There is a moment Jane Lee will never forget.
She was sitting beside her child’s hospital bed, exhausted from another long admission, holding together a life that felt like it was fraying at every edge. She had done what she was told to do. She had secured an NDIS plan. She had trusted the professionals. And then she discovered the supports her son relied on had been cut.
I made the mistake of trusting they knew what they were doing,” she says quietly. “They didn’t. They managed to get his funds cut and to have supports taken away which just made an already distressing situation worse.
It would have been understandable to collapse under that weight. Instead, Jane did something many parents in crisis do not realise they are capable of.
She learned the system.
A quiet life, built on strength
Jane does not introduce herself with titles or achievements. When asked how she defines herself, she pauses before answering in a way that says everything about her values.
I would define myself by my family and my commitment to being good enough as a parent with the tools and knowledge I had, and the quiet life I live:, one filled with walks and finding self-care by making sure I have weekly time to watch Chinese Dramas (C-Dramas). Boring. Uneventful. But peaceful.
There is nothing boring about the life she has navigated.
Jane works for a national not-for-profit focused on preventive health. Professionally, she thinks about communities, systems and long-term wellbeing. Personally, she has lived the complexity of trying to access them.
Health is more than seeing a doctor and getting checked off,” she explains. “It’s about access to equitable education, having a home that is warm in the winter, being free from a toxic boss, finding ways to have self-care, and yes, also about being able to see a doctor and being checked off.
For Jane, health has always been broader than medicine. It is about the conditions that allow people to live well.
And that belief was sharpened in hospital corridors.
Learning the language of power
During one particularly distressing period, Jane’s child experienced long hospital admissions while living with complex disability. She had secured an NDIS plan, but it was underfunded and she did not yet know how to use it effectively.
We had managed to get him a plan but it wasn’t adequately funded and I didn’t know how to use it,
When the support coordinator she trusted made critical errors, Jane realised something confronting. If she did not understand the legislation herself, she could not protect her son.
It was not easy, but I forced myself to learn NDIS, to read the legislation, to learn the language.
That phrase, learn the language, carries weight. Because systems have language. Funding has language. Power has language. And if you do not speak it, you are often at its mercy.
Jane learned it fluently.
I was able to reclaim back, not only supports that were lost and the funds that were cut, but I was able to get more funds so that he was adequately supported.
What Jane doesn’t say out loud is that she did not wake up one morning knowing how to read legislation or argue funding decisions. She learned because she had to. And she is quick to point out that not every parent needs to do it alone.
If you are at the beginning of an NDIS journey and it feels confusing, there are places to start that don’t require an associate degree in bureaucracy.
You can contact your local Carers ACT for advocacy support and guidance.
You can reach out to Advocacy for Inclusion, which supports people with disability and families to understand their rights.
And in the ACT, organisations like Marymead CatholicCare Canberra & Goulburn offer practical family support and navigation assistance.
Jane wishes she had known earlier how important it was to ask questions, seek a second opinion, and build her own understanding alongside professional advice.
Today, she still manages her son’s NDIS plan herself. There is a support coordinator, but there are boundaries. Because it is not about distrust. It is about partnership.
I’m quite firm that all decisions run by me, because I know that the person who cares most about my son is me.
Why healthy communities matter
Jane shares this story not to highlight her resilience, but to explain her why.
She thinks often about what kind of community she wants for her children. A place where access does not depend on how quickly you can decode legislation. A place where systems do not collapse under those who are already stretched thin.
I think about the sort of community I’d want for my children and how hard it has been to access this, and it is part of why I care so much about healthy communities for all.
Her lens is both specific and expansive. Jane is particularly passionate about communities of colour, culturally and linguistically diverse communities, people with disability and those struggling with mental health.
But she is quick to point out that supporting one group strengthens everyone.
If we think about, for example, wheelchair ramps,” she says. “They directly helped those with wheelchairs as they were intended to, but also parents with prams, older adults or others with mobility issues, people with temporary injuries and so on. When we uplift some of our most vulnerable, it benefits us all.
It is a simple metaphor, but a powerful one. Equity is not subtraction. It is multiplication.
Private strength, public impact
Jane describes herself as a private person. Sometimes they are surprised by what she reveals about her background.
People are often really surprised that I’m Hmong. As 99.9% of people I have met have never heard of Hmong people. They assume I’m Chinese.
Her story begins long before hospital wards and NDIS appeals. She was born in a refugee camp. She doesn’t have an official birthday, she was born in a refugee camp. That sentence alone speaks to displacement, survival and generational resilience.
And yet, she carries it lightly.
Her favourite drink? Bubble tea. Such a simple concept but with so many different combinations. There is something deeply Jane about that answer. Layered. Adaptable. Open to variation.
The permission to be imperfect
If you ask Jane what advice she would offer others walking a hard path, she does not reach for polished leadership lines. She offers something simpler and more powerful.
I would say, ‘keep going,’ and ‘you are stronger than you know.
Then she adds what many of us need to hear.
You don’t have to perfect. You don’t have to know everything. Be resilient. Be persistent. Keep moving forward. The future is unwritten.
There is freedom in that. Permission to be unfinished. Permission to learn as you go. Permission to grow into the language you once found intimidating.
Jane’s version of self-care reflects that same acceptance. At an event once, she listened as others shared gym routines and yoga practices.
And I, with some self-awareness of how silly it must sound, said ‘C-dramas.
She laughs at the memory. Yes, she walks. With and without the dogs. But she also protects her weekly ritual of watching Chinese dramas. Not because it is impressive. Because it is peaceful.
In a life that has required so much vigilance, peace is not trivial. It is essential.
And so that’s why we add Jane’s story to people with purpose.
Jane describes her life as quiet. Boring, even.
But when you look closer, it is anything but.
It is the life of a mother who refused to accept diminished supports for her child.
It is the life of a refugee-born woman navigating systems that were not built with her in mind.
It is the life of a preventive health professional who understands that wellbeing begins long before a clinic visit.
It is the life of someone who believes deeply that “helping one community often ends up helping other communities and more broadly society.”
And it is the life of a woman who still makes time for bubble tea and C-dramas.
There is power in people like Jane. Not loud power. Not performative power. The kind that builds quietly over time. The kind that reads legislation at midnight. The kind that shows up in hospital rooms. The kind that insists on better systems, not just for her own child, but for everyone.
When asked what defines her, she returns to family.
But in truth, Jane defines something larger.
She defines what it means to live with purpose.
