Prior to the inquiry, ADHD had not garnered much interest within parliament. What was behind her drive to change this?

Through our work with the disability rights movement here in Australia, we had the opportunity to collaborate with many fantastic individuals, and organisations who are part of the neurodivergent community, particularly those with ADHD. And in that work and through those campaigns, we received really clear feedback that there were gaps in services and supports for those with ADHD here in Australia. What really took that piece of information for me and added an additional layer of motivation was then when we as a team looked at the gap between the experiences of the community that they were sharing with us and the level of knowledge of the issues in parliament.

We did a bit of research for example to identify the number of times in the last six years previous to our work in this space that ADHD had been mentioned in the Parliament and it had been mentioned less than five times in that period and most of those references were either myself and my team talking about the experience of ADHDers with the NDIS, or it had been a reference made by a parliamentarian to another parliamentarian, in a derogatory sense during the course of debate around a piece of legislation. So there was this massive gap between the community experience and the community need and the level of knowledge in the parliament and also in the government. And that was a really motivating.

Realization for me. It sent a very clear message that we needed to dive into this led by the lived experience of the community to ensure the government and the parliament.

Was actually able to address and engage with the needs of the community. Can you talk us through the process of getting support for a Senate inquiry and the major steps involved?

Absolutely. So the first step in setting up our SETTED inquiry into ADHD was to check that the feedback we had received from the community in a kind of ad hoc way based on campaigns that we had run collaborating with the community was representative of the broad experience of ADHDers in Australia. And so we launched a ADHD community survey asking the community, asking ADHDers whether they be formally diagnosed, whether they have engaged in self diagnosis, whether they have decided to select medication as a form of support to share with us their experience of that process. And we received an overwhelming response. Thousands of people took the time to fill in that survey and it enabled us to identify very clearly that yes.

The common experiences of cost being a barrier of diagnosis, wait time being a barrier, discrimination, poor access to support were indeed a national experience. Wherever you lived in Australia, these things were common experiences. From there we worked on terms of reference for the inquiry with the community to ensure it reflected that lived experience. Members of my team with lived experience of ADHD themselves took the lead in the creation of both the terms of reference and the campaign that would sit around the inquiry itself. We then worked with members of parliament within our own party, within the Australian Greens, and across the parliament to build understanding and support for the proposed inquiry and for the timeline.

Of the inquiry. Critical to this piece of work was ensuring that there was a shared understanding within the various Senate committees and among the various senators that we would need to take a different approach to this inquiry in order for it to be successful. We would need to modify as much as possible committee practice and process to recognize and enable ADHDers to actually share their experience with the committee. The end result of these negotiations and this time taken explaining and checking our assumptions was that we delivered a terms of reference that reflected.

The real need of the community in terms of where people needed us to look and began that work of building a shared understanding in parliament of the problems and the solutions.

Excellent. Thank you. So how did you go about identifying appropriate stakeholders within the community and government?

Well, we as a team take a lived experience first approach. Our work is grounded in the human rights of disabled people and neurodivergent people and we seek to translate that commitment to human rights into reality, into our actions via a deep understanding of the social model of disability as well as the affirmative and other models of disability. All of this leads us back to and grounds us in an approach which centres the lived experience of whichever community we are acquiring into or collaborating with. So it's really important that from the beginning we were looking to engage with, ADHD as themselves, with academics and experts who have lived experience themselves and with lived experience led organisations.

We also really wanted to engage with clinicians from across the professional spectrums who work with and collaborate with ADHD community to understand their experience of providing support to the community and the changes in policy that they saw as necessary. We were additionally keen to make sure that the witnesses we brought before the committee, if they engaged in a spreading of myths or misconceptions around ADHD, and these myths and misconceptions are still very prevalent in the discussion, that they were challenged clearly, and that the community saw that that was, what was occurring so there could be trust in the inquiry process.

Of the many submissions.

So the major themes that were raised in the submission were firstly cost. The cost barrier to getting diagnosis is profound. Witnesses gave us evidence speaking to thousands of dollars, tens of thousands of dollars being needed to access diagnosis. Completely prohibitive for many of those searching for diagnosis and that very much drove a large portion, though not the entire portion of those that had had to tend to self diagnosis to be able to get some element of understanding and articulate their support needs. Secondly, the issue of wait times for those that were able to access and overcome the cost barrier. People then join a queue that is often six months, a year, a year and a half, two years long.

Meaning that they go for an extended period of time without the understanding and supports that they may otherwise access and often very desperately need. Those wait times get worse if you need a paediatric psychologist or psychiatrist to be involved or if you live in a rural or regional setting. Third, misunderstanding and discrimination whether it be medical misogyny, whether it be myths about what ADHD looks like and what it doesn't look like in certain cohorts of the community or whether it be discriminatory ideas as to why somebody may or may not be accessing or seeking to access medication, there was so many pieces of evidence that built a common theme around misunderstanding and discrimination.

And fourth and finally, I would say inconsistent regulation and treatment of various ADHD related medications whether it be state and territory regulating substances such as dexamphetamine in different quantities with different requirements or different prescribing requirements particularly or whether it be the types of medication that are or are not publicly subsidised here in Australia. The inconsistency across the board was in itself a barrier and reflected outdated thinking of policymakers of the past as they sought to regulate these different substances and medications. So those were I would say the four most consistent themes.

And was there anything that came through in those submissions that you or the committee found surprising?

Because of the extensive amount of community engagement consultation that we conducted prior to our launching of the inquiry and because members of my team were proudly those with ADHD. The evidence that we took as a committee didn't necessarily come as a particular surprise to me. It very much did come as a surprise to other members of the committee who weren't aware of these issues and barriers in the same level of detail. And I think what was very much revealed to all of us was that the parliament and governments of all parties need to do more work in understanding ADHD properly and ensuring that understanding is reflected in policy. Because there was a suspicion that there was a large gap between the community need.

And government action at the beginning of the inquiry and that suspicion was absolutely confirmed as we continue to explore these topics. There was a vast gulf and this sadly still remains in many areas, a vast gulf between what the community is experiencing and what the government's policy response is, and that gap needs to be closed.

And what are the next steps for the Senate inquiry?

The next step for the Senate inquiry, and it's slightly ironic, we delivered our report many, many months ago. The government had a deadline to respond to that report and has failed to meet the deadline for response. So the next step in the inquiry's processes, the next step for the recommendations is for the government to give us an actual official response to our recommendations. That's what we're going to continue to push for. And then once we have that response, we can continue the work from there.

And going forward, what does success look like to you? What do you hope is the outcome of this inquiry and this process?

To myself, my team, and to the Australian Green, success looks like the removal of the barriers the inquiry identified particularly the barriers of cost and the barriers in terms of wait time and discrimination that exists in the various different government systems. To come to an understanding of yourself as an ADHD or somebody that would like to explore diagnosis often requires a deep amount of emotional work and emotional labor to say nothing of the money you might have had to expend to even to get to that point. Once you get there, once you get to the point where you would like to explore a diagnosis or self understanding or to ask for a support or to a modification, like your role in that process in terms of finding money and time.

Should should end. You should simply have to find whatever you need in yourself to go through that diagnostic process to make that ask, to begin that journey of understanding. And that's the world and the system we've got to build together. One that is free of the barriers of cost and excessive wait time so people can just get the information and the understanding and the supports that they need to live a good life.