Bridging the Implementation Gap: Neurodiversity at Work and Australia’s NDIS Under Threat

[00:00:03] Hi, I'm Dr Russell Thackeray and welcome to Resilience Unravelled, a podcast with new ideas, new thoughts and new thinking about resilience. Guests with remarkable stories, products and services that can really power up your own mindset and resilience. You can also go to our site for more information, to ask questions or to access some of our resources at resilienceunravelled.com. Let's get started.

[00:00:32] Hey, and welcome back to Resilience Unravelled and in front of me, smiling, beaming, some might say at me across the oceans and their continents is Ephraim Ebstein. Jodie, hi. Thanks for joining us today. Ephraim Ebstein Thanks for having me on Russell. It's a pleasure to be here. Great. Where in the world are you, Jodie? Ephraim Ebstein I'm in Canberra, Australia. Oh, isn't that the actual capital of Australia? Isn't that the quiz question everyone gets wrong?

[00:01:01] Jodie Herbert It is. Everybody thinks it's Sydney, but no, it's Canberra. Ephraim Ebstein Fantastic. And Canberra is supposed to be quite an unusual place because it's very different to the rest of Australia is my understanding. Is that true? Ephraim Ebstein Yes. Canberra is Australia's first planned city. So yeah, it was built in, I don't know, between 1901 and 1911. And they actually built it into five or six different boroughs, which with main roads connecting it, it's a little bit different.

[00:01:27] Ephraim Ebstein Lots of greenery in between the areas and population of only about 400,000. Ephraim Ebstein It's interesting. We were in Australia, where everyone has, everyone goes to Sydney. And of course, a lot of people, especially Brits like Sydney, because everyone says it was very European. Ephraim Ebstein I'm guessing Canberra is very much Australian in a sense, isn't it? Jodie Herbert It is. It's like a big country town. Everybody knows everybody or you're at least, they say there's six, six degrees of separation in Canberra. I think it's two.

[00:01:56] Jodie Herbert Oh, wow. Look, that's brilliant. Tell us a bit about who you are and what it is that you do. Jodie Herbert Thanks. Look, I'm the founder of Ability Pathways Australia. And for years, I just worked in digital marketing and data, where you're constantly looking at whether what you designed actually produced the result you expected.

[00:02:15] Jodie Herbert And at the same time in my personal life, I was navigating disability systems and caring responsibilities. And I kept seeing the same problem in completing different environments. So I coined that area as the implementation gap, which is the space between knowing what should happen and actually making it happen in somebody's real life.

[00:02:38] Jodie Herbert As a carer, I've raised three children all around the autism spectrum. I've got two nonverbal boys who are now young men. One of them has been working for two years and my daughter is still in high school. And she's just highly focused, hyper-focused and creative, beautiful writer, beautiful cartoonist.

[00:02:59] Jodie Herbert My husband and I, we've been together for 23 years this year. And I've lived all over Australia, lived on a boat, lived in a 1948 Leyland bus for a while. I've lived on farms. And finally in 2011, we settled here in Canberra and very happy with that choice. It's a beautiful place. Jodie Herbert Excellent. Look, lots of people talk about neurodivisity this year at the moment. It's almost frighteningly common in the sense that there's two things. There's always been there.

[00:03:29] Jodie Herbert Have we started measuring it differently? Have we coded it differently? Blah, blah, blah, blah. But for those few people that don't know what neurodiversity is, sum it up for people. How do you explain it? Jodie Herbert Such a big question. Okay, so neurodiversity. Look, we accept physical diversity, don't we? We accept the people of different body shapes, different coloured hair, different coloured eyes. We speak different languages. We have different coloured skins. We accept all of that diversity within humanity.

[00:03:58] Jodie Herbert Neurodiversity is basically the way people think differently. Some people function better in, say, data-driven areas. Other people function better in creative areas. Usually there's some social impairment there where they struggle to understand nonverbal cues and things like that. But generally neurodiverse people are just the same as everybody else. I just find them really interesting.

[00:04:26] Jodie Herbert And I suppose in the US and the UK, we use the sort of US method of the DSM and the way that autism, for example, is categorised. ADSG is categorised. OCD, all those different things. But I'm wondering whether how you categorise it in Australia, because it's probably going to be different, isn't it? Jodie Herbert Neurodiversity. I've heard you mention ASD3, so that's already different. So the schemes won't. Jodie Herbert Oh, okay. Jodie Herbert Neurodiversity. So how do you actually view the different levels?

[00:04:52] Jodie Herbert Neurodiversity. I'm by no means a psychologist. I'm just a mum that's taken a really big interest in the area that seems to be affecting my family the most. Jodie Herbert Neurodiversity. As a participant, ASD1, the impairment is quite mild and usually it's psychosocial. People may struggle socially. There could be some sensitivity to environments such as noise and lighting and things like that.

[00:05:18] For ASD2, there's what we'd call a bit more of misunderstanding of the world around them or needing probably more adjustments in the workplace, such as a quiet area to work in or a change of lighting, or they might need a few days to work from home because they struggle being around other people. ASD3 tends to be the first step in the profound autism spectrum as a disability.

[00:05:45] They're not always physically able, but most of the time they are quite physically able. They tend to be very disconnected with the world around them and with the people that care for them. A lot of them are nonverbal or have communication issues such as profound dyslexia, or they could have, just trying to think really quickly here, they could have gestalt language disorder, or eclalelia, things like that.

[00:06:13] Yeah. Autism 4 is basically where we start hitting the almost catatonic kind of stage of things. Yeah. And that's really interesting because, of course, we used to have that system, which is very clear. And it helped people enormously, I think, because it allowed people... So now my understanding of the DSM as a psychologist is that everything's just autism. And so from the most extreme to the most straightforward, everyone's treated the same way.

[00:06:42] So, of course, what you get is this huge raft of people at the bottom, one might say the bottom end, whose needs are being conflated with the people with the most severe needs and challenges. And, of course, that's part of the measurement problem, which is why it seems to be everywhere. And part of the confusion about how to more individually create tailored plans to help people, because, of course, the word is we're having to create false separation. So I think what you've got going on there is really brilliant. The other thing that I always find fascinating about neurodiversity is the intersectionality

[00:07:11] with neurodiversity, for example, physical disability, and often gender dysphoria and such like, and often different sorts of things around there, depression, anxiety, all those different sorts of categories. And what we find here in the UK is this sort of treatment bouncing thing where people say, I can't deal with neurodiversity until we've dealt with your physical disability. Oh, no, we can't deal with your physical disability and we've dealt with your anxiety. No, we can't deal with the anxiety until we've dealt with your ADHD. No, we can't. And it's almost used as an excuse not to get treatment.

[00:07:41] But I think the thing you talked about is quite interesting, isn't it? We tend to spend a lot of time diagnosing and thinking about it. And what we don't think enough about is how do you get these people to actually express themselves and actually work and do the things that allow people to become useful? Because a lot of, you know, depression, anxiety comes from being out of work. And actually, if you get people working and meeting their purpose and all those different things, a lot of these other things can be addressed separately.

[00:08:10] So it's almost like I, for example, always worry that neurodiversity is seen as a barrier rather than just another thing that you need to think about in terms of how you individually treat people. I don't know where you come from. Exactly. That is exactly where I come from. I often think back to, I'm in my 50s now, but I often think back to how workplaces were 40 years ago, for example, before the internet. Most people had to deal with maybe two streams of communication channels, email and phone,

[00:08:40] or not email even, letters and phone. Yeah. Facts if we're really lucky. Oh, tell us. That's right. It would be facts. That's right. And this becomes really difficult for people nowadays to understand. But back then we had a, there were fewer channels and managers also had secretaries and assisters to help them prioritize their day's tasks and things like that.

[00:09:06] Whereas today, a single employee may be managing multiple channels of communication with no human support, monitoring emails, teams, slacks, calendars, CRM alerts, alarms, notifications, video calls, texts, shared documents, browser tabs, AI and automated workflows. And it just consumes a lot of the cognitive capacity of the person.

[00:09:33] So I often pose the question to people, do they think that the modern workplace has created an environment in which neurodiversity like ADHD and autistic differences are harder to accommodate, harder to mask, the more likely to become more disabling. I don't know where you stand on that question. No, I think you're absolutely right. I totally agree with you. Sorry. I know we should be disagreeing agreeably, but you all totally agree.

[00:10:00] And good leadership is about how do you harm the skills and talents of everybody who sits in front of you. And there used to be a time where we actually used to value difference much more than we do now. We need this hegemony sort of workforce where everybody just does the told and you don't seem to have room anymore to have creative discontent. There was a phrase of, there was some research done in Europe, I think, that showed that autistic people, the phrase we use over here on the SD is, are more likely to challenge the status quo.

[00:10:30] They're more likely to be, what's the word? They're more likely to raise objections. They're more likely to throw the grit in the wheel of a process. And leaders said, this is a sign of difficult behavior. And other leaders were saying, actually, this is a sign of innovation, creativity. This is a sign of people that do think creatively. And we're not calling it superpower because that's too trite and such like, but it is that way of, if we really want to be, have inclusion and difference, we actually have to understand neurodiversity. Now people get themselves all bent out of shape about saying, oh, we've got to, we've got

[00:10:59] to think about this and oh my goodness. And it's another bit of leadership load, one might argue. There's no difference to thinking about actually people's brains are compromised when they've experienced grief or divorce or all those different things. Or people are hungry even. We understand that. Or people are going through menopause and such like. It just seems so simple to be able to accommodate very simple needs, isn't there? That simple question, what can we do to make you more effective in your job? It's a question we've asked for years.

[00:11:27] But we just don't seem to, as you say, we don't seem to implement the requirements. I was working at a mediation quite recently where someone was saying, I need, I just need more time in meetings to literally process what's being said. And then I need to go away and think about it because I have, I have a way of working, which means I have to be very ordered thinking. And the team leader's going, oh no, don't worry about that. No, I just want to be creative, which is fine because it worked for the leader, but didn't work for the member of staff.

[00:11:55] And there's, and then there's always that challenge, isn't there? Actually, whose needs are most important at that moment in time? That's right. And when it really comes down to it, how hard are these adjustments for people to really do? Yeah. They're not asking for any kind of exotic luxury kind of adjustment. They're basically the main things that I put forward to employers on behalf of my clients is we put it, we want things put in writing. Okay. Yes. Briefly verbally, but follow it up with an email.

[00:12:25] Yeah. Give me a process. Start using SOPs. That sort of thing. Instead of just expecting me just to work it out after just spending a half hour sitting with somebody being taken through the software and then left to develop my skills on my own devices. I know certain brains can actually function that way. Most people need strategic point by point instruction. They need a lineal instruction.

[00:12:51] They need to learn the alphabet from A to Z, basically, instead of jumping around all over the place and as the situation arises. The third thing that they always ask for is a quiet space to work in. Can I work from home? Can I have a desk in that room there? Because Josie and Bella are always gossiping and I can't concentrate. There's very simple things.

[00:13:17] And when you really think about it, if an organization does make these very minor changes, what is the true cost of those adjustments? It's barely anything at all, especially when you compare it to the cost of losing the employee because when they actually employed the employee, they must have seen something in that person that they thought would be a great addition to the team, a skill, a talent, a passion.

[00:13:45] They saw something that made them want to employ that person. And whether they disclose the disability or the need during the interview or later during employment, depending on when they become aware that they're not coping, there's really no reason at all for organizations to medicalize these adjustment requests when it comes from an employee because these adjustments could actually benefit everybody. And isn't that what we really want?

[00:14:15] You've hit on two twin themes I love to bang on about. So I'll be interested in your view on this. I think what you're saying here is this thing that we've forgotten about in organizations, which is what we used to call learning. We hired this person six years ago and now they're not doing what they need. And it seems to be the person's fault rather than saying, as an organization, how did we learn? How did we move that forward?

[00:14:39] And I think that feeds into another thing, which is this sort of busyness vibe, which is you talk to anybody in an organization and say, how are you? And we're Brits. The first thing we say is fine. It used to be. But now we say, oh, we're so busy. And it's this narrative now that we're all too busy to take time. And actually, we're too busy to learn. And actually, and the cost of not learning is so much higher than the cost of learning and adapting.

[00:15:02] Given that most organizations are absolutely challenged to become more agile, become more nimble, to become more process, continually improving. And yet we've thrown out the systems between leadership management to allow that learning to take place. And the simplest thing of all is saying, actually, if you're going to work from home, how do we adapt our process to make sure your productivity is harnessed and you can do your best work? Yes. It's cheaper. But of course, the thing is, it has different knock-ons and I get that. But I think the battle to work from home has been won over here. And I don't know where it sits in Australia.

[00:15:32] I would have thought the size of your country that online working would be rife. What would think so? I've actually worked from home since 2003, which is long before COVID made it fashionable, I guess. So I've worked from home a lot since 2003. Occasionally, I would take a role, which would take me into an office. And I very quickly worked out that it just didn't work for me.

[00:15:59] And that was mainly because when I go to work, I'm there to work. Because when I'm not at work, I've got all this other stuff to deal with here at home. And I've got the two boys, support workers coming backwards and forwards. I'm engaging with schools and with support organizations and programs and all this sort of stuff. And so when I go to work, I expect to work. I don't want to sit there gossiping. And I don't want to sit there.

[00:16:26] To me, not doing the work that I'm paid for is actually hard for me because I really enjoy working. And I really enjoy bringing a task to a conclusion and actually seeing it finished and presenting it to the boss. I really enjoy that. But with people knocking on the door or coming in and out. I had an employer once that came to my door. I had my own little office. I had the door shut because the girls outside were gossiping.

[00:16:54] And I had the light off because I had a big window and I prefer to work in daylight. And he came in and he said, no, policy is door must be open and lights on. And he clicked the light on. And I was like, okay. And things just kept compounding from there. I was over there 10 weeks. I resigned because it was just impossible for me to feel like I was adding value to the organization because I couldn't work the way that they wanted me to work.

[00:17:24] It is interesting what you're saying here because we talk about the, I talk about the hypocrisy of authenticity. And I also talk about the impossibility of authenticity and don't believe in this at all. But actually people talk about authenticity. And then when people bring their home lives to work, because that's part of who they are, then ethic and convenience. So we don't want to hear that anymore. And that's a part of our working adjustments.

[00:17:43] I actually think that the return to work has been actually funded by the fashion industry because they're suffering because no one's buying, buying trousers, shirts, suits, suit, suit, trousers, or shoes anymore. We're all sitting on zoom lenses with our posh tops on and then underpants, just a pair of pajamas underneath. So joking aside then, so how do you get organizations or how do you get anyone to think about how to implement? Because obviously, as you're saying, that's your meat and drink, isn't it?

[00:18:12] So how do you help people with this implementation gap? The first step I always do with my clients is I do a longitudinal study. So I get them to fill out a questionnaire for me every night for at least 30 days. And in that, they describe and answer questions, which gives me a pretty detailed view of what their workday was like.

[00:18:36] And then from there, I analyze it to death and push out a really great resource for the employer, complete with visualizations and everything and recommendations of what they need to do. And then, then we meet and I present them with this. And usually the whole conversation then just comes down to what the recommendations are at the end of it, because it's data driven and people just can't argue with data.

[00:19:05] So, and it's, yes, it's data from one person's point of view, the employee, my client, but it is indicative of what is happening systemically across the organization. Yeah. And so then I work with them on what do we need to do? Okay. I would like to do a presentation to your whole of staff about inclusion. Okay, great. Tick. Let's book that in. Great.

[00:19:29] Next, I want to sit down with you and I want to start looking at the communication practices that you have within the organization and how I can help you to improve those. Because coming from a marketing background and working with a lot of systems, I'm very good at that. And then, and then we just start working our way through these recommendations step-by-step. Occasionally you come across an employer that's like, no, no, the cost of this is way too much, blah, blah, blah.

[00:19:56] And I'm like, seriously, sending, sending an email with the notes from the meeting that you just had with the employee is too much detail. That's too costly. I can show you an AI app for you. Exactly. Goodness. AI can do it for you. Yeah. Oh, I don't like technology. That's fine. I'll set it up for you. And then all you've got to do is just do the meeting. Everything else will just flow. So all these kinds of things come into play.

[00:20:22] A lot of it is a negotiation, but once I actually show them the cost of losing that employee, it's going to cost them $50,000, $60,000 just to replace that employee. Why not spend $2,000, $3,000 on me helping them just to fix these few little things that will make life easier for everybody? Yeah. And what you're talking about here is that people think about the cost of it, but they don't see that cost put into people is actually an investment.

[00:20:50] And therefore there will be, and the return isn't always as extreme as someone might leave because that again is a cost implication. It is the benefit of actually productivity. People will get more done. And I think it's interesting you as a marketing person using marketing techniques, this is all just about segmenting your stakeholders, isn't it? And saying, what are the need of my stakeholders are? And of course, this challenges leadership, isn't it?

[00:21:12] Because most leaders think of themselves as being the boss and in charge rather than saying we're here to facilitate the productivity of a group of people whose output should be the greater than some of its parts. And sort of leaders have forgotten that, I think. And that's fascinating. How do you find legislation in your country in terms of disability? Because I know that you were talking about that earlier and I was quite surprised to hear some of that stuff. There's legislation around inclusion in the workplace. That's completely separate.

[00:21:40] That's all to do with disability rights and things like that. And the government is right behind that. And organisations here have a requirement to make certain adjustments in order to be able to employ people with diverse needs. And then we've got the National Disability Insurance Scheme, the NDIS we call it. Which started in 2014. And it was before that Australia is a vast place. And we've got six mainland states and one island state.

[00:22:10] And then we've got the ACT is a territory in the middle of New South Wales. Yeah. But there's vast distances between these metro cities and townships and spots on the road. And the problem is with the system we had before 2014 was that there were, it was basically a postcode lottery. What state services you could access. If you lived in Brisbane and were close to Brisbane, you could access whatever you needed.

[00:22:39] But if you lived in Rockhampton or Mount Isa, which is even further and further away from Brisbane, those services were not accessible for you. And people like in Mount Isa would have to fly to Brisbane to see a speech therapist because there weren't any in Mount Isa. Behaviour support people were just not, they were only in the capital cities. And we didn't have video screen meetings back when this all started back in the nineties.

[00:23:06] You would just have to get in the car and drive 15 hours to go see a behavioural specialist. Wow. Telehealth was not a thing. There was all these problems that every state has this issue because on the coast we've got most of the population. But as you go further west, there's less and less services. So the federal government in 2014 decided to implement the National Disability Insurance Scheme, which would give people the funding that they needed to pay for the supports that they needed.

[00:23:35] And then people said, what about this? There's no services in these areas. We will encourage small business to start businesses in those areas and grow and that kind of thing. And it's grown now to something like 2.7 million providers and about 300,000 support workers across Australia and things like this. And allied health professionals were another shortage that we had and they've all grown. We've now got four times as many support, sorry, allied health providers that we used to have.

[00:24:03] And now in 2026, the government is saying, oh, this is all too expensive. So now we're just going to cut everybody's supports down. I've got clients whose supports have been cut down from $96,000 a year down to $27,000 a year and $86,000 a year down to $34,000 a year and so on. And it's at the fee that the NDIS says we must pay support workers and the providers.

[00:24:29] It's inaccessible for people to pay for these services, these support services to help them shower, to help them cook meals, to take them to the doctor, to take them to job interviews, to get them out of the house, particularly with psychosocial people. All of these things are being taken away at present. There's this bill going before the parliament on Friday this week, the 14th of August.

[00:24:53] And yeah, the disability sector has been campaigning very heavily against this bill for the past three months. When the government first put the bill forward, they thought that they could just push it through and the disability community wouldn't be able to rally in order to fight it. But we had rallied and we are fighting it and they pushed it to a second inquiry. And now we're going to get that vote on it on Friday. So everybody's a bit nervous here in Australia at present because we don't know which way it's going to go.

[00:25:22] I imagine they're using the cost of benefits is the trick here. It is. It's a nanny state. The usual narrative, isn't it? It is. So they're going to take us back to the state-based version, which is lottery by postcode again. And people are going to suffer and a lot of small businesses are going to go out of business. And a lot of people whose sole income is coming from being a disability support worker are going to be unemployed.

[00:25:50] A lot of allied health people that work with children will find that they have no clients because they're not going to fund children under the age of nine. And it's demoralizing, really. And there's many disabled people which are very scared because they don't want to go back to those dark days. They don't want to go back to the background where they were and the institutionalization that they had before the NDIS. So it is a very sad and scary time at present. It is.

[00:26:18] And it's such a peculiar methodology, isn't it? Because actually, I don't mean methodology, it's philosophy. Because if you're subs, and what people say is the cost of benefits is huge. But again, the cost of benefits towards a person who is subsidizing their work life is very different from just paying benefits to sit at home and not work. Because one is an active member. They're fulfilling their part of the community. But they're also going out and buying. They're also part of a community. They're actually contributing to the net.

[00:26:44] And I think sometimes even the data doesn't convince these people because actually they just want to make it. They have to make a cut because actually their methodology is there. You have to have hope. And the good thing about all these things is there seem to be like pendulums, don't they? And they swing back and forth. It does. I'm very worried that people will take their own lives and things like that as a result of the decision that comes to on Friday if it's not a good one.

[00:27:08] Regarding the whole disabled economy that they built around this NDIS, studies have shown that it's every dollar of funding that the government actually pays for a service on behalf of a participant, it actually comes back as $2.50 into the economy. So they're saying that it's unsustainable. But really, it is sustainable. It is finally sustainable.

[00:27:35] It's just very badly managed by the government. And they just need to fix that in. But instead, they're just slashing plans at present, which is really sad. Yeah. Look, how can people find out more about you? How can they approach you to do your audits? How can they help your advocacy work? Oh, lovely. Look, I'm happy to work with anybody across Australia or the UK. Basically, my web address is abilitypathways.au.

[00:28:05] If you're struggling with funding or not getting the supports that you need, I really recommend a data-driven approach. It's going to be undeniable to the decision makers because you are surely showing your daily support needs. And if anybody wants to reach out to me on LinkedIn, just look for Jodie Herbert. I'm Jodie with an IE. Herbert's felt like the man's name. And I'm in Canberra, Australia.

[00:28:34] And I'm the only one. So you can definitely find me very easily. And I really look forward to connecting with some of you. Brilliant. Jodie, it's been absolutely fascinating today. Thank you so much for spending time with us today. Good luck with this legislation. It's a trite thing to say. But these things are really important, aren't they? Because these things can make or break organisations. But fingers crossed, whatever happens, you need people like yourself who are out there fighting a good fight and making work happen. So thanks for spending time with us today.

[00:29:04] Thank you so much, Russell. It's been a pleasure. You take care. Hi, I hope you found that episode useful and entertaining. If you want to support our work, please go to resilienceunravel.com and you can become a member there as well. You can also send us a question there and even apply to do a podcast. You can also leave a review on Apple Podcasts or any of the other podcast hosts of your choice,

[00:29:31] as well as getting hold of some useful resources about resilience and a whole lot more. Join us next time on the next edition of Resilience Unraveled.