Tuesday, October 6, 2009

An odd thing - We hear one half of the message and ignore the other half

Why we may be letting the nature of NDIS slip under the radar.

The best thing about the proposed National Disability Insurance Scheme it is that for the first time we see public acknowledgment, within government and disability industry circles, that social attitudes underpin much of the experience of disability.  That impairment of any sort is a normal part of life. And that the existing service system is not good enough. Politicians and disability industry chiefs can now reel off lists of injustices with the same ease and passion that was hitherto the province of disability advocates. And they call for society’s response in sharing in insurance against disability.

The facts about our devalued social position are unassailable and accepted wisdom for us, people who live with disability. Maybe that is why, so far, we have heard so little critical comment about NDIS from those on the ground, people with disabilities, carers and from disability advocacy. Of course we all want a better deal for ourselves and for people with disabilities broadly. So it is that we can ignore the other half of the NDIS story: you’ll get more of the same malfunctioning system, just differently funded.

And how will disability advocacy be funded, by the way? Not a word about that in the  NDIS Plan.

Just like in advertising: we seem happy to buy goods labeled “green”, “natural”, and “full of goodness”, while ignoring listed ingredients that are anything but that.

It is usually under Labor governments that advances for people with disabilities were made. We think fondly for example of Senator Don Grimes who was the father of breakthrough developments in the late eighties, rippling their effects into the early nineties. 

We now have Labor MP Bill Shorten propose a new funding approach and we know this opportunity may only come along once every twenty years or so. So some people are tempted to accept NDIS as-is and look at the “detail” later.  But we are not talking about details if the system that often obstructs the meeting of real needs will not change, or will even be entrenched by it.

Perhaps it is all too human to reach for funding sources, money and service technologies first before looking at the actual needs to be met. 

We think money is the wind that moves the ship of any endeavour.  But as the current service system shows, if you don’t know how to build the right hull, or how to competently sail it in the right direction you’re still up the proverbial creek. Or rather, in this case, people with disabilities are. It is therefore imperative that we seize this time of public acknowledgment to design a complete, new approach, starting with the foundation: Values and beliefs.

This is too important a time and a cause not to give it in-depth, competent attention, accept shared responsibility for designing it well, and with reference to the lived experience of people with disability and those who care for them, and with them. We should not just leave this to a small group of financial and industry competition experts, Bill Shorten’s Disability Investment Group.

The very first priority resulting from the recent National Disability Review is: increasing the social, economic and cultural participation of people with disabilities and their families, friends and carers. As far as any NDIS is concerned that strategy must be applied from the ground up, i.e. now.



  1. Erik,
    Thanks for sending me the link to your blog.

    It is really hard to disagree with your post.

    NDIS as I understand it is a very long way from a fully developed concept and I absolutely agree the time is right "to design a complete, new approach, starting with the foundation: Values and beliefs."

    It is an ideal time for everyone to put forward their view so that what comes from this opportunity is grounded in "the lived experience of people with disability and those who care for them and with them." Sadly if this does not happen, the so called experts will fill in the details based on their knowledge!

    I absolutely agree that money is not enough to make a difference but the absence of money makes life worse for many people I come into contact with.

    I too would not want whatever comes from this rare opportunity to be more of the same, so I think it is vital that the lived experiences drive the way ahead.

    Regards, John Pini

  2. Good afternoon Erik,

    As money can not buy you love, it can not buy you a culture change either.
    I believe that the present proposal is a step towards a culture change. By abandoning the 'deserving poor' charity model of funding and recognising support for people with disabilitry as a right we take a step towards breaking down the social construct of disability. It is a step forward from the 'maintenance model' of feed them, water them and fill in time between meals, towards creating an empowering environment that will support people in reaching their potential, developing and maintaining relationships and having (real) choices.

    The political reality is that - with few exceptions - these goals are not understood by our elected decision makers, or the services that support them.

    You will remember how the republican debate was lost: the question was not whether we wanted a republic, but what model of republic. The lesson from that is I believe that we need to narrowly focus on what is politically achievable at this time, and I believe that is the NDIS in its present form.

    Like JP I wholeheartedly agree with your broader objectives, as you well know, but do not think it practical to include a culture change in the present proposal. It would fail in parliament, and i believe it is already happenming, albeit much too slowly for our liking.

    rgds John Homan

  3. Thanks John and John! Good to see some discussion.

    I agree that disability service requires money, and it should be publicly funded as impairment is a universal phenomenon. It should also be adequately funded. But what is it that is currently not working well in services and how should THAT be tackled? By changing the funding base? By spending more money? By strengthening the system as-is?

    Where are the analyses of the reasons for the breakdown of services? Is it responsible, and an expression of care, towards people with disabilities; to their families and associates; and to the tax payer, not to make these?

    We have had yet another inquiry, this time resulting in the Shut Out report. We need a better account of how conclusions in this report were reached. What precisely did the respondents say about the nature of the barriers they experience. Is this fixable with money? Or changes in the very nature of service delivery?

    I suspect that it is more of the second than the first. And if we DO need a change in thinking about the underlying ideologies of services and how they should best meet real needs, as I suggest we do,then would this not also be likely to result in best value for dollars spent? I think politicians, services and other decision makers can understand this.

    A service system built on values derived from disability experience about how to best meet fundamental needs, is not Utopia. It is what everybody already knows about what works best in building towards a good life.

  4. Oh, and I certainly don't suggest at all that 'culture change', a change in values and ways of doing things, can, or should be bought. Anything of that sort is hard work and must involves many people over a longer period of time. But it always starts somewhere.

    And as far as losing the opportunity, represented by NDIS is concerned - we can only be better off if we deepen this as much as we can. If this government is genuine about improving our lot, it will stand such vigorous involvement fromm those who are living it. The end result will be a scheme that is more coherent with real needs. This government looks like a three-term one right now, so we have the best opportunity for building something quite resilient.An NDIS that is more of the same will obviously further entrench the negative experience of people with disabilities and see this opportunity wasted.

    Do we want a symbolic change or at least the beginning of a real one?

  5. I love your discussions about this. I am new to being in a wheelchair and have been excuse the language through hell and back trying to get help. I read someones account of what it was like being quad with CP and although I am not that severely disabled I still struggle to get through a day. I missed the cut off for the shut out report cause I didn't know it was happening but I read it and felt disgusted at the way PWD are treated in this country. I find it is awful because my husband works 6 days a week to feed us and yet I get less than 2 hours support from the government (in SA through Domicilary care) I also read (from the disability forum website) that in Qld funding went from a federal to a state thing and wonder did that happen everywhere?

  6. I have been wondering for a long time and so far have no answer to it what "permanent" and "temporary" means because to disability SA (DSA) I dont meet the criteria for their help (whether or not it is more less or different to Dom care since they amalgamated 3 years ago I do not know) but I am wheelchair bound cannot walk have pain 24/7 and also have chronic fatigue and I am hearing impaired. I wont go into how all this happened but it has been a really tough road. The drs have NO idea how long I will be like this so I cannot understand why its considered temporary especially after 15 months with little or no improvement and a significant deterioration from how I was originally. Why do carers who are partners, children and even elderly partners have to have the job of being a carer simply because they are labelled as "able bodied"? I mean my husband is at work almost 12 hours a day (including travel) then hes expected to come home make dinner shower and dress me do all the cleaning etc etc. I do help in fact I usually struggle to do the cooking by myself on a stove that is too high. Even an electric appliance on the kitchen table at my height is difficult because I often do not have the strength to stir chop or cook the food. I feel my health is worsened by the fact that we have hardly any assistance from dom care. Asking them over and over does not help you have an able bodied husband dont you have family or friends that can help??? The case managers that I have dealt with ought to be shot for the things and comments that they have said to me, but they are overworked and understaffed they seem to have NO idea what having this kind or any kind of disability means how difficult it is and how money is always tighter due to expensive non PBS medications. But then I read the shut out report that said that the average support hours for PWD through HACC is 2 hours well I get 2 showers a week about 30-45mins each plus equipment hire and maintainance thats about all. SO I am "Lucky" because I get something from the government there are lots of people on waiting lists. The other thing that I would agree with again from the disability forum website is that not all pwd can be disinstitutionalised yet when they are they have less support than they did in the institution. They are trying to do this to the Strathmont Centre near where I live they have cut an cut their support (theres a swimming pool in the complex which is used by many people) including me, it has a hoist which needs replacing but I doubt they will fund it that means that a lot of pWD will miss out on hydrotherapy because of no access to the pool. There are not many centres left with this kind of access I had to hunt for one.

  7. Anyway thats my rant
    about the NDIS what I dont get is why it will only cover pw certain level of disability I mean I dont know what level I am considered to be and I dont even know if it comes in whether I would qualify I think it should cover all disabilities from simple to profound and that there should be some way of deciding how much support each person gets but how would we be able to afford this?? At the moment in SA PWD seem to get the same amount no matter how severe there disabilities are. Yet when I worked as a support worker the people that I helped dress and shower got a lot more assistance than me sure they were permanently born paraplegic and needed more assistance than me but it was like 5-6 hours a day. Also they did live alone but like I said my husband is not here for the majority of the time and so how is he suposed to do everything? I have had some help from someone off the disability forum advocating to get some help cooking so we will see how it goes. There has to be a way to have a fairer more equitable more sustainable system with person centred care not a one size fits all system where everyone gets 2 hours a week cause thats what the government can afford and it has to take the strain off carers somehow. I have no idea how this can happen but I hope it happens nationally that all the states can have the same systems cause it even varies between states making it difficult to set up care if you move. There is a push for "individualised funding' while I agree that there should be more choice there is a lot of things about that system that I dont understand and it has not been explained properly how it will work.

    Thanks for reading my post
    when I am not so tired I will send you one about what I hope to achieve career wise. I am a musician and despite everything I have continued to do this. I cant always write how bad everything is even though thats how I feel at the moment.
    PS I had to do it in 3 goes cause will only take 4000 characters

  8. Erik and Erin
    Apologies in advance if this is a bit rambling!

    An NDIS, or any other scheme that is more of the same is not enough change! Shut Out tells us that in clear and unambiguous terms.

    Grounding whatever lies ahead in the lived experiences is vital to ensuring that we don't just get more of the same.

    I may live to regret making this statement but there is a level of hope about a better future that I cannot recall seeing for a very long time. But this hope cannot rely on the good intentions of many or few it needs the grounding of lived experiences.

    I read Erin's post and it brought back into stark reality the ponderous confusion that is used to regulate, limit and allocate the scarce resources in disability.

    Having worked with this confusion across 3 states, I have had to deal with people who have the lived experience of this system and people who are working in the system. Sadly too many of both groups ended up frustrated and at their wits end, often seeing that something was better than nothing.

    What Erin described is what too many people have experienced as their life or what someone who work in the area trying to support someone with a disability to have a life and end up seeing them with less than they want and need.

    I think there is a great amount of confusion about a NDIS Eg Who it will cover and who it won't. I support the debate and discussion about NDIS because it begins to shine a light on the issues that have been hidden for too long. If this is your lived experience you know about it. If you are a carer or family member you know about, but if you aren't in one of these inner circles then you don't know and many people just can't believe that this is what life is like for people in modern affluent Australia.

    I am reading Michael Kendrick's book "Letting in the Light" and he writes about disability in the following way: "The most fundamental question, therefore, may not be one that is concerned with the optimal treatment of people with disabilities, but rather, it is one that is concerned with the optimal treatment of all people, without exception."

    No more no less.

    Regards, John Pini

  9. Thanks John, I agree Erin's post pushes our noses on the reality of daily life lived with a disability - and what NDIS may or may not be about. Also instructive to see that one day you're a support worker and next day a person with a disability... Thanks for your post Erin!