Sunday, March 14, 2010

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

2 comments:

  1. Articulately put Erik! Made me think.
    Vicki Humphries

    ReplyDelete
  2. Thanks Vicky! Always good to hear when my musings prompt further thought.We desperately need a genuine, robust debate on NDIS... and positive ACTION in amending the terms of reference that exclude issues most vital to us, before these fall outside the framework within we will start 'having our say' in April. Only 15 days away folks!.

    ReplyDelete