FOI 23/24-1307 Independent
Advisory Council
DOCUMENT 11
Minutes of Home and Living Reference Group
Meeting 3 — 16 April 2024 12.30pm — 4.30pm, MS Teams videoconferencing
Reference Group Members: Leighton Jay (co-chair) George Taleporos (co-chair) Patricia Sutton
Peter Tully
Rebecca Evans
Luke Nelson
Grace Mills
Peter Gregory
Mary-Ann O’Donovan Jennifer Cullen
Sharon Boyce
Leanne Pearman
Robbi Williams
NDIA Representatives:
redacted: s47F - personal privacy McKay, Deputy CEO, Partners, Providers and Home and Living
Kathy redacted: s47F - personal privacy Director Strategic Advice
Gemma redacted: s47F - personal privacy ssistant Director, Independent Advisory Council (IAC) Secretariat
ee
Apologies:
Leah van Poppel Mary-Ann O’Donovan Kelly Cox (attended briefly)
Delivered by the
National Disability
Insurance Agency 1 Page 77 of 108
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Co-Chair’s welcome and open 1.1. Principal Member’s welcome and update Dr Leighton Jay opened the meeting and said that he would be co-chairing with Dr George Taleporos today.
redacted: s47F - personal privacyMary-Ann O’Donovan also noted as an apology. Adjunct Associate Professor Jennifer Cullen gave an Acknowledgment of Country. Dr Jay noted this is the first meeting of the Home and Living Reference Group for this year. Dr Jay introduced Lucy Testa as the new Independent Advisory Council (IAC) Independent Advisor working alongside Samantha Jenkinson. -
Minutes and Declarations of interest 2.1. Minutes confirmation and Declarations of interest Members approved the minutes of the last meeting on 9 November 2023.
The following Conflicts of Interest were noted:
• redacted: s47F - personal privacy
Members agreed that action 1 from the meeting on May 2023 regarding leaving hospital or nursing homes could be closed, noting the Secretariat is following up on some additional data.
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What you’ve heard 3.1. Issues Members have heard in their communities NDIS Services and supports
• The accommodation shortage means that people who should be leaving hospital are unable to be discharged as they have nowhere to live. • Concerns that many people with mental health and psychosocial disability are not having access to the NDIS. • Concerns about statements made by Mental Health Australia (MHA) that people with psychosocial are now well set up with supports for living and recovery. MHA has also (incorrectly) said the NDIS doesn’t support recovery. • The Administrative Appeals Tribunal (AAT) process is incredibly difficult for participants and their families and lacks empathy. There is not transparent decision making.
Disability Community
• Concern about recent media commentary about people involved in justice system.
2 Page 78 of 108• Concern that inappropriate accommodation with 4 bedrooms or more is still being registered, and there are areas where rows of SDA houses are being built. • There is a lack of outcomes from the extensive Information Linkages and Capacity Building (ILC) funding that has been spent on projects. • People who are incarcerated and have an NDIS plan are waiting a long time to get any communication or support. • Concerns about general lack of housing and the skilled worker shortage in the community. • There needs to be work done so that people can invest in Specialist Disability Accommodation (SDA) and do SDA themselves.
NDIS Review and Disability Royal Commission (DRC)
• It is hopeful that that specifically trained navigators will help people with psychosocial
disability. Navigators will be able to assist when people have fluctuating conditions and
changing support needs.
• Concerns in the community about the NDIS Review recommendations regarding the 1:3
funding model for supports. It seems inevitable that this will lead to more decision making
that moves participants into group homes.
• Concerns about the NDIS Review recommendation to remove the improved liveability
category from SDA.
• Concern about the NDIS Review recommendation re- mandatory registration and the likely
impacts on self-managers.
• Amendments to NDIS legislation is causing distress and people are worried about seeing a
return to previous forms of funding.
• There is a lack of communication with participants. This is creating fear as they are aware
there is a lot going on in the background.3.2. NDIA Update Dr Jay welcomed Ms Penelope McKay, Deputy CEO of Partners, Providers and Home and Living to respond to the key issues raised in Member reports and provide an update from the NDIA. Ms McKay noted: • The concerns about funding supports on a 1:3 ratio are acknowledged but this is not a recommendation from the Agency. The Agency’s approach hasn’t change, it determines funding on what is reasonable and necessary. • The Agency provides its own advice to government and will make sure the views of the community and reference groups are heard. • Regarding lack of housing, this is an all of community problem, but it is recognised that the most vulnerable people are impacted the most. • The Agency has prioritised making sure there is better data on SDA. • Once there is a government response to the NDIS Review and DRC recommendations the Agency will be able to move forward.
3 Page 79 of 108• Regarding the Home and Living Framework (the Framework), this work has been held up. The NDIA is looking at what impact DRC recommendation 7, NDIS Review recommendations 8 and 9 have on the Framework. • Following the government response, the NDIA will return to co-design and progressing the Framework. • NDIA is committed to co-design and working with the sector, and recognises that people with home and living supports are some of the most vulnerable.
Action 1: Schedule future session to talk about the SDA enrolment processes and issues. Discussion to include what levers the agency has to give guidance to the sector about what is built. Action 2: Schedule future discussion to talk about the 3:1 ratio for funding and funding decisions that only allow for living in group supported settings.
- NDIS Review Recommendations 4.1. NDIS Review Recommendations Ms Samantha Jenkinson, Independent Advisor to the IAC led the discussion on the NDIS Review recommendations related to Home and Living.
Ms Jenkinson explained that recommendation 8 is about funding being calculated at a 1:3 ratio for support, a flexible budget for home and living, and specialist navigators. Recommendation 9 is about sharing more information about the market and increasing the focus on participant outcomes.
Members noted:
• The wording is unclear, and people need to understand what ‘average’ funding of 1:3 means.
• Concerns that the 1:3 reflects old thinking and does not consider the rights of people with
disability or self-determination for First Nations participants. It suggests that for some people
shared living is their only option.
• The Agency needs to research and construct a funding approach that genuinely looks at the
individual needs of a person who needs 24/7 supports.
• There is significant work to do to work with people in closed Supported Independent Living
(SIL) services.
• Concerns about what stated support plus flexible budget can possibly look like.
• For flexible supports to work, there needs to be clear outcomes. There also needs to be
consequences, tracking, and accountability.
• Concern that if Home and Living is attached to SIL and is a stated support, the only flexible
budget will be community participation.
• Stating a ratio in government policy is a risk to innovation.
• When exploring what home might look like and be available to people, there needs to be
enablers. Legislative frameworks do not allow for flexibility or creativity.
• There are support coordinators, Hospital Liaison Officers (HLOs), Justice Liaison Officers
(JLOs), system wranglers and support coordinators. It is not clear who will still have a role to
play.
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The Navigator role 5.1. The Navigator role Samantha Jenkinson gave an overview of how the navigator role has been represented in the NDIS Review recommendations and noted that the possible role of future navigators has also been part of the Home and Living Framework discussions. Ms Jenkinson asked the group to think about two questions related to the navigator role:
• What do we think are the skills required for this role? • What are the points for transition – what does a person get from a specialist navigator as opposed to a general navigator?
Members noted:
• That having multiple navigators should not add to the complexity of the NDIS.
• If there is a need for navigators, does that say that the system being built is too complex?
How can the NDIS be made more simple?
• Thinking needs to be done about how a home and living navigator can help to simplify things
for a participant.
• The disability community are frustrated that the independent support coordinators will be
removed, and concerned these will be replaced by a navigator who is an NDIS or partner
staff member who is not trusted.
• Concerns a non-independent support coordinator will stop innovation.
• When home and living navigators were discussed previously, they were not replacing
support coordinators.
• Navigators should not be put in place with block funding or large contracts. There should be
diversity and people must have choice of what navigator they use.
• The role includes understanding the individual disability of the person.
• The navigator needs to have the skills to help the participants overcome difficulty to engage.
• The navigator needs to be working with the participant from the start, not after a personal
budget is allocated.
• The navigator’s work is about being a strong ally and helping people on their journey, and
the role should not be fractured across authorities.
• Concerns the NDIA says it will design the training and skill set for navigators. This should be
embedded in a co-design process.
• The agency of the participant needs to be supported. The plan is owned by the person. The
NDIA’s job is to decide on the funding for the person’s plan.6. Reform for Outcomes 6.1. Reform for Outcomes – Home and Living co-design working group Dr Taleporos led this session. Dr Taleporos noted: • For the first 3 months the working group tried to identify the key issues for Home and Living.
5 Page 81 of 108• Much of what was done was to help the government meet its 8% target. • A short-term initiative the group completed was to streamline the process for a home and living request and change the guidance on the website. • The group also reviewed and improved website messaging on different home and living products, to make the messaging more individualised. • The next step is for the Home and Living co-design working group to move under Penelope McKay’s area, Partner, Providers and Home and Living. Dr Taleporos asked members what they think are priorities for co-design. Members noted: • Navigators • Variation of legislation • Assessment and needs • What constitutes reasonable and necessary support • What needs to be done to achieve social and economic participation (funded and non- funded) In regard to improving the co-design processes Members noted: • People who don’t have a voice need to be included in co-design. • Information that is collected needs to be shared in accessible formats, eg. Easy Read and video. • NDIA needs to make sure people know how the co-design is being done. This needs to happen from the beginning to end so the community is taken on the journey. • Co-design should include face-to-face, local strategies, alongside online strategies. • There is a lot of links between this work and the evidence-based support co-design and the 2 groups should collaborate. • Concern that there was a lack of coordination and process design done when the co-design work was first starting.
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Meeting Close 7.1. End of meeting The next meeting will on July 3 and 4. This will be a joint meeting with IAC and all the reference groups. Members will have the option to come in person to Melbourne or join online. A big focus of the meeting will be the NDIS review and strengthening the way IAC and its reference groups work together to deliver on the IAC workplan. Meeting closed 4.30pm
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Words we use • 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. • 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. • Special Disability Trust: are set up to help family members with the funding for their current and future care and accommodation needs. • Specialist Disability Accommodation (SDA): types of housing that suit people with high support needs. • Supported Independent Living (SIL): support to live in your home, usually for people with higher support needs who live with others with disability. • Strategy: planning a better future and how we are going to get there.
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