NDIS And Individual Funding

NDIS (Long-term National Disability Care & Support Scheme) is renewing its emphasis on its abilities to deliver 'individual funding', somewhat of a Holy Grail for many people with disabilities and carer-families. And justifiably so. It promises control over resources to suit one's changing circumstances, rather than be beholden to a one-size-fits-all disability service.

Who would object to it? I would not - in principle. Just as I think NDIS is a great opportunity - if we get it right.

Of course there are various models of individual funding, involving various levels and types of control, through services or manage it completely yourself.

Individual and person-centred approaches are complex and I am not trying to fully explore them in a blog post. I just want to have a quick brush-look at how appropriate the present NDIS plan might be to individual funding approaches.

The questions I want to ask are:

1) Do we need an NDIS in order to obtain individual funding?

2) What sort of values are associated with individual funding?

Do we need an NDIS to have individual funding?

Western Australia has had forms of individual disability funding for some twenty years. So, the short answer must be “no!”

A commitment to go with individual funding, as a first step, takes just that: The commitment to do so. It is a decision that government departments and disability services can make - today. Perhaps facilitated through COAG, though WA did appear to need that mechanism. 

To suggest that only with more money can individual funding become a reality is to do what the NDIS campaign has reflected from the beginning: putting the money-cart before the horse. The mirage is that it's all about money, presumably value-free. 

No need to look at how approaches, that are meant to assist people with disabilities, conceptualise what disability is.

A medical model? Like focusing on people with “severe and profound” disabilities?

A market model? Like casting disability as an expensive burden, or an insurance risk?

Or a social or ecological model, where dominant social values and practices (like that of the medical and economic model) play major roles in manufacturing disability out of impairment?

No, the problem for the NDIS campaign is not enough money and that's all there is to it. It refuses even to include in its feasibility study any investigation of what problems there are in terms of quality service in the system that it trumpets as 'dysfunctional.'

Astoundingly, as a stated needs-based scheme, it also refuses to look at what needs are, and instead has already narrowed them down to the number of 'interventions' a person with a severe/profound disability requires. Why? Because an NDIS that would take into account real needs, informed not only by such criteria, but also by the heightened vulnerability of people with disabilities, might no longer see Treasury balance sheet Deliverance from the huge financial liability of a growing disability pension, services, and low employment scenario, in the way that is envisaged by government

I suggest that the spotlight on individual funding right now is to divert our gaze from where NDIS is flawed: in it's non-participative approach, in not including those issues that are vital to people with disabilities in the study, in its manipulation of the consultation process.

They want to make us think that only through an NDIS can we have individual funding and that, disregarding everything else, is a good enough a reason to support it. I disagree.

And I would certainly object to any medical/market-model/NDIS winding the clock back in WA on its journey in individual funding!

Why not use WA as a model instead, improve on it, and implement it?

Why wait for an NDIS? It's a "Long-term" scheme!

What sort of values are associated with individual funding?

NDIS is based on those sorts of values and practices that manufacture disability out of impairment. Individual funding, or person-centred funding demands very different values to those of the market or the medical establishment – NDIS values.

Individual, person-centred approaches require a high level of trust in and participation by the individual person with a disability and/or family to manage their personal budget in the best interests of the person in need. Financial accountability is also important, requiring trust and participation in this grassroots control.

It still holds true in any country in the world to say that you trust anyone, any government, any organisation, by their actions, not their words. How does NDIS stack up in this regard? No longer true in Australia?

Relevant questions are, how can this NDIS eventually develop such levels of trust at this grass roots level where it has demonstrated to have no trust whatsoever in grassroots participation in researching and formulating the parameters for a study into an NDIS? 

Did it reach out to the disability field in the early months after the idea of NDIS was born at the 2007 summit, and seek its full engagement and participation? Nope.

Is it mindful of the needs of highly vulnerable groups such as:

• Aboriginal people with disability, 
• intellectual disability,
• people with Down Syndrome.
• people with autism, 
• people with disabilities from ethnic and non-English speaking backgrounds,
• people with psychiatric disabilities, 
• and so on? 

Not so far.

Many of them will not be eligible for NDIS benefits. And I have seen no explorations by the people who run the NDIS campaign as to how their needs would be met.

What trust in us is demonstrated by appointing the panel that is “leading” the study to be composed by experts, grounded in the medical and market views of disability, and without real participation from the disability field? And its subterranean level of 'allowing' our participation appears contrary to the UN Convention on Rights of People With Disabilities that the government signed up to.

Actions! Not words!

What the NDIS campaign really wants you to do is to believe that you can grow a mango out of a bush lemon pip. Well, miracles do happen but I don't think this is one of them.

With individual funding there also come risks to the person with a disability, as the 30% of respondents to be Shut Out report remind us when they identified “barriers” to their “participation” by their carers. Obviously, any NDIS would also need to fund, support and encourage development of strong safeguards in this area - as it would have to do for services too. But how can we trust it to deliver any of the sort when it refuses to include the funding and support of strong, independent disability advocacy and other safeguards in the study's terms of reference? Avoid quality, avoid needs? Avoid you!

"Ordinary lives" of people with disability, like most people's lives, are full of change, ups and downs, and what constitutes a "good life" is best found in the processes around any of us. The quality of their relationships, community interactions and so on. Little things often, not easily counted and measured. Trust is required in such processes.

But how can an NDIS that started off with an accountant's report on which medically-labeled category of people with disabilities cost the most, based on interventions, do this?

You tell me.

An NDIS that would deliver individual funding must be rooted in needs at that grassroots level and accept enabling processes that it cannot count.

Amend the terms of reference now to make this happen.

Time and again we are prompted to ask whose interests are primarily served by this NDIS? So far it is not apparent that it is us - people who have disabilities. For an NDIS to deliver any sort of individual funding that will work to our benefit it would need to commit to a different concept of what disability is, of what real needs are, of what participation is, and what constitutes quality in being of service to people in need. Different values and attitudes to those it is displaying.

Even as we stand at the threshold of community consultations, as framed by a small elite group, representing interests that are not necessarily ours, we may still have the power to do something about this. To do that we must believe in the importance of changing the parameters of the inquiry that is about to happen and in our legitimate cause to do so.

Changing terms of reference has been done before. 

So far, regrettably, there have been few public critical disability voices trying to engage with this huge opportunity that an NDIS represents. If these voices do not let themselves be heard now, where it counts, future generations will scratch their heads why they didn't, and why they have to live with more-of-the same.

More of those same disabling values and attitudes that once fueled the disability movement to raise its voice in the first place.

 Take Action Here

Is the government no longer committed to NDIS?

Today, 21st March signifies just 10 days until the start of April. The consultations around NDIS (recently renamed Long-term National Disability Care and Support Scheme) are said to start then. In reality of course we have at least 11 days as surely these consultations would not be announced on the 1st of that month.

Is the government fully aware that we need a big disability voice to get through a scheme that will affect people with disabilities for 20-40 years in this country? If it is, then why is it undermining this unique opportunity for fundamental change for us by not responding to calls to making the inquiry a fully participative one, and include those issues that are vital to us?

Questions, vital to our interests, were asked of FAHCSIA, the Minister and her Parliamentary Secretary, Bill Shorten, but have gone unanswered so far. 

Hardly revolutionary stuff about the terms of reference under which we will be consulted, like:

• Include examination of needs in an inquiry that says it's about a needs-based scheme;
• Look at the reasons for the service system that the NDIS campaign admits as broken;
• Look at building improved quality of service and what that quality is;
• What is the disability model under which the inquiry will operate?;
• Have meaningful representation of disability interests on the Panel, leading the inquiry;
• and so on...

To date the government has excluded meaningful disability representation in those forums where the mould for the present inquiry into a national care and support scheme was cast. If no amendments  are made to the terms of reference for the Productivity Commission's inquiry by the time consultations start, we will be left responding to those questions that the government wants answered. Questions into which we had no real input.

The government has so far been unresponsive to requests it make its inquiry one that can really benefit people with disabilities. Does it only say it wants one but plays another game? Is it, in fact, in breach of parts of the UN Convention on Rights Of People With Disabilities it signed up to, at least in the way we have been excluded from meaningful representation?

Honouring disability contributions and trusting us

We need to know as we already have “writer's cramp” from contributing to frequent inquiries, for decades. Some of us must type them, one letter at a time, using hand splints, a headstick or through speech-recognition software. We drag ourselves off to consultation hearings at our considerable human and financial cost. Will the government honour our effort and trust in yet another consultation? 

Will it actually now trust the disability constituency and “allow” our genuine participation on the Panel that leads the inquiry? 

Include our vital issues in the inquiry? 

No more stage-managing of our voice?

No more negative imaging of people with disabilities in tugging at public heart strings?

Is the government no longer committed?

It would be easy for the government to support a successful strategy towards passage of a great national care and support scheme by changing the terms of reference, even now. The government's words would certainly support doing this. Such as:
"Practically what disables people is barriers which our society puts in the path of people with impairment to be able to enjoy full participation."(Bill Shorten, 2009)

Bringing us along in a fully participative way, involving those things that matter to us in this inquiry.

Precedents for doing exactly this, exist, in a very similar inquiry, at another time when people decided it was time for a really big change.

If it makes no effort to do so, in engaging with our vital concerns, then we must question its commitment to fully inform and involve all people with disabilities towards a successful outcome in a national care and support scheme that means positive and enduring change for us. Not just more money, from a different source.

Are NDIS campaign calls for a “united disability voice” just hollow?

We will know in coming days.

NDIS and the UN Convention on Rights of People With Disabilities

Check out the UN Convention here for yourself, in particular the Preamble, clauses "e", "f", "o" and "k." 

"... persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them." (UN Convention on Rights of People With Disabilities, Preamble, "o")

Surely, those framing this Convention did not intend for "active participation" to mean: " people with disabilities being consulted about questions, that are vital to their wellbeing for the next 20 years, framed for them by others, the consultancy process overseen without their real participation, and analysed by accountancy firms..."

You can take action here.

Former judge a conspirator?

Former Judge Tony Fitzgerald led a major inquiry into government corruption in the 1980's in Queensland.  He has now published a book called The Fitzgerald Legacy: Reforming Public Life in Australia and Beyond. 

How may his observations be instructive in the current NDIS process and substance? As readers of this blog know, it has been led by an exclusive club of those with vested interests while excluding people with disabilities who are its stated central concern. The NDIS substance has also been marketed as in our best interests while, in effect, it seems we are being used as  means to ends, which are in some important ways contrary to ours.

To some people our critique is relegated to that of the conspiracy nutter corner, despite our evidence-based analysis. But when a former judge says the same things of government and vested interests that run our country in general, to those we observe in NDIS, we must surely take notice. This is a man who intimately knows how government ticks and the anomalies that it can involve.

In his book he says that "the electorate is little more than an audience to a substantially rule-free political contest." 

Furthermore, he writes:

"Careerists with little or no experience outside politics learn their craft in party administration, politicians' offices and supporters' organisations prior to party preselection and entry to parliament."

"When conduct is legal and the political price is not too high, ethics become irrelevant or worse, a sign of weakness and ignorance of 'realpolitik'."

Such may be the dynamics that underlie NDIS also. The government has framed the answers in advance in the way it asks the questions. This seems true for the Shut Out report as it is for NDIS. It is important that we do not pretend that we are truly being consulted about an NDIS within a framework in which had no part and which excludes those issues that are most vital to us. Demand the terms of reference be amended forthwith. Gough Whitlam set a precedent for doing so in 1974.

As Fitzgerald says "until official misconduct becomes egregious enough to overcome community cynicism and generate public outrage, few Australians seem troubled by, or even interested in, structural and systemic flaws in our political process and public administration." But we do not need to be like that.

Lets make a difference and have an NDIS that is worth having. Act now.

Why do we so easily accept NDIS?

It's simple, when you see it all laid out how we could come to believe in the miracle that is NDIS. But once we understand how we are encouraged to rationalise our discomfort about this NDIS, then what excuses are left for letting them do it to us?

But there are additional, and powerful reasons.


Other than cognitive dissonance, carrots and sticks are part of getting this NDIS through too. Always are in politics. One huge carrot is the big pile of money that NDIS promises. Another may be the proposal for a new NDIS-funded national disability research institute (DIG report), complete with a proposed charter (involving, inter alia, commercial applications of the research). Might keep some otherwise critical academics busy. Would it not be preferable to fund many different, independent disability research projects, ensuring a vibrant research environment, not wedded to one huge institute with values like that upon which NDIS is based? And so we enter into another 40 years of market/medical ideology making people with disabilities live unsustainable lives for sake of sustainable budgets.

And the sticks? Well, of course, disability organisations need funding. For some it may be an issue whether they can afford to bite the hand that feeds them. It's a difficult dilemma for some. Do you look the other way completely so you won't have to say whether the emperor has clothes; say you think you like the underpants, or even, all of the attire; or an in-principle declaration that clothes would look nice. You cannot survive if the government pulls the rug out from under you. Ugly business.

Then there is the idea, with some historical justification, that Labor is the best side to get things done for people with disabilities. Certainly Whitlam had a genuine personal interest in a no-fault disability compensation scheme for our benefit. The Hawke government started genuine, and participative reforms with its Disability Services Act and its Principles, subsequently undermined by a service lobby. But this government has refined the rhetoric while being wedded to market ideology and thereby perverting care.

True, we could easily be worse off under an alternative government. But when do we reach a point that we say "enough is enough", if we show a united voice, if we demand that our needs are to be recognised, that we must take part in our own destiny, that presently the character and values of this country are far from a shiny reflection of the way its treats its most vulnerable people... If that point ever comes, the time is now. Not tomorrow.

If this government cannot accept our most reasonable amendments to the terms of reference of an inquiry that shapes our destiny for decades, amendments that will have it recognise our needs and have us participate, it would set a low benchmark indeed. It will be long road up from there...

NDIS: Everything About Us Without Us

Erik Leipoldt PhD
March, 2010

A national no-fault disability insurance scheme (NDIS) has a lot of merit in principle. But the NDIS, as it has now been shaped and is reflected in the Productivity Commission's feasibility study towards it; in the Disability Investment Group's (DIG) report; and in the conduct of the NDIS campaign itself, has become part of the problem for people with disabilities.

That NDIS has real potential for a further disablement of many people with impairments. That is because of the values framework in which NDIS is set, and because of its processes to date, which make it clear that NDIS is, primarily, about getting people with disabilities off the government's balance sheet as an economic liability. In its rhetoric NDIS places the interests of people with disabilities central. Analysis of its substance reveals it puts them last.

The disability movement often asserts “Nothing About Us Without Us”, but it seems lots has happened without 'us' on this one, on a wide-ranging initiative that may shape the way things are done in the 'disability industry' for decades to come, being a central plank in the National Disability Strategy.

Values and interests

Our internal values drive everything we do, whether we are conscious of them or not. It is why organisations commonly state at least their vision and mission, and often their beliefs and values. So, what values and interests drive NDIS now? Well, none of these are articulated in any of the above-mentioned material. But we can deduce them from the terms of reference, NDIS (non) participative processes and things said by NDIS proponents. So, what is its view of disability? It's an insurance risk and, by extension, a burden. Read this: “An NDIS would transform the way we think about disability, moving it from a welfare and charity issue to a risk and insurance issue” (Bonehady, 2009). The recent name change to  Disability Long-term Care And Support Scheme does not change this in any way.

Does that sound like more of the same in outcomes that people responding to the Shut Out report were trying to get away from? Perhaps worse. Here are two disability voices from the Shut Out report (Shut Out, 2009):

“More often than not, people with disabilities are seen as recipients of services and a burden rather than equal members of the community”
and

“Social attitudes have not developed in isolation from the ways that we have historically responded to people with disabilities. Nor can we be adequately addressed without changing the way we continue to respond to people with disabilities. It can be argued that the negative attitudes, meets, stereotypes are both the cause and the result of social exclusion for people with disabilities through service practices that segregate and congregate people with disabilities.”

It is not as if disabling values were not already applied in the disability services industry. Its market view of disability service as a business is in no small part to blame for the questionable quality of many disability services. Its values and, arising from them, spending priorities, are a greater determinator of quality of service, than any amount of money could be. But this NDIS would cement and amplify such disabling values even further.

It is clear that if we think about disability as an insurance risk and a burden, we can not possibly construct an NDIS that would facilitate people with disabilities' belonging, wellbeing, nor valued status, as a true social and economic participant. The tension between that NDIS belief about disability and any funding options leading to service and support that people really need, is great indeed.

The NDIS that I would support is about welcoming people with disabilities as valued human beings alongside everyone else. That represents a fundamental human need. If acted upon in delivering services, social support and equipment, in an attitude informed by genuine care (Tronto, 2008) we would see a better quality of being-of-service. Dollars would go further as real needs would be addressed.

“Compassionate individuals construct institutions that embody what they imagine; and institutions, in turn, influence the development of compassion in individuals" (Nussbaum, 2001). The reverse is true too.

A scheme that ignores examining reasons for the "dysfunctional" service system that it describes as such, while advocating competition for improving service quality among a bad lot, while also ignoring funding for much needed disability advocacy, (McMahon, 2006), does not smell good to me.

Disability and the Market

NDIS is based on a market view of a disability services industry where needs can be quantified, solutions bought and delivered, in a commercially competitive environment. Why do I say this? Well it has been said explicitly by prominent NDIS proponents. It is to operate efficiently and effectively arising from competition within the disability services industry as a market of options.

The Productivity Commission, commissioned to do the feasibility study for an NDIS, is as its name suggests, and by its charter embedded in a worldview of life as predominantly described by economic needs. This view contradicts seeing disability as a normal part of a full life, part of the initial rhetoric in the NDIS campaign. People with disabilities are of course much more than just consumers. And care should be about much more than just being an industry.

Care towards a full and good life is firstly about facilitating positive relationships, safety, human growth: fundamental needs. In market-based services you cannot count or measure these processes neatly, as outcomes so they do not count. The 'number' of 'interventions', i.e. the number of times some people need help in 'tasks of daily living', can be easily quantified as economic goods. It's what the Price Waterhouse Coopers report did, an accountant's assessment of OUR needs for an NDIS. But if that's all there is, what sort of a life is that? A life described and proscribed by services. Normal? Full? Impoverished! People as commodities in a market! But then what's new about that (Sherwin, 2004)? NDIS is certainly not the paradigm shift it claims to represent.

Conflicts of interest

Of course, NDIS is not just for people with disabilities, it is also to be for their carers. Indeed the Productivity Commission's terms of reference make this clear. That only leads to raising the issues of conflicts of interest and needs - and the need to stress that people with disabilities should be of first concern in an NDIS.

A number of parties have an interest in the NDIS. First, people with disabilities want better service. Informal carers are worn out and the paid carer system often lacks quality or sufficient funding to run it. Government is worried about economically unsustainable numbers of people on a disability support pension. Disability services want more money. Taxpayers demand judicious use of their money.

Whereas these parties have some overlapping interests, some of their interests also conflict. For example 30% of responses to the Shutout identified carers and families as “barriers to their social participation” (it is unfortunate hat any Shutout analysis does not define 'social participation' or 'barriers', but what can you expect from accountants – KPMG – who analysed the responses). 56% identified disability services as “barriers.” Yet NDIS does not include investigating funding any strong disability advocacy or quality assurance mechanisms for disability service. It seems clear therefore whose interests NDIS will serve first. It is that of government which is desperate to save its Treasuries from a ballooning disability expense amounting to hundreds of billions of dollars over the next decades. Closely allied with that interest is that of disability services who want more money but, again, who also say nothing about improved quality or safeguards such as independent advocacy.

Of course, people with disabilities are also that group that carry the smallest amount of influence or power. But their issues pull at the heartstrings and so we have seen them described as burdens of carers by NDIS spokespersons, and by the media that is used by them. Part of the implicit NDIS values framework is thereby revealed.

Don't get me wrong, I do believe that NDIS must of necessity be a compromise between these various interests, each possessing their own legitimacy. But I also believe that honesty and openness in declaring these various interests and balancing them in such a way that the interest, that of people with disabilities, is advanced and safeguarded as primary, would contribute to a better NDIS for all. That this has not been done to date is a worrying sign.

NDIS does not define what disability is nor what needs it aims to meet, not in the DIG report nor in the Productivity Commission's terms of reference. Yet it says its approach will be “needs-based” – andeffective! In the entire DIG report the words “essential needs” are mentioned twice without any clues to their meaning. No discussion at all of the nature of needs for people with disabilities. How may “essential needs” be different from fundamental needs? We can guess, yet a clear understanding of (even consumer-) needs has much to do with the effectiveness of any program (or business), as any businessman will also tell you. There is a significant number among those who were members of the DIG and are now on the Independent Panel to the Productivity Commission's feasibility study, who are business people. The lack of a description of needs to be met, by these people, is alarming. The dictionary needs re-writing on the meaning of "independent" or we must accept its violation.

Two, or four, tiers?

It is clear that NDIS approach will mean a two-tier system. One tier for those who cannot participate in the marketplace. Another tier for people who are deemed to be able to. Sounds good? What about those carers who will be asked to move into marketplace where their role is taken over by paid care delivered by a service system, which is under little constraint of quality improvement? What about the needs of these service users? The terms of reference for NDIS do not mention quality assurance, nor independent evaluation mechanisms of NDIS itself. But the DIG report does mention the possibility of an advisory council of stakeholders comprised of all of the above interest groups, where service quality concerns can be raised! Really?

But perhaps we should talk about four tiers. Because, what happens to those who need disability services, who are in the work force, and are not among the eligible NDIS group of those with severe or profound disabilities? What about those in need of disability services, who do not fall within the medical criteria of severe and profound, or moderate disability? It is not discussed. No mention in the terms of reference, so forget raising them in the consultations. Outside the terms of reference.

Vulnerability

Now, while we are talking about this eligible group of people with severe or profound disabilities, as mentioned in the terms of reference, let's have a look at its appropriateness. It does not seem sufficient or appropriate at all. Vulnerability would be one of the better criteria for deciding who benefits from NDIS. Let's take these examples. 


It is well-known that Aboriginal people with disability are among the most highly vulnerable in the Australian disability population because of racism and their devalued and disadvantaged social position. Add any disability on top of this and vulnerability to neglect, isolation, abuse and exploitation goes through the roof. You do not have to have a profound or severe disability for this to happen if you are Aboriginal. Aboriginality plus say, blindness, deafness, or amputation resulting from diabetes, could make you more vulnerable than a profoundly disabled white person. Moreover it is also well known that even the scarce advocacy that is available in the disability area is culturally inappropriate for Aboriginal people and thus ineffective. But their eligibility for NDIS funding seems remote at best.

Further, we also know that people with a low level of intellectual impairment are highly vulnerable, in certain situations. The same goes for people with psychiatric illnesses. Australian prisons are known to have more than 10% of people with disabilities in prison. Highly vulnerable? In need of support? Yes! But under this NDIS it seems they will not get it. The more we go on like this NDIS is shown up as ill-conceived, based on inappropriate values – unbalanced. Cooked up by financial managers and checked off by accountants. No love in it.

Participation

What is participation? For a scheme that has social and economic participation in its banner, as NDIS does, it is curious that the NDIS campaign, the DIG membership itself, and the independent panel to the Productivity Commission's study are all dominated by interests connected with banking, business, bureaucracy, and competition policy. No real consultation with the disability movement is evident, no representation of disability advocacy, no prominent disability spokespersons, or people knowledgeable otherwise in disability policy and human services are evident anywhere so far! Yes of course, NDIS will be subject to the obligatory community consultation. We can have “our say” then. Meanwhile a solid NDIS value foundation and structure has now been laid, as described in the Productivity Commission's terms of reference.

Any community consultation can now only fiddle around the edges. So why should anyone trust that a future NDIS, crafted by these people, will include meaningful participation in how the scheme will operate, or in any services such as it may enable to to be provided? And trust of course, is an essential ingredient in service delivery, a sign of love and respect you could say!

NDIS debate

The NDIS debate has been very one sided and emotionally uncritical. I think some reasons for this include the promises made by NDIS spokespersons for what the scheme may deliver in superlatives like “revolutionary”, “fundamental change”, and so on. Of course desperate people reach out to the straw that NDIS represents to them, particularly with such big promises. Will the NDIS Creators be around when these promises fail to materialise?

Secondly, NDIS is presented as an obvious Good Thing. How would one dare suggest it is not? A few carers have contacted me to support much of what I have said about NDIS, but dared not speak out publicly, for fear of ridicule or any negative consequences from their essential service providers. Those may be isolated instances but perhaps there is more to this.

Thirdly, the scheme has such obvious support from powerful interests and is presented by highly 'competent' and powerful people with knowledge of economics and assessment, while overwhelming in its complexity for many. Furthermore, they, and the government have appropriated the language that disability advocates once used: “broken system”, “unmet need” (well, “demand”, as the terms of reference revealingly put it in economic terms); demanding “fundamental change.” Consequently NDIS is difficult to respond to it. Who wants to believe that institutions in which we would love to put our trust, nay, often need to put our trust, would say one thing and do another?

Fourthly, people generally do not have a great sense of history in this area, particularly not those who are new to disability. Old lemons can easily be sold for new.

Conclusion

My arguments are about fundamental things that we must get right, and the time is now. In that sense NDIS is an opportunity. As things stand it is quite possible people with disabilities will be worse off under this NDIS.

Where there are positive aspects to NDIS, they are undermined in principle by its view of disability, undefined needs, and non-participatory approach. Sure, social and economic participation is probably good – depending on their meanings, but are not not inclusive of our fundamental needs. And I fail to see why getting person-centred, individual funding depends in any way on having an NDIS.

No problem with more money for quality service – if spent wisely, according to needs. But how do those who support NDIS, because of its central promise of entitlement to services, propose to steer it towards an entitlement that is really worth having? I would love to hear their arguments, but there have been none.

How can balance and focus on real needs of people with disabilities be restored at this point? Perhaps by going all out in changing the current terms of reference and its non-participative framework. I cannot see how else, except through those good things that happen everywhere, under the radar, but which will be undermined by the disabling values of this future NDIS.

There is an urgency with this. If we let them continue to do everything about us without us, future generations of people with disabilities will not thank us. They will question where the disability movement was when it was needed most. Where were people in academia, traditionally good at offering critique? Where were the organisations, funded (by government) to speak up in our interests? What advice did 'our' disability advisory councils give?

If no-one will seriously challenge this NDIS, and what's behind it, and strong checks and balances are not put in place, then one day people are going to look back and say, 'This is a bad deal and we did nothing'.

If a disability movement will not move now, our only chance is to wait for charity from the people in charge of this process, hoping they will make fundamental changes (in) themselves. Until either of these things come about, any paradigm shift in disability service, the one that Shut Out respondents are calling for, and need, is off.

Still shut out...



PS
If you are concerned too, please consider supporting Towards Good Lives in its efforts to amend the terms of reference to the Productivity Commission's inquiry here.
 

References

Bonehady, B. (2009). Where is our outrage. Link Magazine, 18,5, p27.

Shut Out: The experience of people with disabilities and their families in Australia (2009). National Disability Consultation Report. Canberra.p. 12.

Mc Mahon, J. (2006). Crucial Times, Issue 36: 6-7.

Nussbaum, M. (2001). Upheavals of thought: the intelligence of emotions. Cambridge University Press. p.69.

Sherwin, J. (2004). CRUcial Times Issue 26 – Editorial

Tronto, J. (2008). The Ethics of Care: Personal, Political, and Global (review) Hypatia - Volume 23, Number 1, 211-217

Announcing Amendments to NDIS Terms of Reference

Finally, prime Minister Kevin Rudd has stepped in personally.

Read this:

""I cannot go to the Australian people and say: Oh by the way, here's some extra funding for A, Y, and Z and A, B, and C, when the underlying structure of the system frankly is a mess."

and


"I have not gone to a single meeting (...) where people have not put up their hand and said this system has to be radically changed and radically improved." (The Australian, The Nation, p. 4)

So, has he now ordered the Productivity Commission into intensive consultations with representatives in the disability field?

Ordered amendments to the terms of reference to include issues that are vital to people with disabilities?

Issues like, how is the present service system failing precisely, what is disability, what are the needs, and so on?

Will participation on the Independent Panel guiding the study be revised to reflect the central interest that this study is all about? Finding funding mechanisms for approaches that truly lead to better lives for our fellow Australians who have disabilities?

Will he or the Minister show they understand the urgency but also the complexity of our issues?

Sorry!

SORRY!

Sorry to disappoint you.

Not yet...

The first two quotes are taken from utterances with regard to the Rudd health system reform. The rest is yet to happen.

But we CAN make this real!

Here you find detailed proposed amendments to the terms of reference that you can use to take action.

Some History And Amending Current Terms Of Reference

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Some no-fault disability insurance history

Do you feel that you are drowning in a sea of references and market/medical jargon with nothing you can hang your hat on?

For those who feel truth in saying that we must know our history, lest we are bound to repeat it, here are two interesting resources: 

Harold Luntz, 2003. Looking back at accident compensation: An Australian perspective

and

Brian Howe, 2004. Empowering the disabled.
(If you get an error message, Google for the entire phrase as above. Trying to fix this) 

 

It would be an interesting study to look at the 1974 no-fault disability coverage scheme and compare it with the present NDIS/National Disability Long-term Care and Support Scheme. It would be too much for me to attempt that here, but just a few points that spring to attention when you read these pieces.

Motivation. 

The then Whitlam government was genuinely motivated by the injustice of people with disabilities being left without much in the way of financial support and services in proposing a national no-fault compensation scheme. There were no economic reasons then for doing this, as now. A year into the appointment of that inquiry the terms of reference, which had been confined to injury caused by accidents (as the New Zealand Scheme still is), was extended with significant amendments to include inquiring “into whether and how the scheme should cover the rehabilitation and compensation of every person who suffers physical or mental incapacity or deformity by reason of sickness or congenital defect.” Very progressive at that time.

In 1986 too, under the Hawke government, the Commonwealth Disability Services Act (1986) focused on us. On ‘people with disabilities [who] should have the same rights as other members of Australian society to realise their individual capacities for physical, social emotional and intellectual development.’That came first in how services ought to be conducted. In other words "quality of service."

Compare that to the motivation for the current NDIS (the new name is too long for me). Much of the language has been that it is for people with disabilities. But quality of service is off its agenda. Revealed in its non-participatory way of framing the terms of reference for a feasibility study; leaving out inquiry into quality of services, needs, or vulnerability; and the dominant business-banking-bureaucracy-competition policy-medical-expert membership on its committees and panels for example, we can only conclude that the motivation this time is different. It is fear of government budget blow-outs and fear of a failing disability services industry that dominate as drivers for an NDIS. Of course disability interests are directly connected, but in 2010 they evidently come last. A needs-based scheme without exploring needs! Aiming for 'social and economic participation' without our participation in framing the inquiry based on business-medical values into our business!

Circumstances today are of course different to those in 1974. A disability service system like there is now, did not exist. A medical view of disability reigned strong, and obviously still does today. The economic model of disability, now practiced everywhere in our country had not yet been conceived. There was no disability movement to speak of so the small committee inquiring into Whitlam's plan did not include any disability representation. Today we do have a disability movement but the 'Independent' Panel advising the feasibility study includes one lone disability voice, close to government, which cannot account for the various disability perspectives out there and should not. So, we are still marginalised in 2010.

Risk in critiquing NDIS

Another point of interest is that the Whitlam plan was shelved, until re-surfacing in a current form in 2010, because of his loss of government. I have heard some people suggest that to offer critique on the present plan risks the same thing happening again to an entitlement represented by NDIS. I ask, what sort of an entitlement is it, if indeed we may be worse off with the current framework? Why could not the Australian disability movement turn this into the opportunity for a paradigm shift that the current proponents falsely claim, theirs will lead to?

Why cannot we, at this late hour, which is not of our own making, insist the terms of reference be amended? Doing this is in our interest, in that of carers and the disability industry, as for government. It is also possible.

What must go in:

• strong disability participation in NDIS Panel and inquiry structure
• disability definition
• needs definition
• vulnerability as important needs indicator
• reasons for the 'dysfunctional' service system
• examining quality of approaches to need
• clarifying the interests of people with disabilities, carers/families, services, government
• explicit underlying values of the inquiry itself
• funding for strong safeguards including advocacy
• strong independent evaluation provisions for NDIS
• possibly more... you name it

Changing the terms of references now is necessary and possible

Changing the feasibility's terms of reference to give us meaningful, strong representation on the Independent Panel, will do more justice to the word 'independent' in its title. To add into the terms of reference vital issues, not appearing there now, for its inquiry, will lead to a more appropriate, resilient scheme, in everyone's interest. After all, NDIS is meant to be central to the entire National Disability Strategy and will shape our future for decades.

The current Opposition Leader has made it clear that his future government's view of people with disabilities will shoot us back to the dark ages. Atrocious. But his negative message about disability is actually reflected in the current NDIS process, underlying values and feasibility study's terms of reference: We're liabilities and we must be sent off to work for benefit of the economy.

An NDIS, reinforced with a revised terms of reference, with firm participative mechanisms, and containing those vital disability issues that must be considered if the scheme is to be strong and durable, including, perhaps especially, under alternative future governments, is imperative. Such an NDIS would have the broad grassroots support that would make it a great counterweight against any future attempts to undo it, or water it down.

This is the time to do it. Whitlam, with his strong personal interest in justice for people with disabilities,  extended his terms of reference in 1974. The government itself, only days ago made minor amendments – a name change. Obviously it can be done - easily.

Why not press for this, while we still can? And if there are powerful reasons against pressing for this, lets hear them now.

There is not much time with 'community consultations' starting in April.

Tomorrow will be too late, when these consultations under the present terms of reference have begun. A golden opportunity for an entitlement worth having, for decades to come, gone!

The only alternative is public protests, media exposure of an NDIS that excludes us, questions asked in Parliament, alternative actions of all sorts, dogging the consultations under this restrictive framework, at every step of the way. And this is quite possible too! By a constituency making up 20% of the population, plus their families and associates...

Is that what we want? Is that what the government wants?

What to do

You can tell the Minister yourself , The Hon Jenny Macklin here what you want to have changed in the terms of reference.

You can tell the Parliamentary Secretary for disability issues, The Hon Bill Shorten here.

Questions about NDIS you can ask

If the department FAHCSIA and Productivity Commission would answer the following questions, we might be a bit further down a path of clarity about why NDIS is the way it is. I have asked them of a department spokesperson who popped his head up in a discussion list, but still waiting. Here are questions you can ask:

1) Why does NDIS , not in its Disability Investment Group report, nor in its campaign, nor in the Productivity Commission's feasibility study terms of reference, mention that quality and values of disability services must be examined alongside providing more money? And how is that in the interest of people with disability?

2) How is it in the interest of people with disabilities, or even just of 'efficiency' and 'effectiveness', not to define disability (medical?, economic? social attitudes?) in the terms of reference or DIG report that they are based on?

3) How is it in the interest of people with disabilities not to define, in the terms of reference, nor in DIG report, what needs people have that the scheme will address? Just saying 'social and economic participation' does not cover all relevant needs, such as that for safety and protection.

4) How is it in the interest of people with disabilities for advocacy development and its funding not being part of NDIS terms of reference or DIG report?

5) A prominent NDIS spokesperson is on record as stating that NDIS has a view of disability as a "risk and insurance issue." Does the Productivity Commission's inquiry likewise take this as its starting point? If so, how is disability, being primarily viewed as a risk, and burden by extension, in the interest of people with disabilities? If not what is the values base that the Productivity Commission adopts?

6) The same prominent NDIS spokesperson is on record as allowing carers an 'age-appropriate' approach to their role, where caring would be more within 'normal' family caring roles and they can go to work. So paid carers would take over. By the same dysfunctional service system where no attention to quality care is mandatory. Can the Productivity Commission's inquiry confirm this as part of its aims for NDIS?

7) How can a future NDIS be trusted to deliver even 'social and economic participation', where its own process to this point has been closely held to the chests of a select group of predominantly government bureaucracy, bankers, business people, and competition policy experts?

8) Wide consultation in framing DIG report and PC terms of reference is not evident. Consequently the parameters for the feasibility study have been set. How is this in the best interests of people with disability? And why were they not more fully included?.

9) By its charter, track record and name, the Productivity Commission's feasibility study is based on an economic look at life. However, people with disabilities must live a full life to flourish, not just as a consumer, service user or worker. The NDIS campaign and DIG panel have been dominated with interests that could be expected to 'sit well' with that value framework. How is this market/industry ideology applied to better lives for people with disabilities in that group's interest?

10) Does the department or inquiry believe that funding is value-free?

11) The NDIS campaign has incorporated unfortunate portrayal of people with disabilities as burdens.How is that in the interest of people with disabilities and will the department disassociate itself from that approach?

12) The interests of people with disabilities and that of government, service providers and carers are conflated in all NDIS material, including in the terms of reference. Yet they also conflict and people with disabilities have the least power to influence this process or end-goal. Will the department or inquiry consider making these interests explicit and ensure that the power balance is shifted towards the primary interest group: people with disabilities?

13) Will the department even now seek incorporate into the Feasibility study's terms of reference statements that:

• 
  
  
  
  clarify the values and view of the nature of disability underlying this study;
• 
  
  
  
  what the needs are that are to met;
• 
  
  
  
  resolve to consult genuinely from now on and in creative formats that may engage most interested people with disabilities and carers;
• 
  
  
  
  add into the terms of reference inquiry into all the reasons why the service system is 'dysfunctional?' 
• 
  
  
  
  Add into the inquiry into quality of service, development and funding of strong safeguards to protect the wellbeing of people with disabilities
• 
  
  
  
  add into the terms of reference explicit requirements for examining the best, independent, participatory review and evaluation mechanisms for NDIS itself
• 
  
  
  
  clearly set out whose interests are served by NDIS, and in what way

14) There is no analysis of the causes for 'the services system's dysfunctionality, as NDIS campaigners remind us ad nauseum. The explicit assumption is, that it is 'lack of resources' – Money – that is the cause. If there is an analysis of ALL the causes, including deficiencies in quality of services, can the department please make it public? If this has not been done, why not, and how is this in the best interests of people with disabilities?

Of course this is not an exhaustive list of questions, but they are key.

Why not ask your local member of parliament for the answers? Or add more burning questions via a comment on this blog?

Erik Leipoldt

NDIS and social participation

NDIS is about 'social and economic participation.'  But it behaves like a parent (mmm) who tells their children not to smoke, while smoking themselves. If you are to be trusted your words must match your actions right? Some people call that model coherency. People with disabilities have been Shut Out from developing the NDIS proposal about which we will now get 'our say.' And we continue to be Shut Out. Read on...

The NDIS 'debate' among those who have disability in their lives has been high-jacked and managed by the powerful vested interests of governments - getting us off Treasury's balance sheets as liabilities; more money for many poor-quality 'services', peak bodies and so on.

In part it has been hi-jacked and managed by others because they can! Where is the (capacity for) analysis, communicating, influencing and just plain speaking out among disability groups? Not all their fault either of course. The nature of disability provides various barriers to participation by individuals in social activism. It is not for everyone. And Governments of all shades do not support strong, independent voices and leadership development. They naturally stand in the way of it. But there is no excuse for publicly-funded bodies putting their names to an NDIS without any analysis or questioning. Of course they could start doing so, even now, if they chose to do so.

Take the 'National Disability Summit' . Never heard of it until someone mentioned it by chance on a discussion list. It discusses "Funding & Support For Disability Services" (ie NDIS). It is dominated by government and service provider interests. The list of "Leading Experts” (speakers) is swamped with them. Three possible exceptions. The Australian Federation of Disability Organisations has two speaker slots (one by virtue of listing one of its associates as a "person with a disability.") And poor Physical Disability Australia has been stuck in a panel in the last half hour, when everyone is rushing to catch their planes. Not listening!

All this in an expensive setting (The Rydges Hotel, 'smart business attire' is recommended', and 'bring your business cards'), cost of conference $990 plus your airfares. Does that exclude anyone important you think? Anyone feel 'Shut Out'? Is NDIS demonstrably a genuinely participative exercise where the interests of people with disability are internalised by all parties? Perhaps not? Then how can it be trusted to develop into a funding mechanism that will truly improve our lives?

Does anyone feel insulted by this exclusionary process where so much of a future NDIS is being proposed in our name?

Here is a 2004 article which is even more spot on now, than it was then, 6 years ago

Where is the social unrest among people with disabilities and their organisations?

Erik Leipoldt

Should the Government be applauded?

Some people think that after fighting for so many years to get a Universal Insurance Scheme for people with disabilities, we need to applaud the Government for now doing a feasibility study through an independent Productivity Commission. And we are being consulted by the Productivity Commission, aren't we? So lets just get behind NDIS and make it happen...

OK, here are some responses to that:

I too have supported a universal disability insurance scheme for people with disabilities, going back decades, and wrote a submission for it to the government's  2007 Big Ideas summit in 2007.

I too want a scheme that provides for our needs, and particularly, of those who are most vulnerable. I want quality in services provided to us. I want funding for strong safeguards, including advocacy. I want real participation by people with disabilities in shaping it. The current NDIS framework does NONE of these things. Many will like to say something about that in the upcoming community consultations. But those issues fall outside the Productivity Commission's terms of reference for the feasibility study. The parameters for the scheme and what will count in submissions have already been set by interests other than ours.

NDIS campaign rhetoric sounds like what we want. But there is simply no evidence for it - that I am aware of. Yet they say that:  NDIS should be the centre piece of the new National Disability Strategy, which is due to be unveiled in early 2010. " So the entire National Disability Strategy will be defined by this NDIS. Without us.

NDIS says that just three organisations - Yooralla, Disability Services Australia and the Spastic Centre "developed a detailed submission for the Australian Government's National Disability Strategy." Absolutely no problem with any group or people proposing anything. But what if their agenda dominates others, and stacks the deck so the others, the ones for whom they say the whole proposal is about, only get a token look in, in proposing their approaches? What then?

DIY X-ray of NDIS

Here is a quick way to X-ray NDIS as it is on the table now. Search the Price Waterhouse Cooper report , Disability Investment Report , or Productivity Commission's terms of reference with your find-function in your browser or text application, and look for:
vulnerability
most vulnerable
quality of service
needs
disability definition
reasons for dysfunctional service system (lack of quality?)
advocacy (funding)
or anything else you find important

...and see what you find out. These are all central concepts, in my book, in conceptualising a 'revolutionary', 'transformational' new funding approach. But perhaps dollars are value-free? Can anyone dispel my concerns after going through these?~ Please do.

One idea of what the NDIS campaign recognises as disability is found in the PWC report. See this: "Disability can be described in relation to several main aspects of people’s life experience: their body functions and structures, the activities that they undertake, the life areas in which they participate, and environmental factors that affect these experiences."

Do you see anything about disabling values or attitudes? Something many have fought for to get recognised as a fundamental view of what creates disability? Something that leads straight to any conception of our needs. But already in that early report eligible people for NDIS were restricted to those with a "profound" or "severe" disability, as they are in the feasibility study's terms of reference. This is how they are described in the PWC report:

a profound activity limitation, meaning the person is unable to do, or always needs help with, a core activity task (core activity tasks are self care, mobility and communication); 

or

a severe activity limitation meaning the person sometimes needs help with a core activity task and/or has difficulty understanding or being understood by family or friends and/or can communicate more easily using sign language or other non-spoken forms of communication.

Do you see how you can count the "interventions"?  It's an accountant's report of course, the foundation that the government chose as a starting point.  More fundamental needs that depend on positive attitudes, being welcomed as a valued participating citizen, are much harder to count. So they do not count.

Vulnerability

Profound and severe disability does not equate to vulnerability, although for many in that category their vulnerability is high. We know that being blind, deaf, amputee or with a 'mild' intellectual disability plus an Aboriginal background of social discrimination and disadvantage, fior example, vulnerability goes through the roof. Same for many who have a psychiatric condition. Does sending them to work get them a better life? A good life? Cause that's the other strand to NDIS. More people with disabilities and carers in work. Sounds alright, if it were  even if it were so simple. In a society that has mainstream values that exclude us, the same values used in shaping NDIS: medical view, market view, life with a disability is all about services and work view.

Independence

I also would like to see an independent panel to guide the Productivity Commission, and with our solid involvement. But calling a panel 'Independent' is not enough to actually make it so, I think.

Independent? If you think that 'nothing about us without us' means one spot only, on the Panel, allocated to the Chair of the National People with Disabilities and Carer Council, I would disagree. Nor that this appointment suggests any 'independence. As for the rest, see for yourself. This is the Independent Panel to the Productivity Commission's feasibility study:

Bruce Bonyhady (President of Philanthropy Australia and Chair of Yooralla)

David Bowen (Chief Executive Officer of the Lifetime Care and Support Authority in NSW)

Dr Rhonda Galbally (Chair of the National People with Disabilities and Carer Council)

Ms Robyn McKay (previously served in Senior Executive positions in the Department of Families, Housing, Community Services and Indigenous Affairs)

Dr Andrew Pesce (Federal President of the Australian Medical Association)

Ms Ann Sherry AO (former Chief Executive Officer of Westpac New Zealand and Group Executive, Westpac New Zealand and the Pacific)

Mr Ian Silk (Chief Executive of AustralianSuper)

And this is the membership of the Disability Investment Group Report that laid the foundation for the PC feasibility study:

Ian Silk, Chief Executive, AustralianSuper (Chair)
Bruce Bonyhady, President, Philanthropy Australia, Chairman, ANZ Trustees Limited and
Chairman, Yooralla
Allan Fels AO, Professor, Dean of the Australian New Zealand School of Government, and
former Chairman of the Australian Competition and Consumer Commission
Bill Moss AM, Chairman, MossCapital. Founder and Chairman, FSHD Global
Research Foundation
Mary Ann O’Loughlin, Executive Director, The Allen Consulting Group (until October 2008)
Kathy Townsend, Kathleen Townsend Executive Solutions Pty Ltd
John Walsh, Partner, PricewaterhouseCoopers

See any overlap, of people, or interests represented?

See how how our own vital interest in any disability funding scheme have been represented, and by whom? That is why I believe it's all about cost-saving, safeguarding against ballooning disability costs and saving services financially. But in the media these NDIS promoters say it is all in our interests, in our name. But where were we in shaping things? Still now Disability Funding Summits insult the interests and needs of people with disabilities, by excluding us. So, now we can have our say soon. Twice even as the consultation process will be intensive, requiring discussion papers, white papers, green papers, any colour papers...


NZ scheme

OK, perhaps the NZ scheme is great. I have heard others from disability organisations say it has its problems. I don't know. The Productivity Commission (with an economic view of life) will look at it. Without us.

DIG report consultations

Yes the DIG report that helped define the reference frame within which the Productivity Commission will consult with us, involved 'community' consultations. Here is the breakdown from its Appendix:

7 people in Brisbane, 3 individuals, 3 from one organisation (Hope Australia) and 1 from another organisation (Foresters Community Finance)

7 people from Sydney, 1 individual, 6 from organisations (House With No Steps; Family Advocacy; Let Us Hear; Assoc For Chuildren With A Disability; National Disability Services; Lorna Hodgkinson Sunshine Home)

5 people in Perth, 4 individuals, 1 organisation (Planned Individual Networks)

3 people in Melbourne, 2 'individual', 1 from Leadership Plus

That's it! A total of twenty-one (21) people out of a constituency making up over 20% of the population! What do you think about that?

Opportunity

Yes I believe too that NDIS is an opportunity for something really different, even now perhaps, when it is a stacked deck. People reported in the Shut Out report called for a "Paradigm Shift". A paradigm shift actually means a fundamental shift in values and attitudes, and it is clear that that is what they mean.  NDIS is not that. It promises more of the same, perhaps worse.

Perhaps the opportunity is in the wake-up call NDIS represents to us. If not now, then when? I'm sure you know what to do.

NDIS is all about money and 'sustainability of treasury balances and paid services. For another view of that, read this perspective on Some Reasons Why Spending More Money Does Not Inexorably Improve Service Quality And Sustainability

That's my 5 cents worth. I am happy for anyone to prove me wrong on any of this.

Now if you really want to take positive action you can start supporting these 14 amendments to the inquiry's terms of reference here.


Cheers

Erik Leipoldt