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[email protected]. You can also call us on 1300 triple 9, 6 3 6 Joyce and control a podcast, celebrating people with disability brought to you by carers Queensland, indice, local area coordination partner in the community. Max Elliot has quite a history with the brothers rugby club in Albion. He's working in the restaurant on a school-based traineeship. Before that he started playing there in 2014. When his parents established the ginger cloud foundation, their modified rugby program is making sport accessible and inclusive for kids of all abilities. Max has autism and uses NTIs support to build his skills and independence. His mother, Megan says that's how he decided he wanted to spend his career in the kitchen.
Speaker 1 00:01:24 It was that December last year, we just did speech therapy one day and he just turned around and said, mama, I want to be a chef. And we were just so, so excited. Um, and we've seen particularly since he's been at, um, being able to get out from school a little bit more. Uh, the, the chef at Rutgers is just an amazing person. Simon's a wonderful man. And um, so max has really come out of himself. So, you know, from this year he'll be doing what they call a school-based traineeship. So he will be at school, but he'll be at Rutgers sort of two half days a week. And in the kitchen doing kitchen and food preparation one day and then, um, front of house. So, you know, taking food out and talking to people and customers and, um, all the Friday afternoon when it's quite busy at loggers. So, um, yeah, it's been obviously as many families like ours experience, uh, it's a marathon, not a sprint, this journey we're all on, but, um, we have to say he's just a wonderful, wonderful, warm young man. So it makes all the hard work with it really worthwhile.
Speaker 2 00:02:31 That's great. And why shifts? Well,
Speaker 1 00:02:34 He loves food, so that's really good. Um, he's always loved food. It's really interesting, but I think so. Um, when, uh, maxism interesting, he's such an intuitive young LAN when he likes people. He really likes people. And I think he, um, he loved Rutgers and sort of, there's a sort of longer story around this in terms of what we did with ginger cloud foundation and the modified rugby program that we'll talk about that. Um, we, we wanted to create a place where he could feel safe and secure, be understood, experienced success and belong into the longterm. And so, because mother's restaurant is in brothers rugby club, which is where we started this program called the modified rugby program back in 2014, he's been there every week, twice a week, every year since then. So he was so comfortable in that environment. That's what we used to go and have pizza and we'd have drinks at the restaurant within the club.
Speaker 1 00:03:35 So for him to then be able to work there, um, wasn't, uh, wasn't a stretch. Um, but I think also the influence of having the, you know, the full law's work experience, but also, um, a wonderful owner of the restaurant, um, who ironically his son and max were in the same year at school from when max was in grade two, kind of on and off and met who met Moses, who wines Rutgers. Um, he remembers when max was totally non-verbal and would kind of sit in the back of the classroom. And for him, it's just extraordinary to see him now being, you know, an apprentice chef in the kitchen working in his business. Um, so I think all of those things create this, um, this place where everyone is working towards max success, um, because they see the value that he brings into that community
Speaker 2 00:04:34 Is max using any Endis supports to, um, to help him on his chef journey?
Speaker 1 00:04:41 Yes. So, um, the main things that we're focusing on from a, um, activity development perspective is, um, functional numeracy, functional literacy, and really good language development. So we're using that in terms of the capacity building, because when you make max, now it's hard to imagine that seven, we would tell, um, by a specialist school that be prepared that next would never speak, never raid a never right. Um, and we would just fortunate that, you know, we had this little bird on my shoulder that just kept saying tough at seven, like he's only seven, uh, writing someone off at that age when we don't understand enough about the neurology of, of autism. And max is quite tricky because he has autism and he has a very complex language disability that sits as a co-morbidity. So it's not just driven by the autism. And it took so many years to actually DB into that and identify, um, that the learning, um, delay was so complex.
Speaker 1 00:05:47 It was coming from a lack of attention. So, you know, we had to have the medication sorted out, but then we found an incredible stage pathologist. Um, his name is Martin and he was the one person who went. Yep. I think I've got something that I can work with with max. And, um, you know, so when we had all the language assessments, every part of Max's language assessment was below profound. Like if you can imagine off the, there was nothing except this huge spike in meaning. And it was quite incredible that from a science perspective, you know, we worked with a speech pathologist who could basically attach language onto that one spike neurologically of meaning, and now he can operate in a group. He's got great receptive language, more complex concepts are tricky for him, but we can break that down and he can ask questions.
Speaker 1 00:06:41 So if you think about that from the capacity building perspective, that's where a lot of our focus guys, we still have three hours a week of speech pathology, which is the only way that max has had this language that's really developed now, but also we use an amazing program called got it. And, um, so we use that for any assignments and stuff for school for max now, because we, we use a lot of the funding also attached typing. So we taught max to touch type really early because of all of the motor planning issues, writing was just a nightmare. So it took so long to write and he couldn't get his thoughts out and using, got it, which is a program that was actually designed adults with dyslexia. Max can now get the thoughts out and actually, you know, then write his communication as well.
Speaker 1 00:07:29 So that's been really exciting. And then from the community capacity, building from the community saw to the social community, um, interaction side, we've got fantastic support workers who would do things like, um, teaching him, um, to catch the bus. Uh, but I love cooking at home. So, um, both two of our support workers are really fantastic in the kitchen and they love cooking. Um, so they've really given that a passion for cooking. And I think that's part of where the chef part comes through as well. But, but, you know, max, if max could have pizza or they would a pizza, but it gives him a sense of, he can do these things by himself, um, last year or so, there was a big chunk that we helped max and get his, um, learners online as well. So there was a lot of practice that went in with that.
Speaker 1 00:08:22 So, um, we also use a fantastic tutor who is really helping build, um, the function numeracy. So that's things like, uh, max can start to make some basic assumptions about when you give people $10, how much money, if you spend five, how much money should you get back? So trying to give that sense of financial security, it will be very difficult for max to really ever control his own money. Um, but you know, we can put things in place around that, but as much functional human <inaudible> as we can, and then really building up all the independent skills like VCA has got a new bike, so he's going to be riding to and from Rutgers so that he's got that independence going to and from work as well. So the whole Alex, this is our second plan. Um, it worked so well for us last year. Um, and, um, we've got, you know, um, a great coordinator as well. And I think, um, when you've got a really clear vision about what he thinks your children can achieve and what your young people can achieve, then build a plan kind of based on that, that vision, if that makes sense.
Speaker 1 00:09:44 We want max to make as much of a contribution in the community as he can, and that hopefully involves getting a job or some level paying taxes, as well as getting all the support that we can, but we want his life to be as normal as it can be in the capacity of what he has and being able to modify things and keeping that support around him. But, um, our children have the right to that expectation in life. We're a really, um, strong belaboring, um, you know, contribution. And, um, because once communities start to understand what our children and what our young people contribute to community, they start getting turned on to, oh, maybe we can modify things a little bit because these people are amazing and they bring so much and they enrich our lives and teach our young people so much about disability. And yeah, that's kind of always been our philosophy.
Speaker 0 00:10:40 Getting started with your first national disability insurance scheme plan. Get off to a strong start with carers Queensland's free workshop using your Endis plans, but how do you use your funding? What for service providers and use the, my place portal. Find out more check for events coming up near year and book your spot
[email protected]. You can also call us on 1300 triple 9, 6 3 6, the family's relationship with the club where max is now working stretches back to when he was living. When the seeds of what would become the ginger cloud foundation were first solar
Speaker 1 00:11:25 For us those years, between five and 11 were pretty Blake. Uh, we got to 11 and max was at school down the road. And, um, there was, um, a wonderful, um, rugby coach. And we had a friend around the corner. His son had asperges and we started a little big band called <inaudible>, which is basically about getting kids out on the field, being out of the possible portable down, just to kind of get some of normality, um, because we have a huge rugby club with Mitchell, a roll down the hill as a Mexican bodies bike down the hill to a wonderful rugby club called brothers rugby club. And, um, we still remember, so clearly max was about 11 and he was doing max and Jake rugby. And we said to our coach at the time, I said, Hey, Dale, you know, there's this incredible community of people, um, down the road who we don't know, um, all of the other kind of age, my two boys is max.
Speaker 1 00:12:26 They all play at Bradley. Um, but we don't max doesn't know any of them. We don't know any of the parents, Lara had told her, doesn't know any siblings. Um, how do we get involved in these incredibly vibrant community? Because we've lived that, that period of our life with like a family, with alcohols, with blinkers on literally just trying to get from day to day. Um, and then yeah, once we had this bit of space to get light at the end of the tunnel, we went well, okay, how can we get involved in the club? And that's kind of where it started, but what we realized was that, um, if we knew nothing about autism, which we didn't, how would we expect anyone else in our community to know anything about the challenges that, that we were facing? So we realized that that if we wanted to get involved in the community, that it was also our responsibility as a family to help try and the community and help build awareness about, about our kids.
Speaker 1 00:13:28 So the first thing is to create a place where our kids feel safe and secure, where they're understood where they experienced success and belong. And the second thing was to nurture a generation of young people for who disability is normalized, because a bit like the recycling kind of concept, if you train the young people, they will take. And by young people, I mean kind of 14 to 17 year olds initially, um, they will take that, that thought leadership, um, back to their families and back to their group of friends. And because only by normalizing disability, will we be able to create this community where, when they're not here anymore, literally I know I'm able to support Max's life and his vision, that community needs to be ready and have the capacity to be able to go. Of course, I'll involve max in kids like max like that.
Speaker 1 00:14:21 Of course, what, why wouldn't I want the question to be, well, why not? Instead of why? So we realized that that kind of, you know, social change was going to take a generation really. So we needed to do that at the same time. So, so Jean tickler the name ginger with those two, the first time that max came home from school and had enough language to ask for morning tea at tuck shop. And it was a gingerbread man and an apple juice. So that's where the ginger came from. And then the cloud, we see a cloud as they, every milestone a cloud in a blue sky is that stepping stone and celebration of every small success in Max's life to get you where, you know, as a family, you believe that you can go. So that's what ginger cloud means. So for all of our families involved, it's about a celebration of every milestone towards a vision about what amazing lives we believe out, our young people can have, because, you know, if when set, if we set the bar low, our kids will achieve it every time. But if we set the heart by the bar high, our kids will work to that in our community. We'll work to that. And we'll work together to be able to say, what is the best possible life that our young people can have and what kind of contribution can they make to our community ongoing.
Speaker 2 00:15:48 And so now the modified rugby programs played in numerous rugby clubs in Brisbane, the dialing dance, north Queensland, and even in the ICT, where do you actually see this program going?
Speaker 1 00:15:58 Uh, well, hopefully nationally. So we're looking at expanding in, uh, DACT this year. Uh, and we'd like to get into, um, Victoria. We've had some interest out of WWI as well, but vaccines, I had six countries say that they'd like to get involved in the MRP. Um, we were very lucky in 2016. So world rugby is like the global overarching body that runs rugby around the world. And we came second in their character award. They award that for, um, groups around the world who make a really significant contribution to rugby. So we're looking at sort of setting up a licensing model with the MRP where people around the world can access the drills. And, and the big thing that makes the modified rugby programs so different is we have a really specific allied health framework that sits in the backend. So, um, we profile each child when they come in, we ask parents to complete information about them, their need.
Speaker 1 00:17:02 So you imagine it know sort of a child with, um, a cognitive disability. So the modified rugby program has been specifically designed for children with autism asperges and learning it perceptual disabilities as well, and might have a secondary physical disability, but the majority of the modifications are cognitive. So it's things like sensory awareness, modified language. We have lots of visual supports and it's a shorter timeframe. It's, um, acquired a time when we do it. So we generally always play first up instead of having sort of 600 under sixes arrive at the same time. Um, and we try and play on the same field. We try to play on the same field that the clubs, because a lot of our kids, you know, have that if they've got balanced related issues, when they're younger, we're aware of the stipulate issues, um, sensory issues, but also the things just about the ability to be on a green pitch, um, with 15 other people and have a coach and have someone who's in charge is a big adjustment for a lot of our kids.
Speaker 1 00:18:10 That that's why it was so important for us to get them so early because to help children understand what a workplace is like, they need to start operating in groups, but in a really supportive, modified environment. So what makes the MRP so different is that every player with the learning of the sexual disability has their own player mentor on the field. And, um, because we've got four divisions. Now, the young people with disability are from seven up to about 25 now in the cults program. And then we have teenagers, um, from 14 to 17, so it's school, but now we have, um, player mentors who support our older children. You know, max is obviously now leaving school. We need to be up to support the older people as well, the, all the young adults. So we've got university students who support them. And a lot of the uni students, a lot of them are doing our T or they might be doing physio, or they're doing, uh, teaching.
Speaker 1 00:19:11 They genuinely have a passion for, um, inclusion and diversity. So they're getting to have this wonderful work experience whilst they're still at uni. Um, but for the schools, a lot of the schools now have, um, do service and the kids have service obligations. So we wanted to allow those young people who haven't experienced, um, say children, young, young people like max firsthand to have an experience about what it's like to support a person with a disability. Uh, and we train the plan tours as well. So there's a program that we call the disability inclusion, latest program, where in those early years, it's really all about giving them a language of diversity and inclusion and giving them simple ways that rather than, rather than just being inclusive, they learn how to actually do inclusion. Kids are worried about, oh, what words should I use? How do I support this person?
Speaker 1 00:20:14 Can I work? Can I touch them? Can I, um, what do I do if they don't understand me? Um, what, what happens if I can see that they're getting anxious, sort of what strategies do I put in place? So that's where our allied health framework comes in. When we are no longer here to support him. He'll he'll have, have had, you know, a lot of time that they are able to be independent and start making decisions. And the fact that for the NDIS that will continue across Max's life as a family gives you any credible, um, sense of it's going to be okay, because that's the greatest fear. You know, that all of that, all about families have, you know, we can do so much when we're here, but what happens particularly when we're not here. And the big thing for us is when we never wanted that pressure to sit with our daughter, we wanted her to be able to, he live her life, not to change her life, to have to be there for max, if she didn't want to, she may still want to, but it, her right to live her life as well.
Speaker 1 00:21:22 And, and I think this is in terms of understanding the NDA support ongoing. It gives families the ability to be normal. And when you haven't had normal, um, the value of normal is an incredible thing to think that that life will be okay. It will be okay for him. It'll be okay for Lara. We'll still do all the things that we do. But when we know that we are working through, into create the best opportunity for Max's life, that that he can possibly possibly have, and still for him to be able to make as much of a contribution in the community as, as he is able to within his capacity. And gosh, if, if we can have that, um, that's a pretty, pretty special outcome
Speaker 0 00:22:14 To find out more about the program, head to Facebook, look for the ginger cloud foundation or the modified rugby program. MRP. You can also check out what's on the menu by looking up ruggers restaurant that's R U double G ERs, many thanks to Fiona stewards for the interview in today's episode. Thanks for joining us a choice and control a carers Queensland podcast. For more information about the national disability insurance scheme or carers Queensland, contact us
[email protected]. You can call us on one, 300 triple 9, 6, 3, 6, or head to Facebook and look for carers Queensland and the IRS.
