Participant Reference Group Meeting summary – 12 September 2024

This is a summary of the Participant Reference Group’s (PRG) meeting.

The Participant Reference Group (PRG) makes sure the National Disability Insurance Agency (NDIA) hears and understands the participant voice. The PRG has 23 members from participant and carer organisations across Australia.

The NDIA uses feedback from PRG meetings to keep making the NDIS better. PRG members work on what the NDIA plans to do. They work on new and current policies, improving the systems we use, and how we deliver services.

Chairperson’s welcome

Donna Purcell is the Branch Manager, Office of the Participant Advocate, and chair of the PRG.

She welcomed members to an out of session meeting to talk about the Section 10 Substitution draft process.

Section 10 Substitution draft process

The NDIA talked about the substitution process. We said it was from a participant experience perspective. We said the first principle was that it needs to be easy, quick and participant facing. The second principle was that it doesn’t need another piece of evidence from a specialist or occupational therapist. 

The NDIA said we are looking at where participants go for information. We want to make sure we have the right information in the right places. 

The NDIA heard feedback that we need to make sure participants don’t have to call the National Contact Centre (NCC). Participants shouldn’t have to find the information by themselves. 

PRG members asked about the example in the presentation. They noted a support must be in the legislation as a substitute support. They said this should have been part of the consultation. 

PRG members also asked why a support would be on the out list if it could also be on the substitute list. They noted that the substitute list could have supports that generally would be out but might be in, depending on the situation. 

PRG members noted the NDIA can say no and there are no review rights. They asked if there are options for the participant in that situation. The NDIA said this is not a reviewable decision. We also said this was part of other discussions. We said we can’t leave the participant to work out what to do next. We said we have some feedback about this. 

Some PRG members said they didn’t like the case study. They said they would prefer to be told what they need to do. Other PRG members said they liked the case study. They said it helped them understand, but they agreed the language was patronising. 

PRG members noted that a substitute list is hard to create. They said it would be hard to list every support that would be cheaper and more suited to a participant.  

They also asked about the criteria that the support is listed in the participant’s plan. They said they don’t have all their supports listed in their plans. The NDIA noted these comments and said we had heard the same thing in other meetings. The Department of Social Services (DSS) said they are still working on the lists. 

PRG members said value for money may not be the right measure. They said in this example, the watch may not completely replace a support worker. They said the participant may still need a support worker but for less time. They said the substitution process is open to interpretation. They said there could be other options for the participant in this example. The NDIA noted that the primary legislation and criteria say the support must replace another support. 

PRG members also said the substitution could impact funding in future plans, even though the example said it was just for that plan. 

PRG members asked about the claiming process. They asked why the participant needs to send a copy of the approval letter each time. They also asked why it is a different claiming process. The NDIA said this process needs to start from 3 October. We said we need a manual claiming process for a period of time. We need the payments officer to be able to see the claim can be paid. 

PRG members noted the start date of 3 October. They asked if that meant the NDIA would look at plans already in place. The NDIA said we aren’t looking at those plans.  

PRG members said participants need support and education about debt. 

PRG members asked if the word substitution had to be used. They suggested replacement could be easier to understand. 

PRG members noted that every extra step a participant has to do makes them more frustrated with the NDIA. They said the process has to be as simple as possible. They said participants have trouble filling out forms. It would be better to have a phone number to call, and that person should be able to make the decision straight away. 

The NDIA noted we have received the same feedback about keeping it simple. We said there were some people who don’t want to talk to the NDIA. They want a form they can submit. There are others who want to talk to someone. The NDIA said we are looking at more than one way to make the request. 

PRG members said participants are diverse and there should be help to apply. They said participants should be able to apply in the app. They suggested the letter should be part of the participant’s file and shouldn’t have to be attached every time. 

PRG members asked what information is needed to show value for money. They asked if the sentence could be changed to ask why the participant needs the support. The NDIA noted this suggestion. 

PRG members said the process needs to work fast. They noted wait times with the NDIA are really long at the moment. They said there needs to be staff who only work on these requests. The NDIA said we are looking at having a team for this process. 

PRG members said there are problems with the process. They said there can’t be criteria for something to be in a plan when those things aren’t already in plans. They said there should be an amnesty period. They noted participants are worried. 

The NDIA noted we need to look at how this works in practice.  

PRG members said there needs to be steps in the process. They said there should be clear guidance for people making the decision. They said the person looking at the claim should be able to ask the participant for more detail before denying the substitution. They said participants have to fight for things that are reasonable. 

PRG members said the approved substitution should be noted on the participant’s file. They said participants should be able to tell the NDIA that they have already given us their information. 

PRG members said there must be a clear principle to make sure the NDIA doesn’t do harm. They said that there could be serious consequences if a participant’s request is delayed or denied. They said they have raised this in several groups and letters, and consequences can be avoided and prevented. 

PRG members asked about how this will work with new plans and plan reassessments. The NDIA noted we are working through the process. We said we wouldn’t want to slow the plan approval. We said the substitution request may be separate or it may come up in the planning meeting. 

The NDIA noted some resources we are working on. These need to be ready for 3 October.  

PRG members said they are asked about how to communicate. They said they need to see the next versions of the list and instrument. They said they can’t give feedback when they don’t know what they’re giving feedback about. 

PRG members said there would be people who fell through the cracks. They asked what safeguards will be put in place. DSS noted they are working on that. 

PRG noted there is a lot of jargon being used. They said they had trouble understanding it all. They said the wider participant audience will also struggle. 

NDIA noted we would provide an update at the next PRG meeting. We also noted we would set up some focus groups.

Final comments and close

Donna thanked PRG members for their time and contribution.

Next meeting

Tuesday 17 to Wednesday 18 September 2024