Janet Rice (Victoria, Australian Greens) Share 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.