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Minutes of the Children, Young People and Families Reference Group

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DOCUMENT 3 OFFICIAL: SENSITIVE

Independent Advisory Council

Minutes of the Children, Young People and Families Reference Group

Meeting 3 – 20 March 2024 12.30 -4.30pm via MS Teams videoconferencing

Reference Group Members

  • Leah van Poppel (Principal Member and Co-Chair)
  • 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
  • Ellen Gould

NDIA Representatives

  • Samantha Taylor, Acting General Manager, Children’s Taskforce and Acting General Manager, Policy, Advice and Research
  • Michelle Kellert, Branch Manager, Complex Support Needs (session 4)
  • Simon O’Brien, Acting Branch Manager, Government Initiatives (session 4)
  • Fran redacted Director Planning, Complex Support Needs (session 4)
  • Caitlin redacted Mainstream Interface & Initiatives, Government Initiatives (session 4)

Secretariat

  • Gemma redacted Assistant Director, Independent Advisory Council Secretariat
  • Matilda redacted Communications Officer, Independent Advisory Council Secretariat

Attending

  • Auslan Interpreters

Apologies

  • Katharine Annear
  • Sharon Boyce (Co-Chair)

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

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Independent Advisory Council

1. Co-Chair’s welcome and open

1.1. Co-Chair welcome

Ms van Poppel opened the meeting with an Acknowledgement to Country.

Ms van Poppel noted that Sharon Boyce is an apology today. Today would have been Sharon’s first meeting as Co-Chair of this group.

Ms van Poppel noted that since the last meeting Liz Reid has resigned from her position on IAC and this reference group redacted: s47F - personal privacy

Ms Samantha Taylor, General Manager of the Children’s Taskforce was welcomed to the meeting. Ms Taylor is observing the full meeting and providing an update on the Children’s Taskforce.

Ms van Poppel noted the recent appointed of Adjunct Professor Janine Mohamed as the DCEO First Nations.

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

Members approved the minutes from the last meeting on 12 October 2023.

Members noted the Matters arising.

redacted: s47F - personal privacy

Members noted the Matters arising.

2. What You have Heard in your community

2.1. Issues Members have heard in their communities

Members noted key issues they are hearing in the community:

NDIS Services and Support

  • Concerns that there are increased waiting times with the PACE system for people needing plan review, for both scheduled reviews and change of circumstances.
  • Reports that LACs are writing the ‘about me’ section in PACE and the information is wrong. Other participants have the section edited and shortened due to character number limitations in PACE. People need to be given voice and write this themselves.
  • When going through the planning process with Local Area Coordinators (LACs) it can be unclear if the plan is based on an initial conversation or if there will be a designated planning meeting.

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  • Concerns LACs do not look at reports to prepare for planning meetings.
  • For people in crisis there is a lot of confusion how to escalate a change of circumstances, and there are risks to the participant.
  • When a participant with a primary disability then seeks support for an additional disability it is retraumatising.
  • People with a complex trauma history a retraumatised when trying to get support from the NDIS or making a complaint.
  • There are financial barriers to the NDIS when a person needs to pay out of pocket for a functional capacity assessment to get access.
  • Confusion in community about if a functional capacity assessment is needed for Category B disabilities.
  • Participants are asked to resubmit information to evidence access to a support they have always needed. At times the report may cost more than the requested support.
  • Participants are being asked for more evidence that they still require access and only have 28 days to respond, which causes stress.
  • There is a workforce shortage, and this is made worse when therapists are writing reports instead of working with children on therapy.
  • Concerns the interpretation of reasonable and necessary has been tightened, particularly for consumables.
  • Supports are inconsistent and multiple children in one family of similar age with similar disabilities and receiving very different funding in plans.
  • Many young people with Autism Spectrum Disorder in rural and remote areas not getting access to the NDIS.
  • Concern that NDIA is using the term ‘co-design’ to label work that is not genuine co-design.
  • Plan extensions from one year to two years have not been well communicated and have caused confusion.
  • Concern about the limitations in funding for behaviour support plans. Funding may only allow for the plan to be developed but there is no funding for a practitioner to work with the family.
  • Parents find the lines of questioning about restrictive practices difficult in planning meetings, they feel their parenting is being questioned.

The disability community

  • Young people with intellectual disability don’t have a voice or choice and control. Family members do all the decision-making.
  • The capacity of young people can be built with peer support. It can help them get more involved if they are able to be in social groups with their friends rather than just with family.
  • People in remote areas do not have access to enough support and the States and Territories need to take a greater role. First Nations participants also have additional cultural needs.

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  • Concerns in the autistic and broader community about the Inklings program and that it is linked to ABA therapy.
  • Concerns that different schools have different requirements when children need to access therapies on site. Children are missing therapy when schools make it too hard, or they are getting taken out of school in order to get therapy.
  • Education is a vital component in a child’s growth and development, and the variance in the experience of families causes a lot of stress.
  • There needs to be greater effort in the community and services for supported decision-making.
  • A new ’Social Services Regulator’ will be established in Victoria, which will incorporate the functions of the Disability Services Commission, Victorian Disability Worker Commission and the Disability Worker Registration Board. It is hoped this will take in consideration the complaints pathways and registration processes etc for disability workers within NDIS.

The NDIA Review

  • Children and Young People with Disability Australia (CYDA) ran 3 community surveys about the NDIS review which revealed 6 key themes: people want to understand the practical impact of the review particularly in regard to workforce; unmet need, especially for foundational supports; flexibility in managing funding, improved care coordination; the need for a whole of life approach.
  • Families need assurance that long term commitments won’t be disrupted by reviews like the NDIS review.
  • Regarding all the reforms there seems to be a sense of some good things happening in the system. For example, there is a lot of investment in aspects of chronic health care specifically targeting better coordination for children who are participants and their families.
  • There is not information about the NDIS review that is young person friendly, and this is creating fear as people are fearing the worst.
  • Concerns that people with cerebral palsy or who are autistic with lower supports needs will be removed from the Scheme.

Action 1: Information to be provided out of session to respond to members concerns about increased plan delays with PACE.

3. Update on the Children’s Taskforce

3.1. Update on the NDIA’s Children’s Taskforce

Ms Taylor presented an update on the NDIA’s children’s Taskforce, including:

  • The Taskforce was set up almost a year ago, with the aim to improve how the NDIS works for children and young people.

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Independent Advisory Council

It is now doing more work to make sure the Agency is listening to young people. The IAC’s Advice for improving the NDIS for children and young people will help guide this.

It is recognised some of the information from the NDIS Review can be scary. The Agency wants to work with community to respond to this, and work on things it can act on now.

In regard to the Inklings pilot program, Ms Taylor noted that Inklings is all about child agency and supporting families where there is an observed concern. It trains parents to better engage with their child. The pilot in WA is in early stages. The announcement of a pilot in SA is separate to what is happening in WA, and there is consultation with autistic communities about what this will look like.

Members noted:

  • There are no guidelines that exist for how to do great co-design with young people and families, this reference group should be a key resource for the Agency to develop its guidelines.
  • They would like to know what mechanisms would be considered for how to make the voice of the child is heard directly wherever possible.
  • When talking about improving practice, it is important to listen to the participant and their family and what works for them, and balance this with considering the experience of the practitioner as well as evidence from research.

4. Child protection interface

4.1. Child protection interface

Ms van Poppel welcomed Michelle Kellert, Branch Manager Complex Support Needs Branch, Simon O’Brien, Acting Branch Manager Government Initiatives, and Fran redacted: s47F - personal privacy Director Planning, Complex Support Needs.

The Agency staff gave an overview of activities underway to support the child protection interface, including that:

  • Complex Support Needs Branch (CSN) supports some of the more vulnerable children and children at risk in the Scheme, including those connected to other agencies.
  • There are currently 1700 children being supported by CSN.
  • There are 8 Memorandums of Understanding with different jurisdictions to work with families.
  • There is no consolidated data on numbers of kids with NDIS packages in Out of Home Care.
  • The Agency is in process of setting up agreements with state agencies, this will hopefully allow real life reporting on data for kids in various settings.
  • The transition to adulthood is recognised as a vital period for support. A comprehensive practice guide has been developed for planning staff. This is considered the ages of around 15 to 25.

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The NDIA is working closely with the Department of Social Services on the implementation of Safe and Supported (2021-2031), the national framework for protecting Australia’s children.

Members noted:

  • The need for more shared data to understand numbers of children in Out of Home Care with NDIS packages and their diversity.
  • When a young person is involved with child protection and is nearing the age of 18, there needs to be thinking and planning done for them 12 months ahead of their 18th birthday to make sure they have the right supports and accommodation.
  • Reports of parents being suggested that they give up guardianship of their children when asking for more support. Kids are missing out because families don’t see the LACs as safe and don’t want to risk exposure to child protection.
  • Members would like more information about situational factors that move children into CSN.
  • Are there other things the NDIS can be doing to coordinate a child’s support and engagement.

Action 2: Mr O’Brien to provide more information on Safe and Supported.

5. NDIS Review Recommendations

5.1. NDIS Review Recommendations

Samantha Jenkinson, IAC’s Independent Advisor summarised key messaging in the NDIS Review recommendations 1,2 and 6, which relate to supports for children under 9 and foundational supports.

Members noted:

  • There must be capacity to identify development delay with consistency and timeliness.
  • There must be timely access to supports that are individualised to the need of the child.
  • A participant needs to be able to get started with their plan supports once it is approved.
  • Children’s engagement in education must be supported.
  • There must be ongoing and regular communication to the community about the NDIS review to help manage community anxiety.
  • ‘Foundational supports’ needs a clear definition. Can the NDIS say if it currently funds any that is considered a foundational support, that may not be funded in the future?
  • Family capacity building is vital. Families must be supported to see possibility and have the thinking ‘what is possible for my child’. The medical model is entrenched in a deficit model.
  • There must be equity in support, so families with more resources and education don’t get better supports.
  • Regarding screening and assessment, it needs to considered who already has the knowledge and sensitivity to do this well, so families aren’t retelling their stories.

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  • Would like to see a big picture view of birth to 18, including transitions, pathways, child and family agency, and individual voice.
  • Better coordination with schools is necessary.
  • Would like to see a trained parent peer worker in every organisation providing foundational supports.

Ms van Poppel noted that the IAC is trying to work on what it can do to influence any changes from the NDIS Review. IAC will keep communicating with reference groups about what it is looking at.

6. Meeting close

6.1. Other Business

None.

6.2. Next Meeting

The next meeting of the reference group will be a combined IAC and reference group meeting on July 3 and 4. This meeting will by hybrid, so members can attend face to face in Melbourne or online.

Action 3: Secretariat to share video and transcript from Children’s Taskforce session Ms Taylor.