NDIA Accountability Project

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Minutes of the Children, Young People and Families Reference Group, Meeting 2 – 12 October 2023

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Independent Advisory Council

Minutes of the Children, Young People and Families Reference Group

Meeting 2 – 12 October 2023 12.30 -4.30pm via MS Teams videoconferencing

Reference Group Members

  • Leah van Poppel
  • Marissa Carlyon
  • Abrahim Darouiche
  • Professor Les White
  • Skye Kakoschke-Moore
  • Jake Briggs
  • Vanamali (Mali) Hermans
  • Mija Gwyn
  • Sylvana Mahmic
  • Melo Kalemkeridis
  • Tahlia Blanshard
  • Tash Binder
  • Liz Reid
  • Ellen Gould

NDIA Representatives

  • Samantha Taylor, Acting General Manager, Children’s Taskforce and Acting General Manager, Policy, Advice and Research
  • Loretta Kingston-Brown, Branch Manager, Early Childhood Services, Children’s Taskforce

Secretariat

  • Kathy redacted: s47F - personal privacy Director Strategic Advice
  • Gemma redacted: s47F - personal privacy Assistant Director, Independent Advisory Council Secretariat
  • Matilda redacted: s47F - personal privacy Communications Officer, Independent Advisory Council Secretariat

Attending

  • Auslan Interpreters

Apologies

  • Katharine Annear

Delivered by the National Disability Insurance Agency NOT FOR FURTHER DISTRIBUTION - FOR OFFICIAL USE ONLY

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1. Co-Chair’s welcome and open

1.1. Co-Chair welcome

Ms van Poppel opened the meeting with an Acknowledgement to Country. She also acknowledged the impact of the upcoming Referendum on First Nations people.

Ms van Poppel noted that we are waiting for the appointments of six IAC member vacancies to be resolved through the government decision-making process. She acknowledged that this is a difficult situation and thanked the existing members for their continued hard work.

Ms van Poppel thanked members for their patience and Sam Taylor for coming to the meeting.

1.2. Confirmation of Minutes, Matters Arising and Declarations of Interest

Members approved the minutes from the last meeting.

Members had nothing to add to the current Matters Arising.

Members declared the following conflicts of interest:

  • redacted: s47F - personal privacy

Ms van Poppel explained the Work Plan will soon go to the IAC for them to review. This is to ensure alignment across IAC and Reference Group work.

The IAC Secretariat will send Reference Group members a document combining the results of the Workplan session held in the last Reference Group meeting and the recent out of session Workplan session.

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2. What You have Heard in your community

2.1. Issues Members have heard in their communities

NDIS access and planning

  • Concerns high assessment costs and long wait times for a diagnosis will result in some children missing out on disability support, especially in families with multiple children with disability.
  • Calls for NDIS planners to use a trauma informed approach, especially for parents and families with experience in the out of home care system.
  • Concern some Early Childhood Partners (Partners) and NDIS planners are directing children with developmental delay to therapy without connecting the family to the peer supports they need.
  • Reports of the NDIS reviewing supports the family thought were confirmed and that this can cause a lot of stress.
  • Members highlighted the need for more cultural safety training for NDIA and Partner in the Community staff.

NDIS service and supports

  • Concern families do not know how to find safe service providers for their children. Members suggested that Partners could give parents resources on this.
  • Continued concern that some NDIS funded therapies are discouraging parents from playing an active role in their child’s development. Members were also troubled by the number of parents asking for these therapies instead of safer and better family-focused approaches.
  • Members explained some participants are afraid of how the NDIS and other services may respond if they make a complaint. Therefore, the NDIS needs safe and anonymous ways to complain.
  • Members highlighted the difficulties of being a carer with disability, including a lack of understanding by the NDIS of how their carer role can impact their disability.
  • Members reported that support workers do not always understand how to engage with young children or give older children the mentorship they need. They recommended better regulation for the support work industry and work to increase the status of disability support work.
  • Members highlighted that behaviour support plans are often difficult for parents to understand and are therefore not always used correctly at home and school.

Community and other government services

  • Reports the NDIS and child protection services have difficulty working together. This can put children with disability in out of home care at risk of homelessness when they turn 18 years old.

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  • Members are optimistic the current increase in public awareness of disability rights will lead to a greater effort to understand and include them in other government and community services.
  • Reports families of children with disability can find it hard to take part in community activities because of social and physical barriers.
  • Members shared how disability experts in state and territory education systems can help schools include children with disability by working with the NDIS.
  • Concern that schools and the NDIS understand inclusive education differently and that school principals will be left to decide how children with disability will take part in their school.
  • Reports children with disability are sometimes excluded in schools even when they have lots of NDIS support.
  • Members explained that a student’s disability can mean they have less time for learning and socialising. The way some schools are set up and run can mean they get even less time.
  • Members highlighted how some rules for accessible services make them less accessible for some people with disability.

Disability community

  • Members are concerned the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability recommended changes may not be made as quickly as they need to be made.
  • Members highlighted that social connections help young people with disability find their first job.
  • Members highlighted that the way the media discusses disability can make it harder for children with disability to be included amongst their peers.

Action 1: The Reference Group to have further discussion regarding Out of Home Care at a future meeting. (This relates to transitions in the draft workplan priorities)

Action 2: Circulate Media Diversity Australia Disability Reporting Handbook 2021.

3. Update on the Children’s Taskforce

3.1. Discussion of the work of the Children’s Taskforce

Ms Taylor and Ms Kingston-Brown shared the recent work of the NDIA’s children’s Taskforce, including:

  • Work to prepare for the NDIS Review recommendations.
  • Supporting the work of Partners and National Delivery staff in remote communities working with children and families. This includes creating resources and running knowledge-sharing sessions.
  • Supporting Partners to move away from a planning focus to a navigation-based role where they support families and connect them to services.

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  • Connecting with experts and stakeholders in the field and building their engagement strategy.
  • Finalising some work items for the Early Childhood Early Intervention (ECEI) Reset
  • Work to prepare for the Australia-wide rollout of PACE, the NDIA’s new digital business system.
  • Connecting with other government agencies on the national approach to early childhood and Australia’s disability strategy.

Members noted:

  • Long wait times to see Partners can lead families to seek advice elsewhere. Members are concerned by the number of families wanting NDIS funding rather than the other supports Partners might recommend to them.
  • Medical advice currently guides many early decisions on a child’s disability or developmental delay. Programs like the NDIS’ Early Supports, which build the parent’s capacity, are important for taking families out of the medical model towards a social model of disability.
  • Families can be unsure of what information they need to look for. It is important to offer information in places and ways parents can find it. This includes using simple language like ‘helping my child communicate’ instead of ‘assistive technology’.
  • NDIS participants need help to self-manage. Some families don’t realise self-management can be a big responsibility.
  • Co-design should be used to understand how information should be shared with families.
  • The good work the Children’s Taskforce has done on co-designing resources for early childhood educators.
  • Early childhood education has an important role in supporting children with developmental delay to reach their full potential.

4. Royal Commission

4.1. Members discussed the Royal Commission report

Members shared their early reflections on the outcome of the Royal Commission, including:

  • Questions around how long someone with disability should volunteer before they can get a job.
  • Concerns around the language of ‘managing’ people with disability in the justice system, used especially in volume 8, Criminal Justice and People with Disability of the Royal Commission report.
  • Identified transport, early childhood and post-school pathways as possible gaps in the report.
  • Discussion about how long it will take to implement some of the recommendations which members identified as less complex, like those on the Support Worker Registration Accreditation Code of Conduct.

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  • Discussion of the Disability Services and Inclusion Bill currently before parliament and how this will relate to the Disability Rights Act proposed by the Royal Commission.
  • Questions around the relationship between a new Disability Rights Act proposed by the Royal Commission and the Human Rights Act (1986).

5. Reform for Outcomes

5.1. Discussion of NDIA’s Reform for Outcomes work

Ms Sylvana Mahmic and Ms Skye Kakoschke-Moore gave updates on their work with the NDIA’s Reform for Outcomes.

Regarding the workforce capability work, members recommended:

  • Specialist planners who understand children and families.
  • Training to help planners understand trauma and how to protect participants from its effects.
  • Collecting data on all the skills planners currently have, to find knowledge gaps to target with training.
  • The co-design work should also focus on how to keep good staff.
  • Focusing the recruitment strategy on hiring people with disability.
  • Hiring disability-led training organisations and giving NDIA staff a safe space to ask questions and learn from people with disability.

Members gave the following feedback on the plan flexibility Reform for Outcomes co-design work:

  • Flexible plans could include the ability to move funding from different categories beyond your core supports or choose a section of your plan to review.
  • Members highlighted the importance of flexible plans in times of crisis like natural disasters and family or sexual violence.
  • Members suggested allowing participants over 16 years old to gradually increase their responsibility for their plan. A flexible plan would support them to build their capacity and the skills needed to manage their plan at 18 years old.
  • Members recommended plans are flexible for common changes, like starting or leaving school. For other life events like starting a family or moving house a participant would apply for a change in circumstance plan reassessment.

Action 3: Secretariat to share the notes from the chat with Ms Mahmic and Ms Kakoschke-Moore.

Action 4: Secretariat circulate Reform for Outcome questions for further feedback.

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6. Meeting close

6.1. Other Business

None.

6.2. Next Meeting

This is the last meeting for the year, the meetings dates for next year will be sent to members as soon as they are decided on.

The meeting finished at 4:30 pm