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ANGE:

From Schwartz Media, I’m Ange McCormack. This is 7am.

In 2012 the NDIS, the scheme to support Australians with disabilities, was called the social reform of a generation.

More than a decade on, it was called out in last week’s Disability Royal Commission report as a system that needs serious attention.

Advocates say despite its good intentions, the NDIS isn’t living up to its bold vision.

Today, writer of the latest Quarterly Essay, Lifeboat: Disability, Humanity and the NDIS, Micheline Lee, on what’s wrong with the NDIS - and how we can fix it.

It’s Thursday, October 5th.

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ANGE:

Micheline, you came to Australia as an eight year old, one of five siblings and three of you with spinal muscular atrophy. You're in your fifties now, so people with disabilities were viewed differently back then. What kind of Australia did you and your siblings grow up in as disabled kids?

Micheline:

When I was around eight, when we came to Australia, it was very much the medical model of disability, where disability is a tragedy and a deficit and the response from society is to provide medical assistance, a medical remedy where there is one.

When we came to Australia and my parents actually became born again Christians, and so while I was growing up with those attitudes in society, there was also the attitudes coming from the community that my parents were in with. Where disability was seen as sign of the devil and that God wanted perfection and so there were lots of prayer meetings and people laying their hands on my head and and trying to exorcise the devil of illness from me. So I saw disability as something that had to be eradicated, really. If I wasn't going to be healed or cured, then it was something that I had to try overcome, especially because there were the three of us in the family and we were worried about being a burden to our parents. Of course, our parents were hoping for the best for us. They meant well, but that was very much the approach, that society was normal and and we had to fit in and try to be as able bodied and conforming as possible.

There's quite a lot of internalised ableism. There's often the fear of being seen as a burden or being seen as a troublemaker. And I found that I had to continually challenge those attitudes in myself. And in fact, I still do.

Audio excerpt – Broadcast:

“The post-budget political brawling stood still for a moment today as the prime minister shed a proud tear in parliament for a good and just cause. She was putting through, with opposition support, the funding arrangements for disability care. The political…”

ANGE:

I do want to talk about the NDIS because in 2012 we saw the introduction of the NDIS bill to Parliament. It was the biggest social reform of a generation. You know, it was the culmination of many years of activism. Could you explain what the vision of it was? Broadly, what was it promising?

Micheline:

The NDIS promised more participation of people with disabilities. It promised to address the huge gaps in participation rates in Australia. It was also promising choice and control over the use of your services so that the services actually respond to your need. And the NDIS was intended to be uncapped. So rather than have an arbitrary amount of services that will allow, you say, to have a shower once a week because you can get a support worker in, then the objective was that it would actually respond to what you actually need in order to function independently and also to be able to participate. And the NDIS also promised to operate as an entitlement. So it's something that will be provided as a right and not as charity and not as something that could be taken away and that there would be a consistent and guaranteed funding available there for services to continue.

ANGE:

And can you explain what that day was like for you watching Prime Minister Julia Gillard introduce the bill that would then go on to create the NDIS?

Micheline:

It was an amazing feeling of feeling seen and heard.

Audio excerpt – Julia Gillard:

“Speaker, few actions in public life give me greater pleasure than introducing the National Disability Insurance Scheme bill does today.”

Micheline:

Because the build up to the NDIS, there was a wonderful campaign by people with disabilities where they were actually bringing to light and opening people's eyes about the ways that disabled people are excluded. And they were calling for change and it seemed that Australia was actually listening.

Audio excerpt – Julia Gillard:

“And everybody here is someone with a powerful story, a powerful story about what it's like to live a life with a disability. A powerful story…”

Micheline:

But at the same time I was worried about how it was being framed rather than emphasising the human rights aspect. A lot of emphasis was being put on the business case of the NDIS that this was a smart move financially.

Audio excerpt – Julia Gillard:

“The NDIS will stand alongside the minimum wage, the aged pension, Medicare and universal superannuation as one of the great Labor pillars of social justice and opportunity for all Australians.”

Micheline:

And of course there are business benefits and financial benefits with more people participating in employment, in education. But in order for more people with disabilities be to be employed, a lot of changes need to take place. We need more than the individual supports that the NDIS was promising to provide. We needed accessible transport. We needed the environment to be more accessible. We needed employers to have inclusive attitudes. So the fear was that the NDIS would be seen as something that wasn't achieving its goals if they didn't have a more realistic perception of the societal changes that were needed at the same time.

ANGE:

Coming up after the break - How the NDIS departed from its bold vision.

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ANGE:

Micheline, can you tell me about your personal experience with the NDIS?

Micheline:

So in relation to my experience, my condition causes progressive weakness and I'm at a stage now where I need personal assistance for nearly all my daily living tasks of getting out of bed, showering, etc. And the NDIS means I can get the support I need in order to live independently at home. But I still have to fight to get the supports that I need.

So the government put money in the hands of disabled people that were supposed to buy the supports they need. But then the government also outsourced the disability support to the private sector and imagined that through the profit motive or the services and supports we made would just grow to meet demand. Of course, this hasn't happened. Disability supports have flowed where profits are most easily made.

So I guess. Am I better off under the NDIS? I would have to say, compared to the old system I am in terms of minimising the effects of my condition. But has it helped me participate in society more? Yes. In terms of getting me ready to go out the door. But once I'm out my front door, I still find that the buildings are inaccessible. Public transport are inaccessible. Attitudes are still quite ignorant and sometimes unaccepting. So I feel that NDIS has not been able to achieve the structural change that is responsible essentially for the exclusion of people with disabilities.

ANGE:

It's interesting to hear you talk about how some daily practical things have changed. But what you said there about when you walk out the door into society hasn't necessarily changed. How can we, do you think, create a caring society? Because as you say in your essay, a caring society can't be outsourced or bought.

Micheline:

So first of all, I would say that that really needs to be the cultural change. And we also need to understand that achieving equality doesn't mean treating people the same. And it takes a multi-dimensional approach, which is at the core of the Convention of the Rights of Persons with Disabilities. And the first dimension concerns taking steps to redress the disadvantage attached to living with a disability. And. That involves responding to people's different capabilities, needs and contexts than we have in the NDIS an example of what happens when you choose a one size fits all system. And the second dimension of the framework requires recognition of equality. So recognising individual dignity and redressing stigma and prejudice. And the third dimension of equality calls for participation in every aspect of society and in particular, disabled persons must be involved at every level of decision making in matters concerning them. So that slogan of nothing about us without us really rings true. And finally, the fourth dimension concerns the need for structural change to accommodate difference and to remove the barriers that prevent inclusion. And so that's where we're talking about the public transport needing to be accessible and education needing to be inclusive of neurodiverse children.

ANGE:

And Micheline, we spoke about how in 2012, when the NDIS was launched, you had a lot of hope and now, you know, more than ten years later, there are obviously a series of flaws in the system. It's not perfect. Are you hopeful that the system can be changed and that the original vision of the NDIS can be achieved?

Micheline:

I think that we can, if we recognise the need for cultural change in that it is not a short term measure and that we need to actually use those four dimensions of equality that I talked about, where it's actually people with disabilities leading change, where it's at every moment attached to the need for equality and that we're not sidelined as we have been with the NDIS by the short term goals and the short term cost cuttings. As we mentioned, the more accessible society is, the less need there is for individual support. So for example, if schools provided more of the support that neurodiverse children needed, then they wouldn't need to have so much support outside of the school through the NDIS.

We're at a really crucial crossroads for disability. We've just received the recommendations from the four years of investigation by the Disability Royal Commission. And in just more than a week we'll be receiving recommendations on the review of the NDIS. And in order that we don't find ourselves in the same situation that we did back in 2012, where we have all these visions, all these intentions, all these reforms, we need to make sure that we don't fail by achieving the cultural change that we need. At the same time, we don't want to fall into the same old cultural ruts when we implement these reforms. We need to put human rights and what equality really means at the centre of every reform.

ANGE:

Micheline, thanks so much for your time today.

Micheline:

Thanks, Ange.

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ANGE:

Also in the news today,

A day after bushfires threatened homes in the region, parts of Victoria’s South-east have now been issued flood warnings, following heavy downpours.

Meanwhile, on the South Coast of NSW, a number of homes have been lost due to bushfires, but a cool change has downgraded fire warnings to watch-and-act.

And,

More than 600,000 people have already voted in the referendum on the Voice to Parliament.

Early voting in the referendum is open now for voters who won’t be in their electorate on polling day, are travelling, seriously ill, or for other reasons outlined on the AEC website.

I’m Ange McCormack, this is 7am. We’ll be back again tomorrow.

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