Saturday, 8 February 2014

From Hope to Despair: The NDIS and the Battle for Individuals to Advocate

Three years ago this month an article I wrote on the failures of the proposed National Disability Insurance Scheme (NDIS) was published on ABC RampUp. I had attended an 'information session' designed to inform carers and people with a disability about what the new scheme would entail. There was no information, just propaganda. From then on I began an angry quest to stop the NDIS.

And I failed.

When the legislation was passed through both houses of the Australian Parliament, Julia Gillard considered it to be one of her greatest achievements as Prime Minister. I say that it was her worst. The reality was that the institutional power was always against those who opposed the NDIS. When the NDIS became law, it was said that many cried with joy. I cried tears, lots of them, because I was scared and terrified. I believed that the NDIS would be the tool to disempower hundreds of thousands of people with disabilities, all in the guise of helping us. I remember talking with my parents. 'We are going to get screwed, and no one understands! How do I make them understand?'

Even I underestimated the devastating effects of the NDIS and it hasn't been implemented yet.

Wesley Mission gave me the opportunity to attend Griffith University's NDIS Symposium on Monday (the 3rd of February). It was an all day conference, designed to give various aspects of the disability sector the opportunity to discuss the tools that they need to ensure that they are ready for the NDIS. It was not a pleasant day in the slightest. I was angry going into the conference, I left in helpless disbelief.

Throughout the day, the majority of the 200 attendees and all of the speakers seemed to be in a trance like state. 'The NDIS is the best thing to happen to the disability sector in decades!' they would say. Yet not one of the speakers gave an explanation as to why. Instead they voiced the same concerns that I have expressed over the past three years. This is not me gloating. I take no pleasure in saying any of this.

The most interesting and insightful session was the first on eligibility. The Government Senator responsible for the NDIS rollout, Mitch Fifield suggested in his National Press Club Address in November last year that the NDIS would cover 450,000 Australians with a disability. However according to the Australian Bureau of Statistics there are 2 million people with disabilities. What happens to the other 1.5 million who don't fall under the purview of the NDIS? To me this is the most basic question of the whole conference.

It was left unanswered.

The question of who is not covered under the NDIS is a vexing one. If a person with a permanent disability is over 65 by the time the scheme is implemented in their state, they will not be covered under the NDIS, and they will instead be part of the Department of Aged Care, denying them access to auxiliary services on top of their care needs.

It is even worse for those who have a mental illness. According Caroline Earlich, Senior Research Fellow of the Griffith University Health Institute, of the 429,000 of those in Australia who are considered to have a 'serious mental illness', only 60,000 will be covered under the NDIS. She stated that the requirement of the NDIS that participants must have a 'permanent' disability is problematic when defining mental illness. The paradox is this: the people with a mental illness who require the most support (eg homeless, disenfranchised, or the most at risk of self harm) will receive the least amount of support.

Currently there are three trail sites for the NDIS. These sites are located in the Geelong region of Victoria, the Hunter region in New South Wales, and for children who live in South Australia. The issues that these trial sites have confronted are staggeringly obvious for those of us who have had any experience with disability bureaucracy. On an organisational level, the conference speakers repeatedly touted the employment opportunities for people to access in the newly formed National Disability Insurance Agency (NDIA), the body responsible for assessing applicants, and maintaining the case files of those who are successful. This undermines the very purpose of the scheme. Assessing the needs of those with a disability to fit government funding models is a highly skilled and complex process (more on that below). If applicants are not assessed correctly, they will not get access or the support services they require. If this is the case, you may as well ditch the scheme entirely. At minimum, those who aim to work with the NDIA should have tertiary qualifications in disability services, and ideally have experience in the field. Failure to do this will result in a 'pink bat' type of situation for the disabled, where ill-equipped operators will be able to gain access to employment without the necessary skills to help those with disability, thereby putting them in grave danger.  

For people with disabilities, the assessment process and its outcomes spell danger for us all. Presenters from Griffith University and those within the disability sector, repeatedly cited statistics from the trial sites which indicated a correlation between intellectual and verbal ability and their opportunity to gain access to services.

Put simply: if a person has no skills to advocate for their own needs, it is highly unlikely they will have the opportunity to access the necessary services that they require.

This is the trouble with a person based advocating system, as promoted under the NDIS for people who lack basic comprehension skills. How on earth will you be able to 'advocate' for what you (or your carer/guardian/caregiver) needs when you don't understand the information that is provided?

Again no answers were provided.

On a personal level, I am worried about my own future. The services that are provided to me at the Youngcare Apartments are based on a model called 'block funding'. The aim of block funding is to pool the resources of a certain group of people so they can access the support funding they need in a cost effective fashion. I would (with an uneducated estimate) guess that the person with the most needs in terms of support at Youngcare would cost the Queensland Government upwards of $2 million a year. There are others who would cost more than $1 million a year. No government would give those amounts of funding to a single personal (or their advocate) so they can allocate their funding how they wish. There are just too many risks. Therefore, 'block funding' says in Youngcare's case, that if I put my funding in a pool with the 16 other residents, we will be able to combine our collective resources and get access to around the clock support.

In other words, it is a free marketer's wet dream.

Opponents of block funding suggest that it undermines the ability for people with disabilities to choose how they want their support services allocated. While this is true in some cases, the argument misses the bigger picture. One of the presenters at the conference, Dr Donna McDonald, Senior Lecturer and Convenor of the Disability Studies Program at Griffith University (who also is hearing impaired with a ton personal experience in the sector) labelled block funding, 'draconian' for the very reasons highlighted above. When I directly challenged her as to whether this was an economic or moral response, she unsurprisingly answered the latter. While I'm sure Dr. McDonald is a powerful advocate on her own behalf, she fails to understand that block funding is the only method in which I have ever received the appropriate amount of support, and I'm not the only one. Block funding is my choice, and the majority of those who advocate for Youngcare. Block funding may not be the answer for Dr McDonald, but it is for us. While the great majority of the Conference delegates appeared to share Dr McDonald's view, the Government has yet to decide whether a block funding structure will be an option for those who want it under the NDIS.

I have resigned myself to the fact that the NDIS is here to stay. Rather than take on the huge despairing monolith that the NDIS has become. I aim to ensure that block funding is an option for those who want it, and for those who don't even realise they want it yet, but will one day realise that they will.

I may have lost the war, but I will never give up the passion for this battle.     


  1. Hi Todd, this is a very interesting article.

    I am curious to know where you've sourced the figure that over 2 million Australians have a disability. Would I be correct in assuming that this figure includes those with any type and level of disability?

    Not all people who are identified as having a disability actually require financial and/or human support from the Government. On paper, I have a profound disability (profoundly deaf). However, I do not depend on human support to go about my daily life (although I do depend on technological support). As such, I have no need to opt into the NDIS scheme. I am sure a proportion of the 2 million disabled persons would be in a similar boat.

    1. The figure of 2 million Australians is based on what has been described as "the ingrown toenail" definition of disability - i.e. it covers everything from a bit of arthritis in one's knee to profound and multiple disabilities: a vast spectrum. And as you rightly say, there are also mny people who would be classified as severely disabled, due to hearing or sight loss for example, who are nonetheless able to get on with their daily lives with minimal supports. The Productivity Report explains exactly how it sees the 2 million or so people classified as having a disability catered for within an overall NDIS-based system, within three "tiers", with only an estimated 460,000 in the highest tier one. Strange that Todd appears not to have read the info that answers his questions, when it's all there for anyone to read and when he's in such an agitated state wanting to know these answers.

    2. Thanks for your comment 'Anon'

      I have read the 460,000 figure as it relates to the so called 'Tier One' category. However, you will note from previous articles that this figure is debatable. Even supporters of the scheme, especially the ones who attended the conference mentioned above dispute these figures, suggesting that this figure is in fact much higher, despite what you have noted.

      I'm sure you would be across this as well.

  2. Thanks for your comment.

    The figure is sourced from the 2011 census of those who require 'assistance', not sure if that means there are on the DSP alone. If this is the case your point is entirely valid. If we were to use this definition, there would still be a massive shortfall of who is not covered regardless.