Inquiry into the Thriving Kids initiative
Down Syndrome Australia Consortium
3 October 2025
About the Down Syndrome Australia Consortium
Down Syndrome Australia (DSA) was established in 2011 as the national peak body for people with Down syndrome and their families in Australia. Our vision is that people living with Down syndrome are valued and have full access to social and economic inclusion to reach their full potential. Down Syndrome Australia is one of twelve National Disability Representative Organisations (DRO) and leads a consortium of organisations to represent people with intellectual disability and their families and supporters, with a focus on intellectual disability caused by chromosomal variations.
People with these chromosomal variations experience intellectual disability varying from mild to severe, often accompanied by degrees of physical disabilities, higher rate of co-occurring neurodevelopmental conditions, communication disabilities and health issues.
It is important that the views of people with chromosomal variations and their families and supporters are represented in the development of policies and services that affect their lives. Families and supporters play a significant role in advocacy, skill development and providing supports and care. They are a critical part of the lives of a person with intellectual disability and form an important part of our advocacy work.
All our work is within the human rights model of disability and informed by the Convention on the Rights of Persons with Disabilities (UNCRPD).
You can read more about our consortium, including our consortium members here.
For more information contact:
Darryl Steff
Chief Executive Officer , Down Syndrome Australia
Email: redacted
Down Syndrome Australia
805/220 Collins Street, Melbourne Naarm VIC 3000
1300 344 954 @ info@downsyndrome.org.au
Thriving Kids
The DSA Consortium has endorsed Children and Young People with Disability Australia’s (CYDA) submission on the Thriving Kids program and supports their recommendations.
We developed the following short submission to outline some more specific concerns that will impact our community of people with intellectual disability and their families, with a focus on intellectual disability caused by chromosomal variations.
Clear pathway onto NDIS following diagnosis
Though some children with chromosomal variation can be diagnosed prenatally or at birth, other children will not be diagnosed until preschool or school age and developmental delay may present before any diagnosis is confirmed.
In these cases, the child may first be a part of the Thriving Kids program, however the program may not meet their complex support needs as they grow.
There must be a clear pathway to full NDIS support for those with higher support needs and permanent disability. The department/s and the NDIA must jointly agree on the participant pathway from Thriving Kids to the NDIS. In particular, a child and their family must be supported to understand when their child has met the eligibility threshold for NDIS and be provided support to navigate the transition.
The need for specialised supports
We are concerned that to date, Thriving Kids does not appear to include some specialised supports that many children with disability or developmental delay require. These include behaviour supports, respite and carer supports and health related disability supports. Thriving Kids must include these supports in order to appropriately support all children on the program.
Impact on the NDIS Early Intervention Pathway
The NDIS Early Intervention Pathway needs to be re-designed in conjunction with the design of the Thriving Kids program. As outlined above, there will be people with chromosomal variations who will be identified as having a lifelong and permanent disability or requiring higher support needs than the Thriving Kids program may be able to provide. The Early Intervention pathway needs to be re-designed to ensure that it is there to support these children and that they are not left with inadequate supports or no access to early intervention, particularly where the purpose of early intervention is to
reduce the child’s need for future supports and strengthen the sustainability of their informal supports.
Preserving inclusive mainstream supports
All children with disability and their families, whether they be NDIS participants or not, need a range of mainstream and specialist supports to have their needs met.
Whilst the delivery method for Thriving Kids is not yet determined, it may be focused on community group or mainstream settings, such as local playgroups. These settings should remain inclusive of all children who may benefit, and therefore be accessible to children even if they have an NDIS plan. This benefit also applies to their parents who are supported through the peer connection.
Information, advice and referral
Another vital inclusive support that must be maintained is information, advice and referral for children with disability and their families.
Information, advice and referral supports are being threatened because Thriving Kids is viewed as a replacement for these supports, despite the fact that the program is not yet operational and it is not clear what services will be included. The recent ILC Reform grant round for information, advice and referral focused on the 9-65 year old age group. However, families will continue to need these supports for their children to navigate between systems, to understand their changing needs and supports, and to understand their child’s needs pre-diagnosis. These support needs will continue to exist outside of the Thriving Kids initiative.
Workforce
It is vital that providers of Thriving Kids services employ a skilled workforce with expertise in disability and early childhood. Though this program is for children with the lowest need, in reality this workforce will be supporting children with a wide range of needs because areas of developmental delay are likely to emerge over time, and diagnosis may take even longer.