FOI 23/24-1307 Independent
Advisory Council
DOCUMENT 9
Minutes of Home and Living Reference Group
Meeting 1 — 18 September 2023 12.30pm — 4.30pm, MS Teams videoconferencing
Reference Group Members: Leah Van Poppel, Principal Member & Co-Chair Patricia Sutton
Leighton Jay
Peter Tully
Rebecca Evans
Luke Nelson
Grace Mills
George Taleporos
Peter Gregory
Mary-Ann O’Donovan Jennifer Cullen
Sharon Boyce
Leanne Pearman
NDIA Representatives:
Kathy redacted: s47F - personal privacy Director, Strategic Advice, Policy, Advice and Research
Gemma redacted: s47F - personal privacy Assistant Director, Independent Advisory Council (IAC) Secretariat
Matilda redacted: s47F - personal privacy Senior Communications Officer, IAC Secretariat
Sam Taylor, acting General Manager for Policy, Advice and Research
Chris Faulkner, Branch Manager for Home & Living and Home & Living Innovation
Attending:
redacted: s47F - personal privacy
Apologies: Robbi Williams Kelly Cox
Delivered by the
National Disability
Insurance Agency 1 Page 62 of 108
Words we use • Circles of Support: a group of people built around a person with disability. They meet regularly to help the person think about, plan and achieve their goals and make decisions. • Co-Chair or Co-Chairs: the Chair of a meeting is the person who leads the meeting. In the Reference Group, we have two people who lead the meeting, so we call them Co-Chairs. • Co-design is when the Agency will work together with people with disability and the broader disability sector to design policy. • 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 a 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 IAC Secretariat know. • Cultural change: changes to the way a group of people think and act about something. • First Nations: people who identify as Aboriginal Australians or Torres Straight Islanders. • Homelessness: people who do not have a home or place to live. • IAC Secretariat: the team that organises the meetings, sends papers and pays members for attending. • Independent Living Options (ILO): supports people with disability to live the way they want to, for example with a host or housemate. • Informal support: unpaid support a person with disability gets from their friends and family. • Intellectual disability: disability that affects how someone thinks and understands information. • Intersectionality: happens when someone is different in more than one way and might be treated differently or poorly for all the ways they are different. • Matters arising: things that are happening at the moment to do with the Reference Group. • Minutes: notes of what happened in a meeting. • Participants: these are the people that the NDIS helps. • Participant Service Guarantee: The Participant Service Guarantee is a document that tells participants how long the NDIS will take to make decisions. The NDIS must meet these timelines. • Policies: rules for how an organisation is run. • Principal Member: leads the Independent Advisory Council (IAC), and is one of the Co- Chairs of the Reference Group. • Psychosocial disability: disability that affects how you feel, think and interact with others. • Reference Group: is a group of people who know a lot about something. This group knows a lot about home and living supports for people with disability. Reference Groups work together to make a plan or find ways to make something happen. • Supported Independent Living (SIL): support to live in your home, usually for people with higher support needs who live with others with disability.
2 Page 63 of 108• Strategy: planning a better future and how we are going to get there. • Work Plan: is a document that says what the Reference Group will do in the next year, or two years.
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Co-Chair’s welcome and open 1.1. Principal Member’s welcome and update Ms Leah van Poppel (Leah) opened the meeting and Acknowledged Country. Ms Jennifer Cullen (Jennifer) also acknowledged First Nations people as traditional owners of the lands we met on. Leah asked that members be accessible in the words they use and, be allies by asking others to explain any hard words they use.
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Minutes and Declarations of interest 2.1. Minutes confirmation and Declarations of interest Members noted they would contact the secretariat to correct a couple of spelling and clarity errors in the previous meeting’s minutes. This includes making sure there is no jargon in the minutes. Members told us about their new conflicts of interest: •
redacted: s47F - personal privacy -
What you’ve heard 3.1. Issues Members have heard in their communities
NDIS access and planning • Reports some participants have thought of ways they can live independently but are told by NDIS planners that living with others with disability is best for them. • Members recommended NDIS home and living decision makers work more closely with participants and the people who support them. • Reports of long delays for home and living decisions that sometimes result in the participant going to hospital or aged care. • Home and living supports are not part of the Participant Service Guarantee. Members reported this leaves participants and their support workers unsure of when decisions will be made.
3 Page 64 of 108• Reports the NDIA takes too long to approve Independent Living Options (ILO) funding. The wait can be stressful for participants, and it can be difficult to complain or try to speed up the process. • People with intellectual disability, brain injury and psychosocial disability do not always realise they need support or that the NDIS can support them. Members suggested creating a NDIS service to help people navigate the NDIS, including accessing the NDIS. • Calls for more flexible NDIS plans where participants can swap core and capacity building supports and use behaviour support funding on other things if they are already well supported. • Concerns for public and participant safety if home and living plans come to an end without a plan for keeping at risk participants from homelessness or crime.
NDIS service and supports • Reports self-managing participants find it difficult to understand home and living supports. • Members reported ILO does not always fit a person’s needs. This can move participants into ill-suited Supported Independent Living (SIL) or mean they need more informal support. • NDIS supports have price limits. Members reported these price limits aren’t always used the same and are not always high enough to support people in rural and remote areas. • Continued reports of limited housing for people with psychosocial disability, particularly core- and-cluster housing. This model builds independent homes around core support and service centres. • Members want the NDIA to support more creative thinking around home and living supports by sharing more information with the community on innovative home and living models. • Reports it can be difficult for parents to support their children with disability to buy a home that suits their needs because of challenges in the NDIS and builders’ concerns about cost. • Members highlighted the importance of building Circles of Support (external) for people without many informal supports, especially First Nations people and people leaving prisons or hospitals. • Members advocated for better funding for Circles of Support. Members reported the NDIS rarely funds these important social networks which are usually grant, self and community funded. • Members also noted funding Circles of Support could make them a target for fraud if not managed properly.
NDIS providers and disability community • Members highlighted the importance of forming partnerships between providers and participants when designing and building home and living supports. • Concern current practices, policies and pay for home and living support workers are not flexible enough to allow creativity and collaboration in how they support people with disability. • Members reported fear in the disability community about what changes will come from the NDIS Review and Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (Royal Commission).
4 Page 65 of 108• Members suggested brief and positive messaging without jargon for the NDIS Review and Royal Commission and connecting with the disability community to see how they react to information.
Action 1: Seek data from the Agency on backlog of home and Living decisions.
Sam Taylor, acting General Manager for Policy, Advice and Research and Chris Falkner, Branch Manager for Home & Living and Home & Living Innovation provided general responses and feedback including: • The Royal commission will give hard recommendations, in accordance with the Terms of Reference. The Agency will be responsible to act on what is in its remit. • The NDIA Home and Living Framework is on hold until the Review and Royal Commission reports are released. The NDIA will come back to the group once more is known. • Hospital discharge decision is now set at 5 days, but there are sometimes delays in availability. The NDIA doesn’t know about a person being in hospital unless they tell them. • Acknowledged the feeling in community about being worried about Review and Royal Commission. • Recognised the need to shift the NDIA culture.
- Workplan 4.1. Workplan Members highlighted that many of the home and living issues are because people with disability are not able to understand and make decisions about how they live. The Reference Group want their workplan to focus on changing this attitude into one that values and listens to people with disability.
The Reference Group identified 3 issues they want their work to address through education and cultural change:
• How people navigate the NDIS, including:
o Creating NDIS Navigators to support those most in need.
o How the NDIS Navigator role relates to the work of local area coordinators (LACs)
and support coordinators.
• NDIS planning, including:
o Creating NDIS plans in the participant’s voice in language they understand.
o Ensuring people centred planning for home and living supports.
o How the NDIS can help participants understand planning.
o Improving transparency around how home and living decisions are made.
o How PACE, the NDIA’s new computer system, relates to planning changes.
o How cultural differences are considered in planning.
• How the NDIS works with other government agencies and community services. For example
in addressing homelessness and housing shortages for people with disability.Members agreed the workplan would cover these 3 areas by focusing on fostering values of listening and inclusion of people with disability in the NDIA. A goal should be to change the culture in
5 Page 66 of 108the NDIA so no one assumes people with disability cannot make good decisions about how they live.
The Reference Group decided their workplan will include working with the independent living and plan flexibility co-design Reform for Outcomes initiatives. Members agreed most of their work will be on navigating the NDIS and NDIS planning. The Reference Group plan to do smaller targeted pieces of work on how the NDIS works with other systems to address homelessness.
The overarching principles of Sustainability, Community, Self-reliance, and Interconnectedness were highlighted.
Members also noted: • The Reference Group would like an overview of what the NDIS Review is thinking about a navigator role in their next meeting. • The disability community need clear information on changes that affect them, and their reactions to change should be bought into the decision-making process. This includes the outcomes of the NDIS Review and Royal Commission. • The narrative around the NDIS Review and Royal Commission should focus on how the information they collect will be used to help people with disability. It should explain that government will implement changes in collaboration with the disability community. • Some participants and their carers have worked hard to get home and living supports that work well and are worried changes to the NDIS could take them away. • People with disability need time and simple language to understand and take part in planning. • Intersectionality should be considered in all reference group work, and how some people with disability experience more barriers than others. • The NDIA have not done much work on Circles of Support but this topic covers more than home and living supports. The Reference Group should not step outside its focus but want to consider Circles of Support where they are relevant. For example, a NDIS navigator role could include building Circles of Support for their participant. • Over the past few years the NDIA has not wanted to do co-design. There has been a shift towards co-design. It is good to remember how far things have come and that they can continue to improve.
Action 2: Agency to provide paper and discussion on draft work they have done on the navigator role at next meeting.
- Meeting close 5.1. Other Business • N/A
5.2. Next Meeting
6 Page 67 of 108• The next meeting is scheduled for 9 November and is online.
• The meeting closed at 4.23 pm.
7 Page 68 of 108