Episode 4 – In the Name of Our Brother

Speaker 1:                        Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters, Dr. Lisa Interligi and Kristine Christopoulos and their guests on sharing experiences, information and support ideas to help children with disabilities flourish. Loop Me In is brought to you weekly on platforms like Apple Podcasts, Spotify and Stitcher, to name a few. You can learn more. Connect with the Loop me In community and listen to more episodes on our website, loop-me-in.com.au.

Lisa:                                  Okay Laura O’Reilly, thank you for joining us today. We’re really excited to talk to you and about your experience, particularly in setting up multiple companies, I understand, Fighting Chance and Jigsaw, and I understand you’ve got accommodation too in Sydney, and really to understand your journey and what you offer and what advice you can give to our podcast listeners. So welcome.

Laura O’Reilly:                 Well, thank you for having me.

Kristine:                           Laura, your brother and yourself started higher up. I think it might have been 10 years ago now.

Laura O’Reilly:                 Yeah. So Jordy and I, we started Fighting Chance 10 years ago, so it’s a bit confusing, we started all these different things and there’s names of businesses going everywhere. But yeah, we started Fighting Chance 10 years ago, very much directly as a consequence of seeing our… Myself and my brother Jordy, with the co-founders of our organizations, we had a brother called Shane who had cerebral palsy. So the work that we started with Fighting Chance in 2011 was very much a direct response to seeing Shane’s, particularly his post school experience, and the lead-up to leaving school, and how stressful and hard that was for our family, and really scary of what was going to happen next for Shane. And then watching all of that unfold. And so that really was the genesis of seeing if we could jump in and start an organization and try and make a difference in the space.

Lisa:                                  How old were you when you did that?

Laura O’Reilly:                 I was, I think 23, I think, 24, something like that. So I had just finished my undergraduate studies and actually in the UK, I was studying in England and came home, was planning to perhaps sat my law degree, had all these plans to be a lawyer, had been my goal since I was very young. And Jordy, my brother, was studying occupational therapy. And then Shane, the youngest of the three of us, he started to get to 18, 19, approaching end of school. And he actually finished school and went into a traditional day program type structure.

Shane had a profound physical disability and a moderate intellectual disability, so needed assistance with all of the various occupations of daily life. But he really wanted to work. He was very computer literate, very tech savvy, loved the internet long before I really even understood what it was all about, and he wanted to work. But I think because he had a profound disability, society really was saying, “Nope, you’re not going to work. You’re definitely going into the community participation stream, post school.” He joined the day program, doing recreational activities that he would fall asleep in his wheelchair from boredom, and then he’d come home and he’d go into his room, and he ran a little a website providing antivirus software advice. Because that was one of his passions, antivirus software. So I guess, from our perspective, it was just watching this process as young adults ourselves, watching all of Shane’s abilities, interests and potential, and the potential that he had as a young adult to contribute meaningfully to society, to the economy, watching society say, “No, no, you’ve got a disability, you’ve got a profound disability. That means that for you, there’s day programs.”

And we just felt like that’s nonsense, and it’s so unfair and it’s such a waste of his abilities and talents. So watching the process crush the spirit out of him, we just thought… Very young people, very naive, no idea what we were doing, but we thought, “Well, let’s just jump in and see if we can have an impact.” And that was really the start of Fighting Chance and our social enterprises and then higher up a bit later on. Yeah.

Kristine:                           Well it’s an amazing organization and Lisa and I are at the same position at the moment, both our boys are 21 and they’re in a day program and we feel the same, like, “Is this all there is for them? And do we just leave them there, or is there potential for them to be somewhere else?” I was going to ask you, what are the challenges that you’re facing when you’re going… So explain to us what Fighting Chance is, what do you do there?

Laura O’Reilly:                 Right. Sure. So Fighting Chance, very much facing Shane’s experience, Fighting Chance’s, I guess, vision, is a world in which people with disability are fully included. That’s the vision, that’s really straightforward, right? Shane had every right to work and contribute to the economy, to be participating in society, to be living independently. That was a whole nother thing, which we can talk about a bit later. And we just saw society was like, “Nope, Nope, Nope. You can’t, this is a little box for you, that’s it.” And we just, like I said, saw how crushing that was for him.

So Fighting Chance’s mission is about creating an Australia, a world in which people are fully included. The way that we actually achieve our mission or we work towards our mission, is by creating social businesses. I believe really passionately that people with disability don’t need charity or benevolent niceness. People need an opportunity. People need to go, and it’s businesses that create that. So we work through business.

So what Fighting Chance does, is we identify a problem. So that might be a lack of employment opportunities. “Great, there’s a problem. Let’s create a business that will trade, earn its own money, earn its own revenue, but trade in order to solve that problem.” And what Fighting Chance does, is we incubate that little fledgling idea, grow it up, support it, and hopefully get to the point that, a little bit like a child leaving home, that our social businesses that we start under the Fighting Chance umbrella eventually get to the point that they, you’re good to go, you’re really well set-up, functioning business, solving a problem in the community. You go and succeed, and meanwhile, we go back to the drawing board of like, “What’s the next problem?”

So I guess it’s an incubator, I guess, of social businesses that move the dial. So to date, we’ve started four social businesses, Avenue and Jigsaw being, I guess, the most established, I would call them teenagers, in the baby to adult analogy. Jigsaw’s is probably, which we’ve just opened in Melbourne actually, is the most well developed and is fairly close to being spun out on its own, Avenue the second. And then we’ve got two little baby social enterprises, our accommodation business is just getting some traction, and then we’ve got a life planning, social enterprise called Brady, which is very much in development.

I guess maybe if we talk again in three years time, all of those will be out the door and there’ll be another four on the table. It really is sort of a conveyor belt of ideas and businesses, but critically businesses that create a new opportunity or an opportunity for inclusion for the community. That’s what we do.

Lisa:                                  I think that any parents particularly if you’re leaving school, or contemplating their child leaving that education setting, whatever that is-

Laura O’Reilly:                 Yes.

Lisa:                                  … having an idea of the capability of their child to go to whatever setting it is, how do you know their potential? And it might sound a dumb question to ask for somebody who’s done these amazing things and saw that potential in your brother, but sometimes you’re really protective when you’re a parent. How do you see it? What would you tell parents to look for?

Laura O’Reilly:                 It’s a really good question. I mean, I think one of the things I would say is that, well, firstly, I guess starting from what I believe passionately, what I’ve seen, is that every single person can work, without exception. I’ve not seen any single exception to that. And I’ve also seen that it’s really important for the vast majority of people’s self worth and happiness to be contributing and to be giving. I think it’s a really essential part of our humanity to be able to not just receive, but to give. And working and contributing is really important to that. And in my experience, absolutely every single person can do that. And I can maybe tell some stories that flush that out, but within our social enterprise avenue, we support people with very profound and severe disability to be able to work in a way that works for them. And I can, like I said, talk about that more.

So I think that’s the starting point. So I don’t know if people need to… I guess this notion of like you need to look and you’re kind of comparing to the typical able… We live in a society where things are set up, that if you can work the same way that a typical able-bodied person can work, if you can be that 50%, “Oh, you’re good.” But if you’re not, then you know, it’s other. And I guess our mission is about saying that’s nonsense, dichotomy, right? Society is full of diversity. That’s fabulous. Everyone should be able to participate equally as aligned to their abilities and skills.

For us, the question… So we run two social enterprises in the workspace, Avenue and Jigsaw, and I just touched very briefly on the difference. Jigsaw is designed for people whose goal is mainstream employment, who wants to work at nine to five, $25 per hour job. Jigsaw is designed for that cohort. Jigsaw is a business. As I mentioned, just opened in Melbourne recently. Jigsaw trades, we have over a hundred corporate and government clients doing digitization and data management work. And then we engage people with disability in three processes within that business. [inaudible 00:10:38] a training function. The guys come in as trainees, and they’re not paid at this point, they’re actually paying us with their NDS funding. But they spend usually about a year training in the business, building up work skills in that just business setting.

The second step is then transition to a paid training where we pay the guys for their work out of board wage, and people get usually about a year to two years of paid work experience on their CV. And then the third step is then to transition out into mainstream employment. And we support that process once someone’s all trained up and they’ve had a paid job on their CV to support that transition out. So that’s what Jigsaw does.

The other enterprise is Avenue. Avenue very much was the first thing we did. It was built around my brother, Shane, a person with profound disability. Avenue uses self-employment, micro enterprise, the sharing economy, to create opportunities for people to work really flexibly. So to give an example of that, we’ve got a participant at Avenue, team member at avenue, who has got a very profound physical disability, nonverbal, he has a lot of of seizure, for example. So most people meeting this young guy would say, “Oh, you can’t work. ” We say, “Nonsense, everybody can work. What’s this young man’s ability? What’s his strength?” And he loves, turns out, going for walks around a local lake. So it’s like, “Fabulous. Let’s see if there’s any dogs that need to go for a walk.” And tie the dog to his chair. And the support worker can push him along, but this young man can get paid for taking the dog for a walk.

So I guess the point is, back to what I said before, everyone can work. The question just where is it best? And the way that I always say to families when they’re thinking of that with our different models is it’s really, if your person’s goal is mainstream employment, then Jigsaw’s the better pathway. But if your person’s maybe not aiming for mainstream employment, as Shane wouldn’t have done, but is aiming for much more of a tailored, individualized way of working, then Avenue’s the better solution.

So it’s really that question, it’s about, “Where do you fit?” And, “Which is the best support model,” I guess, is probably a better way of saying that. Rather than, “Can you or can’t you?” Because in the right supports, everybody can. Does that answer the question?

Lisa:                                  Yeah, absolutely. I mean, I think that that’s fantastic, really, it’s matching capability and passion-

Kristine:                           Yes.

Lisa:                                  … with employment opportunities, it’s job matching, it’s fantastic.

Laura O’Reilly:                 Totally. And that’s exactly what Avenue does. Avenue is a really strength-based thing that’s, “Who cares what you can’t do, not interested. What can you do?” “You like going for a drive. Fabulous. Do you want to register on Deliveroo and do deliveries?” “You like to walk,” as I mentioned before, “Great. Let’s do dog walking.” “You’re really into fashion and you really like colors and textures. Great, let’s start a social enterprise importing products and selling it.” So I guess the point is what Avenue does, I guess, is invert the traditional [inaudible 00:13:37]. Because traditionally, it’s like, “There’s a job that needs to be doing, find someone who can do a job.” Avenue inverts that and says, “What can you do? Great. Let’s work out how we commercialize that.” And yeah, I’ve yet to… I mean, there’s only a very small group of people who really can’t… Generally because they don’t like it. They prefer to do something more recreational, whatever, but it’s very… Yeah, that model can work for everybody, for sure.

Kristine:                           And I think you’ve just answered a question I had earlier, because I was talking to Lisa about Matthew and Louis coming to Jigsaw, now that you are in Melbourne. And I said to Lisa, “I don’t know if Matthew would be able to cope, doing something like that.” But then you’ve already covered that in the Avenue. So hopefully that will come to Melbourne as well. Because Matthew, I guess, is in the middle of that. He’s capable of some things, perhaps not capable of being independent. And I think that’s fantastic that you’ve been able to look at both sides of that.

Laura O’Reilly:                 That’s the other thing, is that like with Shane, it was like at 18, I mean this is pre NDIS, but with Shannon was like, “Okay, school’s finishing, you are either community participation funding or transition to work funding.” And then you go, you the funding and you go into that and then you’re there for the rest of your life and then you die. Right? That’s how it was before.

Lisa:                                  Yeah. And that’s how it was, yeah.

Laura O’Reilly:                 And how we think of it is like, “No, it’s a spectrum.” People can start in Avenue and do that and build some skills for a year, and then they transition to Jigsaw and build some skills. Actually at Higher up, which is a whole nother one of my businesses, but the guy that works at Higher Up now, who started in Avenue, did a few years in Avenue then went to Jigsaw and now is working a couple days a week and just a standard role at Higher Up. So we all flex and transition through our lives. And so I guess the idea of having multiple things that we do is you find your space that works for you best now, but it’s not final, right? You people’s goals and where they want to be, can evolve.

At the moment we have Avenue and Jigsaw in the employment space, we’ve got about four other ideas of business models that could be great, that hopefully, like I mentioned before, we can eventually get to execute on. Because it has to be lots of choice for people to find the thing that suits them the best. At the moment, this sort of one-size-fits-all day program model with very same type of activities that everybody does. And in my view it’s not good enough.

Lisa:                                  How do you prepare your clients or your people to work? And what are the things that you do in your training program?

Laura O’Reilly:                 Do you mean with Avenue or Jigsaw or both?

Lisa:                                  Both, yeah.

Laura O’Reilly:                 Yeah. So I think the first place to answer that’s probably Jigsaw, because Jigsaw is a training program, training people for mainstream employment. So at Jigsaw, we have a curriculum, I guess you’d call it, of 20 employment competencies. Jigsaw is of itself a business. So like I mentioned before, it does document management, digitization work and data management work. We always say we’re not training anybody to be really good at any of those processes. My first job was in a cafe. It’s not about that. It’s about a generic type of work where people can learn generic work skills.

So those 20 competencies that I mentioned before that are in the curriculum, they’re things like time management, dealing with conflict, communication, reporting to a boss, all those generic skills that people have to attain to be able to really thrive in the workplace.

And often we see, because people with disability have very low expectations from when they’re young, coupled with then not going on the school work experience, coupled with not getting the cafe job when they’re 16. So people often get to the point of going to their real job without having had those opportunities to build those skills. So Jigsaw is about creating the environment and with the curriculum that we have, of supporting people to retain those skills. That’s part of how we train the guys.

The other part of it is yeah, the work experience. I’m a really big believer, I guess my personality, that you just learn on the job. I did a law degree. I could never be a lawyer, right? You have to go and actually do it to really learn how to do it. If I quit my law degree and tried to do anything in the law, I’d be a disaster. So my point is that second step of our Jigsaw process of, you do a training in those 20 competencies, but then you go and you actually have a job and you actually get paid and you actually have to set up super and you actually have the pressure of being required to perform. And you actually have to do all these things in real life, I think that’s actually the most fertile part of the process for people, and funnily enough, is the big piece that’s most missing from the current status quo system where there’s lots of training that happens, but not very much practical experience. So yeah, I think that’s the other big component of how we prepare the guys to then be ready for the final step of the Jigsaw journey of going out there.

On the Avenue side, we don’t really do much to prepare people. Like I said, it’s much more based on, “Who are you? What are your skills and abilities? Fabulous, that’s all you need. You don’t need to change. You’re all good, but just bring what you love and bring what you can do, bring your strengths, and we will then wrap that into a commercial outlet for those strengths.” So yeah, again, different models, different ways of working.

Kristine:                           And also Laura, how have people’s attitudes changed over the years? Because I know your mum, probably, bringing up a child with a disability, it’s very different for her to see the comparison from then to what’s going on now in the community.

Laura O’Reilly:                 Yeah, for sure. I mean, my mum tells unbelievable… So Shane, my brother, was born, I think 1989. Right? So extremely recent. And my mum tells stories of in the early nineties of my grandma saying, I guess when Shane got his diagnosis and stuff that, “Well, what you do with kids like Shane is send him to The Blue Mountains. There’s places to send… ” And it’s like, “That was the nineties. That is [inaudible 00:20:01].

Kristine:                           Yeah.

Laura O’Reilly:                 … to me. So I think in that regard, lots of things have obviously changed for the better, fabulous. Having said that, Mum’s told me stories of taking Shane to primary schools in Canberra in the nineties, and the kids with disability would just sit by the window and watch the able-bodied kids play at recess, that kind of stuff. And I guess in some regards, actually we probably haven’t changed that much in terms of inclusion as we should have done, right?

Kristine:                           Yeah.

Laura O’Reilly:                 People are still… I mean, admittedly, I would be surprised if there’s any schools doing that these days, but my point is that we still haven’t fully… Shane still left school not that long ago and was told he wasn’t going to be able to work or do anything. But I think this is where, for me and my brother, Jordan, this is where our view is, “Okay, well, if it doesn’t exist, let’s build it. If it isn’t there for Shane, then we are going to do it.” We’re not just going to go, “Oh, well, the world that should exist doesn’t yet exist. Boohoo.” We’re going to put our shoulders to the grindstone and try and build it. And that’s definitely, I think that’s my personal, what I want to do with my life, is build the world that I wish had been there when Shane left school.

Lisa:                                  So Shane actually has shaped you and your brother in your lives. What is it that you think, beyond being obviously very determined and very creative and innovative, what sort of things as a sibling, do you think, having a brother like Shane gave you?

Laura O’Reilly:                 Yeah, that’s a great question. I get really emotional about it. I remember looking, as a younger child and as a teenager, I remember there were really hard aspects of being a sibling with a disability, especially Shane was the youngest in the family. So there was lots of… Like, I remember coming home from school when I was like eight or whatever, and there’d be no one home, because my parents were at therapy with Shane. Or there was a lot of, I guess, stuff that, at the time it felt like we’re missing out on. But with the benefit of hindsight, looking back on it, being Shane’s sister’s the most extraordinary honor of my whole life and has shaped me… I’m emotional. Shaped me more than anything, any other relationship in my life.

And he just gave me the opportunity to see a world and see things that were happening to people that were unjust, that I would never have been able to see if it wasn’t for him. So I’m just so grateful for, I guess, being able to see through hi eyes. And I guess, yeah, I have the great honor now of doing work that I hope makes a contribution. That’s all because of Shane. So yeah, I’m enormously grateful to him. Sadly he died about six months after we started all of this work. So, sorry, that was my phone. Yeah, he died six months after we started all of this work. So he didn’t get to see it all come to fruition, but there’s been a number of times where we’ve been an inch from a disaster or an inch from financial collapse or whatever and some miraculous thing has happened. It’s happened multiple times. And I just think, “Okay, that’s Shane [inaudible 00:23:39]” Yeah.

Kristine:                           Yeah, absolutely. He’s a part of the journey with you.

Laura O’Reilly:                 Yeah, for sure.

Kristine:                           Because I think Lisa and I both have older children and I’ve got a younger one and I feel the same. My daughter became a speech pathologist, based on the same idea as you know. He gave her that… Growing up with a special needs brother obviously has its challenges, but she found a career in giving something back-

Laura O’Reilly:                 Right.

Kristine:                           … in that community. So yeah, well done to you and your brother, because it’s amazing what you’ve both done for people with a disability.

Laura O’Reilly:                 Oh thank you. Yeah, no, we love it. It’s such an honor, it’s such an honor to get to go to work every day and not be working, and be impacting people. And you know, at this point at scale, Fighting Chance supports about a thousand people and we’ve opened now in Brisbane and in Melbourne and we’ll be opening in the ACT in Adelaide fairly soon. And I mean, Higher Up’s, a whole nother kettle of fish. Higher Up supports… Over a hundred thousand people are registered on the platform, support workers and people with disability at this point. So yeah, it’s nuts from where it started to where I think where it’s gone. But yeah, again, that’s, for me, that’s my bro watching over it and helping things to grow.

Kristine:                           And I think with Higher Up too, it sort of changed the way we saw carers. I know it did for myself. Because I always thought of a carer as someone that was like me, my age group coming over and looking after Matthew. And then when I jumped on your website many, many years ago, I thought, “Oh, okay, well, I can choose someone that likes to play soccer with Matthew, hang out at the movies. I can actually pick someone that will suit his personality and they’ll probably be around the same age as him.”

Laura O’Reilly:                 Right.

Kristine:                           It definitely changed the way we looked at carers.

Laura O’Reilly:                 Yeah, yeah, for sure. And I mean, again, that was just Shane. We just saw in Shane’s life when, in the old days of like home care and whatever, when you had no choice and the government would just send someone to you. When you opened the door and it was like a young male with a souped up car in the driveway or someone who mentioned in the [inaudible 00:25:59] is they like computers or whatever, you’re like, “Fabulous. Shane’s going to have the greatest Saturday,” whatever. Versus when it was someone who just was not his age demographic or whatever. And you just think, “Oh God, like what are they going to do all day?”

Kristine:                           Yeah.

Laura O’Reilly:                 So just saw the massive difference that the right support worker has on a person. Right? And so the thing with Higher Up is all about like, “Okay, great. How can we put the power of choice into people’s hands to choose the right supports for them?” That’s that’s what it’s all about. Yeah.

Lisa:                                  How do you prepare employers? You’re talking about Jigsaw and transitioning the people who are participating in Jigsaw to full time work when they’ve finished their training, how do you prepare employers and what would you say to them if you were talking to them about taking people on?

Laura O’Reilly:                 It’s a really interesting question, because I think that the current status quo system of the disability employment services, the agencies sending people to employment and then, as many of your listeners will probably know that there’re being a 90% failure rate in the first 12 months of people who are placed into employment, retaining a job. There’s a whole host of issues wrong with that. But one of them is the damage that does to the confidence of employers who have… I guess maybe they, and they’re not aware of disability and they’ve gone out a limb, so to speak. And then it all falls apart because it hasn’t been set up right. And then those people are burnt and then they’re out of the system.

That, for me, was one of the things that was… I mean, there’s many issues to resolve, but that was one of them. And so I guess in our model, how we resolved that, is that middle piece of the model that I mentioned that training is the first element. The second element is we employ our guys at [inaudible 00:27:48] wage to do work. And in order to do that, we have clients, employers, who give us work to do on a contract basis, I guess. They outsource work to us that we do in our location.

But that relationship, that over time, those employers seeing high quality work coming back, or them coming out and having a meeting with us and talking to our guys and getting to know people, or building personal relationships, but critically seeing high quality work being delivered, is for me a really important aspect of the model to set the scene for then that transition. Because employers have had the chance to really get to know the cohort and what they can do and you know, and all that stuff. So it just makes it much more… by the time it’s the employee’s really skilled and able to transition, then we say, “Well, why don’t you take your work back in house and take the employee with you,” type thing. It’s just as much easier conversation.

But I mean, that’s only part of it. We do also transition our trainees to jobs with employees that we haven’t worked with in that way. And so I guess it’s just about providing longterm support and assistance with the relationship. And again, it’s a bit… The Des model has a timeline on how much support is provided. We provide support ongoing and just really to equip the employer, have the conversations about what they need to know, helping being really present while the person’s going get transitioning in, just all of that help to support it through.

But I mean, as I mentioned before, the rates of failure in the traditional disability employment service model, like I mentioned, about 90% within 12 months. Our model is, at this point, I believe, I haven’t had an update in the last few weeks, but last time I heard a hundred percent of our employees who we’ve transitioned have stayed in their job.

Lisa:                                  Wow, fantastic.

Laura O’Reilly:                 I think just shows that if you prepare people properly to start with, then you don’t actually need to do that much on the… then the transition manages itself, right? But it’s that piece of really setting people up for success with the long, deep work that has to happen to get someone job ready, genuinely job ready. If you do that well, then the rest of it flows.

Lisa:                                  Okay. Well look, I think we are so grateful that you exist in the world, and we are so grateful to Shane actually, because maybe this wouldn’t exist if it wasn’t for him. And for us, it’s really heartening to see that there’s opportunities for our sons, but also young adults coming out of our school and having the opportunity to have employment. And as you said, feeling like they’re contributing, is a basic human right, I think. And so it’s fantastic. We really appreciate it.

Laura O’Reilly:                 Yeah, my pleasure. Thank you for having me.

Kristine:                           We thank you so much, Laura.

Laura O’Reilly:                 It’s been really fun. Thank you. And I am going to go back to the team with the… We’ve got to get Avenue to Melbourne faster. Let’s put up for [inaudible 00:30:55].

Kristine:                           Yes, that’s what I was just going to say. Hurry up, because Matthew you’ll be the first one there.

Laura O’Reilly:                 I’m on it. I am on it.

Lisa:                                  Okay. Thanks Laura.

Laura O’Reilly:                 Thank you.

Kristine:                           Thanks Laura.

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