IAC meeting bulletin, 25 September 2025
The Independent Advisory Council (IAC) to the National Disability Insurance Scheme (NDIS) met online on 25 September 2025. Members discussed:
recent issues faced by NDIS participants
an update from the NDIA Board
an update from the Office of the Participant Advocate
advice to the Board of the National Disability Insurance Agency (NDIA).
Ms Leah van Poppel, IAC Principal Member led the meeting.
Members welcomed NDIA Board Member Dr Denis Napthine to the meeting.
What members have heard in their communities
Members shared community concerns about funding periods, especially among participants who can’t access support coordination when their funds are low. Members suggested better coordination and more flexibility is needed at the start, middle and end of plans, but that the new funding periods don’t allow this. The Agency noted it has recently made changes to its Operational Guidelines to ensure participant preferences are front and centre of its decision making.
Members shared queries from potential participants with rare conditions who are struggling to access the Scheme. They are finding it hard to supply the needed evidence. They have asked what the participant pathway looks like for people with rare conditions, given there is limited research or evidence on their condition’s impacts.
Members asked about the Agency’s research papers including one on group homes, and home and living supports and services. Members want to understand what research has been undertaken. The Agency noted it wants to be more transparent in its research.
Members shared participants’ concerns about cuts to plans without plan reviews. While the Agency fixes this problem when it happens, it is still scary for participants to experience. Members also raised ongoing participant concerns about unscheduled Agency calls. The Agency is working to improve scripts used in participant phone calls, making sure the purpose of the call is clear, as well was what the next steps are. Work is also underway to enable participants to book a call with the Agency at a time that suits them.
Members said participants, their families and carers need clearer information on the Agency website about what to do if a participant dies. Members suggested families and carers need information that clearly describes the process and presents all needed information.
Members shared concerns about the relationship between the NDIS and state and territory health agencies. Community concerns are that providers, participants, advocates, and health staff have little understanding about how they can support participants once they are in the hospital. The different processes and rules between the states and territories adds to the confusion. Members noted that this shows the potential for foundational supports to improve participant experiences.
Board update
Representatives from the NDIA Board told Members about some of the current work and focus of the Board.
Office of the Participant Advocate update
The Office of the Participant Advocate updated Members. The key emerging themes for the April-June quarter have shown participants hold in high importance:
NDIA staff being qualified and capable
Easy to access and clear information
The Agency collaborating with participants and their families and carers
The Agency reducing the community’s fear and mistrust.
IAC Advice
The IAC was updated on its ‘Home and Living’ and ‘NDIS and the Justice System’ advice.
Next meeting
The IAC will next meet online on 5 November 2025. Find out more about IAC meetings and bulletins at the IAC website. The IAC publishes an Easy Read version of this bulletin, as part of its commitment to accessibility.