Nicole Kozelj is an advocate for people with disabilities and has lived experience to back it up. 

Nicole has ataxic cerebral palsy (CP), a form characterised by disorganised, jerky movement. 

Since completing degrees in community welfare and in inclusive education and disability studies, Nicole has worked with CP-Achieve, an NHMRC-funded research program that was dedicated to improving the health and life outcomes of adolescents and young adults with CP. 

She recently helped co-design a unit on disability for the University of Melbourne’s Department of Paediatrics and worked as a lived experience tutor there. 

‘I strongly believe that all health-related uni degrees should have a unit on disability. 

‘Whatever profession you go into, you’re going to come across people with disability,’ Nicole says. 

As a child, Nicole had much of her care organised through the Cerebral Palsy Alliance, a network of services based in New South Wales. 

‘They had all the physios and OTs and other health professionals there—since I did most of my stuff there, they could easily talk to each other.’ 

She was also a patient at the Children’s Hospital at Westmead’s Cerebral Palsy and Movement Disorders clinic. 

But as an adult, she has not found it easy to navigate the available health services and wishes there were centralised centres for adults with CP and other movement disorders to access the medical services they regularly need. 

While the Cerebral Palsy Alliance offers support and services through the life span, Nicole relied on them more during her younger years, as they offered the intensive therapies she needed. 

Over time, her use of their services decreased and distance became a barrier since their sites were not nearby. 

Disability advocate Nicole Kozelj, who lives with cerebral palsy, wishes there were centralised clinics offering comprehensive care for adults with disabilities.

As Nicole has grown older and more independent, accessibility to the Alliance’s facilities remains a challenge, with many centres difficult to reach by public transport, meaning she has had to rely on others for transport. 

‘I still rely on them for some things—if I need a new wheelchair, for example—because they know the ins and outs of how to structure reports and reviews.’ 

Since the NDIS was established, it has become easier for Nicole to manage her own healthcare. 

‘It’s great to be able to walk into these places and say, “Can you provide me with this service?”‘ 

However, it can be difficult to find the right health professionals and she wishes there were a curated list of healthcare providers like physiotherapists with disability knowledge and a willingness to learn and work with adults with CP and other disabilities. 

‘Not everyone’s the same. 

‘Just because you treat someone with CP, that doesn’t mean the next person will have the same needs or requirements. 

‘We all have our own perspective and expertise about our body’s capabilities. 

‘I’ve developed coping mechanisms for my ataxia over time. 

‘When I was growing up, there were different things that physios did to try to correct my walking pattern but because I was already developed in my walking, it was hard to change. 

‘I started seeing one physio and I found that they weren’t as adaptive to my body as I needed. 

‘I was doing the same basic routine with them weekly—it was great for that time but it didn’t really take my body into account.’ 

Currently, Nicole is regularly seeing a physiotherapist and an exercise physiologist to manage her ongoing physical needs and she has chosen a service that provides both. 

‘They’re very good at listening to me and what I need, knowing that my body can be completely different from one day to the next.’