29 July 2023

Hi, good morning everybody, and thank you for inviting me to our share today's conference. I'd like to acknowledge that we're on the lands of the Wurundjeri people. I pay my respects to elders past and present. And in one way I will pay my respect is when the referendum is held this year, I'll certainly be voting yes to put our First Nations people on our constitution.

I acknowledge the people online, as well as the delegates here. It's a pleasure to be part of the sixth Annual AADPA Conference. I was very fortunate to be able to listen to Professor Mims speak and as she's spoken about and researched and written, the ultimate outcome for health and educational interventions, participation, enhanced participation in family life and society in the economy. The World Health Organization calls it perhaps a little less Shakespearean language involvement in a life situation. I think we know what that means. 

So now I'm here to talk about the NDIS perspective, and I just want to say to all of you that the NDIS goal, in my opinion, is to offer necessary and reasonable supports to Australians with disability so they and indeed their families can have a fulfilling life. When I helped to create the NDIS 13, 14 and 15 years ago, I called it the right to an ordinary life. But I probably update that it should be the right to fulfilling life. 

Supports have to be both reasonable and necessary. Now, in the ten years that the scheme has been up and running, I will put to you this morning that it was relatively unloved by the absentee management of the previous coalition government. What I mean by that is that when it worked well and it has worked well for many, it's life changing. It's fantastic. But when it doesn't and when it hasn't, I won't mince my words - it could be traumatising. The second full time job, exhausting and tiring. And at the heart of that was inconsistency. And I also put to you that the scheme didn't receive the quality of management and attention that it deserved. 

Since last June and the election, we've been putting a range of changes in place. But one thing we've done is establish a review of the scheme chaired by disability reformer Professor Bruce Bonyhady, respected Commonwealth Public Servant Lisa Paul and a panel of experts, many with lived experience to work with people with disability and their families, their advocates, the people who work in the system on how we can improve the scheme to make sure that decisions always occur in the best interests of participants, to make sure it's sustainable for generations to come. 

Along with the Australian research community, some of whom are here today of course. The NDIS review is considering the role of early intervention, improving quality of life and improving long term outcomes for children with disabilities.

You may be aware that of the nearly 600,000 participants, nearly half of them are under the age of 18. The NDIS is an investment. It's designed to make a life changing difference to what some would call the inequality of luck. But as we agree, the goal of early intervention, be it in children or adults, is increased capacity, increased independence and increased participation. My wish is for the NDIS to be a catalyst for increased social and economic participation. I fundamentally believe that participation is enhanced by increased independence, independence and empowerment. However, in building independence through the NDIS, we need to be careful because I actually think that some services and constant appointments can be a type of informal institutionalisation long after our society has endeavoured to close the big institutions in which children and adults with disability were so poorly housed in the past. The NDIS review has already identified there is an increasing reliance on therapy delivered in clinical settings. The review panel believes this perhaps can get in the way of children living ordinary, fulfilling and inclusive childhoods. So since I've got the distinct privilege of becoming the Minister for the National Disability Insurance Scheme, I pushed for a significant reset. I think we need to focus the NDIS as an investment in individuals and by extension our society. If it works as it was intended. One research paper has shown that the economic return on investment in early years is said to be $2.25 for every dollar spent.

And we are going to do further work. But looking at the benefits of the scheme, which has been a underutilised area of research and debate about the NDIS. You can always open the pages of the Financial Review and find out the cost of it, but there doesn't seem to be the same weight given to the value of it. I think perhaps the greatest return on investment is something we can't measure or at least measure simply, and that is the ability of people with disability to live a fulfilling life. 

Now you here and those online know better than most. The people seeking support for ADHD face long wait times and higher out-of-pocket costs. I want to assure you that the Albanese Government hears the ADHD community. We currently provide financial assistance for ADHD, diagnosis and treatment through the Medicare Benefits Schedule and Pharmaceutical Benefits Scheme, and because we encourage people seeking help for ADHD to speak to their GP in the first instance, we've tripled the bulk billing incentive to encourage GPS to provide services at no cost to the patient. We also fund primary health networks to plan and commission mental health and suicide prevention services at a regional level at low or no cost where appropriate, including clinical support and psychosocial supports. And the Australian Government also fully supports the Senate inquiry, assessment and support services for people with ADHD and its mission to determine what is needed for timely access to ADHD assessment, affordable treatment medication and psychosocial supports.

We are most keen for the inquiry to provide practical insights into how we put into practice the evidence based clinical guidelines. So I do congratulate all of you who worked on these guidelines and I acknowledge the funding supported by the previous government to be fair, to bring them to fruition. The range of experts involved had backgrounds ranging from psychiatry, paediatrics and psychology to allied health and research gives these guidelines, rigour and depth. You might be interested to know that as of the 31st of March this year, as far as ADHD and the NDIS is concerned, there were 4864 participants with ADHD, with more than half of those in the 7 to 14 age group. Diagnosis rates are 2 to 1 male to female. It could be because the comorbid conditions of ADHD and autism are male dominated or because of underdiagnoses of women and girls. Something you've been hearing about this morning and no doubt you will have plenty of views on this matter. But one thing is for sure, there's no doubt that we are seeing a massive increase, a veritable explosion of the number of children on the NDIS. And I must say at a human level it must be frustrating for people with ADHD or the parents of children with ADHD to have their condition dismissed as disobedience or just a fad or a trend and a very human level.

It must be deeply disempowering that if you're in the queue at the shopping at the local supermarket and you hear the useless, ignorant tutting of others who judge parents and children. I want to make it very clear that my personal view is that kids and parents are not the problem. It's that dumb thoughtlessness of others who seek to judge without putting themselves in your shoes. So I do support reframing the community debate and awareness and understanding. 

I think there are plenty of examples, for instance, where behaviour described in various historical figures fits with what we know of ADHD. Unlike my friend Dave Cowgill, I'm not anywhere near as learned in his area of endeavour. But I did do a history major in my arts degree, and I think history often provides a guide to the future. It's been suggested that the behaviour of Mozart, Lord Byron and even the Apostle Peter. But I'm very careful of biblical interpretation point to ADHD like traits. Shakespeare wrote Henry the eighth in 1613, and he spoke of one character's malady of attention. That character was an adult, not a naughty child. Now, we know that ADHD presents very real, sometimes debilitating problems to children and their families and to adults, at the same time, we are learning to appreciate that neurodivergent minds have much to offer.

We need to ensure that it’s possible for everyone to have the chance to contribute. Imagine if Ryan Gosling, an ADHDer, hadn't found an outlet in acting. I don't know who else could have played Ken better. 

The NDIS Review panel of experts. This is the review I spoke about, has released already a report entitled What We Have Heard. The summary of what this panel has learned so far shows many more young children entering the NDIS. And I think we expected when we were first setting up the scheme, I recognised there was always unmet need. But beyond that, perhaps the rate of number of children entering the NDIS was more than was I think initially predicted. Now of course this is due to a number of factors, not just unmet need. Could include higher than previously identified rates of disability amongst kids. And I also want to put to you today that I think that it represents a void of supports for kids with disability outside the NDIS. 

We've mainstreamed supports lacking. The NDIS has become, in many instance, the only life raft in the ocean, the only oasis in the desert, or perhaps just the only lottery ticket which delivers an outcome. This is not the way things should be. I completely understand parents wanting funding for their precious child so they can get the help they need. I can completely understand the committed and conscientious health professionals knowing what support is available for the NDIS, writing their reports to get the child that support in the absence of any others.

But this has resulted in the perverse incentive to have a child diagnosed with a particular condition to ensure entry to the NDIS. That report I was referring to, what we'd heard showed that the focus on diagnosis rather than support, needs the fact that early intervention is not always based on best practice and the real world. Lack of support for all children with disabilities in mainstream settings does in some way undermine the NDIS. So I would encourage you to go to the website, read the report, make some further submissions to our NDIS review panel as we get to the skinny end of its inquiry. Your input is incredibly valuable and valued. 

So I think it's worth revisiting where the NDIS started to understand where we want to go. After the 2007 November election, the Prime Minister, then Prime Minister, Mr. Rudd, made me the Junior Minister for Disabilities and I got to meet in the early days lots of pretty smart people and indeed our professor Bruce Bonyhady was one of the first I met. I encouraged him and his fellow disability advocate Helen Sykes to put a submission to the summit. The 2020 summit, which was held in 2008. Bruce and Helen co-authored a submission which grabbed the attention of delegates, me being one of them. It always helped to know what to expect was in the mail.

Bruce and Helen and their submission raised the prospect of the cost of caring for people with disabilities represents a very large unfunded liability which continues to grow significantly. I remember scribbling we had butchers paper. The Millennials won't know what that is. And we wrote, I remember writing social insurance scheme for the disabled, and then I remember making sure I took the butcher's paper down and I remember making sure it was put in the summary of proceedings. We need, we needed then a national system for Australians with significant and permanent disability. Following that 2020 summit, I set up a disability investment group of Australian business leaders who had lived experience of disability to undertake an initial feasibility study of the NDIS. The problem with disability up to that point was it was viewed to be a bottomless well and that whilst carers and people with disability were saints was just too much, could never be afforded. I didn't share that view. We managed to sponsor a Productivity Commission inquiry into new approaches to funding and a possible framework. I want to read you a quote from its report about the disability system at that time. The report said “This is a system marked by invisible deprivation and lost opportunities”. We would speak all around the country before the formation of the NDIS, people who experienced that deprivation and loss of opportunity. I believe that pre NDIS Australians with disability were second class Australians, not that they deserved to be, but that's how they were treated.

Pushed into the shadows with an uncertain future if they didn't have the love and support of their family. And then we established the NDIS and for all of its imperfections, the rest of the world looks at it and says, how on earth did Australia get to that point ahead of everyone else? As the universe has its perverse sense of humour, I've ended up now as the Minister for the NDIS ten years after it was established. I just want to state again the NDIS is here to stay because Australians with a disability deserve the opportunity for a fulfilling life and we need to make sure that every dollar in the scheme gets to the people for whom the scheme was designed. But there is much work to be done right now. The NDIS review will report in October. The Government will consider the recommendations. We'll keep making sure that the scheme is sustainable for a good management, a commitment to stopping waste and rorts. It will remain demand driven. We have an 8% target, not a cap. We believe that if the scheme is well run, that should give us the magnitude of its growth annually. We'll capitalize on our budget success in May of securing the largest new investment in the National Disability Insurance Agency. One of our key reforms were the $900 million over the next five years is to build the capability of the NDIA, the Safeguards Commission, the Department of Social Security.

We understand. I understand. I think that the challenge of ADHD and other developmental delays for kids in particular, but not just kids. We need to have an agency to better understand that better specialisation will save people explaining time and time again to different planners. The same things. And you wonder if they understand what's being exposed. We must improve the capability of the agency and we are doing that. We'll keep working with other levels of government and with community organisations to form a cohesive ecosystem of disability support. I think one of Christine's slides just reflected before I got up to speak. It's essentially the proposition that the proverbial village is what wraps around the vulnerable amongst us. This government will rely on the experts, on the evidence. Evidence based practices on the science and listening to people to get the best outcomes for Australians with disability. I thank you for your advocacy on ADHD, for the ADHD community. I encourage you to engage with the review. I look forward to some of the questions that I hope this gives you a sense that for us this. And ADHD is not someone else's issue and some other level of government or someone else's problem. It's a joint challenge which I think together we can improve. Thank you very much.