E&OE TRANSCRIPT
Topics: National Autism Strategy
AMANDA RISHWORTH, MINISTER FOR SOCIAL SERVICES: So pleased to be here in Perth today to launch Australia's first ever autism strategy, and I'm joined here by the co-chair of our autism Oversight Council, Clare. This strategy is the first ever in Australia. What it does, it sets out a vision of how we make Australia a more inclusive place for autistic people. How do we make sure that they are socially included, economically included, that their journey before and after diagnosis is a better experience, and of course, their health and mental health is improved. These areas are the key areas that autistic people said they wanted a focus on. This strategy was put together with autistic people. It was led by the autistic Oversight Council who has spent two and a half years consulting broadly with over 2000 autistic people, their families and advocacy organizations. What it has led to is 22 commitments and 48 specific actions and recommendations. These actions are outlined in our first action plan, which highlights a number of initiatives that we will take immediately. One of those really is about funding a broad peer support program. Lot of autistic people and their families told us that they feel very alone and that walking alongside someone, getting advice support, and just exchanging ideas with someone with a similar experience was incredibly powerful. That's why we'll be setting up and have allocated funding for a national peer support program, of course, in addition to that initiative, another area we really focused on is employment. How do we ensure employers are not missing out on the skills and talents that autistic people can bring to a workplace? And so we'll be working on toolkits and training modules to support employers, as well as autistic research, that stuff we know works to make our places more inclusive tailor how cab a workplace, how can a hospital embed some of this best practice into their environment? These are really critical parts we need to work on, and we will keep working on them and look at how we translate that research. These are just some of the actions that we've taken. Ultimately, this is a seven year strategy which sets out a vision and gives us all something to work towards. I'll now hand over to Clare as chair of the autism oversight committee to talk about her experience and some of the things she's most proud of.
CLARE GIBELLINI: Thank you, Minister and thank you again for your commitment to getting us to this point today. It's been a very big couple of years, but a very exciting couple of years. It's been wonderful. I've been an advocate for almost 20 years, and it's been wonderful to be part of a process that has been co-designed. We have actually been included at the table. We have had equal voice. We have had the opportunity to be part of the decision making processes, and that, to me, means more than I could possibly ever express. I think, you know, it's the commitments that we have in that strategy are going to make a tangible difference to autistic Australians. But I also want to talk about things that you won't see written on a page. We're already seeing change as a result of the development of this strategy. We're already seeing government departments work better in supporting their autistic employees that they already have within this, within their staff, and so that that's, you know, that's an incredible fit to me to see, to see happening. I'm really looking forward to the continuing about authentic leadership of autistic people in the next iteration. You know, the governance frameworks that will be sitting set up actually will cement the voices of autistic people at decision making tables. That's huge, because we're for a very long time, we haven't necessarily been included in the decisions that impact our lives. So to be having that written to a strategy and setting stone is incredibly valuable. So, yeah, I'm really looking forward to what comes next and to continuing to see the change that we're already seeing happening as a result of this process.
JOURNALIST: There's a lot of strategies that talk about inclusion never end up making a lot of tangible impacts why shouldn’t people think this once again?
AMANDA RISHWORTH: I think we have been very clear that we have 48 different actions or initiatives that we are going to start taking. So while there is a vision, importantly and a commitment, what we also have is 48 actions we can already take, and that is, for example, changing the way government communicates with people, giving people options of how they communicate with government. Now I'm not going to pretend that this is going to be easy and that we're going to see everything change overnight, but what it does provide is a clear road map with tangible actions and initiatives that can be taken to improve the lives of autistic people. And importantly, these are not actions government have come up with. These are actions that autistic people themselves have said would make a difference, and that's what's so powerful about this strategy.
JOURNALIST: A lot of priorities and commitments. How you prioritize?
AMANDA RISHWORTH: Look, there are a lot of commitments and priorities, but we think that we can chew gum and walk at the same time. We believe, for example, that the key areas which we have attached funding to do include peer support. It does include that research translation, it does include employment tools, but it also includes an epidemiology state. We know that the figures suggest about 300,000 people have a diagnosis of autism, we believe, and there's a lot of evidence to back this up, that this is underestimated. So it is about laying the foundations for future and broader reform as well. But with a roadmap, it gives us a clear pathway of how to work together and get there. We also have, as Clare mentioned, a framework, implementation framework that has autistic leadership at the table. And I can tell you, working with the Oversight Council, they won't let us drop the ball that the strategy is a seven year strategy, and that is to align with Australia's Disability Strategy, which finishes in 2031 the first actions we will start taking immediately, but we will continue to add to those, the department of health and the health minister is currently working on a specific roadmap for health for autistic people that obviously will complement the work, but this is a seven year strategy for the actions will start immediately.
JOURNALIST: Obviously, a huge range of people with autism in Australia, for the mum watching this on the news tonight, at home with two kids with autism struggling. How is it going to affect her? What can she now access?
AMANDA RISHWORTH: Well, firstly, I would say that for parents and carers and autistic people themselves, they often do feel alone. What the first steps we were taking and we will be taking include, for example, peer support for that mum, if she's able to talk to someone that's been on a similar journey, and we heard some of those stories here today that will make a big difference. One of the other areas is to provide better information before, during and after a diagnosis of autism that better, more easily accessible information, which we will be bringing forward, hopefully will ensure that whether it's a parent or autistic person themselves, knows where to get help after a diagnosis. So we're looking at a number of different areas which can support both families, but also autistic people themselves, I would say as well, the strategy focuses on strengths of autistic people. And I would say that for that parent at home, knowing that we are making changes so that, for example, we will be supporting organisations about how to be more inclusive of autistic people. We'll hopefully make sure that perhaps her visit to the supermarket is more supportive of her child or her herself. So there is lots of changes that will be made more broadly to include people with autism in our community, in our society, along with ensuring that people don't feel alone. So these are some tangible things, but importantly, this is the first ever strategy that focuses specifically on the unique experiences of people with autism. Now I must acknowledge they are very varied. There are people with high support needs and people who with small adjustments, whether it's to the workplace or in public spaces, can feel more included. This strategy looks at supporting all Australians with autism.
JOURNALIST: Kids in school whose NDIS packages are being wound back for their autism support. So autism awareness, Australia says that many of these children's packages are being wound back under the NDIS. What are you doing to support them? Well,
AMANDA RISHWORTH: The NDIS plays a very important role in supporting early intervention for autism when it comes to schooling and inclusion in schooling, that is obviously a responsibility of states and territories. But within this strategy, we are looking at how we translate the research that shows how schools can best support autistic children, and look at how we implement that and to support educators. So there's two issues there, I think that you've raised. One is, how do we support the education system be more inclusive or of autistic children, and support autistic children? Well, that is a piece of work that I am very keen to work with states and territories, and the investment we've made in research translation plays a critical role in that. In terms of the NDIS, the support for early intervention is still there. There have not been changes around the early intervention of children with autism through the early intervention pathway, and in fact, the amount of those packages has actually increased over the last year.
JOURNALIST: You’re making that transition though for the states and territories to take more responsibility over the education side of it, the NDIS packages, for some people, are changing.
AMANDA RISHWORTH: The NDIS was never meant to replace the responsibility that states and territories have about creating inclusive education. And you know, I would point to South Australia and the good work they've done by employing autism inclusive lead practitioners in their school to make schools more inclusive. I don't want to confuse the two elements. NDIS is there to support early intervention for children with autism, but when it comes to inclusive education, we will work with the states and territories to make sure that their systems are inclusive of autistic children and some of the work that I've talked about today about translating education, best practice into actual action on the ground, we will be funding that works on issues autistic people face, and quoted one of them as good education if we're looking at how to best support autistic people in the workplace.
JOURNALIST: How are you going to ensure that they can go up in motion so they can continue to move up the ranks if they don't have the same education as someone who's neurotic?
AMANDA RISHWORTH: Well look that economic inclusion, social inclusion, elements of the strategy. It is really important that we get a good education system that's inclusive of autistic people equally, it's important that that employers are very much recognising how they can best support autistic people and allow them to get the same opportunities as neurotypical people, and I think that's the key here, and some of the tools that we'll be developing are about recruitment and how employers can look at their recruitment practices to take practical steps to create a more even playing field for autistic people. But in addition, absolutely, the question around how career progression occurs is important too. I've been very clear, and this has been an area I've been very passionate, in the broader disability space, that it is not just about getting a job for someone with a disability or an autistic person, it is about enabling a career that they are passionate about and that they like. So there will certainly be work done through not only the work that we've announced in the strategy today, but also our centre of employment excellence, which will be looking at how people with disability, more broadly, can be supported in career progression.
JOURNALIST: Culturally and linguistic, diverse communities have been identified as a priority cohort. What measures are specifically helping them or supporting them?
AMANDA RISHWORTH: Look I think that's a really important question. When it comes to, for example, peer support. It's been identified that people that may be autistic people or family members of autistic people want to talk with people with a similar experience. And so whether that is through the peer support, whether it is through being very conscious of asking people how they would like to be communicated in different government systems. Making sure that we have resources in language is some of the initiatives that we're committed to, to make sure there is a priority for linguistically and culturally diverse people.
JOURNALIST: Was there reason for this announcement today? Perth.
AMANDA RISHWORTH: Look Clare, our co chair is from Perth, and I have to say, there is a lot of really important work being done here in Perth and Western Australia. We are having this launch at an organisation called Kind who is very skilled at supporting autistic people and families through the journey of diagnosis. There is also some really good work done through what's called the Inklings initiative, which is about supporting parents to best support their little children when they may be showing autistic signs. I must be really clear that program is not about changing children. It's about enabling parents to give the right support for their neurodiverse child so that they don't fall developmentally behind. So there is some really good work being done here in Western Australia, and that includes the advocacy and work done by our co chair Clare.
AMANDA RISHWORTH: You mentioned at the start that you're a person with autism, and you've got some kids who also have autism. How do you think this will change the lives of your children?
CLARE GIBELLINI: I do. I think it's going to be significant. I mean, if you so, I have children who are in their 20s, and I have an 11 year old. If you think about what my children in their 20s experience versus what you know the 11 year olds experience might be now, as they move through the education system, it's different. It's improving, and I think that this will contribute to that as well. I was a woman who was diagnosed later in life, and I think this strategy is going to prevent more women and girls from having my experience with poor education outcomes and poor employment outcomes and discrimination through the health system. So those are the sorts of things that I think that will impact. And I guess it's my family's experiences that drive my passion for this. So, yeah, I think that that will have a good impact.
JOURNALIST: And women and girls often mask their symptoms. How would this hopefully, I guess, aid in better diagnosis?
CLARE GIBELLINI: knowledge about the diagnosis. You know, the funding that's going to work and the actions that are going to accomplish they're going to be huge. The awareness and acceptance campaign that's going to actually show the diversity of what autism looks like, you know, that's going to have a huge impact. The epidemiological study that will show just how many of us there are in the community. The thing about data is, data is what informs policy. If we don't exist in the data. We can't be supported by the policies. So those sorts of things are going to be hugely important for us. And peer support from other women and girls as they go through the journey, or have been through the journey, being able to support people as they start. It's going to be massive.
JOURNALIST: How will this peer support mentor program work?
CLARE GIBELLINI: Still working out the details of that. But you know, what I really love is with all of these things, and there's going to be heavy, heavy elements of autistic leadership and drive and design. So it's going to be great.
JOURNALIST: For a long time, there's been a lot of communication about autism and a lack of understanding about how people can present in your work as a co chair, have you been surprised with the submissions about how important can be? How do you feel like we can better tackle acceptance to reinforce understanding all the different ways?
CLARE GIBELLINI: Yeah. I mean, I guess personally, I wasn't surprised by the diversity that we saw come through, because this is what I live and breathe every day. I work in the advocacy sector in my day job. So I wasn't necessarily surprised, but I am surprised that when I step out of the disability sector, that the lack of understanding or the diversity that I see, so I do some work in emergency services, and the lack of understanding there surprises me still. So I think the well built acceptance and awareness campaign that really showcases the diversity of our experiences is going to go a long way towards that. Even just yesterday, I had a conversation with someone about the strategy and about what they could do as an emergency management agency to showcase the differences and the capabilities of autistic people that they actually already have in their services, and they maybe didn't necessarily know about so it's going to have.
JOURNALIST: if you can sum up, maybe briefly, what the biggest barriers are up for people?
CLARE GIBELLINI: That lack of understanding is huge. The there's whether they've been to or not. Everybody's born with inherent bias, right? We grow up with it. It's what we grow up around. Those sorts of things. People, they kind of have an idea of what they think autism looks like, or they have an idea about what people may or may not be capable of. And so I think that if we can challenge that, then that's going to eliminate a huge barrier, because there's an automatic assumption that someone can't as soon as you say that they're autistic or that you are autistic, so that's that's a huge barrier. Then I think that another massive barrier that we experience is the way that information is communicated, and the way that information that we communicate back is received. So I think that if we could work on that more accessible communication option, then that will be great. And that peer support piece the world is not built for us, right? And so if we can connect and be connected to people who are already navigating those, those very complex systems that don't necessarily talk to each other, because you've got state versus federal, those sorts of things are going to make a massive difference. Just nobody walks through this world without support, and so for us to be able to connect with people just like us who lived our journey, it's going to be huge.
JOURNALIST: And how do you feel like today? What are the emotions?
CLARE GIBELLINI: I've had a couple cries this morning. I'm not going to lie, because it's a very big, very emotional day, but proud, not negative emotions like I feel really proud. I feel really proud to have been a part of the process to get us to Australia's very first one. I feel very proud that we have had investment and from the government. I feel very proud that my fellow Oversight Council members, the working group members, even the autistic facilitators that we hired to do the consultation sessions, right down to the people who attended have been listened to. And I think that you know all of that information, even though this is a maybe a 12 month strategy, none of that has been lost, and it will inform the rest of the strategy as it, I'm sorry, the rest of the action plans as it goes through. So yeah, it's a big it's emotional, but it's really proud.
JOURNALIST: Quickly, you talked about how this is not just the beginning. You're already starting to see something. Could you just list off again, what kind of change you're already starting to see?
CLARE GIBELLINI: Look, there's lots of things like I'm already seeing. You know, through this process, we were supported by the Department of Social Services. I've already seen the changes in the way that they support their own employees, and the accessible and the accommodations that they provide their own employees that's come about as part of this process, and so has the way in which lived experience is valued by government departments. I've seen a change over the time of the development of the strategy that's really important because, you know, historically, remember, I've been here for 20 years, we've often maybe provided advice, and then that's never come back into something tangible. We've never been part of decision ring, and we are starting to see those sorts of changes. And then I've also had call outs from some major retailers today saying, We like, what we're seeing, what can we do, how can you support that big. That's big. It's the start of the conversation, and the level of interest from those organizations is fantastic. So yeah, I am really pleased with what we're on now.