KIRSTEN DEANE: Thank you so much Jordon for agreeing…

SENATOR JORDON STEELE-JOHN : No worries, wonderful to be with you.

KIRSTEN: …to meet with you today.

We put a call out to the Every Australian Counts community to say “What would you like to ask
your politicians in the lead up to this federal election?”

SENATOR: Fantastic.

KIRSTEN: I have to tell you, we got more than 200 questions.

SENATOR: 200? That’s amazing.

KIRSTEN: You’ll be pleased to know we’re not going to ask them all.

SENATOR: OK, yeah we might not get through all 200.

KIRSTEN: No, no. So what we’d like to do is we’ve picked a selection that are most representative, the most common…

SENATOR: Wonderful. Wonderful.

KIRSTEN: ..questions that we got asked.

But I wanted to ask just before we get into those questions, we’re here in Canberra for the budget this week.

And I wanted to ask you, what was your reaction to the announcements that were made as part of the budget last month?

SENATOR: Look, I’ve got to try and keep this G-rated.

But, I think it was a disgrace, quite frankly.

If you look at the majority of the surplus, a big chunk of that is coming from money that was assigned to the scheme.

This is money that hasn’t been spent because the scheme in so many ways has been broken.

So, that’s folks that needed the money but couldn’t spend it.

You know? And so, if there is that extra buck lying about now, that needs to be reinvested into our scheme.

Not syphoned off into other areas and that’s what we’ve seen this budget do.

KIRSTEN: And can I ask you there was one additional announcement last night, which is the more than $500 million set aside for the Royal Commission into abuse and violence.

SENATOR: Yes, indeed.

KIRSTEN: Neglect experienced by people with disability.

SENATOR: Absolutely. Absolutely.

KIRSTEN: What was your –

SENATOR: Look, my reaction to that is that it is a profound win for disabled people and the Green movement that had been campaigning alongside disabled people since 2014.

You know, there’s horrendous images on Four Corners that kind of brought home to the community the reality of our lived experience.

That then triggered us to integrate that Senate inquiry.

But for five years we had to kind of bang our head against the wall and you know, the Liberals never came onboard.

It took a very long time to bring Labor to the space.

But last night we saw finally the money being given to make sure that it works.

We need now to see the Terms of Reference so that we know that, with confidence that that money will be spent well and we also need to see disabled commissioners leading this effort.

This ain’t gonna work if it’s a bunch of old white dudes with no lived experience. It needs to be men, it needs to be women
from a range of different backgrounds who are disabled themselves.

KIRSTEN: And who understand very deeply what the conditions are.

SENATOR: Absolutely. Absolutely. We really need to see that because the story in the NDIS so far is the story of an incredible idea campaigned for, by disabled people and our allies which is then being comprehensively failed by able-bodied politicians thinking they know what’s best for us.

And you know, doing silly things like capping the scheme or giving us an IT system that doesn’t work.

Or not training the staff properly.

And if you’d have asked disabled people back at the beginning what needed to be done, we would’ve told you that this needed to be done.

And they didn’t listen.

And that’s where we’ve landed and that is ultimately what needs to change.

KIRSTEN: Hmm, alright. Well thanks for that Jordon.

I’ll get to the supporter questions now.

SENATOR: Yeah, let’s go.

KIRSTEN: We picked this first one from Natasha because it summed up so many of the questions.

SENATOR: Hello Natasha.

KIRSTEN: Why is everything taking so long?

Why am I so far removed from the people making the decisions?

Why do I have to keep jumping through so many hoops?

What do you think needs to be done to make the system more responsive and quicker?

SENATOR: Such a good question.

First of all, we need to lift that staffing cap.

The original recommendation was that the agency should have at least 10,000 employees directly.

Not you know, subcontracted. It now has 3,200.

That’s setting up to fail from the beginning. So we need to do that.

And more than that, there actually need to be a good chunk of ’em people with lived experience.

And I’m not just talking about people with lived experience you know, at the back end, administrative end.

I wanna be sitting down with a planner that looks like me.

Or that has a, you know, an autistic child.

Or, you know, a person with Down syndrome or, you know, actually looks like the community that they’re meant to be serving so that I don’t have to go through a 100 million hoops of “This is what my disability is” before we even get to what I need.

So that’s number one.

And number two is an IT system that works.

Again, back at the beginning, the recommendation was this is a new approach to social services that requires a bespoke ICT system.

It’ll cost you some, but you’ll make it back.

Instead what they did was they repurposed state Social Services as Centrelink, an old Centrelink system.

And, hey presto. Bad, bad outcomes.

And third, what we need to do is train people properly.

I’m sick and tired of the stories of people who are sitting down with administrators or planners that have no idea about the disability type that they are looking at.

That causes so much distress.

So much unnecessary fighting and ultimately longer wait times.

KIRSTEN: Thanks Jordon.

Alright, this next question is from David.

SENATOR: Hello David.

KIRSTEN: How can you make the system more flexible and more person friendly?

It’s very rigid and bureaucratic.

SENATOR: Perfect question. Number one.

And it’s a radical idea, you’ll have to brace myself – brace yourself.

You should be able to see your plan before it’s locked in. Wow.

You wouldn’t buy a garden shed if you couldn’t see what you were buying before you did it.

But you’re meant to lay out a plan with your life goals at the centre of them without making sure that what you said is what was heard. So that’s number one.

Then it’s, how do we change things easier without triggering a whole plan review?

Because people’s lives change.

Nobody is able to plan their life goals totally for a 12 month period if we could easily do that, we’d be androids.

So life changes and your plan needs to be able to flow and shape with those changes.

So that’s also something we could do.

And also, making it easier to access online through a better IT system we’ll be able to enable people to keep on top of what’s coming in what’s coming out, which gives you more certainty and it gives you an ability to plan the next step forward.

KIRSTEN: And one question that we get a lot of is why can’t we move the money around?

SENATOR: Oh yes. Well again, it’s a bloody good question.

And it is something which people in many other areas of life can do.

This kind of flexibility and the ability to adapt to changing circumstances is what the vast majority of people demand from various different services.

I never understood why that isn’t something that disabled people can have.

KIRSTEN: Alright, so there’s a bit of a follow-up question from Ruth and she says…

SENATOR: Howdy Ruth.

KIRSTEN: ..what could you do to make sure there’s more consistency and fairness in the system?

At the moment, plans seem a bit hit and miss.

SENATOR: Absolutely.

They are hit and miss and the result is that a scheme that was designed to actually break down the wealth disparities in terms of outcomes in the disability community, the educational disparities, it’s actually entrenching it.

What I mean by that is if you’re a disabled person born into a, you know, rich, white family maybe with a lawyer or two in your family tree you’re maybe not gonna have a bad time with the NDIS because you can cite the relevant clauses of the Act and get what you need.

If you’re from where I’m from in WA, in Rockingham you know, and you’ve not had that experience in your family you’ve never engaged with disability services before odds are you’re gonna get a worse deal.

And that is not OK.

Now, what we need to do to solve that process is train planners better so that people have the knowledge to deal with these areas.

And then make sure that we skill share across agency offices and experiences.

‘Cause at the moment, there’s still like kind of siloed culture which we need to try to avoid at all costs.

KIRSTEN: So actually that leads up into the next question from Dianne, which is, what do you think needs to be done about the training of NDIS planners and Local Area Coordinators?

SENATOR: Absolutely. Well, first of all, it needs to be based in a human rights understanding of disability translated into reality through the social model.

By that, I mean you need every single person that pulls a lever in the NDIS to understand exactly what disability is i.e. that it is created by the interaction of an impairment or a difference with barriers in society.

And so, therefore, the job of the scheme is to break down the barriers and give you the ability to break them down yourself.

So that’s number one.

Then it needs to be led by disabled people.

I wanna see trainers working with disabled people.

I wanna see packages developed with disabled people.

And I wanna see people given the right time to learn those skills on the job.

There needs to be a massive focus on the recruitment of disabled planners.

That needs to be a special focus for the Agency, I believe.

So that you can actually sit down with somebody who gets it.

You don’t have to explain it to them.

And more than anything I think there needs to be a continual process of professional development.

So that people are given more opportunities.

But also held to account.

There’s a little bit of holding to account needed.

It’s not just giving you the opportunity to sit down and do Disability 101.

It’s about then going back and how much of it did you retain?

And then not just how much we were able to retain in the test but how much were you able to implement.

What was the experience of the participant when they engaged with you?

And that is something that we actually need to be more comfortable with saying “Do you know what? You’re not doing this quite right. You must do it like this, otherwise this isn’t the right job for you.”

KIRSTEN: And getting a bit of feedback from the people who are going the system. On how… what it was like to be on the other side.

SENATOR: Absolutely. Absolutely.

Just to… oh anyway, I can’t go into an aside, anyway, yeah, OK cool.

KIRSTEN: Alright, I have to say this is a question that comes up all the time both online and in our community forums.

What do you think needs to be done about transport?

There’s no good having funding if your NDIS plan if you can’t get out there and access the things that you want to do.

SENATOR: Oh, absolutely. Absolutely.

Transport, like housing and some parts of AT has been mishandled, I think from the very beginning, to be quite honest with you.

There needs to be an ability to pick the form of public transport that you need, which ultimately means coming back to the conversation about flexibility.

And there needs to be an understanding that by its very nature disabled transport or I should say, universally accessible transport is more expensive, because it isn’t at scale.

But the benefit of enabling somebody to participate in the community and therefore expend the other funds that they’ve been allocated in the economy and the community kind of balance that out at the end of the day.

So that is the approach that we need to take.

It actually needs to probably look different in your rural and regional areas than it does in your urban centres.

But it needs to enable the maximum amount of choice and control on behalf of the participant.

So that if I live in the city and getting to work is as easy an Uber but I can’t take the train because the train line is inaccessible then that’s something that I can do.

Or if I’m in a rural or regional area and I have dedicated taxi service or something like that works for me, then I can use that too.

Because being able to make the transport choice that is best for you is the real critical component here.

KIRSTEN: And so you actually mentioned housing then and that was one of the questions that came up is that…it’s from Robert.

What do you think needs to be done to create more housing for people with disability?

SENATOR: There’s a couple of things we can do.

One of them is actually slightly outside of the scheme.

It’s about getting our design policies broadly in Australia up to the universal standards they need to be at.

So that we don’t continue to create inaccessible housing solutions for people.

So let’s stop making things worse.

When it comes to SDA, and SIL, I think we need to break down the barriers that are leading people in some situations to either stay within semi-institutionalised settings or move into them when they weren’t in them previously.

It needs to be a really clear and simple message.

If I’m a disabled person, and I want to live on my own or if I want to live with someone else.

I get to make that choice and it’s not for you to say “Well, that’s too much of an expensive option.”

Because that’s not what this scheme is about.

KIRSTEN: This question is from Sarah.

What do you think should be done to make sure that the people who are not eligible for the NDIS still get the help they need?

SENATOR: Absolutely.

Look, what we need is a coordinated approach, that says, “The creation of this scheme has created gaps in the medical area, sometimes in the psychosocial area.”

That’s a massive issue.

And what we need to do is work out between State and Commonwealth how we fund and fill those gaps.

That’s gonna be a complex administrative process.

But in the interim, while we’re figuring that out let’s not let people fall through the cracks.

Or be used as pawns in a state versus federal versus local government game.

My position is very clear.

The Commonwealth should pick up the bill while they deal with the states and local governments to consider a long-term funding solution.

Because ultimately, the Commonwealth is the level where the NDIS sits and can implement a universal solution across state and territory.

Will it cost us money? Of course, it will. Of course, it will.

But to be honest with you, what price solving some of these issues?

You know, we need to get ahead of it now.

There needs to be urgent, urgent funding to particularly the psychosocial gap that’s opened up.

Because people have just been left with nothing.

And that is not OK.

KIRSTEN: And you can’t leave people dangling while governments are arguing about whose job it is.

SENATOR: Worse than that, you can’t really use the fact that they are dangling as part of your negotiation at COAG.

Come on. The community demands rightly a higher standard of politics and you know if that’s realpolitik in Australia, I don’t want any part of it.

Let’s just step up as a federal government as a federal legislature, end that.

And look for a long term sustainable solution.

KIRSTEN: So lots of people asked us questions about advocacy.

SENATOR: Oh, yes.

KIRSTEN: So this one was from David.

Advocacy is essential for fair and adequate planning if clients are to gain the full benefits of the NDIS.

SENATOR: Absolutely.

KIRSTEN: So why is that advocacy is so poorly supported?

And what do you think needs to be done about it?

SENATOR: Well, when we consider the question of advocacy what we’re really talking about is voice.

It’s the ability to make your voice heard.

And one of the worst outcomes through this implementation period has been the way in which the states and local levels of government across the country have stepped back from the funding of advocacy.

And allowed organisations to fall over precisely at the moment when they have been most needed to help people make their voice and therefore their choice heard in the transition processes.

We need to get back to a form – yes, project-based funding is good for advocacy. Most certainly.

But there is a real case in the advocacy space for more sustainable long term funding.

So that people can have job security.

So that you can work in this space with confidence.

To the question of “Why?”

Because it allows people to flag when things aren’t working and if advocacy funding isn’t there people can’t tell you and annoy you about the problems that exist.

A lot of people in this space would be a lot happier if people weren’t able to pick up the phone and say something is wrong.

And that’s a bad cultural reflection on Parliament.

And it can’t one that’s allowed to continue.

Because ultimately, ultimately, investment in advocacy and voice is not only the right ethical thing to do it will ensure the most efficient function of the scheme, that stops you having to go back and do your tenth plan review.

It stops you having to deal with the media nightmare of this awful case blowing out of proportion.

So there needs to be a different view.

It’s not encouraging nuisance.

It’s actually a human right and solving long term problems.

KIRSTEN: People don’t really understand that advocacy is problem-solving, do they?

SENATOR: No, they don’t. No, they don’t.

But I sometimes feel like there’s this attitude that the problems in the NDIS have kind of crept up on people.

And I feel like well if that’s the case you’re kinda being crept up by an iceberg. You know?

It’s been moving towards you, but if you haven’t heard from people it’s because you’ve, A: cut their funding and B: put them on a six-month funding cycle, which means everyone’s got their second eye looking at the job application form. You know?

And it’s not good.

KIRSTEN: So I’m gonna ask you one final question.

And I hope you don’t mind…

SENATOR: No, of course.

KIRSTEN: ..because it’s a personal question. So…

SENATOR: It is my natural colour.

You were involved in the fight to get the NDIS up in the first place.

SENATOR: Yeah, yeah.

KIRSTEN: You are a person with a disability.

How do you feel six years on as we sit here now and we look at what’s happening with the NDIS.

How does that make you feel personally?

We’ve talked about all the problems.

But how does that make you feel as Jordon?

SENATOR: As Jordon, frustrated that we are having to fight for something that we fought so long to establish in the first place.

You know, it was a national campaign.

For a lot of people, it was our last shot at freedom.

Freedom is what it was fundamentally about.

The right to say, “I’m human. I’m equal.”

“And I deserve to be supported to live with dignity.”

That was what the campaign was about.

It brought people together in beautiful ways.

And we believed that once that foundation stone had been established it would then be about, OK now that we’re recognised as fundamentally equal, how do we actually get on with the rest of the work that needs to be done?

‘Cause the NDIS isn’t the be all and end all, it’s just one part.

And, instead, what we’ve had to do is fight to defend, defend, defend.

And it’s been eroded.

And that’s incredibly frustrating.

When you have conversations with, you know, I worked with a mum in WA whose child has got Duchenne’s muscular dystrophy. Life-limiting.

And in the transfer process in WA, they’d been rejected even though they weren’t meant to be rejected.

And they’d lost $10,000 worth of funding and of their therapy support.

And it’s taken six months to resolve, in again, a life-limiting situation and it took one call for me to fix it but that shouldn’t be the way that the scheme works and that breaks your heart.

In the same breath, I have a great pride in the community that has continued to fight.

We have come together. We’ve organised.

We’ve not gone quietly into the night in any shape or form and we continue to assert our human rights.

And I think that that is a great tribute to the strength of our community and what we can and will achieve together.

KIRSTEN: So on that note, because you are a really important part of our community, we have a special present for you.

SENATOR: Oh thank you. Oh my God.

I don’t know if it will fit.

KIRSTEN: Your own EAC teeshirt.

SENATOR: Oh my God. That is wonderful.
Thank you.

It might actually fit. I’m not that fat.

Wonderful. Thank you, everybody, so much.

This is great. I’ve always wanted one of these.

KIRSTEN: There you go.

SENATOR: Thanks, thank you so much, Kirsten.

KIRSTEN: And thank you for your time.

SENATOR: Oh absolutely, anytime.

See you, everyone.