There are an estimated 4 million people with disability in Australia today โ and this means there are millions of brothers and sisters around the nation with intimate experience of a rarely-discussed role: being a sibling of a person with disability.
We spoke with Siblings Australia CEO, Dr Shannon Schedlich, to learn more about sibling relationships in the context of disability, and the supports available to brothers, sisters, and families across the country.
For better or for worse, siblings are likely to be each otherโs longest-lasting relationships, and safeguarding those connections so everyone feels supported and the family dynamic thrives is vital.
Thatโs why Siblings Australia exists โ to support, encourage and advocate for the children and adults who are often profoundly involved in the lives of their brothers and sisters.
Dr Schedlich understands this role at work and at home. Her own children became siblings of a child with disability after Dr Schedlich remarried, and their personal experience was one of the driving forces behind her decision to helm the 25-year-old organisation.
โHaving seen the challenges my stepson faced with his sister, and then also becoming aware of the dynamics that exist within our family and other families, itโs very much how do you do the job to make sure everyoneโs needs are met?โ says Dr Schedlich.
โThis is at the fore of our lives and itโs the core of my work too.โ
Siblings Australia has two distinct arms โ one to ensure brothers and sisters of people with disability are acknowledged in policy and practice related to disability inclusion, and the other to make direct support available for siblings themselves.
Dr Schedlich says siblings can feel invisible โ not only to politicians and policy makers, but at times in their own families as well.
โWe know, in certain circumstances, siblings have some complex needs,โ she says. โSiblings are more likely to have their own potentially subclinical levels of disability, more likely to have suicidal ideation, more likely to have anxiety and depression than their peers who donโt have siblings with disabilityโฆ but in a whole heap of policy areas there is just silence around them and their needs.โ
โWe also know that reflects in families โ and I say this acknowledging not all families experience this, but a lot of adult siblings report being โthe glass childโ, the child whose needs are seen through.โ
Dr Schedlich says itโs also damaging when a sibling with disability is seen as โotherโ by structural systems.
โI think one of the unintended consequences of the NDIS is that it has created the person with disability as this little island within their family,โ says Dr Schedlich. โThey are the most important thing, and their needs are centralised, but itโs their needs outside of their foundations being supported.โ
โBut how do you do things out in the community or school or workplace without looking at the core piece, which is family support?
โYou often see within the NDIS, that either the Agency itself or people providing support will talk about family support and what they are talking about is parent supports. They are ignoring the needs of the other children by saying 'kids are resilient, they are fine, they donโt know any different', but this attitude can be really damaging.โ
But it doesnโt have to be that way.
Dr Schedlich says itโs the vision for truly recognising siblings as their own unique and important individuals that benefits the whole family and the wider community โ and that includes people with disability.
โItโs very important to recognise we are talking about kids and all kids have needs and things that need to be fulfilled, regardless of what else is happening in the family,โ says Dr Schedlich.
โFor the overall family dynamics, when siblings are supported, the stress of the family decreases โ and if we are looking across the lifespan, where Siblings Australia works, we know when siblings are seen and supported, they go on to have really fulfilling relationships with their brother or sister with disability.
โThere are siblings who choose to go no-contact later in life because they feel they have been so overlooked they need to prioritise their own lives. But we also know the positive impacts that siblings have. Weโve written a white paper about this, looking at the ways that siblings are supporting the outcomes of the Australia Disability Strategy.
โSibling relationships are so vital for people with disability because itโs often one of the few horizontal relationships people with disability have, where they are genuinely recognised as equals with their own identity.
โSiblings often see their brother or sister with disability from a strength-based perspective โ what they can do โ and as a sibling, not a person with disability.
โThere are incredible flow-on effects for people with disability when siblings are supported. If you have a really strong family unit there's so much benefit to your wellbeing.โ
In fact, Dr Schedlich says positive and strong sibling relationships become even more important as people grow into adults.
โLater in life, from a safety perspective, having engaged siblings once Mum and Dad age out means you have that set of eyes on you, so youโre safer. Thatโs the reality. Itโs a protective relationship.โ
Itโs often understood that as parents age and siblings develop into adults, they will take on more responsibility for their brother or sister with disability.
Sometimes this happens gradually and can be planned for. At other times, thereโs a crisis and siblings have to step up, fast.
Thatโs why Siblings Australia has developed SibPlan โ a free planning and support resource to help siblings to understand, support and plan for their brother or sisterโs needs, now and in the future.
โWhether itโs doing future planning stuff or theyโre saying, โI donโt know where to startโ, SibPlan lays it out,โ says Dr Schedlich. โItโs centralised through life goals and helps navigate through.โ
โI always say to adult siblings, itโs not the disability that is overwhelming, itโs the systems that sit around the disability that can be overwhelming.โ
Thereโs also SibChat, a moderated, online Facebook group that connects siblings of people with disability to a community where they can draw on the experiences and support of other siblings.
Itโs often said that parenting is about understanding which balls can be dropped because theyโre durable plastic, and which balls must be caught because theyโre fragile glass.
Siblings Australia certainly understands this.
Dr Schedlich says parents of children with disability have a lot to juggle, but she believes itโs vital siblings receive care and attention as well.
Here are six quick tips on how to manage the juggle:
As disability can have a genetic component, thereโs a chance other siblings may also share the same disability, albeit with lower support needs.
โIf you have one child with significant support needs, it can be easy to overlook the child who seems to be travelling okay,โ says Dr Schedlich.
โCheck whether other siblings have potential diagnoses that havenโt been addressed.โ
A 2018 study by Siblings Australia revealed 66 per cent of adult siblings reported having anxiety, 54 per cent reported depression, and 84 per cent revealed family stress.
Dr Schedlich says itโs important youโre present when it really matters to your children.
If you have a soccer-obsessed child, make sure you can make it to the sidelines as often as possible, or for an academically-focused child, be at assembly when theyโre receiving a Principalโs Award.
You can take time with their interests, setting aside 1:1 time to talk Pokemon, have a go at gaming, or even enjoy a walk together.
โKids are really understanding, they get there is a whole raft of things going on, but they also need to know the things that matter to them matter to their parents,โ says Dr Schedlich.
For the times when you canโt be there, if aunties, uncles, or friends-who-are-chosen-family can be there for siblings, it really helps.
โItโs equally important for the sibling-child to have their village too,โ says Dr Schedlich.
This is important at school as well! Ensure siblings arenโt being pulled out of their own classes to provide support to their brother or sister with disability and do your best to preserve the relationships between siblings.
Family doctors and school counsellors can be good resources for your children, and Carer Gateway also offers phone counselling that may be suitable.
Siblings Australia can support siblings with counselling too โ either individually or as part of a family.
Contact SibSupport for more information.
3 September 2024