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Meeting minutes for Equity and Inclusion Reference Group

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DOCUMENT 5 FOI 23/24-1307 Independent

Advisory Council

OFFICIAL

Meeting minutes for Equity and Inclusion Reference Group

Meeting 1 — 24 August 2023 12.30pm - 4.30pm via MS Teams

Reference Group members at the meeting Leah van Poppel, Principal Member & Co-Chair Jennifer Cullen Tricia Malowney George Taleporos Mark Tonga Barbel Winter Judith Drake Denton Bowles Margherita Coppolino Suzy Trindall Clare Gibellini

NDIA staff at the meeting Kathy redacted: s47F - personal privacy, Director Strategic Advice Gemma redacted: s47F - personal privacy, Assistant Director, Independent Advisory Council (IAC) Secretariat Matilda redacted: s47F - personal privacy, Senior Communications Officer, IAC Secretariat

Also, at the meeting 2 Captioners

Reference Group members who could not come to the meeting Kalena Bos

Words we use

  • Actions: A list of things we need to do. In every meeting we make sure the list has all the things we still need to do on it and nothing we have finished working on.
  • 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:
    • your work is around the NDIS
    • you are a NDIS participant
    • you are part of other reference groups that talk about the NDIS

Delivered by the National Disability Insurance Agency

OFFICIAL

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.

  • Culturally and linguistically diverse (CALD): Is a person who has a different culture or speak another language that is not English. For example, this can be someone who:
    • Is a migrant. They left their country by choice to live and work in Australia
    • Is a refugee. They left their country because it was not safe to live there anymore.
  • Diverse: this means different in some way. Diverse people have personal features or experiences that make them different.
  • Employment: having a job that pays you for your work.
  • Engagement: people working together to share their experiences, thoughts, feelings and ideas on a project.
  • Equity: everyone has the same chance to do or be part of something, no matter their background, identity, or experience.
  • First Nations: people who identify as Aboriginal Australians or Torres Straight Islanders.
  • IAC Secretariat: the team that organises the meetings, sends papers and pays members for attending.
  • Inclusion: something is inclusive when everyone can take part.
  • 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.
  • LGBTIQA+: the letters LGBTIQA stand for lesbian, gay, bisexual, transgender, intersex, queer or questioning and asexual. The ‘+’ is for people who are part of the LGBTIQA+ community but don’t talk about themselves using a word from this list.
  • 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.
  • 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 equity and inclusion. Reference Groups work together to make a plan or find ways to make something happen.
  • Strategy: planning a better future and how we are going to get there.
  • Transgender people: people whose gender identity is different from the one they were given when they were born.
  • Work Plan: is a document that says what the Reference Group will do in the next year, or two years.

Session One - Pink

1.1 Principal Member’s welcome and open

Ms Leah van Poppel (Leah) opened the meeting and Ms Jennifer Cullen (Jennifer) Acknowledged Country.

OFFICIAL

Leah noted Kalena Bos as an apology.

She also noted this meeting will not have a Co-chair. Leah will choose Co-chairs for each Reference Group once the Minister for the NDIS confirms the IAC’s membership.

Session Two - Purple

2.1 Minutes, Actions and Conflicts of Interest and Terms of Reference

Members approved the minutes.

Members had no new conflicts of interest.

Leah noted there was an email last week about an action from the last meeting.

It was from the NDIA about what the NDIS does to check people who are lesbian, gay, bisexual, transgender, intersex, queer or questioning, asexual + (LGBTIQA+) are ok.

Leah told members if they are not happy with the response they should let the secretariat know.

Gemma explained that the LGBTIQA+ Strategy team are happy to have a follow up meeting. There will also be an out of session meeting in the next month about an LGBTIQA+ summit that is being planned. Representatives from this group and other IAC reference groups will be invited.

Action 1: Secretariat to set up meeting between Margherita and LGBTIQA+ Strategy team.

Session Three - Orange

3.1 Member introductions and ‘What you’ve hear in your community’

Members said:

NDIS access and NDIS planning:

  • Culturally and linguistically diverse (CALD) people, migrants and refugees need more help to understand and take part in the NDIS. Especially those who are also LGBTIQA+
  • Pacific Islanders and other smaller CALD groups find it harder to get onto the NDIS because information is not in their language.
  • Concerns that the self-management community is not culturally diverse and is mostly female. Self-management should be possible for everyone, including First Nations, CALD and people with complex needs.
  • People who have neuromuscular conditions, for example stroke, need access and planning to happen quickly. If they get NDIS support early, they won’t need as much support later on.
  • People with disability are more at risk of scams. Participants need more help from the NDIS to understand technology and how to keep themselves safe online.
  • Artificial intelligence could help make better NDIS plans by bringing together complex information in a consistent way. There would need to be good policy in place to support this.
  • Continued concerns planners do not understand psychosocial disability.

NDIS services and supports:

OFFICIAL

  • Reports women with brain injury sometimes get less funding for things like cooking or washing clothes than men with brain injury.
  • CALD parents who are getting older find it harder to support their children with Down Syndrome. They find it hard to understand NDIS home and living supports because of language barriers.
  • School Leavers Employment Supports (SLES) is not working and pushes people into segregated employment, that is often for a few months only.
  • There needs to be more opportunity for people with disability to get different types of work. For example, helping people with disability run their own business.
  • Employers should look at customised employment, where a job is created that matches an individual’s skills and needs.
  • People who are First Nations, CALD or LGBTIQA+ are less likely to know what support they can get for work. They also might not have as much money to run their own business.

NDIS providers and the disability community

  • Some SLES providers are focussed on making money, instead of helping people with disability get good jobs and careers.
  • Support workers might leave disability support work if it takes too long to get their disability worker screening check.
  • Some support workers talk about their participants with other participants. This might be because they don’t have enough mental health support or peer support. This does raised concerns about confidentiality for participants.
  • Some big support work platforms are asking for case notes. Many people with disability are unhappy about this as they don’t want information shared on these platforms.
  • Some participants, mainly in rural areas, do not think their providers can support them well in an emergency. Some providers seem unsure of how to help participants plan for an emergency.
  • There will be a lot of work that comes out of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (Royal Commission) and NDIS Review. The disability community is worried about how much of this work NDIA will need to do and how NDIA will do all this work.

Other services that provide support

  • There needs to be better psychosocial disability support outside of the NDIS.
  • There is a need for services outside the NDIS who support people with disability. For example, someone who needs a mobility scooter because of cancer has no support.
  • There is a lack of support for people with disability in an emergency in rural and regional areas.
  • Concerns with supports provided by Disability Employment Services (DES).
  • The NDIS should share more information on disability in communities, including local Councils. This will improve local support in the community.

OFFICIAL

Action 2: Seek data on plan management type with a diversity split.

Action 3: Seek data on the average time it takes for a person with stroke to get access met, and a first plan.

Action 4: Seek further information on what is available through the Justice Transition Program

Session Four - Blue

4.1 Work planning – NDIA and IAC Work & Review of Reference Group priorities

There was a summary of the current Agency Strategy work that the is underway:

First nations strategy:

  • The First Nations Advisory Council (FNAC) face-to-face for the first time in Sydney recently. The first day First Nations people met without people from government, to decide what would be told to government on the next day. Terms of Reference were also discussed.
  • Erin redacted: s47F - personal privacy the cultural facilitator, also helped First Nations people feel safe.
  • There are First Nations people from all over Australia are included in FNAC.

The CALD strategy:

  • The summit event in 2022 included people from small and big CALD communities and people of all ages taking part.
  • Some were happy with the strategy. Some felt it didn’t include enough of the co-design work.
  • Some changes to the strategy were emailed out last week.

LGBTIQA+ strategy:

  • This work was not a full refresh of the strategy. The activities to support the strategy were changed.
  • Those who took part in work for this strategy would like to see more of outward focus.
  • Members noted that the community felt that the final Strategy did not reflect what community talked about.
  • Members noted that the document is ableist.
  • Members noted that not all people will identify as part of LGBTIQA+ community. There needs to be a way to recognise these people in the Strategy and hear their voices.
  • Sexuality is something that needs to be considered for all in the NDIS, not just in this strategy.
  • The National Autism Strategy will talk about supporting LGBTIQA+ autistic people.

Leah gave a short summary of the IAC Advice:

  • The ‘Equity in the NDIS’ advice is published. The IAC and this reference will track how the NDIA deliver the Advice.

OFFICIAL

  • The Voice of Children advice is finalised. The Agency is developing a response.

The Behaviour Supports advice will go to IAC for approval soon.

Members noted that:

  • It may be good to be more pro-active in the reference group, and not focus too much on the Agency Strategy work going forward.
  • The Equity in the NDIS advice notes the need for an intersectional approach to work, rather than dividing work up into different population groups.

Session Five – Red

5.1 Building the Workplan

The reference group considered what should be included in the workplan for the next 18 months.

Members noted some specific topics of concern:

  • Employment
  • Disability Royal Commission and NDIS Review
  • How to apply intersectionality
  • Ensuring people who cannot communicate verbally have a voice.
  • People with complex medical needs, including those who need nursing care, intubation, or palliative care.
  • How the NDIS supports people experiencing family violence.
  • Sexuality and sex being recognised by the NDIS.
  • Linking better to mainstream research.
  • Ensuring access to health supports for people with disability and ensuring the voice of these people is heard in designing services.

Intersectionality

In considering intersectionality members noted:

  • Consider looking at best practice, eg. Australian Sports Commission
  • This group should provide input into IAC advice about how intersectionality should be reflected in the advice and how it should be done.
  • There is a need go consider intersectionality in participant planning.

The reference group should make a framework that will guide the Reference Groups and IAC to include intersectionality in their work.

  • The framework can
    • Be applied to IAC advice and Agency questions.
    • Look at different life events or issues through the framework to see the different barriers different people might face.

OFFICIAL

  • Also be applied to what comes out of the NDIS Review and Disability Royal Commission.

IAC and Agency work

Members noted that current work that can be a focus for the group is:

  • Informing the next IAC advice to be developed - participants who are ageing.
  • Ensuring intersectionality is considered in IAC and other reference group work.
  • Informing Co-design work
  • Informing Reform for Outcomes

Next steps

Members agreed that they should delay committing to other work until after the recommendations from the NDIS Review and Disability Royal Commission come out.

Members agreed to move the next meeting to November so that there is an opportunity to discuss the Royal Commission and NDIS Review findings.

The Reference Group wants to be less involved in NDIA inclusion strategy work. They would just like updates at meetings, which could be written or a short verbal update.

Action 5: Next meeting pack to include any know informant from the current policy environment.

Action 6: The IAC Secretariat will move the next meeting to November.

Session Six – Brown

6.1 End of the meeting

Leah closed the meeting and thanked Members for their participation.

Members thanked Leah for her inclusive Chairing today.

The meeting closed at 4.34pm.