The Need for Advocacy
Over the years I have written many submissions for different enquiries related to disability and disability support, mental health support, or education. I wish it wasn’t necessary but, sadly, siblings are still so overlooked in policy in this country. Despite being at risk themselves and potentially contributing to a ‘good life’ for people with disability over a lifetime, they are not mentioned in most policy documents. The term ‘families’ is often included but it is not necessary to drill down too far to see that this refers mainly to parents and the child/adult with disability and rarely makes specific references to siblings.
By contrast, in the UK, the Children Act provides a more comprehensive framework for the support offered to children ‘in need’, including those with disabilities. It emphasises that the child is part of their family. The guidance issued under the Children Act (Great Britain Department of Health, 1991) states that ‘the needs of brothers and sisters should not be overlooked, and they should be provided for as part of a package of services for the child with a disability’. Whilst this policy doesn’t guarantee that siblings will be supported, it might increase the chances of that happening. No such imperative exists here.
Siblings Australia continues to advocate for siblings and is the only organisation of its type in Australia to focus on the resilience building and support of siblings. We have found that, traditionally, siblings are not good self-advocates, having grown up with the needs of another taking priority. They can feel guilty about raising their own concerns when their brother or sister may have more significant needs. Parents are often stretched both emotionally and physically and, though many worry about their sibling children, if they do reach out to find support, there are not many available. Professionals are often very focused on the child/adult with disability and may lack understanding of the importance of siblings.
What We’re Advocating For
Below are some key points we continue to make in our advocacy, but especially in relation to the NDIS:
*We note that in the NDIA Act, one of the aims listed under the ‘purpose of the NDIS’ is to: facilitate the development of a nationally consistent approach that provides support to eligible Australians, ensuring that people with disability and their families get the support they need when they need it.
*There was a strong focus on Early Childhood Intervention (ECI) for our submission to this Review as this is a key stage in a sibling’s development, where we can see better outcomes for siblings (and in turn the whole family) with the appropriate support in place. For further reading on ECI, see the Siblings Australia submission to the NDIS Review of its ECEI Approach, which, like the Tune Review, emphasised the need to build capacity in families and mentioned siblings particularly.
*The government has emphasised that, ‘The NDIA has an important role to assist families and carers of people with disability to identify, and in turn engage with or strengthen the natural relationships that exist within their home and community.’ However, three main problems that Siblings Australia has identified include: the lack of recognition of the sibling relationship; the lack of understanding about the nature of the sibling relationship and its importance; and no clear pathways for support for siblings and the relationship.
*In terms of the NDIS Quality and Safeguards Framework Review, we supported the premise that ‘participants with strong natural safeguards are better supported to be safe than those with poor natural safeguards’. This is particularly important for people with intellectual disability or communication difficulties, which means they might experience isolation but, also, they may not recognise or be able to articulate when they feel unsafe.
*Whilst the NDIS emphasises the importance of strengthening ‘natural supports’, there is little discussion about HOW that might happen. There is a focus on strengthening community connections outside the family for children with disability, but little on family relationships. Yet family is our first social network, our first source of play, learning and feeling of connection. Siblings, especially, have a huge impact on each other’s development. And that impact lasts a lifetime.
How You Might Advocate for Siblings
Whether you are a professional, who is likely to be stretched, or a parent who needs to spend so much time advocating for your child with disability, we hope you will also find time to advocate for siblings. It will lead to the best outcomes for the whole family. Here are some examples:
- Explore the services and resources of Siblings Australia to find out more about the concerns and needs of siblings to strengthen your advocacy.
- Emphasise the development of goals in a child’s participant plan that relate to natural supports, for example:
- Under Capacity Building this might include something like ‘support my sibling to build capacity to better understand my disability and interact with me more effectively’
- Under Core this might include ‘building a strong relationship with my family’
- Refer to the previous blog The Power of Inclusion which explores the value of including siblings especially in the area of behaviour support.
- If you are a provider, consider ways you can engage and show interest in siblings as part of your work. The SibWise online course could help you with this. Also, advocate for siblings in your work with others. Siblings Australia is currently developing SibAware, designed for providers to demonstrate their holistic approach to family support and display a commitment to supporting siblings in their service delivery prior to accreditation.
- If you are a parent:
- Ask a therapist or support co-ordinator to write a report which recommends working on goals related to sibling support and strengthening the sibling relationship.
- Ask allied health professionals with whom you already have contact to include siblings in ways that both support them but also the sibling relationship. If you meet resistance, remind whoever is resisting that siblings, if supported, will more likely contribute to the wellbeing, social inclusion and safety of the person with disability across their lifetime. The sibling relationship is often the longest of any so it’s important to ensure this relationship is beneficial and healthy for all.