Monday, March 29, 2010

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.

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.

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.


  1. Hi Erik
    erin here on PDCA as well. Well yes there are definately some flaws in NDIS and also in individual funding. i keep questioning the differences between states? I wonder why if WA has been having self managed funding for 20 years why SA is only just bringing in and then with heaps of restrictions like not having achoice over service provdier and not having a choice about WHO is your support workers. Also they apparently dont do a new assessment so for people already in the system you are unlikely to get new or more money. When you cant even get a wheelchair thats suitable or more than 2 showers a week I think THAT is in contradiction to UN convention. I am involved in lengthy process of switching from one agency to another with the hope that I MAY get extra support but I have to apply as new applicant even when the current agency dont think they meet my needs they dont do anything about it they just say things along lines of we want you to have good quality of life but we dont have any money. If thereis not going to be enough money in NDIS its not going to help people. I have trouble understanding everything to do with NDIS and it seems its going to take years before its implemented and i am not sure what we are suposed to do in the menatime. I have an advocate who is very helpful and I would not be able to approach the agencies by myself and sortt hings out this has failed dismally so far I just get told that my needs are too high and that they cant give me anymore help. Also waiting for full diagnosis which doesn't help either. good luck with NDIS

  2. I agree that the NDIS is focused from what I have read of it on people who are incapable of making any decisions for themselves and by people who want to control them. One also has to quesiton if only focusing on severe and profound disabilities is right. Surely if people are given the proper and full intervention earlier, in many cases their disabilites would not become severe.

    The NDIS also at the very start specifically excluded those with psychiatric disabilities and this is one of the most vulnerable groups around. We talk about mental illness all the time, and the fact remains that over 80% of people with mental illnesses experience very minor illnesses, but some people are very severe, despite being 110% complaint with all medication and treatment offered to them. It is like comparing a broken finger to a broken back, we do not compare them or expect people who are paralysed or worse to be seen as someone with a broken finger so why expect it of the mentally ill.

    Victoria now has total individaul funding. It is not adequate in any way, shape or form, but people are in total control of where the money is spent and most importantly how it is prioritised, but according to victorian legislation psychiatric conditions are not disabilies and so they go without, other than the medicaiton handed out to them via the public mental health system if they are lucky enough to enter it. Many people with complex mental illnesses require weekly psychological treatment and yet they get 12 sessions through medicare and are expected to stand up and be grateful for tht. If people with medical based mental illnesses only had medication for 12 weeks a year there would be outrage. Even being placed on a waiting list for psycholgical treatment would be a beginning as happens with the current system for other disabilities where funding is limited, but at leas they will eventually get what they need, but not so for the mentally ill and according to the NDIS, they do not need NDIS and are not disabled in that way. Disability is disability no matter how it is caused and it needs to be treated as such.

  3. Erin, and other poster. Thank you for commenting. much appreciated. It is good to see some grassroots engagement with important questions that will affect the lives of the next few generations of people with disabilities.

    If the government will not entertain living up to the UN Convention and not now facilitate meaningful, deep and wide, disability representation on the Panel that leads the inquiry on NDIS... If it will not look at the reasons for the service system that it trumpets as broken; will not examine what our needs are; or examine how NDIS can fund and develop strong advocacy as a primary safeguard within this dysfunctional system... If our disability organisations, funded to represent our interests will not do so on this issue... then, somehow, it is down to people like yourselves.

    To be informed and supported in this please visit this blog from time to time and , where we present analysis and constructive ideas for approaches that WILL meet our needs.

    Erik Leipoldt