Advocacy

Since 1999, Siblings Australia has lobbied hard at both National and State levels for siblings to be included in policy and programs. The organisation has contributed to inquiries, had discussions with Ministers, advisors, and public servants from different departments, sent many letters and emails, and prepared a variety of submissions.

2024 – Positioning Siblings Australia in a Reformed NDIS
This discussion paper addresses the importance of siblings in any government response to the NDIS Review Report. The inclusion of siblings in the NDIS as a foundation of support can significantly benefit the disability community. By recognising and addressing the unique needs and challenges siblings face, we can create a more inclusive and supportive environment for all individuals with disabilities and their families.

2023 – SA Youth Action Plan
Siblings Australia’s submission to South Australia’s Youth Action Plan 2023-26, aims to ensure the South Australian Government better meets the needs of young people, by delivering fairer and more equitable access to opportunities, resources, and supports.” Noting that one of the vulnerable groups cited in the consultation paper includes those with a disability, but there is no mention of their siblings outside of the carer banner. The Strategy is hoped to be a starting point for further input from Siblings Australia and a wider and more nuanced understanding of the role of siblings.

2023 – Australia’s National Autism Strategy
Sibling Australia’s submission to Australia’s National Autism Strategy is hoped to be a starting point for wider and more nuanced understanding of the role of siblings. Too often, when “family” supports are discussed, it is almost entirely focused on parent supports. We are buoyed by the emphasis in the discussion paper to the Strategy being developed along a person and family-centered approach. Not only will this benefit the sibling but a stronger relationship (given the sibling relationship will likely be the longest of any) will have huge impacts on the well-being, social inclusion and possible safety of the autistic person over their lifetime.

2023 – WA Youth Action Plan
Siblings Australia’s submission to Western Australia’s Youth Action Plan 2023-26, aims to ensure the Western Australian Government better meets the needs of young people, by delivering fairer and more equitable access to opportunities, resources, and supports.” Noting that the Consultation Paper states “Many young people are anxious about their future. They are juggling numerous responsibilities while seeking out a fulfilling career and trying to prioritise their mental health and wellbeing.” However, one of the vulnerable groups that is often overlooked in both policy and practice is siblings.

2023 – SA Inclusion Plan
Regrettably, there has been scant mention of ‘family’ when the inclusion of people with disability (PWD) has been discussed in previous Inclusion Plans or in the Disability Inclusion Act (2018), including the first State Disability Inclusion Plan 2019–2023 – Inclusive SA and those developed in 2019, 2020. This is despite families playing such a crucial role in the inclusion of PWD. This submission by Siblings Australia outlines how family and siblings are so important to multiple outcome areas defined within the inclusion plan.

2023 – NDIS Quality and Safeguarding Framework Review Submission
The focus of this submission is on the key elements of the developmental measures that help people with disability access the supports they need to live a ‘good life’ and be able to ensure their wellbeing, social inclusion and safety. There continues to be a lack of understanding of the importance of family, and especially siblings, in assisting in these processes, and the need for families to build their own capacity to contribute.

2023 – NDIS Review Submission
In this submission, we identify three main problems that need to be considered as part of the NDIS review: the lack of recognition of the sibling relationship; the lack of understanding about its importance; and no clear pathways for support.

2023 – Early Years Strategy Discussion Paper
Our paper focuses on the importance of including siblings as a vulnerable group in the early years, in addition to those children with a disability or developmental delay. In all situations where there is any kind of disability or illness, the whole family is impacted. 

2021 – Best Practice Intervention for Children on the Autism Spectrum
Our responses to questions with regard to accessing support for children on the autism spectrum, with specific reference to the need for whole of family support.

2021 – Early Childhood Early Intervention (ECEI) Reset submission
Our response focused on the need for the NDIA to provide an early intervention approach to supporting all family members, including siblings, from the time of diagnosis, so that they are more likely to contribute to a good life to a child with disability.

2020 – National Disability Strategy Position Paper
Our paper focused on the need for the NDIS to acknowledge and support the sibling relationship, a relationship that is often the longest within a family.

2018 – Submission to Stronger Outcomes for Families Consultation
Our response to the Department of Social Services background paper ‘Stronger Outcomes for Families’ focused on how disability can affect the whole family, with research showing the likelihood of mental health impacts for family members, including siblings.

2017 – Draft Service Delivery Model for future Carer Support System
The draft model gave no reference to siblings as a unique group who need particular recognition. Our response focused on the model’s over-emphasis on supporting the caring role as opposed to siblings having an identity irrespective of their caring role.

2017 – NDIS ECEI Approach
Our response focused on the need for the NDIS to consider the needs and provide service provision to each family member, including siblings, in its ECEI approach.

2016 – National Disability Advocacy Program (NDAP) Submission
Our response included recommendations for the NDAP to support a peak advocacy body for siblings and greater representation of family members, including siblings in systemic advocacy.

2016 – Integrated Carer Support Submission
Our submission called on the integrated care support service to develop policy, programs, resources and awareness that distinguish siblings from parent/carers and young carers.

2016 – ILC commissioning framework submission
Our submission challenges the over emphasis of the caring role in the ILC Policy Framework and calls on the framework to support siblings through sibling focused agencies.

2015 – Review of the National Disability Framework
Our response focused on the important role siblings play as advocates, irrespective of their caring role, and for siblings to be recognised in the new advocacy framework.

2015 – Submission to NDIS Quality and Safeguards consultation paper
Our submission explored the benefit that a strong sibling relationship has on the safety and independence of people with disability.

2015 – The National Framework for Protecting Australia’s children submission
Siblings Australia responded to the discussion paper: Developing the Third Action Plan. The focus of our paper was despite government’s acknowledging children at disability as being ‘at risk’, they do not recognise their siblings as ‘at risk’.

2015 – ILC Submission Sibs Aus
Our response was to the proposed policy parameters for Information, Linkages and Capacity Building Program under the NDIS. Our position was that whilst the policy identified the needs of people with disability, their families and carers, it did not recognise the specific needs of siblings.

2014 – Child and Youth Health Strategic Framework
This paper focused on the priority area ‘Improving the identification of vulnerable populations’. Our recommendations included siblings being recognised as a vulnerable population group and national policy supporting this recognition.

2014 – ECI discussion paper submission
Our contribution to this discussion paper focused on the need for Early Childhood Intervention (ECI) best practice approaches to include the recognition of siblings as having needs and being able to contribute to the life of their brother and sister with disability.

2014 – NDIS advisory council submission
This paper was a response to an NDIS Roundtable discussion held in Adelaide. Our position included the need for clear guidelines to be developed regarding family support within a participant’s NDIS plan.

2014 – Children’s Commissioner re: self-harm
Our response focused on the absence of research to clearly understand the data regarding the self-harm of siblings. Our position was that there is considerable anecdotal evidence proving siblings are an ‘at risk’ population and are more likely than the general population  o self-harm.

2013 – Family Support Program Future Directions Discussion Paper
The focus of the paper was on the need for sibling specific support to be considered within the future directions of the Family Support Program.

2012 – Every Chance for Every Child Discussion Paper
Our contribution to the discussion paper focused on the ‘Every Chance for Every Child’ legislation to recognise young siblings as a vulnerable alongside other vulnerable groups.

2011 – SA Autism consultation
This paper contributed to the South Australian service system framework for ASD consultation. Our position was the need for necessary early intervention supports for siblings who are likely to be in the life of a person with ASD longer than anyone.

Below are some of the advocacy activities by other agencies regarding siblings. 

Anglicare’s Social Policy and Research Unit released a report in 2013, “Caring for a child with an intellectual disability and challenging behaviours”, which also includes an exploration of the impacts on siblings and their needs. It recommends that ‘separate assessment of carer and siblings needs should be undertaken’.

“Addressing the needs of siblings of children with chronic conditions”, developed by the RANZCP and Siblings Australia, covers a range of issues for siblings and makes recommendations for their support. It was endorsed by many organisations around Australia.

Families Australia followed up from the RANZCP work by running focus sessions with adult siblings. The document “Towards improved recognition and support for siblings of those with a chronic condition” explores the issues and sets out some directions for the future.

Improving the mental health of infants, children and adolescents, Position Paper of the Australian Infant, Child, Adolescent and Family Mental Health Association” , published in 2011. Siblings are referred to on page 20.

A joint submission to the National Disability Strategy by all the State Commissioners for Children and Young People, and Child Guardians, 2008. Siblings are included throughout.

Skip to content