FOI 23/24-1307 DOCUMENT 14
Minutes of Intellectual Disability Reference Group (IDRG)
Meeting 2 – 22 and 23 November 2023 Pan Pacific Melbourne
Reference Group Members Ms Leah Van Poppel, Principal Member and Mr Gavin Burner IDRG Chair Ms Brook Canham Ms Sam Paior Ms Sarah Sutton Dr Leighton Jay Mr Justen Thomas Ms Paige Armstrong Ms Angela Yee Ms Judy Harper
NDIA staff Ms Corri McKenzie, Deputy Chief Executive Officer, Service Design and Improvement (sessions 1- 3) Ms Carolyn s47F - personal p Assistant Director, Service Guidance and Practice (session 5) Mr Daniel s47F - personal privacy Strategic Advisor, Policy, Advice and Research Ms Jessica s47F - personal priv Acting Director Strategic Advice, Policy, Advice and Research Ms Sarah s47F - personal privac Assistant Director, Independent Advisory Council (IAC) Secretariat Ms Gemma s47F - person , Assistant Director, IAC Secretariat Ms s47F - personal privacy , Assistant Director Communications, IAC Secretariat Ms Matilda s47F - personal priva Communications Officer, IAC Secretariat
Attending Mr Kurt Fearnley, NDIA Board Chair Ms Samantha Jenkinson, Independent Consultant to IAC Dr Geoge Taleporos, IAC member (session 6.4) Mr James Manders, IAC member (session 6.2) Ms Sylvana Mahmic, IAC member (session 6.4) s47F - personal privacy Support s47F - personal privacy Support s47F - personal privacy Support
Apologies Professor Sally Robinson, Member Mr Angus Graham OAM, Member (due to connectivity issues) Ms Catherine McAlpine, Member
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Day 1, 22 November - 10.00am to 3.00pm
Session One – Pink
1.1 Co-Chairs’ Welcome and Open The Principal Member Ms Leah van Poppel (Leah) opened the meeting. Leah acknowledged the Traditional Owners of the lands where Members and attendees were meeting. Mr Justen Thomas also gave an Acknowledgement to Country. Leah said Professor Ms Sally Robinson, Ms Catherine McAlpine and Mr Angus Graham could not come to the meeting. Rebecca Falkingham, CEO of the NDIA, could not come to today. Deputy CEO Corri McKenzie, Service Design and Improvement is attending until midday to hear member reports. Kurt Fearnley will attend the second day of the meeting.
Leah said a Co-Chair for IDRG will be appointed soon. Congratulations to Leighton and Sam for reappointment to the IAC. Congratulations to Gavin who is also appointed to IAC.
Leah welcomed Samantha Jenkinson who is the new Senior Independent Consultant to IAC and acknowledged the work of Belinda Epstein-Frisch.
Leah said Ms Leonie McLean has retired from IDRG due to personal circumstances and Leah acknowledged and thanked Leonie for her tireless contributions.
Leah said Ms Judy Huett has resigned from IDRG as she has found the meetings not accessible. Judy has given good feedback about this for a long time. Leah thanked Judy for her contribution, dedication, and patience.
Leah introduced the traffic light card system and noted the House Rules.
Session Two – Purple 2.1 Minutes, Actions and Conflict of Interest Declarations Members approved the minutes of the August meeting. Members noted new conflicts of interest: • s47F - personal privacy
Members noted the actions list.
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Session Three – Orange
3.1 What members have heard in their community and discussions with the CEO. Members raised issues they have heard in their communities, including: Access and planning • There is not consistent funding for people with similar disability, this is unfair. • Getting a plan review can take a very long time. Funding can run out while participants wait for a review. • Access is difficult for people in youth justice, as it is hard to provide things such as ID. • Concerns that if you are in justice system, you now need to apply to NDIS through the Local Area Coordinator (LAC) rather than direct to the NDIA. LACs understand justice issues. • Concerns culturally and linguistically diverse (CALD) people do not know how to get into the NDIS.
NDIS Services and Supports • It is too hard to get in touch with the NDIA. • When a participant passes away people are not sure who to tell. • People who turn 65 need more information about what they can get from the NDIS, or aged care. • People who need help with ageing issues, before they are 65 need more information. For example, people with Down syndrome who get early onset dementia. • Concerns people with intellectual disability do not always have the chance to stay in the home of their choice when they get older. • There is not much housing or respite available for people whose parents are getting older and can no longer care for them. • When an accommodation provider is also providing community participation during the day a participant may have no access to community. • Concerns people in remote communities do not access the NDIS because there are no providers. • Concerns people can’t find support workers who are right for them so are not accessing supports. • Concern the design of the NDIS is making some people with disability dependent on their support worker. Providers and the disability community • The public are negative about the NDIS because people think people with disability are getting free supports and money. • Concern that some support workers see their job as watching over the person with disability and do not try to engage with them. • Reports it is difficult to complain and hold providers accountable when they have done the wrong thing.
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• Concern that providers are building Specialist Disability Accommodation (SDA) close together and that this will isolate people with disability from the community. This is called ‘intentional communities’. There needs to be rules about this. • Some SDA providers have lease terms of 3 years and this does not work for people who need stability in their housing. • Calls for better long-term funding for peer and self-advocacy organisations so they can help with supported decision making. • Concern some organisations are seeking guardianship orders for young people when they take over management of their plan at 18 years old because they don’t have other support.
Action 1: Ms McKenzie to share information on what to do if a participant passes away.
Action 2: Ms McKenzie to respond by video to any Member reports she missed when she had to leave the session.
Session Four – Dark Blue
4.1 and 4.2 Engagement Guide for IAC meetings Leah introduced this topic and noted that the group has already talked about some things that have been hard with this meeting. The Engagement guide is going to be updated to make sure it includes all the information needed to make things accessible for Members. Members said some things that are hard are: • There are too many emails, and they are not in Easy Read. • The Easy Read documents are too big. • The don’t get documents with enough time before the meeting. • Getting late travel bookings makes people anxious. • Two-hour sessions in the meeting are too long. • Information about travel and late notice of travel arrangements is not accessible. Members said some good things are: • The traffic light cards introduced today. • The hotel location in the city, because members can get out and walk in the city and be independent. This is good for mental health and more culturally appropriate. • Breaking into small groups is helpful for sharing stories and giving feedback. What would help make things better: • Having a PowerPoint presentation on screen to help keep track of where the meeting is up to. Not lots of words, just a visual or a word. • 1 hour sessions followed by a 10 minute break. • Easy Read papers only, and up to 20 pages. • Some members prefer images to be photos instead of cartoons. • An agenda for pre-meeting would help keep things on track and help people be ready for the next day.
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• Items from the pre-meeting need to be added to the agenda for the meeting. • Ice-breakers and informal chats are really important to have a bit of fun and get to know other people. • People should introduce themselves with what First Nations Country they are from. • Having more people with disability in the group, not just intellectual disability. Because it is good to think about all lived experiences. • Emails should be shorter, with only one topic. They should be followed up with a phone call. • Emails shouldn’t ask for quick answers as members need time to talk to support people. • A summary video by Leah after the meeting would be better than a written report. • Secretariat and other NDIA staff to do training in Easy Read and make more Easy Read information. • Trial different ways to communicate between meetings. For example, a video update or short online meeting. • Make travel bookings early and avoid other events happening at the same time. Members agree the Engagement Guide should be used all across NDIA, not just IDRG. The Guide should have some principles at the start and an explanation of why the Guide was made.
Day 2, 23 November – 9.30am to 2.30pm
Session Five – Green
Easy Read plans Ms Carolyn Tetaz, Assistant Director, Service Guidance and Practice, shared an update on work the NDIA is doing to offer NDIS plans in Easy Read. Members shared: • Easy Read plans should: o be no more than 12 pages (6 double sided printed pages). o use colour coded sections. o use culturally safe pictures and icons. o have the NDIS planner and a way to contact them on the front. o include the participant’s strengths at the start. o include how much funding and supports the person is getting up front. o clearly show how funding has changed from the old plan to the new plan. • Participants and their family should be able to write or edit the ‘About you’ section. • NDIS planners should ask participants how they want to get their plan and have some options for presenting plans. These should be designed for different circumstances, backgrounds, and disabilities. • Community groups have developed many creative resources for engaging vulnerable people in NDIS planning that the NDIA could use. • Letters are not always the best way to communicate with a participant. This might be because of their disability or other personal circumstances. • NDIS welcome letters need to better explain what SDA is.
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• Participants should be able to use the NDIS without needing to understand details of NDIS support categories. • The NDIA should engage people with disability, including First Nations and CALD communities, and Disability and Carer Representative Organisations (DCROs) on this work. • More planning meetings should be in person to give NDIS planners a better understanding of the participant. This should reduce errors. • In person meetings are important for vulnerable participants. The new PACE computer could help identify these participants.
Action 3: Ms Armstrong to share a copy of a board game planning tool with Ms Tetaz.
Action 4: NDIA to share the summary ‘What we’ve heard’ about Easy Read plans with the IDRG in 2024.
Session Six – Red 6.1 Reform for outcomes IAC representatives shared their work on the NDIA’s Reform for outcomes co-design activities.
6.2 Reforms for Outcomes – Better Planning and Fraud Mr Gavin Burner led the session about Better Planning. Members shared: • When things change, participants often need more support coordination. • The NDIA should share more information on what good service providers look like. • The NDIA should do more to help participants track their NDIS spending. • The NDIA should ask participants when and how they want to receive information. • Communication with participants should be culturally safe and trauma informed. • People with disability should be involved in training NDIS planners. This will help grow them understand disability. • NDIS planners should give more time when helping participants set their goals.
Mr James Manders led the session about Fraud. Members shared: • Some CALD people have difficulty understanding what a support coordinator does. This can put them at risk of fraud. • Support coordinators should all be registered, and they should share their specialisation with participants. • There should be harsher punishments for providers who do the wrong thing. • Some support coordinators charge the highest fee but pay their workers the minimum rate. This often leaves the participant with poor quality support. • There should be accessible information about fraud and the price guide. • The NDIA’s new computer system PACE might identify conflicts of interest. • NDIS plans should show what money is spent and how much funding is left.
6.3 Reforms for Outcomes – Workforce Capability and Evidence Based Supports A group talked about Workforce Capability. Members shared:
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• There should be a clear strategy on how the NDIS will help participants build their capacity in addition to funding therapy. • NDIS needs more planners, especially planners with disability, specialist planners in ageing and disability, and planners based in rural areas. • NDIS planners need to better understand supported decision making. • NDIS planners need a lot more training to understand intellectual disability and be able to work with people in a safe and supportive way. • NDIS planners could be tested by creating plans for fake participants, without knowing they were test examples. Trainers can look at these to give feedback and make improvements. Ms Leah van Poppel led the session on Evidence-Based Supports. Members shared: • NDIS website should have important information easy to find and in plain English and accessible formats (including Easy Read). More detailed information should be available through expandable headings. • Sometimes participants in rural areas do not leave bad providers. This is because there are no other providers, or they are afraid of how the community will react. • Many participants trust providers who listen to them and do what they say. • NDIS planners should look for evidence for if a participant is meeting their goals.
6.4 Reforms for Outcomes – Independent Living and Plan Flexibility Dr George Taleporos led the session on Independent Living. Members shared: • People with intellectual disability may not look at different options to a group home because they are afraid and do not understand the other options. • Trialling independent living before moving out of their parent’s home can help people with intellectual disability decide how they want to live. • Moving back into shared living is not always a sign someone with disability cannot live independently. • Hearing stories of people with intellectual disability living independently inspires others to do the same. • NDIS planners do not always want to include a participant’s goal to live alone in their NDIS plan, perhaps because of the time it will take or a bias they have. • Planners should work with the participant with intellectual disability and the people around them to help them understand what it takes to live alone. Sylvana led the session on plan flexibility: Members shared: • The NDIA should list what each piece of funding is and explain how to spend it. • A participant should meet with a support coordinator to plan how they will use their budget and implement their plan. • Participants need more help to implement their first plan. • The NDIS budget calculator is good but not all participants have digital access. • LACs and support coordinators need to support participants to use their plan flexibility, especially around health issues or uncertain housing arrangements. • Participants need to be able to get funding within 24 hours in emergencies. • There should be funding to support participants while they wait for plan reassessments.
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Session Seven – Brown
6.1 End of the meeting Leah noted that she will do work now to fill gaps in the IDRG membership. The group shared ideas for thinking about what new members would be good for IDRG. Leah thanked everyone for sharing their ideas at the meeting.
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Words we use • Bias: attitudes people have about a group of people that they may or may not be aware of. Bias can guide what people do. • Reference Group: is a group of people who know a lot about something. This group knows a lot about intellectual disability. Reference Groups work together to make a plan or find ways to make something happen. • Co-design: is when the NDIA will work together with people with disability and the broader disability sector to design policy. • Culturally and linguistically diverse (CALD) • Disability and Carer Representative Organisations (DCROs) • Conflict of Interest: Conflict of Interest Declaration is a document where you need to say all the different ways you are connected to the NDIS. This could include if: o your work is around the NDIS o you are an NDIS participant. o you are part of other reference groups that talk about the NDIS. This is because we all need to make sure your job in this Reference Group doesn’t clash with other jobs you do. It is ok to have a conflict of interest, but you need to let the Secretariat know. • Participants: these are the people that the NDIS helps. • Co-Chair or Co-Chairs: the Chair of a meeting is the person who leads the meeting. In the IDRG, we have two people who lead the meeting, so we call them Co-Chairs. • Principal Member: is the Chair of the Independent Advisory Council (Council), and one of the Co-Chairs of the IDRG. • Specialist Disability Accommodation (SDA) • Secretariat: the team that organises the meetings, sends papers and pays members for attending. • Information, Linkages and Capacity Building (ILC) program: this is an important part of the NDIS. ILC gives support to all people with disability, including those in the NDIS and those who are not in the NDIS. ILC help make Australia more accessible and inclusive of all people with disability. It can help you do what you need to do to be part of the community. The Department of Social Services (DSS) is in charge of ILC.
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