NDIA Accountability Project

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Minutes of Equity and Inclusion Reference Group Meeting 3 — 22 June 2023

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DOCUMENT 4 FOI 23/24-1307 Independent

Advisory Council

OFFICIAL Minutes of Equity and Inclusion Reference Group

Meeting 3 — 22 June 2023 12.30pm - 4.30pm via MS Teams

Members

Leah van Poppel, Principal Member & Co-Chair Adjunct Associate Professor Jennifer Cullen, Co-Chair Margherita Coppolino

Judith Drake

Nigel Pernu

Suzy Trindall

Felix Walsh

Barbel Winter

Tricia Malowney OAM

NDIA Representatives

Jodie Stangel, Branch Manager, Complex Support Needs

Brooke redacted: s47F - personal privacy, Director, Agency Policy

Kathy redacted: s47F - personal privacy, Director Strategic Advice

Gemma redacted: s47F - personal privacy, Assistant Director Communications, Independent Advisory Council Secretariat

Assistant Director, Independent Advisory Council Secretariat

redacted

Karyn redacted: s47F - personal privacy, Project Officer, Independent Advisory Council Secretariat

Attending

Alan redacted: s47F - personal privacy Independent consultant

Captioner

Apologies

Jadnah Davies

Faye Dickson

Benjamin Garcia-Lee

Catherine McAlpine

Delivered by the National Disability Insurance Agency

OFFICIAL

1. Co-Chair’s welcome and open

1.1. Principal Member’s welcome and update

Ms van Poppel opened the meeting and welcomed Ms Cullen to provide Acknowledgement of Country. Ms Cullen also acknowledged Aboriginal and Torres Strait Islander peoples past, present, and those attending the meeting.

Ms van Poppel noted apologies from Members Catherine McAlpine and Benjamin Garcia-Lee, and Sam Bennett from the NDIA

Ms van Poppel noted that the group last met in March and this this is the last meeting of this reference group before current Member term ends. She noted new membership will be confirmed soon and thanked members for their patience.

1.2. Co-Chair welcome

Ms Cullen noted that the meeting would have a focus on supported decision making and complex support needs, with the Agency Policy Branch and Complex Support Needs Branch joining the meeting to discuss these topics.

Ms Cullen noted that updates on the Agency First Nations Strategy and Cultural and Linguistic Diversity Strategy (CALD) Strategy are not on the agenda today. Written updates were included in the meeting pack.

Ms Trindall provided an update of the First Nations Strategy work she has been involved in, noting:

  • Safe engagement has been a big part of the conversation and it is positive that people in the regions are enabling connections on the ground.
  • It has been a positive experience and communication has been good. Ms Trindall has been able to provide feedback 1:1 with the First Nations Engagement Officer.
  • The group has had opportunity to meet with the NDIS review panel.

Ms Cullen noted the fantastic contributions that Ms Trindall has been making to the First nations work.

In regard to the CALD Strategy, Ms Cullen reflected that she had attended the first gathering in Melbourne. It was well organised and it was great to have an intergenerational spread in the room, with elders as well as new leaders engaged.

Ms Cullen read the update on the LGBTIQA+ Strategy provided by the Co-Design and Engagement Branch:

“Following Liz Callaghan’s attendance at the last Equity and Inclusion Reference Group meeting, we provided a briefing to incoming Senior Executives on proposed next steps for the LGBTIQA+ strategy. Following this discussion and the success of the CALD summit held earlier this year, the decision was taken to start conversations with the LGBTIQA+ and disability community on next steps by holding a summit in the later part of 2023. Our intention is to co-design the summit with LGBTIQA+ and disability stakeholders.

Once this approach is finalised, we will provide a briefing to the IAC Equity and Inclusion Reference Group on the proposed approach. Recent staff departures from the LGBTIQA+ strategy team has resulted in some delays in progressing this work. We anticipate being able to provide a full briefing to the IAC Equity and Inclusion Reference Group at the next meeting scheduled for Thursday 24 August 2023.”

OFFICIAL

Ms Coppolino noted that Inclusive Rainbow Voices (IRV) was launched last month at the Victorian Pride Centre. The live stream of the launch can be viewed on the website which is now live ([IRV website](IRV website)). IRV will consult with the LGBTIQA+ disability community around developing a strategic plan. It is Victorian focussed at the moment, but another State has approached IRV about extending its work.

Ms Coppolino noted the anti-transgender rights and drag story is having a major effect on the LGBTIQA+ community and requested the Agency find a way to check in with LBGTIQA+ participants. There needs to be messaging that NDIA is safe and inclusive.

Mr Pernu noted his own personal challenges and Ms Drake offered to provide some support with appropriate linkages to support workers. Ms van Poppel also noted the Secretariat may be able to support if required.

Action 1: Secretariat to follow up further on support being offered to LGBTIQA+ in the context of anti-transgender rights activism in communities.

1.3. Minutes confirmation, Matters Arising, and Declarations of Interest

Members confirmed the Minutes from Meeting 2 – 23 March 2023 and noted the matters arising. No new declarations.

In relation to the actions, Ms van Poppel noted updates on Independent Advisory Council (IAC) advice:

  • Currently there is no public reporting about the progress of IAC advice. The Agency Response is not a publicly released document. There have been positive discussions with the Agency about a published Agency Statement against Advice. Ms van Poppel will update the group as these progresses.
  • The Equity in the NDIS Advice has been delayed by processes and staff changes in the Agency. The recommendations of the Advice are being implemented by the Agency, for example, through the work on the diversity strategies. It is planned the Agency will report to IAC in August this year on the progress of implementing the Equity Advice.
  • The Behaviour Supports Advice went to the Intellectual Disability Reference Group at its last meeting. It will now go to the IAC for endorsement.
  • The advice on the voice of children and young people, which came through the Children, Young People and Families Reference Group, has been to IAC and an Agency response is being prepared.
  • The advice on participants who are ageing is also on the IAC workplan. This is likely to begin in the new financial year.

Members noted:

  • It would be good to understand better how the IAC will ensure that there is a diversity lens over all its advice.
  • There is a need to consider how to best channel the knowledge from this group into the work being undertaken by other reference groups.
  • Concerns that the conversation is about behaviour supports, where it should be about what is causing the behaviour. Often it is about people being unable to communicate their needs.
  • In talking about behaviour supports it also needs to be considered what can be done this this space (eg. empowerment, supported decision-making), not a focus on negative impacts.

OFFICIAL

Action 2: Include the question of how to embed Equity and Inclusion in all IAC work on next meeting agenda.

2. What you’ve heard

2.1. Issues Members have heard in their communities

Members raised the main issues they heard in their networks, including:

NDIS access and planning

  • Systemic issues with home and living supports and plans. This includes supported independent living (SIL) plan inflexibility, specialised disability accommodation (SDA) provider malpractice and lack of housing availability.
  • Continuous NDIS accessibility administrative issues.
  • Concerns that participants require a nominee if they are unable to sign something, which does not support supported decision making. NDIS asks for a nominee to sign NDIS access forms for people with significant physical disability who could for example potentially use a signature stamp or sign with a recognised symbol.
  • Some people with psychosocial disability, who are at risk of homelessness, say they find it almost impossible to access the NDIS.
  • Some plan managers say that they are seeing increased funding reductions for participants since [National Cabinet’s announcement of an 8% annual growth target for the NDIS](National Cabinet’s announcement of an 8% annual growth target for the NDIS). There are also calls from some plan managers for the review of their service costs to account for consumer price index (CPI) increases.

NDIS service and supports

  • Inconsistent and confusing messaging from local area coordinators and planners, who sometimes shift responsibility to plan managers. This relates to charging high intensity rate for participant supports.
  • Calls for the NDIA to explicitly clarify the purpose of ‘check ins’ with NDIS participants. For example, NDIS phones some participants for ‘check in’ and then extends plans without a participant’s knowledge.
  • Reports that some people with disability (in particular those with psychosocial disability) find it hard to find suitable and safe supports workers, which is not only disempowering but puts them at risk.
  • The lack of support workers options causes those people who want individualised living option (ILO) supports to be funnelled towards SDA options, given that is the only pathway to reliable support workers.
  • Particular concerns for lack of support workers and housing options in rural and remote areas.
  • Concerns the support system is becoming more transactional rather than relational.

NDIS Providers and disability community

OFFICIAL

  • Reports of an alleged system of incentivised referral and payment practices among registered providers.
  • Calls for the expansion of lesbian, gay, bisexual, transgender, queer or questioning, intersex, asexual, (LGBTIQA+) focused NDIS providers. This would be seen as providing options for culturally safe supports to LGBTIQA+ people with disability.
  • Calls for the NDIA to ensure NDIS participants who identify as LGBTIQA+ are safe and receive trauma informed supports, especially in relation to the recent anti-transgender narrative in the community.
  • There is a need to look at the quality of all interactions between participants and NDIS providers to ensure they are considering and supporting intersectionality.

NDIS Review

  • Calls for the NDIS Review to conduct more in-depth engagement with the LGBTIQA+ community, to ensure their voices are heard and represented in the review.
  • Networks have highlighted the importance of work being done by the NDIS Review, NDIS Quality and Safeguards Commission, and the Independent Mental Health Advocacy’s (IMHA) [NDIS mental health toolkit](NDIS mental health toolkit) on equity issues related to those people with psychosocial disability.
  • Noted that the NDIS Review team is looking into cross-cultural issues within SIL and SDA.
  • The importance of newly established advocacy organisations for LGBTIQA+ people with disability, like [Inclusive Rainbow Voices](Inclusive Rainbow Voices).

3. Supported Decision Making Policy

3.1. The Supported Decision-Making Policy and Implementation Plan

Ms Brooke redacted: s47F - personal privacy, Director Agency Policy Branch provided an update on the Supported Decision-Making Policy, which describes the NDIA’s position on supported decision making.

Ms redacted: s47F - personal privacy noted that:

  • The work started in 2019 with the IAC Supported Decision Making advice. In 2022 it became one of the six key priorities for co-design.
  • The focus of co-design was to establish a shared understanding of the issues, identify immediate improvement and look at longer term components to achieve these through co-design.
  • The implementation plan has been cross-referenced with the current recommendations from the Disability Royal Commission coming out earlier in the year.

Members noted:

  • General agreement that the policy is high-quality, which is a credit to the time taken to properly co-design.
  • The implementation plan should identify short-term and long-term goals.

OFFICIAL

  • The need to address structural barriers to supported decision making. For example, people living in group homes with access to core supports only, not capacity building.
  • The public advocate in Victoria has been pushing for people with disability to have their own voice and would like NDIA to be on board with this.
  • Concerns the NDIA in the end makes the decisions in regard to planning, despite the policy.
  • Choice and control means something completely different depending on if someone is from an individualistic or communal culture. NDIA needs to consider how a person has autonomy in context of their community.
  • Supported decision making should start with intersectionality and allow for dignity of risk.
  • The need to focus on allowing people who live in group settings to make their own decisions and have a voice, for example group homes and prisons.
  • When a decision is being made for an individual, that person should completely understand the impact that decision has on their plan and their daily life.
  • The importance of having different peer groups available so that people with disability can have options on who they with on engage on different issues.
  • Questioned what role the NDIS has to support people whose rights are challenged under guardianship mechanisms, like nominees and state trustees.
  • There is a need to build up community knowledge of supported decision making so that participants and family feel it is realistic and achievable.
  • When referencing the ‘sector’ in the policy and implementation plan it needs to be clear this includes providers.

4. Complex Support Needs Branch

4.1. The Complex Support Needs pathway

Ms Jodie Stangel, Branch Manager of the Complex Support Needs Branch provided an overview of the Complex Support Needs (CSN) Branch, noting:

  • CSN is designed for participants with complex needs and people with interface with statutory bodies.
  • Each CSN participant has a specialist planner with clinical and mainstream interface experience.
  • A planner will have up to 55 participants that they support ongoing. The planner has a relationship with the participant and their support coordinator.
  • CSN is not designed to be long term and most participants are supported 18 months to 3 years. Around 10% will require ongoing support.
  • CSN sits in the branch along with Justice Liaison Officers. The new national justice planning team will also be put in place by August this year.
  • There has been some dedicated recruitment of First Nations staff recognising the over-representation of First Nations people in the justice system.
  • There is a small cohort of children and young people who sit under the CSN who are at risk of their parents relinquishing care.

OFFICIAL

  • There is a short-term response model for participants who have some identifying factor of complexity. This team will provide a specialist planner to support with intense intervention.

Ms Stangel noted regarding restrictive practice:

  • Every participant with a behaviour support plan and restrictive practice has clinical oversight every 12 months.
  • A key measure when a person leaves CSN pathway is to measure if they are leaving with less restrictive practices. This is measured monthly.

Ms Stangel noted Regarding supported Decision Making:

  • Often participants in CSN make decisions that put them at risk and most have an appointed decision maker or plan nominee.
  • With the high percentage of First nations participants, the CSN team recognises the need for culturally safe practice and having the right people involved to support decisions.
  • The supported decision-making policy will be a challenge to implement for CSN participants. The team has regular case conferencing and implementation and monitoring processes that ensure the participant is always involved. However, the participant is usually not the decision maker.

Member noted:

  • There has been noticeable improvement in the process of referring from the Local Area Coordinator (LAC) to CSN pathway.
  • Data shows that some CALD communities are equally over-represented in the justice system.
  • There is concern in the media about unauthorised restrictive practices and questioned what is known about kids in out of home care or at risk with unauthorised practices.
  • There is a lack of safe places for young transgender kids and questioned whether the CSN team provides anything specific to this cohort.
  • When participants make poor decisions in the past, or are being treated under the Mental Health Act, they shouldn’t be excluded from being supported to have some control over decisions about their life going forward.
  • There is a need to support to collaboration rather than paternalism.
  • Where participants have decision makers who adult guardians or trustees, the Agency can only influence these.
  • Trust is vital and takes time, and there is a need to recognise the trauma of a person’s experience and that it will take time for a participant to build that trust with others. The ongoing changes in people providing supports means that trust often cannot be built.
  • The need to consider the place for circles of support to provide some assurance to complex and vulnerable people.
  • The positive outcome recently with a participant in the leaving custody after 20 years, and that a dramatic change in the man’s behaviour is likely to be seen with his reconnection to land and culture.

OFFICIAL

5. Session 5 Meeting Close

5.1. Other Business

There is a one hour out of session with Dr Chan on 14 July to discuss restrictive practices and behaviour supports.

Action 3: Secretariat to circulate list of questions for Dr Chan for final feedback

5.2. Next meeting

The Principal Member and co-Chair thanked members their participation, their patience dedication, truth and storytelling in each meeting.

The next meeting will be held on August 24 and will be an online meeting.

The meeting closed at 4.34pm.