DOCUMENT 1 FOI 23/24-1307

Minutes of the Children, Young People and Families Reference Group

Meeting 1 – 2 August 2023 12.30 -4.30pm via MS Teams videoconferencing

Reference Group Members

Leah Van Poppel, Principal Member & Co-Chair
Sylvana Mahmic, IAC Member
Liz Reid, IAC Member
Mija Gwyn
Melo Kalemkeridis
Skye Kakoschkey-Moore
Tahlia Blanshard
Katharine Annear
Ellen Gould
Leslie White
Abraham Darouiche
Tash Binder

NDIA Representatives

Kathy redacted: s47F - personal privacy Director, Strategic Advice
Gemma redacted: s47F - personal privacy Assistant Director, Independent Advisory Council Secretariat
Karyn redacted: s47F - personal privacy Project Officer, Independent Advisory Council Secretariat
redacted: s47F - personal privacy Assistant Director, Independent Advisory Council Secretariat
Matilda redacted: s47F - personal privacy Communications Officer, Independent Advisory Council Secretariat
Tiffany redacted: s47F - personal privacy Indigenous Apprentice, Independent Advisory Council Secretariat

Attending

Alexis Diamond, Branch Manager Early Years Strategy, Department of Social Services
Professor Bruce Bonyhady AM, NDIS Review Co-Chair

Apologies

Marissa Carlyon
Vanamali (Mali) Hermans

1. Co-Chair’s welcome and open

1.1. Co-Chair welcome

Ms van Poppel opened the meeting by acknowledging the Traditional Owners and their continuing connection to land and sea.

She welcomed our new members and recognised that our meetings must be accessible to meet all needs. She advised the Reference Group to make their points clearly without using jargon or acronyms.

Ms van Poppel noted Marissa Carlyon and Mali Hermans as apologies, and that Ms Reid and Mx Annear would leave early.

Ms van Poppel acknowledged the work of Ms Mahmic as Co-chair in the last term of the Reference Group. The Minister has not announced appointments to vacant positions on the Independent Advisory Council (IAC), so this Reference Group meeting will not have a Co-Chair.

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

Members who attended the previous meeting confirmed the minutes from Meeting 3 held 11 May 2023.

Ms van Poppel reminded Members of the importance of declaring all interests and that the Secretariat keeps a record of all declarations.

Members made the following declarations:

redacted: s47F - personal privacy

Members confirmed the matters arising register.

2. Introductions and What You’ve Heard

2.1 Member introductions, incorporating issues Members have heard in their communities

In this session members gave a brief introduction of themselves and their experience. Members then discussed the main issues they have heard in their networks, including:

NDIS planning

NDIS should let parents know before the meeting that they have the option to roll the plan over if there are no changes in the child’s support needs. This could avoid spending on professional assessments.
Planning meetings are often traumatic for families.
Transitioning into the Local Area Coordinator (LAC) model from Early Childhood (EC) is difficult for parents, who feel their child is being moved into an adult model of planning and support.
Young children are getting plans for 2 years, which is not appropriate for such young children. It does not reflect ages and stages.
There needs to be better information and communication to parents about how to get the most out of their child’s plan. Information also needs to be provided in languages other than English.

Transition from childhood to adulthood

The NDIS does not understand the unique needs of young people, particularly in terms of the developmental stages of transitioning to adulthood, eg. autonomy and identity. There isn’t recognition of the space between being a child and being an adult.
Between the ages of 17 and 25 young people have rights and capacity but are not well supported by NDIS.
There were reports that young people with disability are being discouraged from working until they leave school.
Young people find it difficult to take part in their community due to the limited funding of supports and lack of opportunities. This is especially true for culturally and linguistically diverse (CALD) peoples and those in rural areas.
Members highlighted that young people don’t always want support from their parents. For example, for personal needs like showering.
Young people need appropriate supports to develop independence from their parents, so they can develop skills in finances, etc. They need education in these areas before they leave school.
There can be few housing options for young people, especially for those with complex needs.
There are reports of funding being cut soon after the young person with disability leaves school. This creates added challenges as they navigate education, community involvement and work options.
When young people have limited agency, they can become frustrated and rebel against plan supports. If they don’t use their plan this may mean future plans are reduced.

Early intervention

There are reports from plan managers and support co-ordinators that in the first year a child has a plan, up to two thirds of the plan is being spent on functional assessments from private providers. This highlights the deficit focus of the scheme and may contribute to increased wait times for allied health therapy.

Early intervention is often led by medical professionals. Parents are not always aware of their important role or might not be empowered to speak up for their child.
Wait times for occupational therapy in the Northern Territory can be up to a year. Therapy is being delivered less effectively via videoconference, often by an interstate provider.

The connection between NDIS and other services

The NDIS and Department of Education do not work together well.
NDIS supports should be delivered in schools. Delivering NDIS services in the child’s natural environment is considered best practice for development and inclusion.
There is a high number of children in Out of Home Care and the justice system who have diagnosed and undiagnosed disability. These at-risk children need to get support early. This would likely mean the NDIA working closely with other government agencies and services.
Early Childhood education services have an important role in enabling children to access NDIS and be school ready. These services provide a supportive and nurturing environment for children to receive NDIS services.
There is a need for national, state and territory governments, and non-government agencies, to collaborate better.
Children and adults with complex care needs are better supported by wrap-around care, with multiple services working together to provide support.

Parents and carers

The design of programs is not appropriate for autistic people, and there is a reliance on parents to give the supports needed for them to participate.
Peer supports and training for parent leaders have positive outcomes. There needs to be greater connection to peer supports and inclusion pathways, in addition to therapeutic supports.
Relationship stress and family stress impact parents’ mental health. During COVID the number of mental health visits in a mental health plan were doubled, this was a positive thing. Reducing these by half now is not appropriate.

3. Reference Group Workplan

3.1 Discussion of priorities for the workplan for this period

Ms van Poppel explained that there was an initial discussion of the workplan in the last Reference Group meeting. Now the new members are confirmed, the reference group needs to develop a workplan for its full-term 1 July 2023 to 31 December 2024.

Ms van Poppel asked the following questions about the summary document of issues raised in member reports in the last year:

Are there things that stand out to you from the priorities in the main document?
Are there things missing in that?

What are the things to consider in the environment when creating the workplan?

The following priority areas were identified:

Transitions

Members were concerned the NDIS is not well designed to support children as they grow through life stages.
They highlighted ‘the gap’ in the establishment of the children’s taskforce. Members are concerned about how the needs of participants aged 15-18 years will be addressed.
There was also discussion of the role of community and family in supporting children with disability through life stages. This was largely in relation to building their independence and advocating for them while they learn to advocate for themselves.
There needs to be more work done on the transition from LAC to EC Partner planning.

Individual agency – for child, young person, parents and carers

Young people should have greater agency as NDIS participants and should be allowed choice and control.
Having a voice earlier and building young peoples’ capacity is important in facilitating the transition from adolescence to adulthood.
Young people should have more say in how the NDIS is run and there is support for the notion of a Youth Advisory Council. Policies and solutions affecting children and young people should be co-designed with them.
The need to consider practically in how to hear the voice of young people. For example, through appropriate channels of technology.
Members highlighted the importance of parent agency. The parent view has a vital role in regard to how they engage. There is a need to move away from the reliant/medical model to an empowered model.

Where the NDIS meets other government and community services

New members were introduced to the concept of ‘mainstream interfaces’. For example, how the NDIS interacts with other systems like justice, education, or community services. Members acknowledged that the large cohort of children joining the NDIS may be partially caused by other services and systems not meeting their needs. They also discussed how important it is to consider these other services and systems.
Members noted the need for regular contribution to the work NDIA is undertaking on Reform for Outcomes initiatives, and ensuring there is consideration of the voice of young people.

It was noted that the IAC is limited in how it can affect organisations outside the NDIA. For instance, they cannot track how their advice is or is not being implemented. Members questioned:

What is our appetite for providing advice to government organisations outside the NDIA?
How welcome is our advice in other aspects of government?

How do we know if our advice is being properly implemented when the legislation does not require other government departments to implement our advice or even engage with it?

Inclusion

Members highlighted that supports should be delivered in the natural environment of the child. This assists with their development and also promotes the inclusion of children with disability and their family. They are concerned about reports that children are receiving NDIS supports in schools away from their peers and/or the classroom which further isolates them.

Ms van Poppel confirmed that the work plan would be finalised in an out of session meeting.

4. Update on the Early Years Strategy

4.1 Update on the Early Years Strategy and next steps

Ms Alexis Diamond gave the Reference Group an update on the work the Department of Social Services has been doing on the Early Years Strategy. They have finished consultation and are now working to translate this into a strategy.

Members noted:

There were impressed with the engagement work they have done so far.
They would like to continue to be consulted and updated as this project progresses.
That the content of the Strategy should be sense checked by the disability community to ensure the experiences and views of children have been translated accurately.

5. NDIS Review Panel

5.1 Discussion with NDIS Review Panel

Professor Bruce Bonyhady AM, Co-Chair of the NDIS Review Panel provided an update. Prof Bonyhady noted the five key challenges outlined in the ‘What We Heard ‘report:

The ‘one and all view’ of the NDIS is not sustainable long term or fair. This issue needs to be resolved differently for adults and for children. Other community and government services are no longer there to meet the varied needs of people experiencing disability.
The concept of ‘reasonable and necessary’ is not being applied consistently. This lack of clarity is causing high costs and is not fair.
There is a higher-than-expected number of children entering the NDIS. Supports offered are not always best practice or family centred. Disability needs to be better integrated into the education system, so that young people are having an inclusive, rather than isolated, education experience.
It is recognised that NDIS markets are not always working. There are thin markets, a depleted workforce, and a lack of effective regulation.
The NDIS must be sustainable.

The following was discussed by Members and Prof Bonyhady:

‘Reasonable and necessary’ is often used by a stranger to explain why supports are being removed.
The inconsistency across participants plans is not necessarily bad. People with disability can have different needs even when compared to someone with the same or similar disability.
Some people may be denied supports if they are expected to have already received them.
The unexpected number of children entering the scheme may not indicate that more children have disability. It may just mean more children are getting the help they need.
Eligibility should be based on needs, but many people are seeking a diagnosis to prove their needs.
Participants and families need to understand that the purpose of the NDIS is creating better outcomes, not just delivering services. Young people should have a say in what outcomes they want from NDIS supports.
Other government and community services need to connect better with the NDIS so that no young person or child goes without the supports they need.
The NDIS Review must be clear on what it needs from state and territory governments. This includes what must be delivered and who will fund it.
The implementation of the NDIS Review’s recommendations should be monitored externally.
There needs to be a transition period for any changes made to the NDIS.
Cost increases are largely due to provider blowout, however there is negative commentary in the broader community that participants and their families are to blame.

6. Meeting close

6.1 Other Business

There will be an out of session meeting to create and confirm the Childrens, Young People and Families Reference Group’s Work Plan.

Ms van Poppel thanked new members for their honesty and new perspectives. Ms van Poppel also thanked existing members for giving new members space to contribute and building on their voices.

6.2 Next Meeting

The next meeting is scheduled for 12 October 2023, and will be held online.

The meeting finished at 4:36 pm