Beyond 18: Rethinking Care for Adults with Cerebral Palsy

On my 18th birthday, I didn’t feel like I was stepping into adulthood.

I felt like I’d been pushed off a cliff.

Growing up with cerebral palsy (CP), Australia’s most common physical childhood disability, my care had always been structured. I had multidisciplinary teams, coordinated appointments and clinicians who understood the condition.

Then I turned eighteen.

Suddenly I was told adult services were limited. It felt like the system expected my development to just stop.

I quickly realised my experience wasn’t unusual. Today, adults make up 75 per cent of Australians living with CP, yet much of the healthcare system remains designed around paediatric care. When we age out of those services, many of us encounter fragmented support, long waitlists and a shortage of clinicians trained in managing CP in adulthood.

Adulthood with CP is dynamic. We’re pursuing higher education, careers and independence—and the healthcare system should reflect that.
Instead of accepting those gaps, I decided to study them.

I’m now a PhD researcher at Monash University, investigating neuromodulation in adults with cerebral palsy. 

My work, and my leadership, has been recognised in ways I’m deeply grateful for. I’m a recipient of the Bridge Create Change Award and part of the L'Oréal-UNESCO For Women in Science Program mentoring program. The Australian Academy of Science has recognised me as a STEM changemaker, and my portrait hangs in Questacon – National Science and Technology Centre, celebrating female role models in medicine. But my research is shaped by something many scientists don’t bring to the lab: lived experience.

In research, participants can sometimes be treated like data points. But they’re people managing work, study, fatigue and complex systems.

In a field historically dominated by clinicians studying disability from the outside, I’m committed to a different approach: disabled leadership within research itself.

The hidden “admin tax” of disability

Becoming a researcher didn’t exempt me from the same structural barriers I study.

During my postgraduate study, I found myself navigating the bureaucratic maze familiar to many disabled university students: separate departments for academic adjustments, disability services and funding support, each operating independently.

The administrative burden of coordinating it all nearly pushed me to burnout.

There were moments where the fragmentation felt overwhelming.

What helped was finding a clearer starting point. Through the Disability Gateway, an Australian Government initiative designed to act as a central point for information, services, and practical support for people with disability, their families and carers, I was able to access consolidated information about available supports, rather than navigating multiple disconnected systems.

It didn’t remove every barrier, but it reduced the overwhelm and gave me direction.

A life the system didn’t plan for

With that support, I’ve been able to carve out space for something the healthcare system rarely anticipates for disabled people: a full, multidimensional adult life.

Outside the lab, I train at the gym to manage my CP, write poetry and stay closely connected to my faith. I’m also a fashion model signed with inclusive modelling agency Zebedee Talent.

My poetry collection, Burnt Bones and Beautiful Butterflies, explores identity, resilience and disability.

For me, modelling isn’t just about imagery. It’s about representation and expanding the narrative of what strength and beauty look like.

I’ve also become a vocal advocate for accessibility, including campaigning for more accessible packaging. A petition I launched calling for change attracted more than 13,000 signatures, highlighting how everyday design often excludes people with disabilities.

My long-term goal remains firmly focused on healthcare: helping create a system that grows alongside the people it serves.

People with disabilities and their carers can access information about support services available by visiting https://www.disabilitygateway.gov.au/ or calling 1800 643 787.

For more information about Independence and inclusion, My CP Guide hosts a variety of information resources. Browse the My CP Guide website to find other relevant resources.