Fiddling while Rome Burns – The NDIS

Graeme Innes, Disability Commissioner for the Australian Human Rights Commission, is a wee bit upset this morning. We know this because he has been active on Twitter and Facebook letting people know he isn’t pleased with the current state of progress with the National Disability Insurance Scheme (NDIS). Mr Innes tweeted, “Australians are ashamed we’re 27th out of 27th in OECD for correlation between disability & poverty” (sic)

This was one of many comments Mr Innes made throughout the morning. He made a call to Australia’s political parties to stop the political games and get on with the job of rolling out the NDIS. This was all in response to the Council of Australian Governments (COAG) meeting that had spent the previous day discussing the roll out of the NDIS. To the surprise of no one State Labor Governments were forthcoming with state funds to support Federal Labor in its roll out of the NDIS. On the other hand Liberal State Governments refused to come to the table. Prime Minister Gillard probably did not help things by egging the Liberal Governments on when she appeared on the ABC current affairs show, Lateline.  “We’ve put  $1Billion into the kitty even though times are tough but the Liberal Governments will give NOTHING.”, she wailed, or words to that effect. She had a point but such is my cynicism about politics at the moment that I only see her comments as an attempt at political point scoring.

But Gillard and Innes were absolutely correct when they both stated virtually the same thing. In doing so one wonders whether they are scheming on this together, although Mr Innes is supposed to be entirely neutral of any political influence. But anyway this is what they both said, “It is unacceptable for people to be only having two showers a week, or leaving their house several times a year.” Sadly this is indeed the case for many. It is for this reason that Australia is rank last among all OECD countries when it comes to disability support. To be precise Australia is 27th of 27 nations. Innes believes this is Australia’s shame.  It is, but does mainstream Australia really care? Who outside of the disability sector is really following this debate?

The NDIS was introduced to much fanfare. It brought with it much hope for people with disabilities. It is now rapidly descending into farce as our political leaders use it to score political points, either by trying to show that that they are champions of disability or by trying to embarrass opposing members of the political spectrum. They all support the NDIS they say but at the end of the day, instead of finding ways to make it happen, they are playing politics and squabbling over money. The needs of disability seem to figure very low in the priorities of the debate. Sadly as a result the NDIS is at an impasse.

Originally the NDIS was supposed to have been self-funding. It was supposed to have been a similar scheme to Medicare. The idea was that a percentage of everyone’s salary was paid to fund it. The argument for this was that everyone at some stage had the potential to acquire a disability. People can be born with a disability or they can acquire a disability from accident, disease or simply from aging. Through the NDIS a levy would fund everyone with a disability, whether it was acquired at birth or later in life. As it stands now, the system is not equal. If you have a car accident and acquire a disability your third party insurance provides you with a payout to fund your needs. But if you acquire your disability through illness or an accident in your garden the situation is very different. It is different in a sense that you may have no easy access to support funds unless you had adequate insurance.  An NDIS was supposed to be able to provide for all people with a disability, regardless of age or circumstances that the disability was acquired.

In its wisdom the Government has discarded the idea of such a levy. They have done so because they believe that disability is CORE business of the Government and therefore should be funded from general tax revenue. This is not an argument I understand because, arguably, health is also core business but we fund much of our health needs through a Medicare levy. The more cynical among us, of whom I am one, might see the shift away from the introduction of a levy as the Government, and opposition, shying away from introducing another tax. Like it or not a tax is essentially what an NDIS levy would be.

We still do not know what an NDIS will entail. The buzz word in early debates about the NDIS was that it would be self directed. Funds would be allocated and the person with a disability would allocate these funds to meet their needs. Those that lacked the capacity to direct their own funding would receive support to do so. This has now changed too. The word ‘funding’ is no longer used instead we are hearing the term ‘entitlement’

Now there is a big difference between ‘funding’ and ‘entitlement’. Self directed ‘funding’ is actual access to the money and directing this money to purchase services and support as required. The word ‘entitlement’ means that you are allowed a choice between options that are classified as ‘entitlements’. What this means is that, if the Government has its way with the NDIS, there will be a list of ‘suppliers’ that you are ‘entitled’ to choose from. The suppliers will be services, probably already out there, who are eligible to be used under the NDIS.

The Government wants this because it will prevent people using family members as support people. What the Government does not want is a person with a disability receiving their funds and directing these funds to family members to provide their support. Or individuals with disabilities might, for example, want to advertise for a support person, interview individuals and decide on people who they are comfortable with to provide their support. The Government does not want this either. There is to be no such choice or flexibility – You will only be able to choose from a list of ‘entitlements’ provided by eligible ‘suppliers’. If you think the NDIS meant autonomy, as in full control, think again. It will be nothing of the sort.

And the word disability is bandied about as if it means all people with a disability. It is clear in these early stages that this is far from the case. Debate is almost entirely about people with disabilities who have care needs. These needs include showering, feeding, getting dressed or support to get out and about. The needs of these people figure prominently in examples of how the NDIS will help that are given by our politicians. Gillard and Innes last night and today spoke of those ‘two showers a week’ people. They spoke of those people who can only, “get out of their house several times a year.” This has been the pattern throughout the NDIS debate.

There is no question that these individuals are and should be a priority in the initial stages of the NDIS roll-out. However, what is not clear is whether these individuals are the only people that the NDIS will focus on in the long term. If you look at the steering groups that have been established by the government to assist with the roll-out of the NDIS they are heavily weighted with representatives from physical disabilities and carers groups. The Deaf are wondering what is in it for them. The blind are wondering what is in it for them. What of people with mental illness? It is not clear when, or if ever, the NDIS will actually cater for groups of people with a disability who do not need personal care and support. If you are a deaf person and thinking of putting your hard earned savings to your retirement fund or next holiday because the NDIS will pay for your hearing aid or cochlear implant upgrade, well that retirement and holiday may have to wait a wee bit longer.

The Government persists in using the term ‘significant disability’. This is a deliberately vague term that allows them to classify the types of disability that can be supported through the NDIS. I have yet to see a definition of the Governments understanding of ‘significant disability’. As I have said, I have no problem in the initial stages of the roll-out of the NDIS with those individuals who have pressing personal and care needs receiving priority. However, if these are the only people that the Government is targeting with the NDIS then the Government needs to come clean now.

The NDIS roll-out is definitely a case of ‘Nero fiddling while Rome burns.’ While the Government and the opposition play political football with people who have disabilities the NDIS remains in limbo. Not only are people with disabilities not having their most basic needs met but the crucial issues of the structure of the NDIS and eligibility for the NDIS remains in limbo. The real shame is that political survival is being put before real need … People with disabilities deserve better than that!

7 thoughts on “Fiddling while Rome Burns – The NDIS

  1. So “the Deaf are wondering what’s in it for them”, are they? Well, unless being Deaf means you can’t physically get out of bed in the morning, can’t shower youself, get yourself to the toilet, feed yourself, dress yourself or work,then the answer is nothing. The NDIS is meant for people with severe disabilities, not people who’d prefer to spend money on a holiday than some necessity of life (who wouldn’t?) Ss stop WHINGEING, Deaf people, and just be glad your disability is so limited and relatively easily overcome-able.

  2. BTW, I said “relatively overcome-able”, as in you can function in mainstream society a hell of a lot more easily than someone with a severe intellectual or physical disability. Just as the Blind can – look at Graham Innes. Being deaf, you can learn to lip read, you can communicate through Auslan, or as you mentioned, you can may be helped by a a hearing aid or a cochlear implant. People with severe intellectual and physical disabilities, on the other hand, have no way of overcoming their disabilities, and as the vast majority don’t have a hope in hell of ever getting a job, they have no “hard-earned savings” to spend on their “next holiday” or put away into a “retirement fund” or anything else. They subsist their whole lives on a poverty-level Disability Support Pension. In other words, it’s like the old saying: “I felt sorry for myself for having no shoes until I met a man with no feet”.

    • To be fair Caro the article mentions that people with physical disabilities who have personal care needs SHOULD be priorities in the first stages of the roll-out. However it does ask what of others and asks for the Government to be honest whether other groups will get some benefit later. This is a fair ask.

      Personally I think it is not helpful to get into “my disability is worse than yours” type debates, Deafness can be devastating, it can impact on language development and intellectual functioning if acquired early and the right support not received. Acquired later is extremely socially isolating impacting on mental health and is part of the reason why there is research that shows people who are deaf have mental health issues at twice the rate of the general populace.

      If the NDiS can provide support allowing parents to purchase early intervention support and technology or provide hearing rehabilitation and counselling for later deafened people then great. Or if it can pay for greater access through communications support terrific too.

      The needs are different, certainly, and the NDIS can help … BUT if it is only going to be used to support a particular group of disabilities lets be honest about that from the start and not belittle the needs of others.

  3. Honestly Gazza, I am not “belittling” the needs of others, but the NDIS is designed to help a particular group of people in our society – those with severe, day-to-day limitations in every aspect of their lives. So I’m afraid an NDIS does involve, in one sense at least, a “my disability is worse than yours” type debate or judgment. There is unavoidably going to be an assessment process, with set criteria, and also cut-off points. It’s unavoidable. Which is not to say that others with needs for services and supports will or should be ignored; it’s just the NDIS isn’t the applicable mechanism for meeting those needs. Many of the needs you describe Deaf people as having are met (or should be at least) through the existing public nd community health system. And if that system needs improving, then campaign for it. But in a world of finite resources, the NDIS cannot possibly be all things to all people; it has to be targetted, and focused, on those with daily support and service needs. What I have found annoying about the attitude of many in the Deaf (and Blind) lobby however is that all they actually seem to worry about is “what’s in it for us, and if the answer is not much, then we’re not going to lobby for it on behalf of others far worse off then we are”.

    • The thing is Caro, that is not clear. In fact the Deaf peaks have been working with the NDIS people and have received no such indication. It needs to be made clear. I dont have any issues with it at all if that is going to be what is happening but as I said – This is not the message that Deaf peaks are receiving.

  4. I wouldn’t worry about not being covered if I were deaf. This whole thing had mission creep written all over it.
    20 minutes after the NDIS starts, TodayTonight et al will be running stories about poor deaf Mrs J whose isn’t covered by that nasty government and, hey presto, deaf will become a coverable disability. And sight-impaired…no brainer. And we all know agrophobs can’t get out of the house. And dyslexia? etc etc.

    They currently assert that 400,000 or so will be coverable ie around 2% of the population. But they won’t even break a sweat getting that up to 5%.

  5. Probably Mark .. but the key is to be vocal .. if you remain silent you get nutting. That said the Liberal State Govt made some promising noises on the weekend so here is hoping.

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