Autism health Roadmap Thursday, 22 August 2024
Presented by:
Chair:
- Amber Shuhyta
Speakers:
- Rebecca Randall
- Derek James
- Geraldine Robertson
- Melanie Heyworth
- Nick Lennox
- Sophie Davison
[The visuals during this webinar are of each speaker presenting in turn via video, with reference to the content of a PowerPoint presentation being played on screen]
Amber Shuhyta:
Okay. We have a number of people online with us now so we might start noting that there will be probably a few more people join us as the meeting gets along. Thank you for coming and welcome to this information webinar. This is for public consultation to introduce you interested members of the public to the National Roadmap to Improve the Health and Mental Health of Autistic People. We’ll refer to that during the webinar as the Autism Health Roadmap.
I’d like to start by acknowledging the traditional custodians across the country of all of the lands that people are joining from today in this meeting. I’m coming to you from beautiful Ngunnawal country here in Canberra and surrounds and I pay my respects to the traditional custodians and people and families who have connected to this region and areas. I’d like to extend that respect to any Aboriginal and Torres Strait Islander people who are joining us in the webinar today.
My name is Amber Shuhyta and I am Assistant Secretary in the Department of Health and Aged Care in the Allied Health and Service Integration Branch. I’m also the Chair of the Working Group which has led to the development of the Autism Health Roadmap. Today I will be joined by our Working Group Deputy Co-Chairs Dr Melanie Heyworth, Ms Geraldine Robertson and Professor Nick Lennox, as well as the Commonwealth Chief Psychiatrist Dr Sophie Davison. They will be presenting from their perspectives as contributors in the development of the Autism Health Roadmap.
We will answer questions after the presentation has finished. Our preferred method for asking questions is via the Q&A function in Microsoft Teams. For anyone who’s unable to ask questions via the Q&A function if time allows we’ll take verbal questions from people raising their hands. Sometimes it’s a bit difficult for us. As you may have heard the IT difficulties for us. We might not see your hand. So we will work as best as we can.
For those of you who find the Microsoft Teams chat function distracting you can close it. And if closed captions are useful for you these can be turned on using the three dots in your menu and selecting the live captions option. We’ll also be recording the webinar and the webinar will be hosted on the Department of Health and Aged Care’s website for others to watch at any time while the public consultation is open.
Finally we’ll be answering questions during the webinar but we would really love you to respond to the Autism Health Roadmap via the surveys. I think we might have a link to that posted up. Or by making a submission. Given that we might not have time to really hear from everybody today there is a public survey function available on the Department’s website and you’re also welcome to email us with a submission. So whilst we’ll be taking some comments, if you want your voice to be heard use those consultation mechanisms.
Before I get into the content I’ll explain how the webinar will run. We will cover providing information about how the Autism Health Roadmap was created. We’ll work through some of the content of the Roadmap. We’ll hear from autistic members of our Working Group as well as two senior medical practitioners about the importance of hearing from you and the broader sector.
So we might have some slides being put up on screen whilst I’m speaking at some point. And if you’re having trouble following the slides all of this information is on the Department’s website where there’s the consultation mechanisms for the Roadmap. So don’t worry if it’s a bit small on the screen.
The Autism Health Roadmap is an Australian Government strategy led by the Department of Health and Aged Care and it’s intended to provide national leadership to address the breadth of issues faced by autistic people in the healthcare system. It outlines actions to improve health and mental health outcomes for the growing population of autistic people in Australia.
This national leadership will complement work already being done or being done in the future through more specific or localised jurisdictional or industry autism strategies, plans, programs, agreements and initiatives.
In 2022 there were 290,900 autistic people in Australia which is an increase from 205,200 in 2018. In Australia autistic people suffer poorer health than the general population including greater risks of coexisting conditions and premature death. Studies consistently show a two to threefold increase in mortality rate in autistic people over that of the general population. In a study of Australian mortality data autistic people died at twice the rate of the general population and this is thought to be because of increased rates of coexisting physical and mental health conditions.
It’s important to note that the Autism Health Roadmap is also associated with the National Autism Strategy. The National Autism Strategy encompasses health and mental health aspects and priorities as well as priorities broader than health and mental health and it looks at key outcome areas of social inclusion, economic inclusion and diagnostic services and supports. You can find more information about these parts of the National Autism Strategy in the disability section of the Department of Social Services website.
So the Department of Health and Aged Care and the Department of Social Services are working together really closely to ensure the National Autism Strategy and the Autism Health Roadmap are closely aligned.
I’m going to talk now about the approach to the Roadmap development. We’ve developed the Roadmap in a multistage process. The project started in October 2022 when initial funding was given to explore and develop the Autism Health Roadmap. We established a working group, held the first meetings and did initial scoping work for the project including forming agreement with the Working Group on focus areas of the Roadmap and meaningful ways to engage in codesign. As you’ll hear during this presentation we’ve produced the Autism Health Roadmap in close collaboration with many autistic people and members of the autism sector. This has been done through the Autism Health Roadmap Working Group, through extensive codesign consultations with key groups and now finally with this public consultation process. I’ll talk more about the Working Group when we get to the next slide including who’s on it.
The next stage we ran a competitive process and selected Autism CRC as the successful organisation to deliver a codesign process on our behalf. This process was co-led by autistic facilitators and involved a large range of partner organisations. They engaged the community to discuss the health and mental health needs of autistic people and what we could include in the Roadmap to improve these issues. Mel Heyworth will talk about the codesign activities and what they found later on in this presentation.
Following the codesign process we used these findings and insights as well as insights from the working group to develop the outcomes and possible actions in our Roadmap. We’re now in the final stage of development and we’re hearing from you the public and following that we will work with the Working Group to finalise the Autism Health Roadmap and then there will be a process of seeking endorsement from the Minister of Health and Aged Care.
So now I’ll move into the Roadmap Working Group membership. Membership of the Working Group includes autistic individuals and representatives from stakeholder organisations. This includes advocacy bodies, relevant peak bodies, researchers, clinicians and representatives from the Commonwealth, state and territory health and disability agencies. Working Group Co-Chairs include two autistic members which is Mel and Geraldine who will be presenting today.
I’m now actually going to hand over to Geraldine and Mel to discuss some of the ways that autistic people have been involved in the Autism Health Roadmap development.
So I’ll hand over to you Geraldine. Thank you.
Geraldine Robertson:
[Visual of slide with text saying ‘Ms Geraldine Robertson’, ‘Autistic Deputy Co-chair, Autism Health Roadmap Working Group’, ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’]
Okay. Thank you Amber. So my name is Geraldine Robertson as introduced by Amber and I’m one of the Working Group Deputy Co-Chairs. So one of the first things we did in establishing the Working Group was setting the stage for how we wanted or knew that the group needed to proceed in order to be genuinely inclusive of autistic viewpoints and insights. So for example as a starting point we identified consistent areas of misunderstanding of autistic experiences by non‑autistic people and how this has led to the exclusion of autistic viewpoints and fractured communication between autistic and non-autistic people.
This resulted in autistic members of our group developing and presenting to our non-autistic members. We presented a series of professional learning sessions to assist them in building their understanding and capacity within our autistic space. Sessions included two areas of key importance. The autistic communication session which I ran highlighted that when autistic people and others from diverse backgrounds work together it’s important to have a common understanding of the communication differences shared by most autistic people. As was discussed at the session barriers to effective communication can include rote learned responses, rote learned responses being the same as active listening, processing differences and varying levels of awareness of context. Non-autistic members of the Working Group learned that inclusive research is about empowering autistic people to explain their communication experiences as different but equal. The Working Group would also ensure that reasonable adjustments would be made and regularly refined to support these communication differences and this has really happened.
Then we have the double empathy problem. This is a bi-directional lack of understanding or a bi‑directional lack of social insight experienced by both autistic people about non-autistic culture and communication and non-autistic people about autistic culture and communication. The session outlined that until now we’ve assumed that non-autistic empathy is superior or preferable to autistic empathy with autistic empathy being pathologized and stigmatised. Now Melanie who will be speaking in a minute and who delivered this session emphasised that empathy is a two way street with cross neuro type communication being essential to a cross cultural exchange and that every relationship is about teaching and learning and about modelling cultural respect and about expecting as much of yourself as you do of your autistic peer, and about meeting halfway and about mutual trust.
So before I hand over to Mel I’d really like to encourage autistic people and the community to take part in the consultation to provide feedback. There are three versions of the survey including an easy read version or you can email the team with a submission in a format that works for you. I’ll hand over now to Dr Mel Heyworth, one of the other Deputy Co-Chairs of the Working Group. Mel.
Melanie Heyworth:
Okay. I’m here. Hi everyone. Thanks Geraldine and Amber. So as Geraldine said my name is Mel Heyworth. I’m coming to you today from the unceded lands of the Birpai people and I’m another of the autistic Working Group Deputy Co-Chairs. That’s a mouthful.
So today I just want to talk to you a little bit about the codesign process and how we selected our codesigning facilitator. So the team at the Department worked with the autistic members of the Working Group to codevelop some principles and selection criteria so that we could procure appropriate facilitators for the codesign process, to undertake that national codesign engagement. So there were a number of criteria that we set that we thought were absolutely fundamental to codesign and they’re on the slide you can see now.
So inclusive sort of goes without saying, but we value the wisdom, the experiential expertise of the autistic community, we acknowledge the diversity of our autistic community, and also acknowledge the important role of families and carers and people who work with the community. So we knew that it needed to be an inclusive process of all of those members. It needed to be meaningful, so the process was meaningful, but the input, that effort that people made and gave to the codesign process, people needed to know that their input would be used in a way that was meaningful and helpful and would be reflected in the final Roadmap. So that seemed to be very important. And part of that of course is around transparency, so transparent, the process, and how people’s information and input would be used in the roadmap needed to be clear and understandable. There needed therefore to be integrity so that the processes used and how things were reported were appropriate and consistent.
Of course we need a strong methodology and I come from a research background so that seemed very important specifically. But the practices followed and the way that we reported and collated information needed to be informed by evidence and research. We wanted things to be solutions focused. So we wanted the insights that were gained through the design process to be brought together in a way that was solutions focused, not divisive and not just focusing on problems but focusing on solutions. Clearly there needed to be respect so that all people felt welcome and were treated with dignity and respect. And for that we needed trauma informed approaches that were safe and culturally responsive so people felt safe and supported and didn’t fear retribution for contributing to the process, and clearly group input wasn’t attributed to any individual without permission. And that there was trust. So the material shared by whoever was going to do this process and by group members throughout the process was treated confidentially and not discussed outside the group.
So that process and those principles led the Department of Health and Aged Care to engage an external expert organisation, the Autism Cooperative Research Centre, probably better known to most of us as the Autism CRC. And the Autism CRC designed, facilitated and reported on the codesign processes for the Autism Health Roadmap. So Autism CRC for those of you who don’t know is a national partnership of research organisations providing independent evidence for best practice in relation to autism across the lifespan and the diversity of the autistic spectrum.
So when we go to the next slide in order to achieve national coverage and to ensure that the consultations that went into the codesign included people from key priority populations, particularly populations who might not have had their voices heard in other consultations – I think anyone in the community knows there’s been a lot of consultations in the last little while so we wanted to make sure we’d heard from these key priority populations – Autism CRC engaged a network of well respected and positioned autism organisations to undertake many of the in person and online consultations and you can see those on the screen. And then there was a series of codesign activities. So it wasn’t just one thing. There was a whole number of codesign activities that were embedded as part of the codesign process. So the activities that the Autism CRC undertook as part of this were convening a stakeholder reference group which provided strategic advice throughout the codesign and consultation process, their maximised knowledge from existing data reporting on the healthcare experiences of autistic Australians, which included a very detailed analysis of several existing national datasets containing information from over 6,500 autistic people, families, carers and professionals.
There was also focus groups and interviews with those groups that we hadn’t yet heard from or we felt we needed to understand better. So these included in-depth focus groups and interviews with 107 people and we engaged with a further 159 stakeholders in the codesign and community engagement activities which included workshops, focus groups and interviews.
Then there was the Reimagining Healthcare Services codesign workshops which had 48 autistic adults, parents of autistic children and the stakeholder reference groups. And then finally there was a National Health and Mental Health Community Codesign Summit which was a one day physical event where autistic people, their families and carers, health, mental health and allied health practitioners, community organisations all came together to codesign solutions, actionable recommendations that could go into the Roadmap.
So thanks everyone. I will hand back to Amber now. That was my little piece on codesign. But as Geraldine said I encourage you to get involved in the consultation in any way that works for you. It’s so important that we hear autistic people’s voices through the consultation, through the public consultation. So if you have the spoons please do provide some feedback on the Roadmap so that we can get a diversity of people.
Amber Shuhyta:
I’m still on mute. Thank you Geraldine. I’m taking one for the cause or I’m going to be the first one who’s on mute that someone had to say ‘Get off mute’.
Before I now hand over to Nick and Sophie I’d like to give you a high level overview of topics that we cover in the Autism Health Roadmap. All of these have been developed in partnership with the Working Group and derived from the codesign process that you’ve heard about just then. So we’ll start with the focus areas. The Autism Health Roadmap is organised into six focus areas. I’ll take you through some of the major points raised in each of them so you can understand our scope and what is covered. Within each focus area there are outcomes and actions. Outcomes are the changes we would want to see in the ten year span of the Autism Health Roadmap and actions are the specific pieces of work that we will do to achieve these outcomes. The focus areas and the desired outcomes have been developed carefully with the Working Group during codesign, and they are well defined at a high level and are roughly what will be included in the final version of the Autism Health Roadmap and you can see that when you go onto our web consultation link.
In the consultation we’re asking you for comment primarily on the actions. There are quite a few possible actions listed in the draft document so I won’t be able to go through each of them today. However they are highlighted in the draft and are also listed on the online survey for you to respond to.
So on this slide that’s up on the screen we have the first three focus areas.
A is improving support for autistic people, their families and carers in health and mental health services. Key areas that this broad focus area covers are improving support for autistic people in a range of ways such as ensuring autistic people are accommodated in health and mental health services, supported to participate in their care and that financial and administrative barriers are reduced. Examples of possible actions in the draft include exploring new funding approaches to improve affordability and accessibility of health and mental health professionals, share tools and resources that make sure autistic people are supported to make their own health decisions, review Australian Government health and mental health consumer information to ensure autistic people’s needs and preferences are included, and develop information for autistic people about when to see a doctor, what service navigation is and how pain is felt differently by many autistic people.
Focus area B is improving the quality, safety and availability of autism affirming health and mental healthcare across their lifespan. In this focus area we cover ways to improve the quality, safety and availability of autism affirming health and mental healthcare across the lifespan in a range of ways such as ensuring that autistic people can access healthcare which is autistic affirming and welcoming, health services reduce all restrictive practices and eliminate all harmful restrictive practices used with autistic people including mechanical restraint, physical restraint and chemical restraint. Alternative interventions are available and used as a routine practice. Examples of possible actions in the draft include codesigning a framework for autism affirming care. This would be a guide and a list of competencies for working specifically with autistic people including human-centred approaches like neurodiversity affirming care, trauma informed care etcetera. Reviewing current health and mental health programs for autistic people, exploring ways for general practitioners to spend more time with autistic patients and ensuring autistic people’s needs are clearly included in future safety and quality health standards and guidance.
Focus area C is building better connections between health, mental health and other service sectors including the National Disability Insurance Scheme or NDIS. This is an important area to get right so that health and other services are properly joined up. Outcomes include trying to ensure that health and mental health services are able to support autistic people in transitions between services, making sure that autistic people, families and carers and autism organisations are provided with information that supports them to understand how services work. Examples of actions in the draft include developing an autism passport that assists autistic people to share information about their wants and needs with health services. This passport would be optional but with the goal of supporting autistic people when they want to use it. Another action might be to establish communities of practice for health professionals with support from autistic people to improve coordination of health, mental health, suicide prevention and mainstream services for autistic people, and to consider that autistic and autism proficient service navigators could be included in health and mental health services.
There’s a few actions there and we’ll move to the next slide which covers the last three focus areas, D, E and F. Focus area D is improving autism education and training for health and disability professionals. As I’m sure you know there’s a lot to do in this area and we’ve already heard a lot of ideas. Some of the key things which have come to us so far are ensuring that codesigned and codelivered education and training is accessible to all health professionals, making sure that autistic people are supported to train and thrive as health professionals as well. Examples of actions in the draft include developing resources and services for health and mental health practitioners so they can more effectively support autistic patients, ensure that competencies are identified in the autism affirming framework and that this is included in training materials for all levels of health education. Improving how all Government departments who work with autistic people do so to improve their health and mental health is also an action.
Focus area E. This is about research and data on health and mental health outcomes of autistic people, their families and carers. This is another major area that we are really keen to see change in. Key outcomes which we’re proposing include collecting and reporting on data which shows autistic people’s use of the health system and encouraging research which focuses on topics that improve the health and mental health of autistic people in research. Examples of actions include prioritising research that identifies ways to improve autistic people’s health and mental health, using data and reporting reforms to develop a consistent set of autism identifiers in Government data collection. Developing evidence based standards of pain measurement for autistic people in diverse settings is also a possible action.
Focus area F, our last one. This is the final focus area in the Autism Health Roadmap and it covers arrangements for oversight, monitoring and implementation. Essentially this is about making sure the Autism Health Roadmap doesn’t just become a piece of paper on the shelf. We’re looking at outcomes that make sure systems are put in place to hold organisations to account, ensuring that stakeholders are able to get involved in this process as well. Examples of possible actions in the draft Roadmap include establishing a governance group including autistic members to monitor the work to improve the health and mental health of autistic people, and that Government reports annually on how the Autism Health Roadmap is being delivered and what is being achieved.
That’s a lot of information. All of this information is on our website that the consultation survey is. So you can be refreshed from the very high level context that I’ve just given you now.
I’m now going to hand over to Professor Nick Lennox and Nick is one of the Department’s senior medical advisors. He’s a general practitioner and experienced in providing care to autistic people and people with intellectual disability. Over to you Nick.
Nick Lennox:
[Visual of slide with text saying ‘Professor Nick Lennox’, ‘Senior Medical Advisor and Deputy Co-chair, Autism Health Roadmap Working Group’, ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’]
Thank you Amber. I was the head of the University Centre that the goal of which was to improve the health of people with intellectual and developmental disability. Over the course of 30 years I had this role and we did teaching research and clinical work. And a lot of the work was involved with autistic people. And having done this over many years I think it’s really important to acknowledge that there’s an evolving understanding of autism over that period of time and our understanding of the impacts for autistic people and health practitioners actually continues to change. My other observation would be there is actually a significant and increasing interest in autism amongst my medical colleagues and particularly I note that the Centre that I did lead has run a number of sessions on autism for the annual College of Psychiatry meetings and often they’ve been packed out. They haven’t had space because there has been such an interest in autism and that’s something that’s increased over time.
From a medical practitioner’s point of view something which makes autism interesting is there’s a lot of uncertainty about whose responsibility it is and what is the best health setting for autistic people. Because of this and other reasons it’s important that we hear from health practitioners as part of the consultation. We do want to acknowledge that there’s a lot of problems facing the autistic community and health practitioners who care for autistic people and they are in fact the same and very similar to other challenges in the healthcare system. For example during the codesign process we heard from people in rural and regional areas about the lack of services in these areas.
In addition it’s also important to acknowledge that there is a lot of other work happening to address the needs of people with disability. We are working across the Australian Government to ensure the autism health program is connected to the other related health and disability reforms currently underway and there is quite a significant list of these and a huge body of work being undertaken by the Department. There’s broader work planning as part of the National Autism Strategy. There’s the reforms of the National Disability Insurance Scheme. There’s work underway in response to the Disability Royal Commission. There’s the Strengthening Medicare improvements which I think are really important for autistic people and many other people. There’s better support for the first 2,000 days of child development and also a number of other health activities being undertaken by the Department.
It's really, really important and I can’t emphasise how important this is for health practitioners to discuss what they think will work, because we need to find workable and possible solutions in the healthcare system and the practitioners are the people that are dealing with it every day. So please contribute to the consultation via the survey or by emailing the team so that we can ensure that the work that comes out of this is practical and realistic. Now I’d like to hand over to Sophie Davison, the Department’s Chief Psychiatrist. Sophie.
Sophie Davison:
[Visual of slide with text saying ‘Dr Sophie Davison’, ‘Commonwealth Chief Psychiatrist’, ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’]
Hello everybody. Thank you for that. I’m Sophie Davison. I’m the Commonwealth Chief Psychiatrist and I’ve been working in mental health for many years and I’m really delighted that this is a health and mental health Roadmap and that one of the guiding principles of the Roadmap is recognising that mental health is a really key aspect of general health and wellbeing. And there are a number of reasons why it’s really important that mental health is considered as a central issue in this roadmap not least because autistic people are more at risk of experiences that contribute to poor mental health. So research shows that they’re more at risk of being bullied or of experiencing discrimination, isolation as well as higher rates of abuse and domestic violence. And the research also shows that autistic people have higher rates of all mental health disorders compared to the general population. So that includes things like anxiety, depression, psychosis, eating disorders, substance use, obsessive compulsive and related disorders.
And as you heard earlier autistic people also have a higher mortality rate and autistic people are up to three times more likely to die by suicide than the general population and also at greater risk of self-harm behaviours. So this is why it’s so important that all health and mental health services actually provide accessible, high quality mental health care to autistic people who have co‑occurring mental health problems and that those services make the necessary adjustments to meet their need and have staff that are skilled and confident in providing that care and support. And sadly we’ve heard that there are still many barriers although we heard from Nick that I think there is an increasing interest in learning about autism but still we hear all too often that people are told by mental health services things like ‘We don’t do autism’ or it’s not appropriate for autistic people to access that particular mental health service. And this is really not good. And it usually means that a service isn’t set up well enough to meet the mental health needs of autistic people who have mental health co-occurring problems.
And I think there’s a number of things that contribute to these barriers. One is that the environment and the processes are really not designed to meet the communication and the sensory needs of autistic people. There’s also something that’s sometimes called diagnostic overshadowing. It’s a rather technical way of basically saying that health professionals misunderstand the way that an autistic person is presenting with their distress and so they incorrectly attribute the behaviour, the symptoms and the distress to the autism diagnosis and they don’t recognise that that person has a co-existing mental health issue. And this is often related to the fact that mental health professionals don’t have the necessary skills and confidence to understand and meet the needs of people with autism and this needs to be urgently addressed. And so autism specific education is often absent from professional courses and that can negatively impact the experience that autistic people have with healthcare professionals.
Before I move onto more positive notes we’re also very aware that difficulty accessing psychologists and psychiatrists acutely impacts how people get a diagnosis and then get care particularly for adults, and this is a really multifaceted and challenging problem and one that we’re looking into as part of the Roadmap.
So on a more positive note as you’ve heard the Roadmap has taken a very solutions focused approach and it’s really helpful because it lays out clearly what the future could look like and practical steps to get there. And that’s why it’s really important that we hear from autistic people, from their families, carers and supporters and also from health and mental health professionals so we can really understand how to put that into practice so it isn’t a document on a shelf but it’s actually hear what works and what can be implemented in a practical way which will then improve the access to quality mental health services and support for autistic people and improve the training and education of mental health professionals. So please as I think we’ve all asked you please do contribute to the public consultation and share it with your networks. Thank you very much. And I think I’m handing back to Amber.
Amber Shuhyta:
Thank you Sophie.
I think we’re a little bit slow in our transitions between speakers because we’re still working out all of this tech. It’s all very new to us. Thank you so much to everyone who was able to present today. We really hope that the context that you’ve received from a number of our speakers will help make sense of a little bit of the things that you’re seeing online. There was a question around will people be offered support to provide input to the consultation. I think we’ve tried to approach that in how we have tried to make the information easy read and accessible online, having webinars like this that help explain some of the things that you’re seeing and we will also put up in the chat if it hasn’t already been there some support lines if you’re needing that support. If you have unique needs about being able to contribute please email the Department and we will look and see how we can support that. But we are looking at what is needed across the spectrum and we have a very broad kind of public approach to this at the moment.
So now we will see if we can answer some of the questions, some of the other questions in the chat. Once these questions are answered if we get through them all and if time allows we’ll take verbal questions if people put their hands up. But we will focus on what people have put in the chat at the moment. So I think I might start with just before we get into specifics there was someone who asked if the comments stated in the webinar count as official feedback. I want to assure you that everything that is put in this chat is being absorbed and recorded by our team drafting the Roadmap. So if you’ve put it in the chat take it as heard. We might not be able to comment specifically on everything that has been put in the chat so far but that has come to us officially through this chat process. Feel free to duplicate those questions or advice on the online consultation survey but we’re happy to take those comments that you’ve put in the chat today.
Another question was the actions are only listed as possible actions and I’ve referred to them as possible actions. You will see that in the draft that they are listed as possible actions. And you’re absolutely right that definitive actions can’t be set at this stage in the process. We’re still consulting on this plan. We need to go through an endorsement process and work with Ministers around what that finalised Roadmap will be. So yes they’re listed as possible actions. And I think that answers that question. Let me look at the other questions.
Derek James:
There are a few comments in there around service providers.
Amber Shuhyta:
I’m going to let my colleague who’s sitting next to me come and join the screen.
Derek James:
Hey everyone. I’m Derek James. I’m a Director of Psychosocial and Complex Mental Health in the Department. There are a few comments in there around service providers and the experience that you’ve had in contacting them, whether that’s phone service providers or whether that’s through other means. Thank you so much for this feedback. It really does align with what we’ve been hearing throughout the process of the Roadmap. There’s a really important element around making sure that all what we call mainstream providers are able to provide quality care to the autistic community. So we certainly have some potential actions in the Roadmap around that but that’s something that we’ll be considering going forward.
There was also another question from someone about the number of sessions under Better Access and that that needs to be raised from ten per year. So the Government recently released its response to the Better Access evaluation. It provides some reasoning for why ten sessions has been retained. I’ve put the full response in response to that question and page 14 of the response is specifically looking for an answer on that one.
Let’s see. What other questions have we got?
Amber Shuhyta:
We have a comment there in terms of acknowledging that mental health is considered throughout but is there a reason why mental health isn’t incorporated into the shorthand title? I think we wanted to shorten the title. If we had health and mental health it wouldn’t necessarily be that short and that health encompasses mental health. So it’s not trying to not include mental health but we did try and look for a shorter way to write the Roadmap or speak about it without having to say the full name. So we do consider that health incorporates mental health. But it’s a really great comment and it does amplify why we wanted the whole title to be about improving health and mental health of autistic people. I hope that clarifies things.
Derek James:
I can see there’s a question.
Q: Are there any terms of reference for the submission or can it be a freestyle submission, ie telling my story like in the Disability Royal Commission?
Amber Shuhyta:
Online there’s a survey format. So it goes through here is the particular focus area, here is the content we have around outcomes and actions, and there’s a few areas where you can rate it how important is this to me? Have we missed anything? Are there other priorities that we should have included? So there’s a bit of a structure in how the online consultation survey works you through some feedback but there are also free text spaces. So if that’s easier for you please use the free text feedback. It’s easier for us to compile the themes of feedback when people are using the kind of more structured answers but I recognise that that doesn’t meet the needs of everybody and what you want to say so please use the free text boxes. If you do want to just email a submission that is fine as well. But there’s no terms of reference about what it should look like. It could be one sentence. It could be a few words or it could be a few pages of what you want to say. But we do want to make this easy for you and we’ve tried to kind of step through it so it’s a little bit easier than you having to write a big essay on this. We acknowledge that people run busy lives and we don’t want this to be an impost on anybody. So we’ve tried to make it as easy and accessible as possible on the online survey.
We have a comment there about:
Q: Working for public mental health services and have firsthand seen comments along the lines of ‘We don’t do autism’ and even executive staff stating mental health isn’t commissioned to deliver services to autistic individuals. How does the Working Group and Mental Health Commission anticipate addressing the commission of public mental health services to better align with the Roadmap and upskill staff?
I’m wondering if Sophie or you would like to answer this. Sophie maybe.
Sophie Davison:
Can you hear me now? Yep. Okay. I think that what we – I’m trying to get my thoughts clear. I think what’s needed is what we call a stepped approach. So it’s really important that all services are able to meet the needs of an autistic person who has a co-occurring mental health problem. And then there may be a need for some more specialist input in some cases in which case they need access to somebody who has more sort of expertise in autism and co-occurring problems. And unfortunately very few states at the moment have access to that sort of specialist expertise particularly in mental health. But I think that’s what we should be working towards. I don’t know if that answers the question. But I think we’ve got to improve mainstream services as well as having access to that more specialist input where it’s needed.
Amber Shuhyta:
Yes. Thank you Sophie. And just in validating the comment there in the chat that is that experience that we have heard. What you’ve seen firsthand is definitely what we’ve heard. So trying to address that will happen through this roadmap process. You don’t have a chair Rebecca. You’re here without a chair.
Rebecca Randall:
We do have chairs in the public service. I promise everyone. I was just being cheeky and young. Hi everyone. By way of introduction my name’s Rebecca Randall and I’m the Assistant Director leading the Roadmap in Amber’s team. I’ve just come on to answer one of the questions from the chat which asks:
Q: As Autism Tasmania has been defunded how do Tasmanians participate?
This person is in Tasmania and only heard about this webinar yesterday because they’re subscribed to the Autism CRC newsletter. I’m very grateful for the Autism CRC newsletter. And yes we were very sad to hear about Autism Tasmania’s defunding. Up until now which was really up until including the drafting of the Roadmap there has been a representative from actually Autism Tasmania, the then CEO Donna Blanchard who some in the community might know. She was a representative on the Working Group on behalf of the Autism Advisory Board of Australia. We do also have a Tasmanian state and territory Working Group representative and we’ll continue to explore options to make sure Tasmania is still represented. But there are representatives from state and territory Health Departments or Social Services Department, each Government nomination to the right Department, noting that different states have different organisations. And so we are partnering with the states and territories as applicable to support involvement across Australia. I’m going to disappear again now.
Amber Shuhyta:
Thank you Rebecca. I just wanted to also just acknowledge that it’s really hard to – in different focus processes we’re never going to be able to reach everyone hence why we’re trying to put out public consultations and ways for people to engage through different mechanisms. So online we will make a point given your comment to see if we can circulate the consultation link and survey link to our South Australian counterparts to send that more broadly out into the sector and so that we make sure people in Tasmania are hearing about this. We would love for people all around Australia to have a voice in this process.
The next question that is popping up on screen for me is:
Q: People with intellectual disability and an unmet health need have access to specialist services in health. Why is this not the case for people with autism and how can we ensure people with autism can have specialist intervention when needed? Mainstream services are not always fit for purpose for people who are neurodiverse.
I am going to throw to our specialist Nick Lennox on the line here to answer that question.
Nick Lennox:
Okay. Thank you. I was looking at that question. The question was from somebody in New South Wales where indeed because of investment by the State Government there now probably about five to eight years ago there is multidisciplinary teams in not all parts of New South Wales but in some parts of New South Wales. That is actually quite unique in the adult space. That does not exist in other states or there is just one team possibly. So there’s the team that I headed at the University of Queensland. And so I would love to see that across Australia. That’s true. So that’s why it appears for New South Wales that’s the case but in fact it’s not.
I mean the point about why doesn’t this exist in autism, I mean this is why we need your input into the questionnaires. Tell us what you think is needed and add to that voice that says this is what I think would really help in this space. That’s the best way I can answer that Amber.
Amber Shuhyta:
Thank you. Yes you’re exactly right Nick. We know that these services don’t exist and so that’s why we’re putting together a Roadmap, seeing what our priorities are and what we can implement into the future.
I think we have a – was there a question that you were going to take there? Did I see you highlight that? Did you want to roll your chair over and address that comment?
Derek James:
So this is a question about being disappointed that helplines and crisis services aren’t covered such as Lifeline because they offer such poor experiences to autistic people and often they push you to just call Lifeline. I think certainly Lifeline and crisis services are within scope of the Roadmap. They certainly fall under the mental health sort of responses. And so if we’re looking at ensuring that all services are capable of providing quality supports to autistic people then they won’t be immune from that. But certainly I can see that there’s quite a number of comments about different quite negative experiences with some of those call centres so I’ll be sure to pass each and every one of those on to the team that commissions those services so that they’re aware.
Another question.
Q: How can we make mental health advocacy services more accessible for folks who are admitted to a mental health unit. For example a person with communication difficulties needs someone to be a spokesperson but the advocacy service wants the consumer to speak directly with them.
Sophie you might have a bit more experience in this space.
Sophie Davison:
Yes. I’m just trying to understand the question. I think having access to mental health advocacy is very, very important and there are different arrangements in different states because often under legislation people have to have access to mental health advocacy. But I think you’re right. It’s really important that there’s access to the advocacy but also the advocates actually understand the communication and the sensory needs of autistic people so that they can communicate well with them and then help translate to the health services. I think as Nick said we’d really, really value practical advice and consultations and your views about how to get that working better and how that could look in practice on the ground.
Amber Shuhyta:
Thank you Sophie. Yes. Definitely we’ll take that as a suggestion to look at how we can address in this Roadmap.
Derek James:
Similarly there’s a comment there around Headspace also states that it provides services to autistic individuals. Another one that I’ll follow up with our youth mental health section. There’s another comment there.
Q: Would it be possible to use non-mainstream online forums such as Discord or similar to reach hard to reach young people who may not use proprietary software?
Rebecca Randall:
Hi. Rebecca coming on again. I wasn’t sure when we saw this if that was in relation to the consultation itself or health services. In case it is in relation to the consultation itself unfortunately as much as all of us in the room and most public servants are users of social media and other forums in our personal capacity it is something we acknowledge that the Government is not great at doing and that is something we would really encourage members of the community to share the news about the consultation and about the Roadmap more broadly. Unfortunately the Department being a large and cumbersome organisation as Government is at times doesn’t have the capacity to publicise our consultation within that.
If that is more about other health service use I would encourage you to put those comments in the survey or through consultations or through the consultation such as emailing me or my team. And that is something we can definitely look into whether or not it’s possible to take action to ensure that health services are reaching people where they are at.
Amber Shuhyta:
Do we have another one that is sticking out to us?
Derek James:
There’s a question around social workers and psychotherapists not being a protected title and the damage that that can potentially cause for neurodiverse and vulnerable people.
Sophie do you know the sort of requirements around social workers and psychotherapists?
Amber Shuhyta:
I think I might be able to answer that as well Sophie. I think this is about particularly unregistered professions. A separate piece of work to the Autism Roadmap is the National Allied Health Workforce Strategy and we are looking at exactly this, a review of where particular professions’ workforce pressures are but also what standardisation looks in terms of a registration and regulation around those practices. So thank you for that comment. I might then take that to consider in kind of a parallel process on our Allied Health Workforce Strategy.
Rebecca Randall:
And unfortunately you’ve come up as anonymous so we can’t get in touch after to provide details but if you are still listening and if you would like direct details and a link to that consultation that Amber mentioned please email the team. Our email is on the website that you would have registered for the webinar at and we’d be more than happy to send you the details so that you can contribute to that parallel process directly. I’m just going to grab one that has actually come up in the general chat noting that people are using whatever mechanism they feel comfortable. Desiree Moon has asked how soon will today’s information session be available on our website? Desiree as soon as we can. I would say my team is very, very small so give us a couple of days but I would hope certainly within a week. And Desiree I know you’ve assisted us with the Working Group so happy to make sure that we send you a direct link to the recording when it’s published. Kelly or I will be in touch when it is up on our website.
So we’ve got another question.
Q: Will there be inclusion in the Roadmap for very complex cases for example children and young people in out of home care settings etcetera?
Nick I know this is an area of interest of yours so I’ll let you speak. But also I guess just to answer from a policy point of view, yes we have considered people in out of home care etcetera. I’m away from my computer so I don’t know if one of my team can help Mel or Geraldine pop up on the line. But I know Mel who was involved in doing the codesign consultations worked quite hard to make sure that children in out of home care and their families and parents were considered. Unfortunately there were limitations to how the Autism CRC could consult with those groups due to both the amount of time that we had to develop the roadmap and also the ethical complexities regarding that. But I’ll hand over to Mel or Nick because I know this is an issue both thought a lot about, if either of you wanted to contribute.
Nick Lennox:
I can’t add too much to what you already said Rebecca. It clearly is a major issue and it is in the brief that Autism CRC picked that up and a number of us particularly people with high and complex needs, it was a major concern for us, and co-occurring intellectual disability. And I know that the medical clinicians and other clinicians in the space would see this as a really important population and that was picked up in the documentation we’ve got. Mel do you want to make a comment on it?
Melanie Heyworth:
I’m going to cop out and say no that pretty much covers everything that I would have said there. Yes. It was noted. We tried our best to engage where we could but there are limitations. And a lot of that was time limitation as well I think. So it was a very quick process. The codesign process was swift and so that didn’t leave sort of lots of time to develop the kind of trust relationships that sometimes need to occur for deep sharing within particularly vulnerable unmarginalized populations I think. So I think that is a limitation but it’s certainly been noted as such.
Amber Shuhyta:
Thank you Mel and Nick. I see another question that’s come up.
Q: Does the Roadmap cover the health and mental health of autistic people who sustain an injury at work and need assistance to navigate the WorkCover arena?
So great question. Given that you’ve left that comment there we’re going to talk with our colleagues in WorkSafe Australia and we will try and sus out the scope of mental health and health services in the arena of return to work and work rehabilitation, health and mental health services. But at the moment it’s not fully articulated in the Roadmap itself. We do make very broad reaching statements about what we want to do in health and mental health services. We actually haven’t defined in the Roadmap what is a health and mental health service. So in view of that those services potentially then would be in scope but we are working across departments to look at where are some community mental health services that don’t necessarily fall under the funding and commissioning of the Department of Health. Could be through Department of Social Services. It could be through Education. It could be through Department of Veteran Affairs. And also being prompted by your comment we’ll look at what might be covered under WorkSafe Australia. Thank you for that.
And I can see another similar comment around counselling services in universities and TAFEs and are they covered. And so as well as consulting with the public we’re also kind of working and engaging with other departments. So we’ll look to try and flesh out that more definitive scope in the Roadmap for everybody in terms of what this is covering and what’s in the scope and out of scope. But they’re great suggestions. Health and mental health services are broader than just what is commissioned by the Department of Health.
There’s a comment in the chat by Emily.
Q: Neurodiversity affirming psychology has become a title for practices that are often used for marketing. Is there anything in the Roadmap to address this?
I’m going to hand to Rebecca. Here she comes again.
Rebecca Randall:
Hi everyone. Emily great question and one that has been discussed fairly extensively in the Working Group as we’ve developed. Mel I’ll give the Departmental answer but you are on screen. Please jump in if you feel comfortable. So Emily this is a key concern that was raised through the codesign process and has been raised by the Working Group. I think it’s in the introduction to the Roadmap before we get in the actions. It’s a section discussing the idea of autism affirming care. This is because as we started these discussions and as the Working Group discussed it we realised that there is no set understanding across the community and particularly within practitioners of what neurodiversity affirming care is. The Working Group advised us – and this was across both practitioners and autistic people – talking about how we can make sure that it’s not just a buzz word, that it actually means something, so that people like yourselves perhaps when you go to a practitioner you know that you are getting some form of standardised safe and recognised care beyond what every psychologist is required to do through AHPRA etcetera. So that is a fairly large project but one that should it be an action in the final Roadmap – for now of course it’s only a possible action but it is one that we would be looking to explore with a view to addressing that. Mel please unmute yourself if you want to add anything.
Melanie Heyworth:
I keep on feeling like I’m saying not especially. I would just say this concept of neurodiversity affirming, I would totally agree. It’s often used, very often not understood or practiced in a way that is in fact affirming. And I suppose I’m talking to my community here, my autistic community. You’ll notice if you do go to the public consultation, you do see the draft Roadmap, we’ve deliberately chosen autistic affirming because this is a Roadmap for autistic people. So we can’t address every neurodivergence in a framework of practice because that’s not the Roadmap’s focus. The Roadmap focus is autism. So we chose deliberately autistic affirming care because that’s what we want. We want people that we can trust when we go and we know that they are bound or have some sort of framework that they get autism, they’ve had training in autism, that that training has been informed by autistic people, perhaps co-delivered by autistic people. So they might have actually met an autistic person that’s not you in the room as a patient. So this is the part I think we’re quite excited about because it’s something that might make a tangible difference to our lives. So there are the moments of quite deep passion where I think this could be really big for us. So please go and have a look. Again I’m just going to say go and have a look at the draft Roadmap because it is there as an autistic affirming framework of care that would be led by the autistic community so that it’s what we need for our care to be affirming of us as people. So ‘woo’ to that. That was very professional. So you can tell that I’m not part of the Department.
Rebecca Randall:
I will just say before I answer the next question that Mel and Geraldine might not be part of the Department, and they’re not. They have been brought on as independent advisors. But as the Department we desperately and really, really recognise their genuine contribution over – it’s really been a year and a half now. And so just to make a really public thank you to them as our Co‑Chairs and also the rest of our Working Group. About a quarter of our Working Group members are autistic and Mel and Geraldine as the more public faces particularly on the webinar today have done an amazing job and really partnered with us to make sure the autistic voice is central. So just a quick moment of thanks for Mel and Geraldine in particular but all of our autistic contributors.
The question that I’m going to answer now is one again from the meeting chat. But Sylvia has asked:
Q: Has there been any focus on older autistic people and autistic people in aged care?
We have attempted to as much as possible. Again if I go back to my answer around children in out of home care there were very similar challenges in terms of limitations of accessing people who live in aged care. But I know Geraldine – and I won’t put Geraldine on the spot but Geraldine do unmute yourself if you would like to contribute to this. Geraldine in particular has been a fierce advocate for considering the needs of older autistic Australians and we’ve heard a lot including through the Autism CRC codesign process about the needs of how for example aged care facilities can be a very challenging place for autistic people. And there are no specific draft actions which speak to it specifically however there are quite a few that if and when Government authorises us to implement the Roadmap we’ll have implications for the aged care sector and we would definitely be considering those actively.
Geraldine Robertson:
I would agree with that Rebecca. I’ve gone through the document to make sure that it’s included. I don’t know. Implication sounds a little casual but it slots in. Yeah.
Rebecca Randall:
Thank you Geraldine.
Amber Shuhyta:
Thanks Geraldine. I’m aware that we are getting close to our 3:30 mark and I just wanted to amplify some of the comments that were in the chat as well. They weren’t really questions but I just wanted to acknowledge that we’re taking this on board. Daniel has said actually make sure autistic people are informed of their healthcare rights and how to make a complaint and which agency to escalate to. I think further down in the chat Daniel you’ve talked about needing clear complaint processes and looking at what can be made mandatory. So thank you for them.
And thank you for your comments and the insight that you’ve said around healthcare professionals not – I’m assuming you’ve meant healthcare professionals, in terms of they, don’t understand the injustice we face and sometimes when we just want to vent we’re suffering or we’re pushed to the self-help model. So thank you for that comment. I think that’s good for us to take that on board when we think about our counselling crisis supports.
Let’s see if there’s other comments. Just maybe one more before we finish. Anything – if anybody wants to jump in. I’m just reading them as we go.
Nick Lennox:
Amber I can jump in.
Amber Shuhyta:
Go for it Nick.
Nick Lennox:
There was a question about transition in university settings. And in fact that was one of the drivers for the development of the Autism CRC. Now I can’t answer whether it’s under what we’ve got there but certainly I’d encourage the person to raise this because indeed all periods of transition and into the university sector was because it was considered a major issue. And my experience of the university sector having been part of it or still part of it is there has been some response. But I can’t say exactly what the detail of that response is in terms of encouraging inclusion. So it is an issue that has been raised and we’re talking about dating back about ten years when the Autism CRC was first established.
I mean the other thing is the adult care stuff into the elderly population. This has been an area that’s been neglected for years and I think that’s been widely acknowledged. Research in the autism area has largely focused on childhood and not on adulthood. And I’m talking largely, like over 90%, well over 90%. So we’re aware of the need for looking at and deeper understanding of the adult situation and also the times of transition at actually any time really, from childhood into adulthood and beyond.
Amber Shuhyta:
Thanks Nick. One question that’s sticking out to me there is from anonymous.
Q: There are mental health issues with autism associated with stigma associated with this label. Will the Roadmap help professionals to teach others that autism is a different ability rather than a disability so that this filters down to the community?
And I think that yes this is about getting more information and understanding in health and mental health services and practitioners and the sector, really getting that understanding of what it is, not always a disability. It is an identity, it is different neurotype. We are really looking at that autism affirming framework to really articulate some of these things that you’ve raised really nicely there in terms of trying to break down stigma is a big part of what this is trying to do. Having the conversation, doing the training, looking at the capabilities, looking at the accessibility of services and really trying to improve on the access barriers because of stigma, because of lack of understanding, because of lack of education around this issue. So thank you for raising that. I can see Rebecca’s rolled into screen so she might have something to add.
Rebecca Randall:
I have. I did just want to also commend the work of the National Autism Strategy as part of the stigma work. So the National Autism Strategy, Amber touched on it a little bit. Just to give a touch of further background it is currently being developed by the Department of Social Services. It’s probably about three months timewise ahead of us. So they’ve already done their public consultation and are working on taking the community’s amazing feedback. But I know even the draft version of that that was circulated for comment did include a lot of really big scale thinking about anti-stigma at a community level. And so while Amber’s very, very wonderfully articulated the health and mental health service aspects which are very important, do be aware that even though we’ve only briefly touched on it today there is a lot of additional work going on that covers a lot of areas such as education, stigma, workforce, and we are continuing to work really closely with the Department of Social Services to make sure we’re not creating more challenges or more barriers, that we’re actually doing it in sync together.
Amber Shuhyta:
Thank you everyone and thank you for all the people in the room and on screen for helping out with questions and the presentation today. I don’t think we’ve got time to go into the rest of the questions here however please take on board that we’ve got your questions. If it’s clear who’s said it we will have your contact details from having registered for the webinar so we’ll try and get back to you. Or leave it as anonymous. That’s fine. Just I want to reassure you that having asked those questions or made that comment that is then taken on board by us in developing the draft and we will be including that in our analysis of all of the consultation feedback to help us shape and update and amend and really bring people’s voices into what then that next version of the Roadmap will be and closer to finalisation.
I wanted to thank everyone for the time that you’ve given us this afternoon and to hear us out and hopefully that gives you a good introduction and a context to what you could be commenting on in the survey online when you read more of the detail. Maybe some of the things that we’ve been able to cover today will help that make a bit more sense. I’ve really appreciated that there’s been so many of you who’ve stayed online all of this time and I appreciate all the people who might be watching this as a recording later on that you have paid attention for this long. I know that I am feeling like that’s a long session and so I think my brain needs a bit of a break just like probably everybody who’s listening brain needs a bit of a break after this.
So once again thank you. Thank you to our speakers. If you would like to reach out to the team the email I think was in the chat before. You’ll find that email also on our Department of Health website where the survey is. And I think that is all from us then this afternoon. Have a lovely rest of the day. Thank you everybody.
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