“Many just can’t afford the basics, saving up reach just to see a GP or fill a script when they finally reach a door. Often it is the wrong door or the right door that people behind it simply do not understand about disability. So services exist in theory, but in practice, families face long wait lists, unaffordable gap fees, and supports that are not trauma informed or inclusive.”

Committee chair and Labor MP Mike Freelander said he was aware of stakeholder concerns, adding the government wouldn’t be able to design a “perfect system”. Source: AAP / Mick Tsikas

Plans for the rollout have also worried some experts like Professor Sharon Lawn, the executive director of Lived Experience Australia and the former Mental Health Commissioner for South Australia.

“Then it can very quickly get into blame. It can become many other things other than what it actually is as a child that actually has a need for a Thriving Kids program.”

“You can’t just walk into any community and go, hey, we’re here. You have to collaborate with other services, people that understand that community. So the remoteness is a huge part, especially trying to get to community, making community understand all our diagnosis.”

But the uncertainty and anxiety has been heightened all the more, because negotiations between the federal and state governments on another much vaunted plank of NDIS reform known as foundational supports appear to have stalled — and it remains unclear what those foundational supports will look like.