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Standing Committee on Employment, Education and Training
12/07/2021
Adult literacy and its importance

HUDSON, Dr Judith, Non-Executive Director, Dear Dyslexic Foundation [by video link]

MacJOUVELET, Ms Christine, Chair, Dear Dyslexic Foundation [by video link]

WISSELL, Ms Shae, Founder and Chief Executive Officer Dear Dyslexic Foundation [by video link]

[15:49]

CHAIR: We're moving to our next witnesses, from Dear Dyslexic Foundation.

Dr Hudson : I will hand you over to Shae, who will introduce our project.

CHAIR: Yes, that would be great. Just briefly, Ms Wissell. We have your whole submission here, which could take up the entire time that we have, but please pull out the one or two topics you really think we should be engaging. My sense certainly is that we understand the scale of this problem. The question is: where is intervention funding best directed and what are the impediments? So we're really looking at those two questions.

Ms Wissell : First, thank you all for having us here today and for reviewing our submission. We greatly appreciate it. Dyslexia and dyscalculia are not topics that are often talked about, so we're very grateful to be here to discuss those issues with you today. I'm the CEO and founder of Dear Dyslexic, and I established it in 2015 following my diagnosis of dyslexia and dysgraphia at the age of 27. It's not uncommon for young people and adults to be diagnosed later in life, which can cause a number of significant issues as they progress through education and into the workplace. The foundation has been set up to support young people and adults with dyslexia and other specific learning disabilities. Dr Judith Hudson will talk a little bit about dyslexia and literacy issues, and then Christine will talk on dyscalculia and financial literacy difficulties. Then we're open to your questions following that.

CHAIR: That's great. We might even dive straight into questions given the time, if that's okay, but you'll have to sort of leap forward when you get to the appropriate points. I was just going to start with that question about where you identify the current barriers, particularly interjurisdictional ones or barriers between schools, TAFEs and adult education provision. My second question is about the most effective evidence based point of intervening to capture as many people as possible with specific learning difficulties and make sure they get the help they need as soon as possible in the life cycle.

Ms Wissell : The barriers that we have identified and that people speak to us about include the cost of assessment. If you're not picked up in school and you don't get access to university or TAFE, where you possibly can get a cheaper assessment, people fall through the gaps. There's no Medicare billing for a dyslexic assessment. Normally, if you're a young person or an adult, it's done by a neuropsychologist. If you're in the education system, it's normally an ed psych. As we progress into adulthood, that access to an assessment becomes less and less, because the cost is a minimum of $1,500. Prior to COVID, we advocated with the federal government to try and have it put on the Medicare Benefits Schedule. So has the Australian Psychological Society. There are a number of different organisations that have been trying to advocate for this, including a number of other dyslexic organisations.

CHAIR: What is the point of intervention to have the best impact? You half answered it there, really: it would be through Medicare. But what can we do in the younger age groups to pick up the entire cohort that would benefit from better support?

Dr Hudson : Of course, the earlier you pick it up and put an intervention in place, the greater the success and the fewer problems you have in adulthood. I would say that the first problem is training and raising awareness about dyslexia. Australia does lag behind other countries. It's improved an awful lot in the last 10 years, and in the last five years it's improved considerably, but there's still an awful lot of ignorance about dyslexia. If it's not identified early, the problems we've talked about can be exacerbated as the child gets older. But you can't expect teachers to pick things up if they don't know what to look for. So you've got to train your workforce in education.

So many young adults and children fall off the radar and end up in incarceration or in youth detention. Some young adults do manage to get identified in that set of circumstances, but that is too late. You've got to train teachers. You've got to train educators. You've got to train trainers and employers about what dyslexia is. Without that knowledge, people are ignorant, and, unfortunately, the child or the young adult does not get the positive attention that it requires and ends up in a negative situation.

CHAIR: That's right. We'll go to my colleagues—first of all, Ms Bell, and then Ms Hammond.

Ms BELL: Christine MacJouvelet, did you have something that you wanted to add to that last comment?

Ms MacJouvelet : Yes, I just wanted to say that I work in the vet sector—also, I am dyslexic and dyscalculic; I have dyscalculia, which is a very shameful thing to have—and, in the education system for vet training, we have the most wonderful opportunity, because every person is checked with an LLN test, which is a language literacy and numeracy test. However, I've worked in this sector for many years now, maybe 12 years, and the training, as Judith has said, isn't there. There was someone I was talking to the other day who was speaking to an LLN specialist and she told them that she had dyscalculia and they didn't even know what it was. There's also not an understanding of the correct strategies or the adjustments that can be given. The most common one is 'Yes, we'll give you some extra time' and that's it. The lack of understanding is massive. That's all I wanted to add.

Ms BELL: Thank you very much, Ms MacJouvelet. It's a beautiful name.

Ms MacJouvelet : You say it well!

Ms BELL: Thank you all for coming to today's hearing. It's really important to hear from you directly. And, to those of you who have spent years of your life no doubt struggling with trying to keep up with your language illiteracy, well done to you for working so hard to be able to be here today to join us for this public hearing. It's really important that we hear from you.

I wanted to focus on the intervention and solution strategy. I note that in your submission you talked about the value of tutoring and mentoring in delivering results. I just wanted to hear from you about the difference in having a tutor or a mentor, as opposed to being in a classroom setting or having two, three, four or 10 people all in the same environment learning the same things, and how valuable that one-on-one interaction is for SLDs and dyslexia.

Dr Hudson : My connection is a bit unstable, but I'm quite a long way from you. [inaudible] earlier about how training is important, one to one. Dyslexics have a lot of common features, but they are also very much different; no two are the same. They all have some sort of difficulty but not necessarily the same range of difficulties. If you're working one to one, you can actually identify how the learning structures are being absorbed as part of the modus operandi of the person who is dyslexic. If you're working in a group of six or seven—and I have experience of teaching groups of six or seven—you've got six or seven individuals all with different difficulties. Unfortunately, in education, they will also throw in slow learners and throw in behaviour problems, and nobody learns anything.

One-on-one mentoring is quite powerful. It's expensive, so it's not often used. Certainly in education, you can go into a school and identify one child, and, before you know it, the intervention teacher has four of them, so it's watered down and the one-on-one opportunity is lost. Even if one-on-one mentoring is short-term—six sessions—it can be extremely powerful. You can identify the difficulties of that individual and you can put in place things that support their learning or their functioning in the non-dyslexic world.

Ms BELL: You said that mentor programs are very expensive. I understand that, in terms of the skills to be able to mentor somebody with SLD, but are there community based programs that are volunteer based that could help meet the needs of dyslexics?

Ms Wissell : There are two separate things. When you're in the education system, the importance of individual tutoring is significant, whether it's from a speech pathologist or someone that's trained in dyslexia to support a student. As you progress through, what we've found through the foundation is that people are coming to us as a young person or an adult needing tutoring, whether it's to help them at university or to support them in their workplace, because they need some literacy skills support. What we also offer is a mentoring program, which is peer-to-peer mentoring. We have a 1800 helpline that can support them on a one-off basis. Then we have peer support, where another adult who's dyslexic supports someone that's coming through that might need some life-skills support, or we might provide a combination of tutoring and mentoring. We do it through our organisation, and there are some other organisations as well. There are a lot that offer the tutoring, but there are not as many in the mentoring space at the moment.

Ms BELL: Is there a big demand, in terms of waiting or a waitlist, for people with an SLD to get tutoring or mentoring?

Ms Wissell : Definitely for tutoring, especially for children. Our focus is young people and adults. We have parents coming to us, looking for tutors. We try as much as we can to link them in with our other organisations, like SPELD, or individuals that we know of, but, normally, those individuals have huge waitlists and can't see them. In terms of demand for mentoring, from our work, it's growing. We haven't publicly advertised that yet, because we're still setting up the processes, but we've got people coming to us more and more. On our helpline, we get an average of five calls a month from individuals needing some type of peer support or guidance, particularly in the workplace.

Ms BELL: It sounds like wonderful work that you're doing.

Ms Wissell : Thank you.

Ms MacJouvelet : Shae might also want to mention that there is currently a peer support group of dyslexic PhD students, led by Judith and Shae. It is incredibly hard to do your PhD as a dyslexic student. We are a peer-led organisation. We have this group up and running now. I believe it's a world first. We are teaching the people within that organisation how to continue to be a peer support group, because that can reduce costs dramatically, and also self-led—what's the word when someone goes in and fights a battle for you? Sorry, I forget nouns.

Ms BELL: It's called politics, Ms MacJouvelet!

Ms MacJouvelet : Sorry, what was that word?

Ms BELL: Advocacy.

Ms MacJouvelet : I'm very sorry. It's embarrassing. I do skip nouns. When you teach people how to self-advocate, you remove a lot of costs from the system. Instead of someone leaning on a professional mentor or coach to help or advocate for them, in this group not only are study skills explored and improved, at very low cost, so is self-advocacy. People have had success through knowing people. They're connecting with people. It's more like the way the real world works. In the world of work, a lot of it is about who you know and knowing who to speak to to make things happen. So this is something that I think will grow and grow.

CHAIR: Colleagues, I'll just jump in and welcome Ms Kate Torney from National and State Libraries Australia. It's great to have you with us. There's a natural overlap between issues facing those living with dyslexia and libraries in particular. Is there a show of hands to include Ms Torney in our conversation? We will continue on with more questions for the Dear Dyslexic Foundation. But, in a couple of minutes, we'll invite some introductory remarks from Ms Torney. We'll continue on, with no need to sign off. I see that Ms Hammond is back with us from Perth. Do you have a question for the DDF?

Ms HAMMOND: Yes, I do. I have a number of questions for the DDF. Thank you for being here today. One of the comments you make is about the early identification of SLDs. I have to give a shout-out to community based early childhood nurses. I have personal experience with somebody identified relatively early on at the age of two, or a bit older than that, with dysgraphia. It was very useful to have the child health nurses educated and involved in that space. Leaving that side of things, we'll move on. You live with SLDs for life. It's really important to develop strategies and mechanisms to be able to manage them in life, in school and in the workplace. If they're not diagnosed early enough, what are the implications? Is it easier to develop those strategies when you're younger?

Dr Hudson : Yes, definitely. You were saying that you can pick it up at two. A speech therapist can pick up the signs when they're very, very young. Any mother who gets their child identified at around the age of eight or nine will tell you that they knew there was something there and had this gut feeling with this child since it was born. There are signs; there are symptoms. You could educate GP's, health centres and community nurses on what to look for as well. There is great ignorance in the medical profession as to what dyslexia and dysgraphia, and all the other disabilities underneath the dyslexia umbrella are. It goes back to raising awareness. People aren't talking about it publicly. Christine was talking about our PhD group. It was absolutely horrendous to identify the fact that these people were doing PhDs, but they would not dare disclose anywhere that they were dyslexic as well until they were getting towards the end of their study. That's awful to go through life not only coping with the difficulties but actually being ashamed of them. That is awful. That is a dreadful thing that we've got to change.

Ms HAMMOND: I'm just picking up on one of those points. New parents are often told that there's a width of when children will grasp certain things and 'don't worry yet.' But then you've also got a plethora of books that you read when your children are young that make you panic when they haven't started walking or haven't started doing this. There's a real tension there between the sort of information you're given. Shae, I think you were going to pick up on the earlier point.

Ms Wissell : Thank you. It's really about building resilience when children are young and looking and working towards their strengths. Our literacy skills are always going to be behind the general population. We are always going to struggle. The sooner you're identified and get that support, the more likely you're going to be able to manage as you progress through into adulthood, where there are fewer and fewer resources available to you. The research I'm doing for my PhD is looking at mental health and wellbeing and the impacts as we progress through into adulthood, and the experiences of what life is like once we leave school. Resilience is one of the key things that is coming out of that research. People need to build their resilience, because there's no support once they leave school. If you're lucky enough to get that support in school that's fantastic, or if you're lucky enough to have parents who can afford to pay for the support outside of school—it's a significant cost to be assessed, to access interventions. Teaching children that they have strengths in other areas, and that this is only one component of our lives, is really important, because if you're not taught that when you're young the cost on your mental health is significant and you're constantly battling those demons for your whole life.

Ms HAMMOND: Excuse my ignorance here, but is there a genetic component to SLDs?

Dr Hudson : Yes. There is no one gene, just several markers that they are picking up. But, yes, it definitely does run in families. A lot of adults don't get a diagnosis until they are in adulthood. Usually what happens is the child gets the diagnosis and the parent then realises, 'Hang on, this is what I've grown up with,' and this is where you get your adults being identified as well.

Ms HAMMOND: Are there a sufficient number of adult-based programs out there across Australia? No. There is uniform shaking of heads there. Can you perhaps highlight two really good programs? I know that you've got a number in your submission. Are there two sort of lighthouse programs that you think, 'Yeah, they're really good for a newly diagnosed adult with SLD'?

Ms Wissell : I don't want to be biased in saying it's us because there are a lot of organisations out there. I think the strength of what we've done is that we have really focused on young people and adults and that has been lacking in the system. Definitely there are programs, such as the work Chrissy has been doing at Hampton Park where we're working generally to improve literacy skills for people, whether they are dyslexic or not—but trying to work at that level. If someone hasn't had the opportunity to be diagnosed and they come through training, like what Chrissy's doing, they're able to be really well supported without needing that formal diagnosis of having dyslexia. Did you want to add, Chrissy?

Ms MacJouvelet : The more that we're able to help adults, regardless of whether they have a diagnosis, or whether they've struggled—because extreme trauma can have the same sort of mental impact on your learning. If you've come from war torn places and whatnot the learning abilities can be affected the same way. Programs like Hampton Park Community House—the Learn Local environment is one that Dear Dyslexic have partnered with and we have written courses. Numeracy, financial literacy and literacy can have a shocking impact—as mentioned in our report, being dyslexic can often include things like having a disorganised brain and grappling with maths concepts. If you've actually got dyscalculia on top of that it can make it very difficult. These kids have grown up at school knowing that they're disorganised, scatty, don't concentrate, not clever. These are the sorts of things that they've learnt, which must be stopped. Then once they start driving and they start getting car fines, and having to pay for their rent—the brain isn't well organised for daily living and finances and this is dreadful. At Hampton Park we're using fabulous resources from ASIC and we are helping teach people financial literacy skills. We're wanting to teach other trainers within that system and get it rolled out. With the literacy area we're just rolling out a new literacy course—if people are thinking that they'd like to be able to write a card to their grandson or a letter or read a book to their own child.

I can tell you from my own lived experience the terror I had, even though I finished in the top eight per cent of the state and with all of my teaching qualifications—early childhood, primary and PE. My ex-husband did wave it over my head constantly and said that once my daughter was a teenager she would need to go with someone who could intellectually stimulate her better, and of course it would be him. If you are not good at maths, English or managing your own dollars and cents, you can end up with your family looking at you very poorly. You can be trained in those areas. It can be done and it must be done. At the Dear Dyslexic Foundation we're looking for the most cost-effective ways because we are our community and we are a not-for-profit. This is vital work.

There are wonderful things. Dr Judith Hudson could talk about 26TEN in Tasmania. Tasmania has shocking literacy problems. I'll stop.

CHAIR: On that note, any evidence you have on the cost-benefits would be really appreciated. Could you send that through to us in the next seven days, if possible? We want to see the data in particular on the timing of interventions, evidence for cost-effectiveness and the cost benefit. DDF can certainly stay with us.