Participant Reference Group Meeting Summary – 20 and 21 February 2024

This is a summary of the Participant Reference Group’s (PRG) recent meeting. The PRG consists of 23 participant and carer representatives across Australia. The PRG is a key platform to ensure the participant voice is heard and understood by the National Disability Insurance Agency (NDIA). Feedback from meetings is used to inform strategy, policy development, system and service delivery development and review, to support continuous improvement.

Chairperson’s welcome

Donna Purcell, NDIA Branch Manager, Office of the Participant Advocate, welcomed members to the first meeting for 2024. Donna also welcomed 7 new PRG members to their first meeting. This meeting was a live event held over 2 days in Melbourne, Victoria.

Day one. Tuesday, 20 February 2024

PRG Induction for new members

Debbie Irvine, NDIA Director, Participant First welcomed new PRG members to their first meeting. The Induction session is held to introduce each other and help new members understand how meetings are run and some of the expectations of members. The induction session covered many topics, including:

  • The NDIA structure and Corporate plan
  • PRG background and membership
  • Operating procedures
  • Expectations, roles, and responsibilities
  • Confidentiality and conflicts of interest.

The Induction session was a great way for new PRG members to meet each other before the main meeting started.

PRG Accountability statement

Nina Bendon, NDIA Engagement Support Officer, Participant First team spoke to PRG members to discuss the Accountability statement. At our November PRG meeting members told us it would be helpful to have an accountability statement. This would help everyone know what was expected of the members as well as NDIA staff and presenters.

We heard that the statement could be helpful to set behaviour guidelines and describe standards and expectations within the group. We also spoke about sharing the final statement with business teams before they present to the PRG. The statement is a promise to be responsible for actions or decisions.

The group then broke into table discussions to think about words or phrases that could be added into an accountability statement. Members were asked to share their thoughts around two areas; the standards, or expectations for how PRG members behave in our meetings, and the standards and expectations for business teams who present at PRG meetings.

The combined notes from all groups will be shared with PRG members at an upcoming meeting. We will use what we heard to draft an Accountability statement as a group.

NDIS Review Report

Kirsten Dean, NDIS Review Panel member, gave a summary of the recent Independent Review into the National Disability Insurance Scheme (NDIS): Final Report. 

Approximately 26 meetings or other types of engagement were held each month during the review period. Funding was also allocated to disability representative organisations to help people share their experiences in a way that was safe for them. In total, they heard from over 10,000 people and received more than 4,000 written submissions.

Kirsten highlighted some of the key areas in the report:

  • Mainstream, foundational, and targeted supports
  • Recommendations for access and planning
  • Navigator role

An Easy Read version of the Final Report is also available: Easy Read: A better NDIS (recommendations and actions) 

Factsheets, including the A new connected system of support and new early intervention NDIS pathway | NDIS Review factsheet can be found at the bottom of the home page of the Working together to deliver the NDIS | NDIS Review website.

  • Dr George Taleporos, PRG and IAC member provided a link to his podcast to help to understand the NDIS review - Your Guide to the NDIS Review: Experts Have Their Say 

Working together in Scheme reform

Rebecca Falkingham, NDIA CEO, attended her first PRG meeting since joining the NDIA. Rebecca told everyone how much the feedback from PRG meetings was appreciated and was helping to improve the National Disability Insurance Scheme (NDIS or Scheme).

There is a lot of change coming to the NDIS and we want to have honest conversations to build a lasting NDIS into the future. We are working to change the culture and are making sure we get more people with lived experience working in the NDIA.

More investment for the NDIA has been secured and we need to invest more in the NDIA staff. We also need more specialisation in the NDIA. For example, if you are a First Nations participant, you should be able ring the NDIA and work with a First Nations Planner.

Our vision is that you should be able to work with the same person if that is your choice, this is our goal to deliver that for you.

We need to stick true to our principles and make sure choice and control remains the cornerstone of the NDIS. We are committed to making sure we achieve that.

Day two. Wednesday, 21 February 2024

Capability building for participant engagement

Donna Purcell provided an update to PRG members on work the Office of the Participant Advocate (OPA) Branch has done to help us improve engagement activities and capability building. We want to make sure people who join a long-term working group with the NDIA are set up for success and understand what is required of them as a member.

Towards the end of 2023, the OPA Branch sought feedback from:

  • Participant Reference Group
  • Participants First members who have been involved in longer term working groups
  • NDIA Staff who helped manage working groups.

The feedback we heard helped us get an overview of what was working well, and where there were opportunities for improvement to help people joining long-term working groups. 

We want to continue doing the things we are doing well. We also want to make sure that we are addressing those things that we are not doing well, and we want to take on board all the suggestions for improvement.

We will work in collaboration with the Co-design and Engagement team to improve the experience for participants and to help our staff across the entire NDIA do things better.

Overview of Co-design

Aaron Verlin, NDIA Branch Manager, Co-design spoke to the Group about what 2023 looked like for the Co-design Reform for Outcomes Groups.

Aaron provided a summary of the work 3 of the Co-design Reform for Outcomes groups worked on in 2023:

  • Workforce capability – are the NDIA recruiting the right staff, looking at recruitment advertising and position descriptions and the capabilities staff should have.
  • Fraud – discussions about campaigns, providing more information and road testing initiatives.
  • Home and Living – looking at the Home and living pathway from end to end, the journey the participants needs to take, and trying to understand that process. They have also looked at what checkpoints there are when NDIS delegates are making decisions.

As we wait for the government’s response to the NDIS review, the Co-design Branch is looking at continuous improvements for setting up long-term working groups or expanding current groups. We are also looking at ways to improve members current experience in long-term groups. We need to be clear on the expectations of the group and what the key deliverables are.

The NDIA needed to establish good relationships and reconnect with the sector and participants around a range of initiatives. It was important that we took the time to establish trust and build a good working relationship. We need really start to learn who are the participants, sector representatives and NDIA staff that were working in these respective groups.

We are also looking at defining the NDIA’s co-design approach and we want to know what co-design means to people. The NDIA’s view is that co-design can mean good consultation through to genuine co-design, but we must be transparent about the type of engagement from the start. If it is consultation, we need to call it consultation not co-design.

Language testing

We want to make sure all our communications meet the needs of applicants and NDIS participants. We recently spoke to participants about some of the language used on our dedicated improvements website.

They told us it can be confusing when we use different terms to describe the same thing. 
For example, we use ‘Agency-managed’ and ‘NDIA-managed’ when we talk about how funds in plans can be managed
Feedback also showed:

  • Not everyone understands the NDIA is an ‘Agency’.
  • It is confusing when we use acronyms and shortened names, like Agency for NDIA or the Scheme for NDIS.  

Not everyone understands the difference between NDIS and NDIA.

  • We asked PRG members about their understanding of these terms and their preference for how we use these terms when we communicate with them.  
  • We also asked PRG members to test survey questions for sending out to the larger Participant First Group.

What we heard:

  • PRG members understand the difference between NDIA and NDIS but believe most participants would not understand the difference and do not separate the Agency from the Scheme.
  • NDIS is the most common term used by participants and their providers as it is so widely branded and well known. NDIS is used in all advertising, logo’s, website, and email addresses. Why can’t we always use NDIS?
  • NDIA Managed was the preferred term, but some members queried why this couldn’t be changed to NDIS Managed to provide better consistency.
  • Members felt it is not the right time to survey participants given we are going to get flooded with change and a survey may confuse people more.
  • Not all survey questions are easy to understand, particularly for those with intellectual disability or with limited experience with the NDIA. 
  • To reach a broader audience consider a 2 question survey every time someone rings the National Call Centre or has a planning meeting. 

Redesign of the Plan and plan approval letter

Carolyn Tetaz, NDIA Director, Co-design Projects met with PRG members in November 2023 to discuss the Plan and plan approval letters. Carolyn provided details of the Discovery Phase Report the Service Guidance Branch have created. This report captured all the feedback they heard last year about the Plan and plan approval letters.

During the discovery phase they also met with Disability Representative and Carer organisations, participants who speak languages other than English, and people from rural and remote areas. They also met with the Better Planning Working Group.

A very important step in the process was to share what they have heard back to the PRG to make sure they have got it right. The Discovery report has been divided into sections and Carolyn provided a summary of each section.

The discovery phase of this work is now complete. We will now work with a group of participants to make a prototype of the new plan and letter. The prototype will be based on the feedback and the recommendations in the Discovery Phase report.
The project team will make sure the prototype can be part of the NDIS PACE system.

Importantly, any prototypes of the plan and plan approval letter will be tested with participants and NDIS representatives before we make any changes to the NDIS plan and plan approval letter.

Final comments and close

Debbie spoke to members about an opportunity for Co-chairing future PRG meetings. Those interested can email [email protected] with their nomination. 

Donna thanked PRG members for their feedback, and for travelling to the meeting, or working online over two very busy days. Donna spoke about her commitment to attend all PRG meetings unless there are unforeseen circumstances. This is to make sure she can listen more to the conversations and to connect with members.

Next meeting

Wednesday, 13 March 2024

Download the meeting summary in easy read