entrench disabling attitudes towards us, the public profile that it has mustered is a great opportunity for real change, an opportunity that does not come along that often.

I don't know whether this blog will be able to make a difference. It depends on you really.

Let's see how far this will take us... Coming along for the ride? It's your life!

(I'll give you a hint about this blog. Whose missing in the picture above?)

Till the next post. Be well!


  1. To Dr Lieboldt, Hello Erik
    Your article on people with disability being like the society’s canaries in a coal mine as stuck with me.
    While I agree that the proposed NDIS is too narrow and will unlikely be the total solution to all of our issues, such as respect, full inclusion and etc, substantial change usually occurs progressively over time. Radical change may be welcomed where extreme misfortune is widespread, as is the case here. However, our interests are pitched against those of the much stronger disability industry: the charity model.
    It is my hope that the proposed NDIS will prove to be the first step. It, taken with a United Kingdom style of direct payment model, may lead to further improvements. These two measures may increase funds and, thus, the quantity, if not the quality, of disability services. It could act as a catalyst on which the crystal of quality care can grow.
    Australia’s political system is vast in its scope of interests competing for resources and we, people with significant disabilities, are not significantly organised to vote as a block or to lobby the two dominant parties. I agree, more funding is not the whole answer. But, it is a significant proportion. If I have sufficient supports to enable me to work, participate in recreational activities, etc, then I have a chance to make social contacts. Yes, we can buy love - but we can buy the means to get to the places where we might find love.
    Please keep thinking and writing about this stuff. There are too few of us who can.
    David Heckendorf BA, LLB, LLM
    PhD Candidate, ANU College of Law
    Cerebral Palsy (profound)

  2. Thank you David for your thoughful response. Keep writing please. Great to have a discussion.

    We have made some headway over the last few decades. And I agree that (lasting) social change takes time. It is often desirable that it does because of the many unknowns and risks, precisely to vulnerable people, in any 'social engineering' experiment.

    But long-term plans for fundamental change can be started now, strengthened by strongly participatory processes. This government is a 3-term one so it's a chance in a lifetime for such steps towards something much better Disability 'reform' should not be something ticked off as an achievement, an outcome, in one term. Like the reality of disability it should be ongoing.

    But I don't think there is much of a risk that a magnifying glass of disability-experience held over NDIS and any disability strategies now will overcook those initiatives. The interests of government and industry, that shape them, are strong, and well represented at those advisory bodies that matter in political terms.

    I do think there is a risk in wholly embracing NDIS as pushing us further forward, because it may well entrench the ways things are done now.

    I see a wide gap between the 'right' words of social inclusion and regard for individual needs on one hand and, on the other, market-based industry competition, case management, service technologists and industry competition experts dominating the design of future disability strategies.

    I have not read anything that tells me there is a real interest in taking a good look at what, deep down, makes the disability services industry the biggest barrier to meeting our needs, as respondents to the 'Shut out' inquiry report. Why not? I'm sure at its core it's not just money.

    So far I see no interest in clear analyses of whose interests are served by NDIS: government treasuries; disability industry; tax payer; people with disabilities? I've put us last because I fear that's where we reside in the list. And if the rhetoric is all about us and we truly are last, still, in that list, that feels worse than being told straight out that the government is trying to save itself from future cost blow-outs due to an ageing, impaired society, wants to shift that cost to the tax payer and cannot afford any real upset of the disability services industry as a growing political voice. If that were so I'd feel used and powerless and that would heap further disablement upon all of us.

    I really hope that I am wrong. That there is a secret understanding of the true causes of our disablement by the decision makers, that economic and service technology based values disable us; that somehow there is commitment to a participatory strategy to help services change fundamentally; that the Disability Investment Group feasibility study will prove beyond dispute that there will be substantially more money for meeting real needs; that there is an explanation for how the waiting list and care problems in Medicare, upon which NDIS is modeled, will be avoided; that funding and development of independent disability advocacy is recognised as essential in advancing our position and will be pulled out of a hat now at any moment as an inalienable part of any disability strategy; that people such as yourself and others with disability experience and knowledge will be invited to help design a new approach... And so on...

    When I see such signs I too will jump on board of the NDIS wagon. If they are there and I missed them, I'd be grateful if somebody pointed them out.

  3. Dear Erik,

    I agree with you on many counts. I am expecting the NDIS to deliver ENTITLEMENT to service - the quality of the service will be up to us to monitor, to influence, to challenge and to change. Of course money can't buy love, or relationships, or quality of life - but without it, these things can be more difficult to achieve. I don't think NDIS is promising quality of life, any more than Medicare can promise good health. It is promising that the ENTITLEMENT to a service will be there - legislated, I hope. We will probably need self-directed funding to complete the equation. In this way, the service providers that fail to measure up will disappear through natural attrition.
    I am concerned with this debate. We all remember the debate around Australia becoming a Republic. The waters were muddied and the debate was hijacked. We ended up where we started, although a majority supported change. It would be a lost opportunity if this debate were to go the same way. I am sure that our government will look for any reason or excuse to wriggle out of the implementation of the NDIS. You may just be giving it to them.
    My other concern is that the whole disparate disability sector is being represented by highly articulate and educated physically disabled people like yourself. My experience of disability is quite different from yours. I am surrounded by families like my own who have cared for a son or daughter with a severe or profound intellectual disability for decades. These people have worked so hard to achieve the best possible quality of life for their child, now adult child. They invariably have their person at home with them, even though they are in their late sixties or seventies (and sometimes their eighties or nineties). They have no experience of retirement and they live in fear of what will happen to their beloved family member on their death. They see the NDIS as the means to make supported accommodation for their person a reality. It is their hope that they will live to see their person settled in an out-of-home setting and be around to assist in the transition. This is a large and extremely disadvantaged cohort. Many of them have good ideas about the appropriate sort of community setting for their person, but all the ideas are met with the "budgetary constraints" brick wall. They are not expecting that a service provider will come in, whisk their disabled family member away and provide all the answers. They are expecting to be highly involved and influential in their person's life and in shaping a good model of care. But currently, there is no money to provide even the most basic service and this country's intellectually disabled citizens are being cared for by its ageing ones.
    Please consider this large group of people - both the disabled and their carers, as you make your philosophical arguments. Don't jeopardize what will certainly be the only chance for change this lifetime. Remember, Gough Whitlam had a similar idea back in the early seventies and the fact that it didn't come to fruition has impacted detrimentally on all our lives.

  4. You wrote: ‘I do think there is a risk in wholly embracing NDIS as pushing us further forward, because it may well entrench the ways things are done now.

    Sure. But what’s the alternative?

    My wife, Jenni, and I both have profound Cerebral Palsy and have an annual budget of around $115,000 in total to hire support staff to enable us to live in our own home. At one stage we had approximately 30 support staff over a fortnight from five different service providers. Compared to many people with significant disabilities, I have a high education and well-paying/secure job. Yet, I do not have the managerial expertise, time or interest in managing the staff the support us. The job entails more than deciding which person to employ. Employment laws and awards can be restrictive and confusing. Training and disciplining staff can be stressful. New staff are often less resourced (knowledge & skills). Public funds, unlike pensions and allowances, carry further legal obligations. Bookkeeping and acquitting government funding requires time and energy. If I was given the opportunity to take the government funding that is assigned to my care as an allowance, it would be very temping. I’m not sure, however, that my care would be improved.

    No, I should not have to become a small business in order to get good quality and sufficient support. I want to out-source this stuff in the same way that I hire a mechanic to service my modified van or gardener to look after my yard. Unlike the mechanic and gardener who specialises in a narrowly focused field, however, my support staff need a wide range of talents and skills and be broad minded. They need to be appropriately trained, supervised, resourced and enumerated – what does it say how about how much the society values our care when my support attendant can earn more by walking dogs than by supporting me? The disability industry is far from perfect, but a schema based of the Tort compensation model has limitations as well.

    A significant short-coming shared by many specialist disability service providers seems to be that they control both how much support individuals get and the nature of that support: a charity philosophy instead of a right based approach. A greater problem, I think, is the parallel universals that it sets up. Instead of people with disability using disability services like you might use a mechanic or gardener, signing up to some disability services is like joining the armed forces or going to gaol. Your whole being is consumed. It is like the laws of the natural world no longer apply. The laws, such as duty of care, which is meant to protect us from recklessness, are used to limit our human rights and autonomy. We are nearly never asked to enter into contracts and, when we are, the contracts are toothless and questionable in relation to free will and duress.

    It may be ‘horses for courses’. Enabling individuals a choice across a range of support options, including informal options. Perhaps the NDIS proposal will provide yet another option. But it won’t be the total solution.


  5. The Center for Media Research has released a study by Vertical Response that shows just where many of these ‘Main Street’ players are going with their online dollars. The big winners: e-mail and social media. With only 3.8% of small business folks NOT planning on using e-mail marketing and with social media carrying the perception of being free (which they so rudely discover it is far from free) this should make some in the banner and search crowd a little wary.