Siblings Australia has just set up a new Facebook group (in addition to our main page), called Siblings Australia Connect, in order to encourage more discussion regarding sibling support options now and into the future. For those not on FB there is also an email list. You can join either or both at the end of this document.
Since 1999 Siblings Australia has been raising awareness of siblings concerns, developing resources and services, providing training and contributing to research. It has developed a national and international reputation for this work. However, in spite of this, the organisation has not been able to access funding for its work during the last 8 years. One of the reasons, if not the main reason, for this is that siblings are nowhere in national policy and this is a huge gap. It means siblings continue to be overlooked.
The organisation has a number of concerns about the state of the sibling support sector, including the scarcity of programs, the lack of ‘best practice’ guidelines, collaboration and co-ordination. Its 2009 Scoping Project showed a sector that was lacking in co-ordination, skills/resources and consistency in practice. Few programs were evaluated.
Since then Siblings Australia has provided a number of submissions, met with Ministers and Advisors, sent emails, had phone calls, set up petitions. You can read some of our submissions to government on the Siblings Australia website. You can also read about other advocacy by other agencies. We have also carried out our own and contributed to other research.
Millions of dollars are spent on parent carer support via a number of national agencies. Siblings experience many of the same stresses but still there is no real recognition of this through policy or programs. And whilst there continues to be no policy there will be little imperative for agencies or individuals to provide sibling programs now or into the future.
We hope that the Siblings Australia Connect Facebook group and email list will enable more discussion about the importance of considering siblings, where their support fits into government agendas, ‘best practice’ approaches and possible future directions for sibling support through a number of avenues – government (health, disability, education, NDIS etc) and/or the community.
As background I have included some discussion on these issues below:
Issues to consider:
1.Why consider siblings?
2.Where sibling support fits into government
3.‘Best practice’ approaches
There are over 200,000 people under 25 with severe or profound disability. So we can assume a similar number of siblings. And there are even more over that age, so we are talking about a significant number of people. Whilst some siblings develop enriching mutual relationships with their brother or sister with disability, many experience challenges. There can be considerable stress in the family and young siblings do not have the emotional and cognitive maturity to manage those stresses. There is much evidence to show that stresses in the early years can have long lasting impacts on a person’s wellbeing. The Australian Institute of Family Studies found that siblings had higher rates of depression and certainly Siblings Australia has much anecdotal evidence to support the higher depression and anxiety in siblings. These mental health problems cost the sibling and their family but they also add to the overall costs for the community. Siblings Australia believes very strongly in preventative approaches eg it is better to have a fence at the top of a cliff than an ambulance at the bottom.
In addition, anyone who is at all interested in children and adults with disability SHOULD consider siblings. Who will likely have the longest relationship with the person with disability, long after parents, teachers, therapists and other support people? Many people with disability, especially those with an intellectual disability, become isolated and yet so little is known about the roles and needs of siblings. What are some of the enhancers and some of the barriers to siblings remaining involved? If siblings are supported earlier does it strengthen the relationship with their brother or sister with disability? These are basic questions that need addressing.
Siblings Australia receives many requests for information from parents and providers, looking for services for siblings. We also hear from adult siblings who are either facing personal challenges or looking for assistance to support their brother or sister with disability.
Across the lifespan the challenges for siblings will change and so approaches also need to change. When siblings are very young it is more about assisting parents to support all of their children. As children age, peer support can be more useful, but not all children respond well to a group situation. They might need one-on-one counselling or support through their school or community. As siblings age and start to think about the future for themselves and their brother or sister with disability, peer support can still be very important but they may also need to access particular information about the disability system and how it might support their brother or sister.
In the past Siblings Australia was funded by the then FAHCSIA (now Department of Social Services) through its Strengthening Families program and also by the Department of Health. Both are relevant as the issue is relevant to families, disability and mental health. However, the education sector is also important when thinking of siblings.
In recent years the different government sectors have resisted taking responsibility for sibling support. At the end of each of the national (they also attracted overseas delegates) conferences we ran in 2004 and 2009, delegates all endorsed a resolution that had as its first recommendation that one government department take responsibility for this group. Several government officials are now suggesting that the NDIS is where sibling support should sit. In many ways this makes sense, but there are also concerns.
With the introduction of the NDIS, there is a new area of government where siblings are very relevant. Certainly the NDIS has as one of its key outcomes the strengthening of ‘informal supports’. Siblings Australia has had considerable contact with the NDIA but sibling support is still very unclear. Siblings Australia is registered in SA, NSW and Tas (Vic and ACT pending) to deliver certain services for families through the NDIS, eg parent individual sessions which come under Parent Training.
If siblings ARE to be a part of the NDIS there needs to be more clarity around what can be included in Participant Plans regarding sibling support. There needs to be much more opportunity for Siblings Australia and others to contribute to the conversation, and for there to be more workforce development and consistent approaches to sibling support.
If siblings ARE NOT to be included in the NDIS adequately, then the NDIA needs to be calling on other parts of government to fund this work. Siblings can no longer be overlooked in national policy and programs. We originally thought that there might be some scope for sector capacity building through the ILC process or the Sector Development Fund but this is not looking promising.
Another issue seems to be that the number of sibling support programs is reducing. Siblings Australia is being asked to do less workshops for parents and providers as agencies are tightening their spending leading up to the full introduction of the NDIS.
Since its beginning Siblings Australia has been concerned about the quality of sibling support programs. As mentioned above, our Scoping Project in 2009 showed an unco-ordinated sector, lacking in skills and resources. Since then we have advocated for a national initiative to develop best practice approaches. Without this how can we be sure that no programs are doing harm?
If sibling support becomes more available there needs to be standards developed within the sector; certainly some criteria that ensures quality programs. Our Siblings Australia peer support program for young sibs, Sibworks,has been evaluated by Adelaide University and there have been subsequent journal articles, but there is more work to be done. You can view a short film about the program here.
In conclusion, the big question is ‘What might the sibling support sector look like in 5 years’ time’? Hopefully, we will see that the sector is a thriving, co-ordinated, collaborative one with communication between providers; best practice guidelines in place; and a robust research base. If siblings are supported across the lifespan there will be benefits for them, their whole family including the person with disability, and for the whole community. The main goal of Siblings Australia is that there will be greater awareness amongst governments, agencies, families and the community and that siblings will be able to readily access appropriate support. If we don’t come together now as a sector and have these discussions then this is very unlikely and things won’t change. I urge you to get involved, not just at a local level but to help move the discussion ahead at a national level. If you are on Facebook you can join the group here. If you are not on Facebook I will post updates from time to time via email – you can join the Siblings Australia Connect email list here.