Josie’s story: family life and choosing good support
Blogcast: Josie’s Story
By Kim Napier · Originally published 15 November 2017
Original article and dated context
Kim Napier first met the Holdsworths in 2004, when friends of the family contacted Kim’s radio station to ask if she and her team could wheelchair proof the Holdsworth’s home for Josie, who lives with a significant disability. The community rallied and Kim quickly became firm friends with the family.
In this podcast, you will hear more about Josie’s disability from her mother Jen, as she touches on the lowlights, highlights and needs for a family with a child who has a disability. You’ll also learn firsthand what makes a really good service provider – and why the NDIS matters to its participants.
Listen now…
document.createElement('audio');Transcript:
Josie: Happy birthday to you. Happy birthday to you. Happy birthday dear Kimmy. Happy birthday to you. Happy birthday Kimmy. I love you. You are so sexy. Love you. Don’t get drunk!
Kim: That’s Josie. Funny, determined, and just a little bit cheeky. She loves Kath and Kim, One Direction, Home & Away, and a party. In fact, taking a cue from her big sister, she’s already planned to celebrate her 18th birthday with lots of beer and a dress code of… well, nude. According to Josie, that’s what 18 year old uni students do. What I haven’t mentioned yet is Josie’s disability.
Jen: So Josie has two genetic disabilities. Her main diagnosis is Kabuki syndrome and with that comes a subset of diagnosis. She’s had to have open-heart surgery, kidney surgery, multiple orthopaedic surgeries. She has immune deficiency disorder, which is linked to the Kabuki syndrome, but as a result of that protein not in her genes, everything in her body has developed not very well. She also has another gene fault which is called axonal neuropathy, so she’s losing the feeling in her limbs. It’s quite painful too. She’s 16. Developmentally she’s around 6, but also she’s got a wicked sense of humour way beyond a 16 year old. So it comes with a whole lot of medical problems, but it also comes with a lot of laughter.
Kim: That’s Jen, Josie’s mum, carer and best mate. We caught up with Jen as she drove Josie to school. Josie only does half days and only three days a week. It allows Jen much needed respite, but just getting Josie there is a marathon.
Jen: So it’s about 24 hours of preparation to get her to school. She didn’t go to school yesterday so we had to work on getting her to school today. We have to work on her anxiety, we have to work on the right foods to put in the lunchbox and just keeping that routine, keeping everything calm because the anxiety about getting to school itself can just be overwhelming. And this morning it starts about 4 o’clock – again, trying to keep her calm, get her dressed because she can’t physically do any of that herself, toileting, getting her ready,. And here we are at 8.38, nearly there.
Kim: Josie is recovering from orthopaedic surgery and is in a wheelchair. In fact, this is the second surgery for broken bones she’s had this year. The first required a long stint at Royal Children’s in Melbourne, not her first visit to hospital. Jen approximates 160 visits since she was born, which obviously takes an immeasurable toll on the family.
Jen: Dysfunctional is probably one of the words I’d use! No, uniquely functional. We’re oddly not normal. Busy, stressful, emotionally and physically exhausting, but at the same time, lots of laughter, lots of giggles. It’s limiting what we can do.
Kim: You might say that Josie is operating at the intellectual level of a 6 year old, but my conversations with her are far better than with a lot of adults!
Jen: She is so emotionally in touch, she can pick sadness and happiness and she can connect with people in ways that not even an adult can—a high-functioning adult that is. She has something that most don’t. She may not know her colours and may not be able to read or write but she knows a lot more than a lot of us do.
Kim: As Jen drives and chats away, as her friend, I also know she has her fingers crossed that she won’t be called back to pick Josie up within five minutes of drop-off. Jen uses Josie’s school time to get stuff done: house work, chores, food shopping. When Josie is home and home unwell, it’s pressure and…
Jen: Boring as batshit as Josie would say. I’ve got four kids as you know and whilst they’re all adults, they all demand a piece of mum, so I’ve still got to take care of them or liaise with them and touch base. And then I’ve still got to run a household. I have limited my work and only work ten hours a week now. But still, those ten hours are hard to find each week. Josie probably ends up pretty bored most days, sitting around, because she physically can’t just get up and walk out to the garden anymore to play with the chooks. We’ve got to bring the chooks to her because we’ve got to keep her safe. So she spends a lot of time on YouTube, she’ll do some cooking, but then that all has to be done in the morning, because every day without fail by lunch time she’s exhausted. We’re now hoping with this NDIS that we can get some support workers who are not just support workers but her buddies, if that makes sense, and to take the pressure off me to entertain her all the time, and Paul. And for her to have a friend to go on excursions with and to be safe.
Kim: So what services do Jen and her family value and, indeed, what makes a great service?
Jen: Services we value the most at the moment firstly, thanks to the NDIS finally recognising the role that carers play, are those that put the carer into the plan. While the focus is on the child, finally they’re able to offer us some support, like domestic support. Just the simple things like ironing and cleaning really helps. We’re still in the early days of it but we value the fact we can now choose who looks after Josie. It’s not just, “Here you go, this is what you’ve got.” We’ve been able to have a bit more control over that. Finally, the equipment we’ve been waiting for – her incontinence equipment is all covered now, which we used to be out of pocket for all the time. It’s huge.
[Clickability update, October 2026: The family describes its experience at the time. Current NDIS support rules apply to proposed purchases; support for a participant and services for a carer need to be distinguished. Carer Gateway is a separate carer-support route.
Kim: So how do good disability services provider make the life of the whole family improve?
Jen: I think communication. Finding a good Local Area Coordinator is really important, finding a great advocate is really important. And then once you’ve found them, and once they know your family and what we value in life and where we see Josie going, we’re all on the same page. Finding people you can gel with and connect with – and who aren’t high and mighty and who aren’t telling you what you should do – that’s what’s important. Keeping that communication and keeping it open.
Kim: That’s a snapshot of a family with a child with a disability and an understanding of the needs they require to take just some of the heat off. Then, throw cancer in. Yep, twelve months ago, Jen had a double mastectomy.
Jen: And I’m reminded every time I get Josie out of the car and her wheelchair… sorry, someone’s just caught me just eating chips in the car. Every time I lift the wheelchair out of the back of the car, I’m constantly reminded that I’m still very sore.
Kim: You never complain about it. Is that because there’s no time to focus on yourself?
Jen: Yep, absolutely. For me, that’s been a really good thing. I haven’t had time to reflect on it or be overwhelmed by the fact I had a double mastectomy and a bit of a cancer scare. I just get on with life because I have to.
Kim: This family managed to see value in little everyday things, because as Jen knows, in a second, life can change. So, who wants an invite to Josie’s 18th? It’s gonna go off.
Clickability editorial update: October 2026
Describe the routine and where help is needed
Record the tasks that take time, who currently does them and where arrangements are becoming difficult to sustain. Include the person’s preferences and communication, rather than reducing the conversation to diagnoses or a timetable. Ask potential providers how they would approach the particular parts of the day that need support.
Jen values communication and consistency. Turn those into questions about handovers, worker absences and how changes will be agreed. A worker can build a warm professional relationship without becoming a substitute friend or taking over family decisions. Your own health and capacity also deserve attention; Carer Gateway can discuss support for you.
Get to know the person as well as the care schedule
Listen directly to the participant in the way they communicate and clarify the family’s role with appropriate consent. Ask what a good visit would look like and how you can tell if something is not working. Confirm that workers have the relevant skills and boundaries for the tasks. Medical explanations in the transcript should not be used as instructions for another participant’s care. The NDIS Code of Conduct is a relevant professional reference.
Questions readers ask
Does the interview establish funding for another family?
No. Check current support rules and the individual plan. Official guidance
Can the transcript be read without the old recording?
Yes. The original interview transcript is preserved in this article.
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