More than a mum: the 15-person team one boy needs to thrive

Her son has a 15-person care team spanning health, allied health, and educational services that support him in areas where he needs it.

It is the unseen juggle that many parents of special-needs children navigate every day.

"These systems don't naturally communicate with one another; parents become the point of coordination," Ms Di Pasquale said.

"That means we're often integrating information and communication across disciplines, and that's the part of care no one really sees."

She has had to step into the role of advocate and coordinator for her son while being a mum and ensuring she takes care of herself at the same time.

"Not everyone has the time or emotional capacity to run a care team," she said. "Families need help to navigate this."

Ms Di Pasquale has called for more support for parents coordinating care, navigating complex health and NDIS pathways.

"If an individual is unwell, or if a parent is already carrying their daily responsibilities, it can be incredibly difficult to keep up with communication, remember appointments and keep everyone on the same page. There is very little support for that part of the work," she said.

"Until (a dedicated care coordination role) exists, families, parents and individuals are left to bridge the gaps between systems. The work exists, but the role doesn't," she said.

The challenge of managing a large multidisciplinary team of care providers tends to be logistical and linguistic, with different disciplines working on different timelines, using different language and communicating in different ways.

Ms Di Pasquale coordinates reports, updates and communication so each discipline has the information relevant to them, while keeping them apprised of her son "as a whole person".

"Different specialists see different parts of a person through the lens of their discipline, which is valuable, but it can also create tunnel vision. My role is to bring everyone back to the bigger picture: behind every goal, strategy, or exercise is a human being having a human experience."

Every day is a balancing act between appointments, paperwork, communication between care providers and being fully present with her son.

"Because care spans health, allied health and education, there is always information moving somewhere - reports to read, messages to send, documentation to complete - and most of that happens alongside everyday parenting," she said.

"From the outside it might look like a normal day, but there's a lot of organising, documenting and communication happening quietly in the background. This is simply part of caring for my son and making sure he has what he needs to thrive."

The key to ensuring all care providers have the information they need is clear communication.

A shared email thread provides relevant updates, information and documents, and twice a year she brings the team together for a meeting.

"It's about making sure each provider has the context they need. Seeing the range of disciplines in one room, and the size of the team supporting a four-year-old, can be grounding," she said.

"It puts things into perspective, adjusts lenses, and reminds everyone that behind their specialty is a child navigating all of these moving parts at once."