Hello there. Hi. Thanks for your patience, and great to hear that your microphone works.

No worries at all. I'm usually the one thanking people for their patience and quietly relieved my microphone works too. So that isn't good.

Gosh. It's it's our absolute pleasure to welcome you here today, senator. And and just so that I'm aware and forgive me my my naivety around this, but can I call you Jordan, or should I call you senator? Absolutely. Please. No. No. No. Jordan. I I hate being called senator anywhere else but in the chamber. So very much either. So Jordan is absolutely fine. Okay. Alright. Great. That's good to know. So, Terry, I think we should probably introduce Jordon and give the full bio for everyone who's listening today before Jordon jumps into.

Into sharing with us some some great achievements and then also giving us what's coming up next in regards to all the work that he's been championing. But Senator Jordon Steele John, a West Western Australian senator, your portfolio is huge. I don't know how you manage health, mental health, and disability very good team. We're a very good team. Ah, well, see, this is it. You know, it's it's the it's not the I, it's the we. So in 2023, established the Australian parliamentary inquiry into access to services and supports for people with ADHD and the campaign to improve the lives of ADHDs in Australia was engaged has engaged over 10,000 people. Congratulations. And, together.

You're charting the past to transform government systems and to work for people with ADHD, and we thank you. Absolutely. We can't wait to hear, as I said, what you've got planned. I'm hoping Matt has fixed his microphone issues. Let me try and bring him back. Matt, are you in? Oh, no.

Still not working. So it's crazy.

Oh, it is. Oh, I'm so sorry, man. I don't know what let me we'll try once more. Jump out and jump back in. Senator, I won't I won't keep you. I'd really love to hear directly from you. So without further ado, I'm gonna take myself off screen, and I'd yeah. Just love to hear your insights.

Fantastic. Thank you so much, and thank you so much to the organizers and everyone that's worked so hard to bring this conference together, for inviting me to share a bit of insight and perspective on our work in Australia around the ADHD inquiry. It really is a pleasure to have been given the opportunity to speak with you today. I want to begin by acknowledging that I'm coming to you from unceded First Nations land from Noongar Wujap Wujap here in Bullough, Perth. Pay respects to elders past and present and recognise that sovereignty.

Over this land was never ceded. Particularly important to do as we travel this journey of truth and of treaty and voice ahead of referendum day where I'm very much hoping that there will be a yes to the voice to Parliament. My or I should say our collective team journey to this moment that we shared together or share together in this digital space begins in about October of last year. We'd recently taken on the health portfolio for The Greens and many members of the community had reached out to us, particularly people with lived experience of ADHD, sharing with us a number of what looked to us to be systemic barriers.

Facing community members. Now these weren't a complete surprise to us. We've had the honour and the privilege of working alongside many activists and advocates and academics in the broader disability rights space for many years who are neurodivergent people, who are proud of ADHDers, and have learned a lot from the community as we navigated and further developed concepts around disability justice and disability pride, where people who are neurodivergent have made such incredible contributions to the academic understanding of disability as a social construct and also to the disability.

Rights movement and broader community through an understanding of the different ways in which particularly social structures can be challenged and rebuilt to be more inclusive of people regardless of their impairment or difference. So it wasn't totally new to us, but we were really keen to check our assumptions. We had people reaching out to us and flagging a number of things. And we wanted to make sure before we went any further in our advocacy or our legislative work that we had properly a, checked our assumptions of what people were experiencing in the community And b, that we were undertaking that work in a way that was led by lived experience. And I'm really proud to say that our team has two incredible ADHDers.

In it. And together with the rest of our communications and campaigns team, we kind of embarked on a program of what would it look like to test the assumptions that what we are hearing is emblematic of a broader series of barriers in the Australian ADHD community. So what we did is we co designed a survey, an online survey of the ADHD community. And we made sure that as we wrote the questions for the survey, as we thought about how we would promote it, we had a clear plan to make sure that the questions were accessible and inclusive, reflected actually the questions or allowed us to gather the data that we needed to from the community and had a plan of how we would distribute that survey.

Throughout the community more broadly. Yes, working with traditional stakeholder groups and peak bodies, but also making sure that we got it into new spaces where younger people could be more hopeful that we'd get input. But particularly that we would get input from women and non binary people because there was already a sense that to the extent to which policy of Australian government engaged with ADHD, there was a bias, agenda bias, in the research and in the policy response. So we put that survey into the world in October and we had a kind of modest goal for it. We wanted to get a thousand responses to the survey in a month to give us a bit of a data set. And we were absolutely overwhelmed.

By the response from the community. We had 10,000 responses to that survey almost within the week. Like, was a huge upswell of engagement from the community and a big desire finally to have been asked by somebody in a political decision making space what is the actual experience of yourself or your family member of somebody with ADHD. And also to be given the space to share that fully, to kind of expand as far as people needed to as to their actual experience of services, supports, stigma. So we had that information come back to us and we then got on with the work of analyzing that data. And what came to the top pretty quickly, what stood out pretty starkly, was that people were experiencing a completely inadequate system.

A system characterized by cost barriers which were and remain far too high for people to ever climb over. Situations where stigma, particularly in the medical professions, is something which people really struggle with and experience at huge rates. High levels of bias when it comes to the diagnosis or treatment of people who are women or gender diverse and have ADHD. And a number of different issues which again and again spoke to what we would call systemic barriers in the system. There were people that were saying that they had turned up to their healthcare professional and had wanted to have a conversation with them about the prospective diagnosis.

And they'd been told by that professional that they couldn't have ADHD because they turned up having had a shower and reached their appointment on time. We had people talk to us about the literal five, ten, fifteen thousand dollars that they had had to spend in order to attempt to get a diagnosis. The literal years that people were waiting on waiting lists for assessments. The absolute howling void where post diagnosis supports should be. And on and on and on it stretched. There very clear indicators that what we needed was a parliamentary inquiry into the systems and supports for people with ADHD in Australia. And that's what I and the team then kind of set about to.

Bring about. We we kind of worked up a terms of reference for that inquiry, much guided by the feedback that had been given to us through the survey. And we were keen to ensure that we brought the community with us in the process of this inquiry, creating online and in person opportunities for people to be updated about the work of the inquiry and to understand how they could make submissions and give evidence to the inquiry as well. We managed to persuade parliamentary colleagues in the Senate to support the establishment of the inquiry under a committee of which the Greens chair. And then set about setting up a program for that inquiry to make sure that it would have the opportunity to properly.

Investigate the different barriers that have been identified by the community and to enable the community to give that evidence. One of the things that really was quite confronting when we began that work was that to that point, we did a bit of research with the Parliamentary Library and we found out that to that point there had never been a parliamentary inquiry or investigation into ADHD assessment or support services in Australia. In fact, we did a bit of research that looked at the last six or seven years for mentions of ADHD on the official parliamentary record. And what we found was that most of them were myself making speeches previous to the establishment of the inquiry. Or they were MPs.

Making derogatory comments about each other and throwing references to ADHD in there. So there really was a lack of, what should we say, a lack of focus on the issue and experience of the Australian ADHD community from the Parliament. And so we were quite aware that we were filling quite a large gap. We were undertaking a piece of work that very much was kind of overdue in the parliamentary context. So it's historic from an Australian parliamentary perspective, but we were also pretty aware that it created great opportunities to explore these issues in a way that would be useful to the global understanding of ADHD communities, of support services, of assessment best practice, and what does it look like to explore.

The failures and successes within the health care system, within the education system, within the employment system, for instance. And what I am really one of the things I'm very excited about in terms of the evidence that we've taken and the recommendations that we are now kind of preparing to make when the report is handing down is I think we will have reflections on those systems which will be globally relevant and useful and also have created an opportunity for researchers and advocates and lived experience community members to come together through the course of the inquiry and really have an opportunity to get on the same page about what needs to change in the Australian context. And I think that is probably quite applicable to other.

Global contexts as well. I would also say that it has come at a time when Australia was undertaking broadly quite significant investigations into the treatment of disabled people in society more broadly. Particularly in relation to violence, abuse, exploitation and neglect. And one of the settings in which those phenomena occur is education. And we've heard really clearly that the education system needs to shift. It needs to change, but radically to be inclusive of disabled and neurodivergent students. And that has huge implications for the ADHD community. And as we work through what those changes look like, I think what we're about to discover is what makes a classroom more inclusive for an ADHD child also makes it more inclusive.

For people with many other access and support needs in that investigator, in that educational environment, I should say. So too with healthcare. So too with healthcare. So much of what we have heard as a committee in relation to the stigma that people experience in the healthcare system, the reflected dismissal, the discrimination, the solutions to those phenomena, yes they are most certainly better education for clinicians, better education for healthcare professionals more broadly. Better community awareness, we understand that that is very necessary as well. We also need to confront the reality of medical misogyny as something that exists in healthcare settings and has extraordinarily detrimental impacts for women and.

Gender diverse people when they attempt to get healthcare, either for their ADHD or for any other reason. We have I think also been able to facilitate a really important conversation about the regulation of ADHD medications, the need for a nationally consistent approach and the need for the destigmatization of those medications. It is not acceptable that people seeking a pharma, you know pharmaceutical responses and supports to medication based responses and supports in relation to their ADHD are treated like drug seekers. It's absolutely unacceptable. It makes about as much sense as me being treated as a drug seeker because I need a wheelchair. Like it doesn't jive with reality at all. And we need to drive those prejudices.

Out of our regulatory system and treat medications as the necessary access based support that they are. Finally, I think one of the recommendations that I think we'll end up hope that we'll end up making along with bringing those cost barriers down to access diagnosis and assessments and supports, broadening the healthcare professionals that are able to make those diagnoses or prescribe medications where needed, a framework for improving public understanding and for increased understanding in the medical professions. All of those reforms are incredibly needed. I think it is also it has brought into clear focus once again the need for a disability minister at the national level, to help coordinate policy responses, across departments.

Because to do an ADHD strategy justice, to be able to implement it, to be able to actually get the tangible outcomes for people, You need somebody whose responsibility is to drive that work. We don't currently have that at the Australian level, and it's a real gap for us. And the Royal Commission that's just concluded has recommended the establishment of this ministry. I think this report will hopefully do the same. And I think from that point on there's a lot of pressure on government to establish that position and enable that coordinating role within government to actually get these outcomes because so often people are passed from pillar to post. The last thing I'll say in in conclusion is that through the course of this inquiry.

There's been a figure or a statistic rather that's really stuck out to me, which is that by the age of by the age of 12, a young person with ADHD is likely to have received 20,000 additional pieces of negative feedback than a child without ADHD. With horrendous flow through mental health implications for them. And I really hope that the work that we have done as an inquiry, the work we will continue to do to get the recommendations implemented which is where the work now moves to once the report is tabled, will mean that the next generation of kids do not experience those negative ramifications, those negative pieces of feedback. And are instead celebrated and recognized for the utterly fantastic.

Human beings that they are with the superb brains that they possess. So with that said, thanks very much. And I'll if there's any time left, I'll go for questions.

There is certainly time left, which is why I've shown up on screen here. And I just I mean, it's just so astounding what you've been able to shift and move, and some of those figures that you've mentioned is just you know, it's heartbreaking, especially in that's just awful. And so from our so from your perspective and knowing that, you know, obviously, it takes a team, as you've mentioned, to deliver this and inquiring and establishing that into to getting to getting a lot of like minded organizations behind you and then also to the general public.

What happens from here in regards to timings in terms of, you know, those next steps? What's what's the ideally the if you could move all roadblocks out of the way, what are we what are we talking in terms of the Australian community to to kind of get the benefit of everything that you've been working through?

It's a great question. So I think one of the witnesses that gave evidence to the inquiry said it best when they framed ADHD under the kind of state of the absence of supports for people as a public health crisis that Australia needs to take really seriously. And I like to see the report is tabled in the first couple of weeks of October sorry, the first week of the parliamentary setting of October. And I would like to see the government really urgently engage to implement the recommendations that we've made or will make. And I think without wanting to preempt those recommendations, they will go to, as I say, reducing the cost barriers to access assessment and diagnosis.

If you're not from an Australian context, we have a universal healthcare system called Medicare. And I think there is a strong argument to be made for the inclusion of ADHD assessment under Medicare, as well as the expansion of the type of clinicians that can both perform the assessment and prescribe the medications, a reduction in the cost of those medications, if that's, you know, where you decide to go down. And then we need to tackle that stigma that exists in the health care system through a combination of increased education, but also better pathways for people to flag discrimination when they experience it. Now we can do most of those things reasonably quickly. Like, there actually shouldn't be a.

Massive lag time between the report and when they're implemented if the government does drag its heels. And I think we can't underestimate the extent to which both sides of politics would like to return to a time where they could ignore the ADHD community and ignore the number of gaps that are in the system. I think they would rather like to. We, as a community, will have to organize together to be a bit bulky and make a nuisance of ourselves between now and election time to extract those commitments, because it's not accept the status quo as we all know. The status quo is not working. It is not working for people, and it needs to be changed.

Absolutely. And so from just with that, I mean, obviously, the call out to the community, I'm sure, will rally. But what about from a senate and a colleague perspective? What what is the sentiment like now on the floor in regards to this issue?

I think I think awareness is is increasing. The inquiry has done a huge amount of work to to raise awareness of that, but there's still a long way to go. You still you still have to have conversations with people where their starting point is, oh, yes, ADHD, that thing that naughty little boys get. And you just have to do the kind of soft breathe in and let's explain what the reality of this is. So I think that that still needs to be tackled, and also as well this idea that there are that there still isn't as accepted as there should be, the understanding that ADHD is a highly underdiagnosed condition. And so as we see increases in diagnosis and assessment, what we're seeing is a course correction.

Particularly I mean, this is what we've heard quite powerfully in the evidence that has been taken, particularly when it comes to the gender bias around assessment and diagnosis. We're actually seeing a massive course correction. So some of these narratives around, you know, young people are only thinking they've got ADHD because of TikTok, is, you know, that kinda needs to be chucked in the bed.

Absolutely. And I think, you know, it's it's you've touched on something there in regards to areas of alignment and misalignment. Like, in terms of really you know, the inquiry has certainly sparked a debate. You know, there isn't too many people that don't know of the term ADHD, but I guess the the misalignment on what it actually is. I mean, are there any areas in particular and you mentioned TikTok and social media and it's, you just naughty little boys. But is there is there what what are you seeing in regards to feedback to your office?

Well, what I what I think we need to do in response to to to the issues of where people are getting their information, unless, again, hopefully, this will a recommendation we will make as a committee is an actual proper government run public health and awareness campaign around ADHD that is co designed with people with ADHD that tackles the horrendous misconceptions around what it is and what it isn't. The kind of stereotypes about it looking only one way for all groups of people. You know, let's actually tackle this and give people access to the information that they need, you know, in consolidated space. At the moment, unfortunately, Australian Government is able to often get away with drastically under servicing the ADHD community.

Precisely because of those misunderstandings that are still so prevalent in the community. So we do need to shift that. And we also need to recognize, I think, that on the journey between where we are and where we want to be, because of the cost barriers that exist to assessment diagnosis and getting medication, and the regulatory barriers as well if you do decide to go down that medication based support route. Self diagnosis is valid. Self diagnosis is valid and people are asking for adaptations and understandings and adjustments for a place of self diagnosis is absolutely something that needs to be respected and reflected because at the moment there are a few people that have a $2 hopping around in their pocket.

That they can drop on diagnosis, at least in the Australian context.

Absolutely. But I think that's also too from an international context. I mean, you you know, you're part of a global conference today and I think we've we've heard some some really inspired people, over the course of the last, gosh, sixteen hours, I think. We have, you know and certainly, some of our counterparts within The UK do have opportunities and tools for for adults to move through a a diagnosis process in terms of, you know, understanding.

Well, what are these what are these key things that I'm noticing? And, oh, I just that really resonates with me. Let me understand that a little bit further. And I think, absolutely, we need to lower the cost of these things so that we can start to understand that because the impact on our community as presented by other professionals here on this is is massive in terms of mental health, in terms of anxiety, in terms of depression, and kind of not people not obtaining their user manual as as one of our esteemed colleagues mentioned earlier in this stream, then, you know, that's that's hard.

That's hard for people. It's very hard. I think one of the one of the least explored areas that we will have a chapter on in the report is actually the intersection with the criminal justice system. If you think about the myriad of ways that the criminal justice systems, wherever you are in the world invariably if you are sitting and listening to this or participating in this conference from within a justice system that is based on quote unquote Western models of the justice system, you're you are within a system that punishes, penalizes, and incarcerates people for failing to take certain steps that are related to executive function, Whether that be.

Paying certain fines on time or behaving in certain ways or, you know, whether it be executive function, emotional regulation, any of the other barriers that we know are common to folks with ADHD. And yet the system's response is incarceration in an environment where you are denied access to medications based medication based supports and adjustments are nearly non existent. In Australia, and I know that it is the case in other jurisdictions as well, particularly the juvenile justice system, when there are research reports done on the access and support needs of young people in those contexts, what do we discover? We discover a lot of people with ADHD. So we've got to look at, a, why is it that we are, you know, punishing people.

For for certain failures of executive function, and is that actually fair? Should we continue to do that? And then, two, for people that do end up in that in that setting, how can we make sure that people are provided with those supports? Because how could you expect a criminal justice system to have any type of rehabilitative effect if you're putting people in an environment where they can't even have their basic access and support needs met?

My goodness. That is that is a lot to discuss, and I wish we had more time because, you know, it is such an interesting area. And, you know, it transcends what we've spoken about today, and I think it's it's really been a wonderful opportunity for us to encapsulate everything that we've been talking about in terms of, you know, impacts on workforce and strengths within the workforce and impacts in parenting and the strengths that, you know, from a parenting perspective and then also to education. I think the work that you're doing really ties a bow around everything that what we're trying to do as an organization in terms of shedding a light. And so we thank you so very much.

And it's been a a wonderful opportunity for ADHD Australia to participate in the senate inquiry. And we want to make sure that we are there, you know, hand in glove moving forward. So, again, thank you very much, Jordon. I it's been a wonderful, wonderful afternoon listening to you. Thank you.

Thank you so much. I really appreciate everything that your organisation does as well. I'm looking forward to working together as we bring down these barriers and create more inclusive systems for ADHD folks in Australia and across the world. Terrific. Alrighty, Jordon. Thanks. Bye. Thank you. Bye.