What happens when I cark it?

In this presentation from the 2026 Imagining Home conference, Linda Hughes shares what she has learned from years of grappling with the question that keeps so many parents awake at 2 am: What happens when I’m gone?

Linda is a disability advocate and proud mum of Jacob, a 31-year-old toastmaster, homeowner, beer-maker and lover of modern art, Melbourne and cricket.

She reflects honestly on what is still a work in progress and offers practical starting points for families at any stage of planning.

About Linda Hughes

Linda Hughes lives and works in Newcastle. She has a long history as an advocate in the disability sector and has been immersed in the NDIS since its launch in 2013. Linda is the proud parent of Jacob Hughes, who has a disability. Jacob lives in his own home, which he shares with a housemate and has a Circle of Support that helps him with decision-making, thinking, planning and taking action. Linda shares her ideas and tactics generously with others through speaking and writing.

Transcript

Please note that the transcript provided may contain occasional errors.

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What happens when I cark it? This is not a talk about what happens in the afterlife or in the spiritual realm. It’s really serious. It’s actually really hard to face our own mortality.

So, forgive me if I am a little bit irreverent at times because it’s just a way of easing the tension in thinking about what the hell happens when I die. And you know, most of my time, and I gather many of you here as well, you know, focus on this or your main time of thinking about this might be at 2:00 am in the morning.

I just want to acknowledge the traditional owners of the land of which we’re on, the land of the Ngunnawal people and pay my respects to elders past, present and emerging.

So I’m going to start off with, you know, a little bit about Jacob. This is Jacob, he’s my only son, and he’s 31 years old. Yeah. He’s a toastmaster and a presenter. He’s got a strong sense of social justice, and he’s very interested in politics as well. He loves travelling, and he particularly loves Melbourne. Like that’s his favourite holiday destination, despite the cold, which he doesn’t normally like.

And he loves modern art in particular as well. So he really enjoys going to exhibitions when their focus is on modern art, particularly as goopy paintings and things like that. Or graffiti.

He’s a beer maker; he’s decided that it’s one way of making friends and influencing people is to make beer, and people come along. And it’s really good. It’s actually really nice beer, I have to say. I’ve always thought homebrew would be yuck, but it’s actually not too bad.

He’s a host and a homeowner. He lives in his own place, and he loves nothing more than having a gathering, a ‘drinks on the deck’, which happens periodically on a Friday night at his place.

And Jacob is a cousin, a grandson, a nephew and friend, and he’s got lots of people who love and care about him around him.

And he’s my son. I’m his only parent, and he has no brothers and sisters. So the idea of the future has always been kind of there on my mind. It is just me.

Jacob, he does have a disability, which really impacts on his movement, his communication, his independence and autonomy, and it also impacts on his health. He has, you know, fairly high and complex support needs and needs a bit of help pretty much for most things throughout the day and sometimes through the night.

So as I said, I’ve spent many a day or night, waking in the middle of the night, wondering what’s going to happen when I cark it. I’m going to take you through three poignant moments in Jacob’s and my journey. And there are moments which are a bit like a slap in the face with a wet fish. You kind of go, wow, what’s going on here? But they really were helpful in some ways, bizarrely in shaping some of our thinking.

So let’s start at the very beginning. This very, very cute little bubba. This is Jacob when he was really young. And this is the poignant lesson number one.

He was about 18 months old, and I really needed to return to work, just, you know, part-time. I needed to earn some extra income, and I needed, you know, a bit of adult stimulation as well, I’d say. Anyhow, I went looking for childcare for Jacob and, you know, calling up childcare centres.

And the moment I mentioned that he had cerebral palsy, I would get, “But we’re not wheelchair accessible”, which is pretty remarkable for an 18-month-old child. And you really made me wonder about the athleticism of the other children that were going to the centre, really. Or maybe we were being fobbed off. Maybe we were being rejected, or Jacob was being rejected, all wrapped up in weak apologies and platitudes around access.

But then things got weirder. This beautiful little bubba here. So I keep looking at him going, oh my gosh, how could things get weird for this little kid?

A social worker took Jacob and I along to Grosvenor Hospital, which was a large institution in Ashfield. And instead of childcare, we were offered respite, where Jake could go two or three days or nights, two or three days and nights, or more if we wanted, a week, in this institution.

And it wasn’t a childcare centre. It didn’t look like a childcare centre. There were other children there when we visited in bed awake during the day. There’s nothing about it that really represented a childcare centre, but it was what was being offered to Jacob. And at the time, I thought if Jacob was not disabled, if he didn’t have a disability, no one would suggest this was okay for an 18-month-old.

And yet my kid, who is more vulnerable, I could recognise it at that point. Even though he is more vulnerable, this is what is being suggested. Like, holy heck, what’s going on here?

So I didn’t choose to go to that institution. That was really poignant. Was like, wake up, Linda, what’s going on here?

Around this time, I came across Family Advocacy. So it was fairly early in Jacob’s life. And I began to hear from other parents about other ways of doing things.

But importantly, I also learned about devaluation and Jacob’s vulnerability to devaluation. And when a person is devalued, bad shit happens. It starts with rejection and sending the person away. And already this cute little bubba, which I just want to go down and hug the screen, is already being subjected to that.

Talking with families and my peers and many, many people in the room today are people I’ve learned from over the years. They’ve mentored me in various ways and really, you know, it’s been a great, wonderful learning experience, which makes me wonder why I’m here on the stage, to be honest. But for many of the people that I’ve learned from, I kind of began to understand that there were two paths, and we were being taken down that lower path.

I think that when we have a child with a disability or when we have a child as parents, when we have a child, you know, we’re thinking about that child’s future and how glorious it will be. You know, what a glorious life I will have going to school, making friends, growing up and et cetera, you know, having a family, all of the, you know, working all of those things that are glorious.

And when we have a kid that… with a disability, there’s something happens in the system that kind of drives us down another path, but it snuffs out those dreams, those positive ideas that we have for our son and daughter. They kind of get snuffed out.

So, talking with other families, I began to understand that we didn’t have to go down that path. We can actually take that upper path, that top path. We can seek an ordinary life for our son or daughter. And as Jan said, when you’re thinking about what you want for your son or daughter and what they might want for themselves, sometimes you start with what you don’t want.

And that was kind of our starting point in a way. We didn’t want segregation. We didn’t want separate schools. We didn’t want that lower path there.

So we came up with a vision for Jacob; really started to sort of think about what might be possible in his life. And that’s an important starting point to really understand what direction your life, you want your son or daughter’s life to take, that it gives you something to speak about. I think that people learn by osmosis when you hear about it often enough, that it becomes part of the way of being. And people begin to understand that will be how the person’s life will, you know, how you want that person’s life to come about, to be led.

I actually couldn’t find the original copy of Jacob’s vision. So this is basically from memory. It’s evolved a little bit because Jacob has more ownership of his vision now. But it’s certainly… the presumptions are very much the same.

I think the other thing that’s really important to think about how our son or daughter might have that good life, aspire to that ordinary life. We might think about what skills and what they need to do, what skills they need to achieve in order to get there. And I think that was my very early thinking. If Jacob could learn to walk, if he could talk, then he could have the good life.

Now, there’s nothing wrong with building competencies and helping people reach their potential and ongoing learning and et cetera. But I think what is really important is that it’s not conditional. That good life isn’t conditional on being able to make those milestones or acquire those skills; that every single person, regardless of their ability, is entitled to a good life. It’s just not going to happen automatically for our sons and daughters very often.

So the vision became part of the way of us thinking about Jacob, his life. He went to, started regular school in Sydney. We were going to, he was at regular school in Sydney, and things were going along reasonably well after we sort of, you know, jumped through the hoops that we needed to, ran the gauntlet for Jake to be enrolled in regular class. And around this time, we thought we’d move to Newcastle. That’s where our family are.

We moved to Newcastle, and part of that process was me going around with my dad and interviewing school principals to see who would be the most inclusive. We’re going to choose the school that suited us, suited Jacob best.

And not long after this, Jake was nine years old. I’m sitting having a chat with dad, and something came up about Stockton. And if you’re not from Newcastle, you might not be familiar, but Stockton is a large residential centre, they call it, a large institution that houses about, at the time, housed about 500 people with disability. And dad said, ” Oh, well, if something happened to you, Stockton might be a good option for Jacob.”

And I’m like, holy heck, over my dead body. And he’s like, yeah, that’s my point. And I’m like, I’m pretty wild. I’m pretty wild. So I’m pretty, you know, upset actually, because didn’t he understand? Didn’t he hear our vision for Jacob? He’d heard it. I thought he’d heard it enough.

And what I came to understand after a while, it was no doubt that my dad, he’s since passed away, but he loved Jacob with a passion and would do anything for him in many, many ways. But he was telling me that if it came down to him and only him, he wouldn’t be able to keep the vision alive. So there’s my fish slap in the face number two. That my vision or our vision for Jacob needed more people around.

So one of the things I did from that was have a chat to some friends and have a chat to my family. For a little while, my mum and I wouldn’t travel in the same car together in case we both died simultaneously. So that would be really bad for Jacob. Let’s not do it, I’ll get the bus.

What I did very quickly was have a chat to some friends and my family. And we created a Caring Committee. Now the Caring Committee’s purpose was to leap into action when I cark it, and I adjusted my will to include the Caring Committee in my will. Now that’s not legally binding. It’s just a way of suggesting my wishes.

So I had three good friends, my mum and my sister were part of that Caring Committee, and it allayed my fears, but I don’t think it actually solved the problem. I think that it was, you know, it made me feel a little bit comforted, but it’s probably… I wouldn’t recommend the Caring Committee that leaps into action when you die as the solution.

The next poignant one is health safeguarding. And I was really prompted to include this today because I listened to the medical safeguarding talk of Cathy Ludlam and Jo Massarelli. And if you haven’t seen it, absolutely go and watch it. The experience lines completely with ours. And it was poignant lesson number three.

I’d already learned Jake was really vulnerable in the healthcare system and in hospital. And we always had someone with him at his bedside when he was in hospital, that was already part of how we do things.

When Jacob was 15, he was in hospital. He was really unwell. He was very, very sick. Then during the middle of the night, there’s another problem, and he needed a medical review, and we had a nurse refuse to bring a doctor in to do a medical review. She refused it. She said, ” He’s dying. He’s had 15 good years. Nothing we can do.”

Now I knew bloody hell we could do stuff. And I was at home, I’d had the drugs to do it. I was in a hospital and they don’t give me access. So it was around seizure-related stuff that was happening.

I knew that I wasn’t gonna be able to advocate for Jacob by myself. And I called my mum, and she ran back up to the hospital, and the nurse said the same thing to my mum. “He’s had 15 good years. There’s nothing we can do.”

And by remarkable good fortune, my mum had recently, three weeks ago, retired from her role as an administrator in ED, in the emergency department. So she was able to walk up to the emergency department, walk through those doors, walk up to the head doctor and say, ” We have a problem, can you help us?” And that’s how Jacob survived that night and has gone on to have many, another 16 or more, you know, ongoing good years.

But it just really, again, that’s just that poignant moment, that slap in the face of his vulnerability in the healthcare system. Already, we knew Jacob’s vulnerability, but it was just to the degree that his devaluation would go somewhat, because of his devaluation, I’m assuming that someone would go in denying him treatment, and it wasn’t complicated treatment, it was just denying him treatment. He was not something that they wouldn’t do.

And I came up with some strategies from that. Over the years, we’ve come up with some more. We’ve got some hospital documentation. There’s things called hospital passports. We’ve actually created something before I heard of hospital passports. And I’ve gone with ours being better because it includes what Cathy Ludlam called an ‘advanced care plan to do everything’. But what we really do in that document is talk about Jacob’s good life.

It’s got important information like medications, allergies, all of those types of things that doctors will ask you. But it’s also got a lot of information about the life Jacob leads. And of course that do everything medical directive.

We also really have someone at Jacob’s bedside all the time when he’s in hospital, he’s not left alone. And sometimes I won’t even go and wee, you know, until someone comes to be with him. It’s just, we just know the risks of that are there.

We make it really personal. So Jake, you know, if he’s going to be the more in hospital, we just bring in a doona. So it’s his doona, his pillow, pictures on the wall of things he likes. And it makes a difference.

In one stage, he was in ICU and there’s one doctor who shared Jacob’s passion for cricket, and he would come and join Jacob to watch the cricket on his breaks. And it’s just those ways of establishing relationship with various people in the hospital system.

It’s really important to be aware of what’s happening. You would not believe the stuff-ups and sometimes they’ll be swept under the carpet unless you’re aware. And I think the other thing is just having a pen and paper and if things start to document, particularly if you see things going haywire or wrong. Start to write things down, write people’s names. “What was your name?” It just keeps people on their toes. There’s been a few incidents where people have, it’s really made a lot of difference to the outcomes for people.

The other thing is we have a hospital advocate, and that’s someone of Jacob’s Circle. And I’ll talk about Jake’s Circle in a moment, but someone on Jacob’s Circle who will leap into action day or night. And she’s on call at the moment I’m away because I’m usually the person who goes to hospital with Jake and I’ll fulfill that role. If I’m not close by, then we have someone, and I just always check in with her. “Are you around? I’m going to go to Canberra. Are you going to be around?” She’s like, yeah, cool. Might not be needed. Probably won’t. But she’s there.

And the other thing that I wouldn’t, I just was talking this morning, and I didn’t include this, but actually, if you’ve got someone who you know or people you know who have some medical expertise, I think it really helps. And if they know your son or daughter as well, if you can kind of tap into that, that’s sometimes useful as well. And importantly, if they know your son or daughter outside of a healthcare arrangement, if they know them socially or through other sort of, through shared interests, for example.

So they’re my three poignant wet fish slapped in the face experiences with Jacob. And as I said, they were wake-up calls, so they’re useful. They’re not the only experiences, poor experiences Jacob had, they’re just the most poignant. They’re the ones that really make sure you’re awake.

Because day to day in Jake’s life, or throughout Jacob’s life, not necessarily day to day in Jake’s life, but throughout Jacob’s life, there’s been many hundreds of times that because of his disability he has been treated less well than other people. And we’ve got to be constantly vigilant of promoting our vision and Jacob’s good life for his future.

And so, you know, life goes on, and Jacob goes to regular school and participates in all of those sort of regular things that young people do. And we continue on our path to inclusion and Jacob’s inclusion in the full gamut of school life and with friends, and, you know, all of those things that are good and enjoyable by young people. His inclusion at school wasn’t perfect. I think it was better than any alternative. It certainly wasn’t perfect.

Thinking about our Circle of Support, we had the Caring Committee strategy for, oh, good 12 years, I would say, maybe not quite that long, maybe nine years. But as Jacob was ending his school life, I’d been thinking about a Circle of Support. I’ll just say it. I’d been thinking about a Circle of Support since high school. Since Jake was in high school, I started thinking about it. And then six years later, I was still thinking about it. And I just really found myself unable to move forward with it.

And one friend said to me, “Jacob’s finishing school soon. You’d better get started.” And I’m like, yes. Yeah. Yeah.

And then I was talking with another friend. I said, “I just can’t ask people. I just can’t ask people.” And she’s like, ” Oh, I’ll ask them.”

And then suddenly it was so much easier. So Jacob’s Circle was formed, mainly filled up of middle-aged women who were my friends. And we began thinking about Jacob’s life after school. And, particularly, the work he would do: the main focus was on customising some employment and micro-enterprise for Jacob.

Really, when I think about it, the future… the longer-term future, I cannot think of a better way of safeguarding Jacob’s future than a Circle of Support. I think that the Caring Committee was a strategy which helped me feel better. But the idea of, you know, people leaping into action without the context of knowing… well, they knew Jacob reasonably well, but without the context of being part of the aims and aspirations of the Circle was really, it was a lot of wishful thinking.

And I think when we’re moving from a Circle, we’ve gone from wishful thinking of a Caring Committee to the trust and faith in people around Jacob for his future. And I think that’s really important is that, you know, the idea that we have trust and faith in people being there.

Jake’s Circle has ebbed and flowed. It’s now much more, many more younger people in the Circle. And we’re looking at the next generation. And I was really prompted by Margaret to really start looking at my son’s cousins to be involved.

Margaret spoke to me recently about the next generation of young people coming into the Circle, and my son’s cousins will now be joining the Circle. And when I was talking to his 17-year-old cousin, it was kind of interesting because Rube said, “So what is it that makes Jacob different?” And I’m like, oh, you mean he’s got a beard, and you don’t?

Well, it’s not that different, you know, like, but he, what he was asking is what is Jacob’s disability? And I thought that was pretty interesting because he’s never asked that before. I suppose it was a question of curiosity, but it’s not been a big question on his mind.

He just knows Jacob as Jacob, as his cousin who loves to watch cricket and loves to go to sports games with the cousins and loves the Knights and all those types of things, which I didn’t include in the beginning. If you’re thinking about a Circle, it is talking with people who are the nearest and dearest.

But I think there’s also something that if you might not have a lot of people around you, there’s,’how can I bring more people into the life of my family member? What can I actually do to bring someone from an outer circle closer into Jacob’s life? Or what can I do? Where are people who share Jacob’s interests?’ So really thinking about expanding that network of nearest and dearest, bringing more people in closer.

We really encourage through the Circle a deep commitment to Jacob. And I think in payback, I suppose, in a very transactional language, but in doing that, also, it’s mutually beneficial. There’s a nice network of people and relationships within Jacob’s Circle, which are all very reciprocal.

I think that there’s things, some really good, you know, they’re their keepers of the vision. I think this is the part which becomes really crucial when I cark it is that the Circle are there to keep the vision.

And understand devaluation, they understand the risks, and we’re quite open about that. Sometimes Jake’s not part of those conversations. He’s usually part of his Circle conversations. But when we’re talking the real hard stuff, sometimes I just think that Jacob might not be up for it without a lot of support. So if we’re having a fairly frank conversation, sometimes it might not be when Jake’s around. And that might not be the right decision, but it feels best at the time.

There’s bigger and better ideas and more networks to tap into. And I think there’s another thing as well about the Circle is that I don’t have to be involved in everything. There’s actually sort of committees, subcommittees within the Circle, which support Jake around some particular things, which I just don’t need to be involved in. I’m his mum, and I don’t need to be involved in some aspects of his life.

And I really appreciate that. And they’re there to advocate for him. At the moment, Jacob’s Circle is called Jacob’s Circle. We are considering the idea of a micro board, but haven’t quite gone there yet. And really, it may be something that we do in the future, but at the moment it’s just a Circle. But a micro board is an incorporated organisation which just formalises the Circle a little bit more, well, to a lot more than it currently is. But Jacob has called his Circle, “what do you wanna call your circle, Jacob?” “I wanna call it Jacob’s Circle.” Imaginative.

We do regular planning. So this is a Path Plan. So this is where the Circle gets together. Often we’ll invite support team members and other people around Jacob as well, a bit of a broader network to do this. And this is something that keeps people really accountable.

One of the things I didn’t mention about the Circle that makes it really work as well is having a Circle facilitator. We’ve actually decided that it makes it work better, run better if we have someone who’s actually facilitating the Circle meetings and facilitates the Path Planning and et cetera.

But this helps us kind of navigate, you know, work out who’s doing what, who’s responsible for what, what’s delegated to support team members, paid workers, and what’s part of the Circle’s role. A little bit like what Margaret was saying about what’s family business and what’s service business. Jacob’s team of support workers also report to myself and the Circle.

There’s a process of me passing on the baton, that’s really key to this. Like the idea is that I can cark it and, you know, things won’t miss a beat too much. I like the idea of playing dead and disappearing just to see how it would go. But at the moment, I’m still probably the holder of a lot of knowledge around Jacob. And it really is, there’s a process of me pouring out the knowledge.

And some of that is, you know, the storytelling. Like I tell people who meet Jacob and get to know him over a while, they know those three poignant stories so that they can be carried on in the oral tradition of supporting Jacob, I suppose. But they also need to be written down.

This is a resource that Pave The Way has created. And that’s a really useful resource for documenting personal information, and I’m in process of doing it. But if you want to get a template, I just would recommend that. And that’s on the Resourcing Inclusive Communities website.

Establishing Jake’s own home was a key part as well. So if Jake doesn’t have a home of his own and he’s living with me when I cark it, it’s actually not going to work particularly well for him as well.

For Jacob, it made more sense for me to leave home. Our family home was wheelchair accessible. Made much more sense for me to leave home and for Jacob to stay living in our home.

He shares his home with a housemate, Gavin, and Gavin provides a little practical support, but most of Jake’s support is from his support team, as well as frequent family gatherings and get-togethers with friends as well. So his life is very much, we’re very much concentrating on the mixture of paid support and in freely given relationships in Jacob’s daily life.

Jacob’s home is in trust for him so that no one can take it off him, so that it is always his home. And it is an individualised living arrangement. It isn’t, you know… Jacob chose his housemate. Again, that was the Circle of don’t have to do everything. His Circle really took charge of the finding the housemate, interviewing people. They got down to three excellent candidates, and Jacob chose Gavin because he thought he was the coolest, I think, although he doesn’t wear his sunglasses inside.

And Jake has a trusty team of support workers that he’s in charge of choosing as well. And part of the team of support workers is that there is a team leader. Oh, we call him a Lifestyle Coordinator – and his role is, I delegate some of part of me passing on the baton is some of that role goes to him and some goes to the Circle. So ideally, once I’ve passed on the baton, I can play dead, or I can cark it, and there won’t be too much… Too much won’t go awry.

This is a work in progress. And if I’m to be honest, I think we’re still in a chaos sent part. If I cark it, we’re not in crisis, which is good because bad things happen when people are in crisis. It’s the least worst option.

We’re looking for the best life that Jacob has to continue and even get better, and his life to get better and to thrive.

No doubt he will mourn me, and you know, he will be sad, but his life won’t be thrown into crisis. There’ll be people there working through some of the chaos. I’m hoping that we’re closer to the green side of that. So there could be calm mourning at some point. Hope there might be some calm mourning for Jacob.

So my vision is when I cark it, when I kick the bucket, when I drop off the perch, shuffle off this mortal coil, that Jake will mourn for me, but his life will continue as good as it was before, that he will thrive. He will continue to learn and to be loved by people around him. He’ll be safe and safeguarded, and that the people will be there around him to help him through the period of mourning for me.