Minutes of Home and Living Reference Group Meeting 2 – 9 November 2023 | FOI document library

DOCUMENT 10 FO! 23/24-1307 Independent Advisory

Council

Minutes of Home and Living Reference Group

Meeting 2 — 9 November 2023 12.30pm — 4.30pm, MS Teams videoconferencing

Reference Group Members: Leah Van Poppel, Principal Member &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

Kelly Cox

NDIA Representatives:

Andrew Parsons, General Manager of Markets Priority Projects (session 3)

Ed Duncan, Branch Manager Operations and Housing Support (session 4)

Craig redacted: s47F - personal privacy Director Reform for Outcomes (session 4 and 5.1)

Maria Gold, Acting Branch Manager Reform for Outcomes (session 4)

Olivier redacted: s47F - personal privacy Director Technical Advisory Branch (session 4)

Gemma redacted: s47F - personal privacy Assistant Director, Independent Advisory Council (IAC) Secretariat redacted: s47F - personal privacy, Assistant Director, IAC Secretariat

Guest:

Gavin Burner, IAC Member

SATE be

Apologies: Robbi Williams

Delivered by the

National Disability

Insurance Agency 1 Page 69 of 108

Co-Chair’s welcome and open 1.1. Principal Member’s welcome and update Ms Leah van Poppel (Leah) opened the meeting and gave an Acknowledgment of Country. Leah noted there is no Co-chair for the meeting and advised that the IAC will appoint Co-chairs for each Reference Group once 6 IAC member vacancies are resolved through the government decision-making process. Mr Andrew Parsons, General Manager of Markets Priority Projects, NDIA was welcomed as a guest today to hear member reports. Leah noted apologies from Mr Robbi Williams and Ms Samanth Taylor (NDIA).
Minutes and Declarations of interest 2.1. Minutes confirmation and Declarations of interest Members approved the minutes of the last meeting.

Members noted the actions log. Leah noted the ‘Navigator’ discussion paper was circulated this morning. This is not on the agenda, but members may want to discuss it in other business.

The following Conflicts of Interest were noted:

redacted: s47F - personal privacy

What you’ve heard 3.1. Issues Members have heard in their communities NDIS access and planning

• Concern that older participants are encouraged to leave the NDIS. This seems to be particularly when they start experiencing age-related health issues. • Face to face meetings are really important for NDIA staff to understand participants, and are preferred by a majority of participants. • Calls for a greater focus on social connection in conversations about home and living supports.
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• Reports that delays in home and living decisions are impacting participants whose circumstances have changed. • Calls for better long-term planning to help people with psychosocial disability move out of their parent’s home and into housing that suits them.

NDIS service and supports

•  Concern that operating guidelines (Our Guidelines) are unclear about Specialist Disability
  Accommodation, particularly in relation to eligibility.
•  Reports that some families with children approaching the upper age limit of the early
   childhood approach are not well supported to understand the process required for eligibility
  reassessment for the NDIS.
•  Recommendations for core and cluster style housing for people with psychosocial disability
  as a cost-effective way to support their independence. This is housing with fully independent
     living quarters with private bathroom and kitchen facilities.
•  Reports that some people with intellectual disability feel unsafe in Supported Independent
    Living (SIL) accommodation. Calls for more support to help these people decide where they
     live and who they live with.
•  Continued reports of state guardians making decisions that appear to be without taking into
   consideration what the person with disability wants.
•  Reports that people feel pressured by NDIA staff and SDA providers to share their home.
•  Concerns the NDIA does not have appropriate frameworks in place to evaluate outcomes
    that reflect the core principles of the UN Convention of Rights of Persons with Disabilities.

Providers

•  Reports that some providers build accessible housing where it suits them, which can make it
   hard for people with disability to find a home somewhere close to their family and community.
•  Concern that some participants’ choice and control over who they live with in SDA is limited.
•  Reports some providers stop participants from using other providers in their SDA and don’t
   allow visitors.
•  Concern people with disability are not involved in finding and choosing their SDA
  housemates. SDA providers advertise and fill vacancies without any concern for what the
  person with disability wants.
•  Reports that people with disability in remote communities may not apply for the NDIS
  because there are limited providers in their area.

Community and other government services

•  Reports that people with disability are not being able to access appropriate palliative care.
•   Calls for the NDIA to work closely with the health and aged care system to find solutions for
   people in palliative care needing disability support.
•  Reports that some people with disability who leave the justice system are having difficulty
    finding a home that meets their needs. This may contribute to them reoffending.

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• Calls for the NDIA to advocate for improvements to Special Disability Trusts so the legislation better reflects the current cost of accessible housing.

Action 1: Seek response from the NDIA about what the current and future approach is to giving participants the option of face-to-face meetings.

Action 2: Hold out of session meeting to discuss issues with Our Guidelines for SDA (Ms Leah van Poppel, Mr Peter Gregory, Mr Peter Tully, Mr George Taleporos, Mr Leighton Jay and Ms Kelly Cox)

Action 3: Seek Scheme Actuary presentation on what participant outcomes are being measured, particularly home and living outcomes in relation to UNCPRD.

Home and Living Decisions 4.1. Home and Living Decisions Leah welcomed Mr Ed Duncan, Branch Manager Operations and Housing Support, Ms Maria Gold, Acting Branch Manager Reform for Outcomes, and Mr Craig redacted: s47F - personal privacy, Director Reform for Outcomes and Co-Chair of the Independent Living co-design group.

Mr Duncan talked about the current issues with home and living decisions and what the agency is doing to make better quality and faster home and living decisions. This includes:

•  The new process of having a Complex Assessment Meeting when a participant is new to SIL
   or SDA, to check the quality of decisions.
•  Employing more people and having them trained in home and living supports and decision
   making.

Members noted:

•  Concerns about the recent trend with reports of participants 65+ who are being forced to
    residential aged care.
•  Concerns that plans for those aged 65+ are ‘cut and paste’ do not account for a person’s
   unique needs.
•  Ageing in place for people with disability is not discussed in the way it is for the general
   public.
•  Concerns that the NDIA expects to meet most home and living decision-marking
  improvement targets in 6 months, which is a long time for people who are waiting for a home
  and living decision.
•  Questions about what external communications are being provided to people about the
   delays in home and living decisions.
•   Calls for more education and information for occupational therapists and other people who
   provide evidence for home and living decisions.
•  Concerns about planners messaging to participants that the home and living team is
   overloaded and a reassessment will take too much time.
•  Concerns that decisions are being made without meeting with participants or their families.

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• Some people with disability need help to use their home and living supports, especially to understand the recent price changes to SDA.

Action 4: Mr Ed Duncan to seek data on what trends are occurring for participants with home and living supports who are 65+ or approaching 65. Action 5: Hold a future meeting to discuss the trends for participants who are 65+ or approaching 65.

Reform for Outcomes 5.1. Reform for Outcomes – Independent Living Mr George Taleporos, IAC representative on the Independent Living co-design working group gave an update and asked a series of questions about this topic. They are now calling this group ‘Home and Living’. He noted the co-design work that has already gone into the Home and Living Framework, and said the group has a focus on:

• How people identify need and apply for home and living. • How decisions are made about need for home and living supports and the level of funding. • How funding is used to implement a plan to achieve outcomes.

Members noted: • Concerns about the language of markets and providers viewing people with disability as commodities. • Planning discussions need to be participant focussed and participants need clear information about their options. The conversation should be about what is required for me to participate and live safely in my home. • Participants and their families need more opportunity to collaborate with providers and planners on innovation in home and living supports. • The focus should be on participant outcomes and upholding the rights of people with disability. • People with psychosocial disabilities appear to be remaining disadvantaged. Many potential participants do not have access to the NDIA and those who do gain access don’t appear to have enough support. • There is a need to understand what the return on investment would be for genuine social and economic participation and participant focused planning and support. • If participants have more flexible funding there needs to be better guidance, navigators, or other supports. This will help sustainability with better informed decisions. • Need to extend the concept of co-design with community organisations from design to implementation.

5.2. Reform for Outcomes – Better Planning Gavin Burner, IAC representative on the Better Planning co-design working group gave an update and asked a series of questions about this topic.

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Members noted: • Planning conversations should be longer to allow for supported decision making. • Specialised navigators are needed, especially for people with cognitive or psychosocial disability. • There are too many people involved in planning meetings, and they should be face to face. • All documents need to be available in accessible formats, including Easy Read. • Planning should be more like storytelling. It should be a personal process with an appropriately skilled person collecting all the information. • The NDIA can help peer led and disability-led organisations to develop information for participants, noting people trust these organisations. • Participants and their families should get a contact phone number or email address so they can contact the same person every time they need information. • Local Area Coordinators and planners need more training, and this should be delivered by people with lived experience. • Plans should be more flexible and recognise supports like navigators and peer supports have a role in helping people make good choices with their funding.

Action 6: Secretariat to provide detailed notes from session 5 to the presenters.

Meeting close 6.1. Other Business • Members would like to talk about the Navigator role in more detail. This will be an item for discussion at the first meeting of 2024.

6.2. Next Meeting • The next meeting will be in 2024. • The IAC Secretariat is currently finalising the 2024 schedule of meetings. • The meeting closed at 4.40 pm.

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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. • Special Disability Trust: are set up to help family members with the funding for their current and future care and accommodation needs.

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• 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. • Work Plan: is a document that says what the Reference Group will do in the next year, or two years.

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