Senate Community Affairs References Committee - Perth, WA (part 2 of 2) — hearing of 27 August 2026: transcript & video · Polyfact

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Senate Community Affairs References Committee - Perth, WA (part 2 of 2)

27 August 2026

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Contents updated on 27 Aug 2026

Committee questions on care navigation lead to evidence that dedicated coordinators and parent-controlled digital platforms could reduce hospital and ED use, improve seizure stability and parent mental health by easing the burden of coordinating multiple specialties for complex paediatric epilepsy and disability.

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Committee Q&A — care navigation, genetic testing and DEE trials

00:00

Care navigation model — expected outcomes

00:00

Kids Research Institute role and genetic testing access

02:20

DEE clinical and gene therapy trials — Australian participation

05:03

Trial information for families and equity issues around N=1

07:50

Lived experience panel — driving, delayed diagnosis, SUDEP and WA service gaps

10:31

Closing expert panel and instructions for lived experience session

10:31

Andrew — driving seizures, licensing and support gaps

13:24

Claire — child’s delayed diagnosis and lack of stereo‑EEG surgery in WA

23:21

Kim — non‑verbal sons, SUDEP information and household risk management

27:24

Kim — NDIS training disputes and public epilepsy education

33:50

Emma — misdiagnosis, loss of independence and family mental health

39:23

Emma — systemic asks on diagnosis, mental health, NDIS and transport

44:56

Warwick — SUDEP loss, delayed diagnosis and role of Epilepsy WA

49:50

Warwick — employment limits, treatment costs and call for stable funding

55:00

Elise — interstate travel for advanced diagnostics and WA service gaps

01:00:14

Expert evidence — DEE genetics, specialist nurses, centres of excellence and trial governance

01:08:40

Chair thanks lived experience panel and introduces Professor Scheffer

01:08:40

Scheffer opening — genetics, DEEs and need for DEE nurses

01:10:47

Designing centres of excellence and funding interstate access

01:20:32

Workforce and DEE nurse profile — CNCs with epileptologist support

01:24:11

N-of-1 precision trials and sham-controlled gene therapy

01:29:53

Ethical framework for N-of-1 and gene therapy; need for education

01:33:36

Referral patterns, national demand and intensive inpatient assessment model

01:41:44

Closing the hearing and reporting timeline

01:44:00

Senate Community Affairs References Committee - Perth, WA (part 2 of 2)

27 August 2026

Senate Community Affairs References Committee Thu, 27 Aug 2026 Australian Parliament

00:00 - 00:07

Speaker 3

with where and how we can cost that into our analyses for those children and families.

00:07 - 00:29

Yeah, thank you. Um, you also talk about in your submission, um, some families have described acting as the coordinators of complex health, disability and education systems. If government was to fund a dedicated care navigation model, what outcomes do you think would be or should be used to measure the success of that model?

00:29 - 01:36

Speaker 4

I think the outcomes are less hospital admissions, less ED presentations, better parent mental health and probably better child health as well. I'm not quite sure what outcomes specifically, but I think there would be more stability of seizures. And the care coordination goes beyond management of epilepsy. If a child has complex needs, then there is coordination between four, five, six or more specialties. And that is enormously burdensome to parents.

They do not have, we do not have paid navigators, coordinators in our system. It is extremely lean on the ground. And I think there's a two-way, two ways to tackle this. I think we do need more coordinators for children with epilepsy conditions and complex disability. But I also think we could do better with having a, um, a platform which parents are in charge of.

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