Main Image

26 July 2023

First of all, I'd like to acknowledge that wherever we are in Australia, we're meeting on Aboriginal land. In my case, it's the land of the Wurundjeri people in Melbourne. And one way which I like acknowledging, I'm committed to acknowledging, the ongoing connection between Aboriginal people and the land over 60,000 years is by voting ‘yes’ in the upcoming referendum.

I'd also like to acknowledge that Jay Weatherill and Minderoo have been crucial in pulling this together and I appreciate the opportunity to talk about NDIS and all matters disability and kids. So, thank you, Jay. And to all of the participants in the symposium, including Skye, I think did a great job recently, I was following some of her social media updates from New York. It's great to be with all of you because I know that we all share the same goals.

I thought I'd give a very quick update on, if you like, what I think are selected highlights and trends in the disability early intervention space, and what we're doing. The first thing I wanted to do was just to let you know that we've been starting to reform the NDIS. That's a matter of record. But one of the really big issues is how we provide support for kids with developmental delay in their early years. We've learnt so much in the last number of years about the power of early intervention.

So, we've got a review being handed down, an independent review into the NDIS which will be handed down in October. So, we're really getting to the skinny end of the review season for the NDIS right now. They've already released a paper, our report on what we've heard, so that summarises the consultations and issues so far. I commend people to have a look at the report in the NDIS review entitled “Our Report on What we've Heard”.

I'm not telling anyone on this gathering anything, but early intervention I think is something we can do better. It's remarkable, almost half the number of participants on the scheme of the nearly 600,000 people are under 18 and a third are in the cohort up to, more than a third of that number, the half, so a sixth of the scheme nearly are under 7. So, we are without a doubt one of the big engine rooms of helping tackle early intervention for kids with disabilities and their families. But what the review has heard so far is that the needs of kids and families are not being considered holistically. There is an increasing reliance on therapy delivered in clinical settings, and I think that this is, or the review thinks, that this has got in the way of children living ordinary and inclusive childhoods.

Of course, there's constant pressure on the NDIS to meet the needs of all kids with developmental concerns, developmental delay, and disability, because I think and I'm sure most of you would agree, that other service systems and community supports are lacking. In other words, the NDIS has become the only life raft in the ocean. And if a child's developmental journey is not in the standard form, then everyone pretty much just sees the NDIS as the best chance to get early intervention resources.

The chairs of the review, Professor Bruce Bonyhady from Melbourne University and Lisa Paul, former secretary, amongst other things, of the Department of Education federally, are asking for your help, and they knew I was speaking to this symposium.

What does good support look like for children living with disability? What are the supports and services that families might need to help children with disability thrive? And what are the other supports for children with disability that should be available outside the scheme? There is a genuine desire for reform of the NDIS that it be co-designed people with disability and their families. So, we're interested for you to contribute your observations to the review and to provide your thoughts.

A particular area, but not the only issue is how do we deal with people in remote and regional areas and First Nations communities, where unmet needs are going to require innovative solutions. The idea of just going down to your local speech pathologist or allied health professional is not a realistic option in some parts of Australia.

And even if you've already made submissions, from the lens of disability and early intervention, we're pretty interested in the observations that are gathering like this can come up with. Now one thing I should say, and I don't know if Andrew Whitehouse is on the line, I saw he was listed as a participant. We've been very interested in what he and the researchers at Telethon Kids Institute have been doing. And I had the opportunity in April to announce that they're going to deliver a pilot program to examine pre-emptive intervention for infants, showing early behavioural signs of autism. And I really should give a shout out to Amanda Rishworth, the Minister for Social Services. She has certainly helped bring this initiative to fruition.

I think that this pilot can gauge whether early intervention could reduce the level of support required later in a child's learning journey. Now, I want to be very clear. This doesn't mean people are being kicked off the Scheme. What it does say is that parents and kids just want help with their children's developmental delay. And what we need to do is see how early the screening could be if we could have universal screening at nine months and 12 months and 18 months. I know there's people far more expert than me even on this gathering.

But what I'm interested in is how do we just identify a child's needs early and then provide them with the support they require to be independent, happy, to be able to get the best out of their learning journey. 700 families in Western Australia have been invited to be part of the Telethon Kids Institute Pilot. It's been funded by my agency, the NDIA. It's going to look at the benefits the program has for kids between nine months and 15 months and their families. I think it is exciting. It's not the only research or thing going on around the country, but it is it is pretty exciting.

We know that the NDIS cannot be the only institution or proposition to help people with disability in our community. And I think one of the inadvertent - and this is more a general point going even beyond early intervention - is that there was a everything's now an NDIS matter, which was never the intention because the NDIS was only for people with quite severe and profound disability. And it takes a village to literally raise a person with a disability and that's how we get more mainstream inclusion.

So, I wanted to mention both the initiative with the early screening and telethon and our review. I should also just update you that we are doing some things already. We were successful in the May Budget, and for those who are seasoned political budget watchers, you don't always hear Ministers say that, but we were successful in getting the largest new investment in disability agency capacity. So, we've got $900 million over the next five years to build the capability and capacity of the NDIA, the Safeguards Commission and the DSS.

The NDIA has established a children's task force to accelerate improvements in the early childhood approach. As you know, my colleagues Anne Aly and Amanda are leading work, which I'm greatly interested in the early years’ strategy. Generally, what we're hoping is that we can get the NDIS focused on outcomes for people rather than just inputs. And that really is our journey. And we also think, and I also personally believe, that the family needs to be part of how we tackle our choices and options for people with disability and kids with disability.

And there are success stories. I think is the other thing which I just wanted to stress to you. I've got a couple of cameos here, but Avi is from Darwin. She plays wheelchair basketball. She she's got a pretty good friends’ social group. Her mum has been able to start some extra work in her own capacity when she was very tied up being the carer. And Avi also has a rare genetic neuromuscular disorder. There's no way that Avi would have been able to do this.

There's an 11-year-old, Ace. He is a great swimmer. He'll tell anyone that who's listening to him. He's a pro of riding a horse. He also was born nonverbal needs assistance with everyday activities. The fact that the NDIS was able to facilitate a communication device and a speech therapist, he’s now 11, he can speak for himself with the aid of technology. The NDIS is changing lives and I just want to reassure people that the focus of our reform is to put the best interests of the participant first. And whilst of course we want to make sure that the trajectory of growth is sensible and that money is not being wasted, the NDIS is here to stay, and we really want to just make it delivering consistent outcomes which focus on a person's ability to participate in the community and lead a fulfilling life.