Dear Members of the Joint Standing Committee,

I know that you have received many professional submissions with firm evidence about why the introduction of mandatory Independent Assessments is a faulty and harmful policy direction. I can only provide a personal perspective as a person with severe mental illness who depends on my NDIS plan to stay alive. I apologise if this lacks full coherence as it is very difficult for me to write about the threat to losing the support I have that this and some of the other proposed changes pose.

Before I was accepted into the NDIS, I was at a point in my life where there was a very high likelihood I would die from my illness. I was hard-working, responsible and organised, and extremely committed to doing what I could do to maintain enough health to be able to work, to contribute to society and be a decent and kind person. It wasn’t enough. I didn’t have the support I needed to live with dignity in our society. My illness was not getting better. Life was very empty, and I was very isolated, and the impact of my disability on my quality of life increased with each year.

I remember clearly the moment I received my letter saying I was in the scheme. It was a moment of hope for my future. I felt like a citizen, and not just someone tossed on the rubbish heap left to rot.

It took time to learn how to best use the support available, and time to learn how to find and keep good support workers. It has taken time to build a better life up, inch by inch.

With support:

• I now live independently (in a house provided by my parents).
• I run a micro-business which provides me with the 15 hours/week employment I can manage with my health.
• I have not been on Centrelink payments for over 3 years. I haven’t yet achieved financial independence, my parents pay for some things, although I keep working towards this goal.
• I pay tax!
• I participate in a couple of community service groups.

My quality of life and has improved substantially. My illness is the same. The difference is, I now get to enjoy parts of life that I was cut off from before, and they strengthen my ability to manage the impacts of my illness. And you should all already be well read on the Productivity Commission data which told you that if implemented properly, the NDIS would result in increased economic participation. I am an example of that.

I have already provided the scheme with very clear evidence about the severity and permanence of my disability. Do you know what that process is like? Do you know what it is like to pull out in detail all the horrors of your suffering and exclusion? Do you know what it does to your mental health to have to convert your framework and attention to the deficit model, and to invite strangers (on behalf of your fellow Australians) to judge whether your pathetic and tiny life is worth saving? Do you know what it is like to then have to revisit all of this at regular intervals for your Plan Review? Do you know the terror that is to know how dependent you are on others to stay alive, and that strangers decide will you be just normal sick, or sicker, or dead?

Terror at NDIS processes is already a part of our experience. So please listen to people with a disability when we tell you, that the proposed Independent Assessments are at least 9 times more terrifying than the current system, and are guaranteed to reduce the function of the NDIS in its primary role, which is to provide people with disability some semblance of a normal life and access to community. To give us ‘voice, choice and control’. To allow for individual planning. To give people with lifelong, severe disability, and their carers, the security of knowing that our needs will be met with dignity and respect.

As for the types of assessments and processes being suggested, they won’t reflect the truth. It may seem inconvenient to politicians to have to deal with the messy and complex reality of our experiences. Yes, disability is inconvenient. And the people and systems who are there to support us need to deal with this complexity, not try and erase it. It would be great if the scheme there to support us acknowledged that no matter how inconvenient that complexity is for administrators, it is worse for the people living it.

If the commitment to co-design which is supposed to be at the heart of the NDIS was at play here, these ideas would not have gotten this far. Instead, far more economical, just and innovative ideas would be on the table to solve the issues around fair access to the scheme. That is because people with disability care more about the long term sustainability and fair access to the scheme than any government politician. We are also experts at problem solving. Our whole day is spent problem solving. When you don’t listen to us, you waste resources, you waste public funds, you waste our very precious energy.

I hope my comments can contribute in some way.