Finding and safeguarding a job

In this presentation from the Safeguarding the future conference, Jan Kruger – Executive Director of Imagine More and mother of Jack – shares the employment journey her family has built for Jack since his teenage years, and the strategies they’ve put in place to safeguard it long term.

Jan traces Jack’s work history from a lawn-mowing business at fourteen to his current role as a receptionist at UniLodge, where he works five days a week on an award wage.

She shares the principles behind their approach – Customised Employment, Social Role Valorisation, and high-quality job support – and the practical steps taken to ensure Jack’s employment is protected when the family can no longer be there.

About Jan Kruger

Jan Kruger is the Executive Director of Imagine More, a family-led organisation based in Canberra. She has applied the principles of Customised Employment and Social Role Valorisation to help her son, Jack, find and maintain meaningful paid work.

Jack is a CrossFit member, CIT student, AFL Port Adelaide fan and UniLodge employee. Jan and her family continuously work to build Jack an ordinary, inclusive life in which he enjoys a sense of belonging as a valued member of his community.

Transcript

Please note that this transcription may contain occasional errors

Okay. Welcome, everybody. And welcome, Minister Stephen-Smith. Thank you for joining our session today. I am actually wearing my parent hat more for this session. And I’ve spoken with Jack, and he has given me permission to talk about his work journey and the way we’ve done that is by showing him a lot of the photos that I intended to use and talk through some of the key messages, and he was happy for me to do that.

So, for those that haven’t met Jack, Jack’s 21. He’s a CIT student. So for those from outside of the ACT, that’s similar to TAFE. He’s studying a Certificate III in fitness.

Even though a lot of people, you know, said that that’s not possible, we sort of knew that perhaps we just avoid those people. They weren’t going to be helping this cause. So he’s well into that. He’s a learner driver. He’s a world traveller. He’s a bike rider, CrossFit member and employee.

So all of these roles have come to fruition because it’s been part of Jack’s vision for life for many years. We didn’t know exactly what kind of job he was going to have, but we did always have in his vision that meaningful work was going to be important.

And the reason we decided to write this down is we came to understand when he was quite young that people had different expectations for him. So we always dreamt that Jack would have a similar life trajectory as his three sisters, but we knew that we were going to have to advocate and provide him with opportunities for him to take up these roles.

So we’ve written down Jack’s vision for life, which doesn’t change where he will contribute and participate through valued social roles, where he’ll have positive relationships, have that ordinary rhythm of life. So he’s not doing things at weird times of the day. It’s an ordinary rhythm of life where he finds that sense of belonging and where he’s valued and known in his local community.

But what does change and evolve over the years is the vision statement, and Jack is very much owning that now. But for years, that was sort of more about our dreams for him. But he still owned it, and he really understands and is quite proud of what he’s achieved in his life.

And he’ll introduce himself through his roles now. Something we’ve also added to his vision, that we’ve actually attached to his will, which I know is not legally binding, but it’s really helping spell out to people if or when my husband and I pass away, what we do want for Jack and clearly what we don’t want. And we don’t want Jack to be working or living in any segregated settings where he’s only congregated together with people with disability, and in particular, if he’s got no choice in that. It’s really important to safeguard his future.

There was no surprises for Jack when we started talking about employment for him, because it’s always been in his vision. So this is an example from when he was 12. And you can see there what’s highlighted is a career. So we weren’t naming what the career was. And we say we used the word ‘career’ because we didn’t want his first job to be his job forever. That’s not typical of young people these days. And we didn’t want that to be the same for Jack.

And also going to university is another goal for Jack, and we are exploring that at the moment. We’re hoping one of the universities in the ACT might sort of step up, as they have at Sydney University and Flinders University, where people with intellectual disability can still have that lifelong learning experience in a university setting.

So Jack has had many work roles since the age of 14. He knew that this was going to be really important, and when he was around 14, we’d heard someone mention that a really good indicator of someone sticking to a job is if they were quite good at doing household chores when they were young.

Now, my husband and I weren’t very good or consistent at giving our children household chores when they were young. It just was easier if we just did it. So that was not setting Jack up well for sticking to a job. So we thought.. we sort of panicked a bit and thought, right, what do 14-year-olds do to earn a bit of pocket money? And so he set up, with our help, a little, very, very small local lawn mowing business with his cousin. And it was another good way for his cousin and he to come together. So they would do the lawn mowing. It was a great way for him to learn the responsibilities of work, and then get that immediate reward with the cash in hand. And he was pretty good at charging, so they earned quite a bit of money, which was fabulous.

What then led on from there were various different work roles. And these have not just come about from our own family helping Jack with this. There are many important people in Jack’s life, and he’s got his immediate family, so his three sisters. He has a Circle of Support that have been instrumental in his employment journey, and he’s also got friends and work colleagues and neighbours that know him well, because we’ve been really intentional about Jack living locally, and for them to see him in those valued roles that he’s grown up with.

When Jack was about 15, we decided to have what we called the Discovery Gathering. We were starting to learn about Customised Employment, but this was sort of our best go at sort of how do we help bring people into this picture to help us find Jack meaningful employment.

And so what we did, we asked them to come to that gathering and share what they noticed about Jack, what he was interested in, what sort of conditions they thought would be really important for him in a work setting. And also, do they have any people they know in work settings that might align with Jack’s interests?

The young people in the Discovery Gathering suggested that Jack become a soccer game leader. Now, Jack had played soccer at the local club since he was four, and this was just not even on our radar. So we learned how quickly it was for Jack to do the two-hour practical course. And then we identified sort of how we could best get the support for him to be successful through freely given supports. So he did have NDIS funding, but we looked for the freely given supports first, and this sort of setting enabled that to happen.

He then got a school-based apprenticeship through one of the circle members’ contacts at the University of Canberra. Now the school had no ideas about Jack potentially doing an ASBA (Australian School-Based Apprenticeship). This is very much driven by us, but it was about finding those connections, suggesting the idea and pulling the people together to make that happen.

Then Jack started working at after-school care just before he finished year 12, and a real bonus of having that school-based apprenticeship was… In year 11 and 12, there are long holidays and on top of that are exam weeks, so there’s a lot of weeks that need to be filled. And he was able to continue doing his work that we broke in over two days. So during the school holidays and exam weeks, he had that meaningful contribution and a bit more rhythm to his week, which was excellent because the end of school comes very quickly.

Jack also got a job at Government House, and that was through a connection of a connection. But when people know you’re looking and they know how Jack could contribute to a workplace, and they also know how to positively introduce Jack. So they’re not introducing Jack, saying, ” Oh, I know this guy with Down syndrome that’s looking for work.” They’re not even mentioning his disability. They’re mentioning who he is, what he can contribute.

So at the moment, he’s exploring another job in fitness. So the job mentor would be describing Jack as someone that’s studying a Certificate III in Fitness. He’s got a real interest in teaching young people. He likes working one-on-one with people and also teaching in group settings. So you can see it’s a very different approach, and the likelihood of a workplace going, “oh yeah, I can see how that can work,” is very important.

When we were learning more about Customised Employment and we had a job mentor that was also learning about this, we decided to test it in getting some volunteer work. So we found a volunteer role for Jack where everyone there were in a volunteer role. It wasn’t like he was in a workplace and the only volunteer, so that was also very important.

Now he’s got a job at Uni Lodge, and that came about through yet again, another connection. So all of Jack’s jobs have come through connections, and they haven’t been our close ones by any means. But it’s about, you know, helping the Circle members know what you’re looking for and how they’re going to represent Jack when talking to friends.

When Jack started working at the University of Canberra, we didn’t really think it was fitting to actually look for freely given supports for him there, as opposed to like… on top of his work colleagues. He was still quite young and needed that additional support. Certainly wasn’t fitting for me to be there. So we engaged Julia, who had been previously working with Jack in other roles, and we proposed this to her because we could see that she held the high expectations of Jack. So she’d been working with Jack in that role for five years, and the way we went about giving her training was doing the two-day course of Social Role Valorisation.

Social Role Valorisation theory really helps us understand why certain groups in our society are devalued and what we can do to counteract that. And when Jack’s job mentor and other supports understand that, then they know what their role is going to be in counteracting. And it’s about finding, in this context, really meaningful paid work.

We also had Julia initially as a casual worker, and then she ended up moving to part-time. Sadly, Julia, after seven years of working with Jack, has moved on, but she still remains in Jack’s life, but just in a different way now. And we’ve recently engaged a young man, Sam, who was working with Jack as a CIT mentor, helping Jack with his study.

What we noticed about him was he really had those high expectations for Jack. He was standing up for Jack with it. Okay. He’s got those characteristics and that belief in Jack. Now we can add on the training around Customised Employment and bring him along so he can be his best mentor in that context.

The way we do that is we’ve got an induction pack where – an information pack – that describes the way we sort of directly employ staff, because we’ve got to choose which kind of busy we want to be. Do we want to be busy in engaging the right support, or do we want to be busy managing a service that are sending people that are inappropriate to support Jack?

So I think a lot of people are a bit nervous about directly employing staff, but once you’ve sort of supported through that initial onboarding and have everything in place, it’s kind of just managing the payroll, but also it’s working alongside the job mentor to actually help them really understand Jack, but also how to best support him.

So it’s ongoing, of course, but it’s so much more worth it. And as you can see, we seem to retain the staff for a long time. So we don’t have this conveyor belt of people in a paid capacity coming in and out of Jack’s life.

So, as I mentioned, we started using customised employment. What has helped us do is really pay attention to not the immediate interests of Jack. So Jack, probably similar to all of us in the room, loves music, like he has to listen to it every night. He also loves the family dogs, but he doesn’t do any chores around the family dogs, so we didn’t explore anything in either of those interests. What customised employment has helped us do is look deeper. So we’ve noticed that whenever Jack hears the mailman, he knows the mail’s arrived – he’s happy to go and get it, and he loves giving… it’s usually bills, so it’s usually just my husband and I, you know, he would always be keen to do that.

He’s also really keen to engage people. We sort of got a footy tipping with AFL. Loves talking to people about who’s playing who and recruiting them onto his team. So there’s something in that that we’re going to be exploring.

We’ve also noticed when he has gone to protest, he ended up leading the chant at the climate change and was like, okay, and he’s done that when the Matildas were playing as well. So there’s also something in that activism.

He loves making his own spices, and he also is a gamer and loves sort of teaching other people. One of his mentors mentioned, I’m going to look into this Minecraft, and by the time she got home, he had rung her three times and left a message on how to get into it and what to do. So there’s something in there as well that we need to explore.

So, a way of not losing all of this is by capturing it in a Discovery record. It’s not the most current record that we’ve got, but what it does is it helps us remember what the interests are because we might want to come back to it. It also helps us identify what are some conditions that are really important for Jack to succeed. This often gets forgotten, and it’s probably one of the most crucial things.

So for Jack, one condition is he does have to work alongside other people. If he’s off on his own, it is just not going to work for him. And of course, capturing what the contributions would be. So how can he contribute to a particular workplace that you’re approaching? So we gathered all that information through Discovery that is ongoing.

And we’ve captured it in a visual resume because sometimes people need to see it to believe it. So we capture photos of Jack actually doing the task. So he’s not looking at the camera. He’s certainly not looking at the camera with his thumbs up. He’s doing the task. So it’s just one photo per slide, but it demonstrates that Jack can do the job.

When we’re looking for work roles for Jack, we’re always trying to look for the most valorising role. We don’t want Jack in a stereotypical role for people with disability. We like that element of surprise in a person. So I remember when Jack would tell people that he works at Government House. You could see the change in them. Their expectations of who Jack was and then how they would engage with him really changed.

So we’re always looking for those valorising work roles for Jack.

So when we decided, when Jack was working at Government House, he wasn’t getting many shifts. So we started exploring another work role for him, somewhere closer that he could actually commute to himself. Government House is not very easy to get to. There’s no public transport. He relied on others to get him there, and it was probably too far to ride, even though we thought that was a good idea. But he didn’t.

So we followed up on the collecting mail and delivery theme, and we approached Uni Lodge, where we had a contact, where it’s student accommodation at ANU, and it’s also very easy for Jack to get to on the bike paths. So I emailed James, and I met with him, which is probably still not ideal. But you know, maybe I’ll be letting go of that soon, where it’s not the mother meeting with the workplace, when we’ve got confident job mentors, that’s when perhaps I’ll hand that over. What could possibly go wrong?

But I met with James, and it was really interesting because he had the job description on the table. But then, when I started showing him what we were there for, about customising a job, he physically picked up that job description and put it to the side and went, “I’m really interested in this.” We’ve got some little brochures here where families can introduce this idea to workplaces without having to describe it themselves, because it can be confusing.

But Job Development to me is the best safeguard in getting a job, because if you get it set up right, then it’s more likely to last. So, what Julia was looking for when she went into Uni Lodge… you’ll be grateful to hear that I didn’t do this. I did hand over to the job mentor. She spent time in the workplace to really understand all the different tasks going on in the workplace, and which one would really align well to Jack’s interests and where he could best contribute. So it’s a win-win.

There was no mention of a supported wage system. He’s always had award wage when he’s in any of his jobs, and customised employment would always approach it that way. You’re always expecting award wage.

This is really very brief. There’s quite a lot more detail into how Julia went about finding the job, but the job was negotiated. Jack signed the dotted line, and he started there as a customer relations/ postmaster role. So he handles all of the online shopping, basically, of all the students that was just piling up in the reception areas. So he’s helping take that pressure off the receptionist in processing those parcels. It’s not just a case of just handing them over, there’s a process that needs to be in place.

And then he’s also delivering the parcels to the students and engaging very much in the reception area with the other staff. So he’s always working alongside somebody else.

He’s working five days a week. So lots of time to practise and really master the tasks. What was really important is to pay attention to Jack’s image and his competency. So, a well-fitting uniform, he’s got the same security pass, he’s getting to and from the work himself every day… He’s learning the job, on the job. No readiness, he’s learning it on the job.

He’s mastering the tasks. And the job support is making sure they’ve got the most minimal impact. Because we know that this is a really nuanced job that just has not had the training and attention in a lot of the services that it requires. But we make sure that we train Jack’s staff really well to understand just their sheer presence in that workplace will have an impact on how Jack’s seen as an employee there and work colleague. So we work really hard to make sure that impact is lessened.

What’s important, though, is to make sure that the job support still exists because Jack has lost jobs previously – it was actually a volunteer job. I don’t know how you quite lose a volunteer job, but you do because we were not going to put the support in their full-time. We wanted to rely on the work colleagues to provide that support and training. You certainly don’t want the job support doing any of the training. You need the work colleagues doing that because you get consistency, and they have that ownership over that.

But the job support does need to go in and ask those nuanced questions. So it’s not just a “How’s Jack going?” because you’re usually going to get a “Oh, he’s doing well”, even if it’s not. So if there’s a new job starting or new task, ask, “How’s he going with that? How’s he engaging with the students? Is there anything we can help with?” So you’re kind of just that problem solver walking alongside the workplace, but it’s very much about being a chameleon.

So 18 months on, Jack’s role is growing because the job support is always looking for new tasks for Jack to take up. He’s a valued employee, his image is great, he’s mastering the tasks, and we’re problem-solving in partnership.

So we work really closely with Jack’s supervisor, and they are completely on board. They’re not surprised if a problem arises. They’re willing to work with us and work through it.

So just to finish, just some tips on safeguarding a person’s job and career is vision. If you haven’t heard it already and you haven’t started writing down your vision, start writing that down so then you can pass that on to other people.

Find your warm leads for workplaces, but know your boundaries as a parent. I’m still working on that. But no, I am very mindful that really it only has been that initial contact.

Make sure that when whoever’s representing your family member they go with a positive introduction. I would get them to script it. I would want to know exactly what they’re saying, because we’re so conditioned in our society to start with the diagnosis, and we certainly don’t want that.

Pay attention to the conditions for success.

And we’re also increasing Jack’s skills in asking for help.

Some practical tips… We’ve set up a WhatsApp app for Jack’s mentors for communication, but we also have Jack’s sisters on that WhatsApp. So whilst they’re not necessarily engaging, they can still see what the conversations are like and what’s happening in Jack’s life.

We’ve set up a company to employ Jack’s mentors, and the sisters are directors on that company. And we’re still figuring this out, but we’re setting up Google folders where all of the notes and induction and everything like that sits. So then if anything happens to my husband and I in the next… tomorrow, our daughters have access to that. So they’re not just starting from scratch.

We’ve previously included our daughters in NDIS plan reviews. Remember those days when they used to happen? And so they sort of can see how we hold ourselves in those kinds of meetings. So it’s important that it’s not brand new if they ever have to do that in the future.

And of course, inviting others in to support Jack’s vision for a good life. Jack’s Circle of Support is now working with us in getting ready for Jack to move out into his own place in September. So it’s not about letting go completely, but it’s about bringing people in and letting them in.

So thank you.