Janet Rice (Victoria, Australian Greens) Share this | Link to this | Hansard source

by leave—I present the report of the Community Affairs References Committee's inquiry into assessment and support services for people with ADHD together with accompanying documents and I move:

That the Senate take note of the report.

I'm pleased to present this report of our Community Affairs References Committee's inquiry into barriers to assessment and support services for people with attention deficit hyperactivity disorder, ADHD. I'm proud to have chaired this inquiry and today I am privileged to table the committee's consensus report in parliament. It is estimated that over one million Australians have ADHD. ADHD is a chronic and complex neurodevelopment condition that can cause significant impairment and dysfunction in people's lives. It is also widely misunderstood.

This inquiry provided an opportunity to investigate barriers to ADHD assessment and care, as well as establish possible policy interventions to improve accessibility and outcomes in this space, and it was an important opportunity for people with ADHD to speak directly to senators. The inquiry received 700 submissions from individuals, community groups, medical professionals and other organisations, and heard evidence from 79 witnesses across three hearings. I want to thank everyone who made contributions to this inquiry. I have been deeply moved by the personal experiences and openness of the hundreds of people who submitted and the witnesses who shared their ADHD experiences.

However, I note that for many people with ADHD the process of contributing to a Senate inquiry was inaccessible. We tried to improve accessibility but I know that we weren't able to make all the changes required to overcome the barriers that people can face. On behalf of the committee, I apologise and promise I will continue to work alongside my colleagues and committee members to continue to improve access to all of our Senate committee inquiry processes. However, I do note the innovation for a Senate committee report of infographics summarising the findings and the recommendations of this report. I really do want to thank the community affairs secretariat for that innovation and, in fact, for all of their work supporting us in this important committee.

I also want to thank my colleague Senator Jordon Steele-John and his team for the immense amount of work they have done throughout this inquiry. Jordan proposed this inquiry to the Senate. As the Australian Greens spokesperson for disability and health, he and his team have closely engaged with the ADHD community, ensuring that their voices are heard.

This inquiry made clear that our current systems are failing to adequately care for and support people with ADHD. Crucially, we heard that people with ADHD are experiencing significant barriers to accessing proper assessment, diagnosis and support services—two key interlinked barriers with a lack of adequate services and the high cost of accessing these services. We heard that, for many people, getting a diagnosis costs thousands of dollars. Imagine being in a family with multiple kids that have ADHD and having to choose which of them will get diagnosed and be able to access support, knowing that as a parent you probably have ADHD, too, but getting a diagnosis is just completely out of reach. Even if you could afford the cost, long wait times and limited availability of healthcare professionals mean many people are deterred from seeking a diagnosis or from getting medication. This is exacerbated by the lack of services in the public health system for ADHD, particularly for adults and people living in rural and areas.

Additionally, we heard how ADHD services and medication are incredibly expensive due to insufficient coverage under Medicare, the Pharmaceutical Benefits Scheme and the NDIS. Another significant challenge raised in the inquiry included the overall poor experiences of people seeking help. We heard repeatedly how this was caused by a lack of reliable information about ADHD, fragmented care and inconsistent prescribing regulations, overly bureaucratic processes, stigma and variable quality of health care associated with ADHD. We heard evidence about how the lack of support services in schools, out-of-home care and correctional facilities prevents people from accessing adequate support. We also heard about how First Nations people, women, gender diverse people and people from culturally and linguistically diverse backgrounds also face unique challenges when it comes to ADHD support. For many people with ADHD and their families, these barriers have had lifelong impacts on their self esteem, overall health, relationships, educational pursuits, job prospects and financial stability.

As a witness Emi said:

I was diagnosed with ADHD when I was 26. I'm now 31. My biggest wish is that it had happened 20 years earlier. What happened was I eventually worked out myself that I had ADHD. It took a few years after that for me to actually have the courage to seek diagnosis, because it was something I was terrified of going to a doctor and saying this and being perceived that I was just looking to get medication or something and they didn't take it seriously.

So I finally did take myself and source my own diagnosis when I was 26, because at that point everything had fallen apart. I'm lucky that I didn't completely destroy my life, but I was personally a mess. I got through school. Looking back, I can see all the extra pressures I had to deal with because I was undiagnosed and unsupported and untreated. I'm very smart and I use it to compensate all the time. I could do assignments. I'd smash them out at midnight when I was 14, because only under that huge pressure of adrenaline could I actually get them done. That's how I coped. That's also why absolutely nobody flagged that there might be something happening, because I wasn't a problem to anyone.

In response to the heartfelt and compelling testimony of the many people who contributed to the inquiry, the committee put forward 15 important recommendations to the government. These include clear actions for the government to improve the quality of care for people with ADHD, by example, by increasing training in our healthcare systems, schools, institutions and workplaces; to ensure that services are affordable and accessible by reviewing the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme; and to improve awareness and reduce stigma associated with ADHD through a public health campaign and developing a dedicated government ADHD information portal. Notably, the committee also recommended the government strongly consider funding and codesigning a national framework for ADHD by working with people with ADHD and advocacy and community organisations.

The current situation of inadequate access and support for people with ADHD has been considered by healthcare professionals as a public health emergency, and throughout the inquiry it was made clear that a more consistent and coordinated approach is needed across government to ensure people have consistent access to care at all stages of their lives. This is a consensus report of the committee, and I thank my fellow committee members for all of their work on this inquiry getting us to this stage. The Greens of course, as for all consensus reports, agree with the recommendations in this report, but we do not think that they go far enough to address the severity of the issues and the challenges brought forward by the ADHD community. That is why we have laid out some further clear and strong recommendations in our additional comments. These include supporting the disability royal commission's recommendation to establish a disability portfolio and to administer for disability inclusion. We believe that ministerial responsibility in leadership should be established to ensure that disability issues, services and support systems in Australia are coordinated in a way that works for disabled people. We also believe strongly that this position should be held by disabled person.

Another important recommendation we have put forward is for the National Disability Insurance Agency to improve the accessibility and quality of information around eligibility of ADHD as a primary condition under the NDIS. Many submitters to the inquiry identified the NDIS as the best avenue of support for people with ADHD, but many also identified significant challenges they've experienced in engaging with the agency. In addition to the minister for disability and NDIS reforms, the Greens have also put forward strong recommendations concerning training in ADHD awareness and education for educators, ensuring greater accessibility by establishing nationally consistent recognition of nurse practitioners as valid diagnosticians for the purpose of ADHD diagnoses, ensuring workplaces are suitable for a neurodiverse workforce and further exploring needs based funding models for neurodivergent students and their families. The Greens recognise that the current situation for people with ADHD is, as the healthcare professionals stated in the inquiry, a public healthcare emergency. We call on the Labor government to step up and act. The Greens's recommendations, along with those put forward by this inquiry, provide a clear framework for change to better support people with ADHD, to make sure they receive the care they need and deserve. I urge the government not to let the powerful testimonies of the ADHD community shared throughout this inquiry to go to waste, and I call upon the government to implement its recommendations as quickly as possible.

Marielle Smith (SA, Australian Labor Party) Share this | Link to this | Hansard source

As the deputy chair of the Community Affairs References Committee, I also want to make a few brief remarks on this important report, Assessment and support services for people with ADHD. In doing so, I really want to acknowledge the work and contribution of everyone on the references committee, as well as participating members, for the work they put into being able to deliver a consensus report.

Whilst I acknowledge the perspective of Senator Rice regarding what other things she would like to see, I think there are some really strong and important recommendations in this report. I'm really proud, as the deputy chair of this committee, to see those recommendations and to see the views and experiences of so many people with lived experience of ADHD reflected in some of those recommendations. I genuinely want to thank committee members for the extensive work which went into the inquiry and, indeed, the work which went into the preparation of what is a very lengthy report. It's a report full of lived experience, as it should be.

I also want to acknowledge, as Senator Rice said in her remarks, that we really tried to make the inquiry an accessible process for people with lived experience of ADHD, but we didn't do well enough. It wasn't without good intent—a lot of effort and thought went into how we could try and rewrite some of the practices which govern this place and which govern our work in committees to try to make the inquiry more accessible. It has been a learning experience for our committee, and I know it will lead to things being done a bit differently in the future—where possible—to try and make sure it is more accessible because, as always in community affairs, it's the perspectives and the lived experiences of the people affected by the issues we inquire into which absolutely make our reports and which are critical to the recommendations we deliver. I know that, as a committee, we will try to do better to make sure a broader perspective of those lived experiences can be reflected.

I want to thank those witnesses who were really honest with us about their experience of what we thought were better and more accessible processes, but which, obviously, weren't good enough. I want to acknowledge that and I thank those people with lived experience who pushed ahead and engaged with us, who came to our hearings to present their lived experience and who worked through our submission process and contributed to our work. Your contributions were so valued and so important in the final recommendations.

We received over 700 submissions during this inquiry, and we had 79 witnesses attend three days of public hearings across the country. An entire chapter in the report reflects the lived experience of the overwhelming majority of witnesses. Throughout the course of our inquiry we heard about the impact of ADHD on education and unemployment, and the social impacts of ADHD—when it comes to family relationships and social isolation—on mental health and wellbeing. It takes a lot of courage to come and sit and talk about some of these things in a committee process in front of a panel of senators. We tried not to be intimidating, but it's not a normal thing for witnesses to do. I'm really grateful to the people who came and shared their perspectives.

We heard that people with ADHD often have poor consumer experiences and face difficulties in accessing services. We heard concerns around service delivery for people with ADHD, about their difficulty with finding the right kind of support from the right practitioner, their struggles with executive functions and how their experience of ADHD was affecting their lives, family, employment, health and wellbeing. As is, I'm sure, the experience of many people in this place, I have personal experience with ADHD through a loved one who has ADHD. I was very familiar with their experience, but not everyone experiences something like ADHD in the same way. The breadth of experiences we heard was really important, and I certainly learnt a lot in this process. I urge everyone in this chamber to pick up our report and have a read and, in particular, to read the chapters on lived experience.

I'm really pleased that we were able to come to the multipartisan recommendations that we did, which do go to improving the experience of people with ADHD in seeking diagnosis and those living with ADHD, including the recommendation around the development of uniform prescribing rules to ensure consistency between state and territory jurisdictions, through the ministerial council on health. We made a number of recommendations around a more coordinated approach to ADHD, affordability and accessibility of services, quality of care and, importantly, work to improve awareness and reduce stigma. All of these recommendations, I am sure, will inform the work the government is doing to make health care more affordable and more accessible. It's my hope that we can see some of these recommendations implemented quite promptly.

Again, I want to thank everyone who participated in our inquiry, and I want to thank the other senators on the Community Affairs References Committee for their work and goodwill in delivering this report and the consensus recommendations within it.

Jordon Steele-John (WA, Australian Greens) Share this | Link to this | Hansard source

I rise to speak to the final report of the Senate Community Affairs References Committee inquiry into the barriers to assessment and support services for people with attention deficit hyperactivity disorder, or ADHD. I am proud to have championed the establishment of this inquiry which has been ongoing since March 2023, and I'm deeply honoured to have had the opportunity to do so alongside Senator Rice as chair of the Community Affairs References Committee. I thank you, Senator Rice—Janet, if I could be so informal!—and your team, for your incredible work in collaboration with my team during the course of this inquiry.

Despite an incredibly inaccessible submission process, over 700 people made submissions, and that is a wonderful, wonderful thing. I also thank the secretariat team for the community affairs committee for the work that they did to modify some of those processes and to make those steps forward in terms of inclusion in the process, acknowledging that there is far more work to do until the process is genuinely accessible and inclusive for the ADHD community. So many people shared their stories, their knowledge and their hopes with the committee so that the systems that are desperately in need of radical transformation can be fixed. The report's release today is historic. We now have 15 tangible, implementable recommendations which can—and will, if actioned—improve the lives of ADHD-ers. What has been made abundantly clear throughout this inquiry is that ADHD is a deeply stigmatised and misunderstood condition. Through the stories people with ADHD have shared with this inquiry, we know that their rights to health care have been systematically denied.

I am incredibly proud of the recommendations in this report. They speak to the need for a national framework for ADHD, national consistency in access to medication and an increase in funding for advocacy organisations, as well as the need to review Medicare item numbers, expand services, reduce wait times and provide support to people in this cost-of-living crisis. There are recommendations for a neurodiversity affirming public health campaign to reduce stigma and increase understanding and for significant training in education and workplace settings, including setting minimum standards for training about neurodiversity in those settings so that people can have the basics that they need as professionals to work with neurodivergent people. These are huge wins for the community, and they wouldn't have happened without the ADHD community.

We must acknowledge, however, that there are some gaps that remain between what the ADHD community has shared with the committee and the recommendations that this report puts forward. For this reason, my fellow Greens senator and committee chair, Janet Rice, and I have issued a series of additional comments to accompany this report. Through these comments, the Greens have put forward additional recommendations to address the scale and urgency of the action that is required, particularly in terms of the role of the NDIS and the need for the role of the NDIS to be expanded. The community, medical professionals and advocacy organisations see that there is a need for the NDIS to provide greater support services to ADHDers. Our Greens recommendations put ADHD on the NDIS access list—category A and category B—to ensure that folks with ADHD have access to the scheme. There is a need for a minister for disability, to be responsible for implementing these changes. I say again: a departmental taskforce will not cut it. It will not make the scale of action required. Only the Greens have recommended that this ministry for disability and inclusion be established. We are also the only party that have recommended that priority research for funding be conducted and led by neurodivergent folks. The neurodivergent community have had more than enough research conducted on them by neurotypical folks. For contributions to the field to be meaningful and affirmative, research programs must be led by neurodivergent people.

I cannot tell you the number of times throughout this inquiry that I was approached by people expressing that this was the first time they had felt seen. It means so much to so many people that the government now make meaningful and urgent changes to support neurodivergent people. To do that, we must ensure that, even though this inquiry has finished, the ADHD community stay at the centre of these conversations—that their lived experience informs where we go next. I have witnessed their determination and I know that they will not let their voices go unheard.

Right now we are faced with an incredible opportunity. It is time for untreated ADHD finally to be recognised as the significant and debilitating disability that it is for so many people in this country. It is time for ADHD diagnoses to be covered by Medicare and for the NDIS to recognise ADHD as a primary disability in practice as well as in theory. It is time for folks to be able to access their medication when required, without judgement, and for mainstream services—mainstream mental health services, in particular—to be made accessible and inclusive to folks with ADHD. I repeat the call, made by witnesses, for the government to reverse its decision to cut the number of subsidised sessions available under the Better Access scheme. These sessions helped improve people's mental health and they must be returned.

It is time for people with ADHD to have equitable access to diagnosis and treatment regardless of their gender or their ability to pay. It is time to put these recommendations into action and stop punishing an exceptional group of people for just being who they are. I seek leave to continue my remarks later.

Leave granted; debate adjourned.

(Quorum formed)