Siblings Australia activity

As usual, it’s been a busy time here at Siblings Australia - with a variety of activities, programs and submissions. One highlight was being asked to be a Practice Associate within the Centre of Practice Innovation at Scottish Autism, after presenting there in August, and I’m so looking forward to being involved. We are also registered now as a provider within SA for the NDIS. This means that I am able to provide consultations with parents on support for siblings of their child with disability. You can find more information on the parent page of the website. I am currently waiting on registration in other States – these sessions would be via phone or skype. It is heartening that the NDIA is recognising the importance of siblings. They are most interested in siblings from the point of view of ‘succession planning’ but they are coming to see the value of supporting siblings from a young age. I hope to expand this to working with young siblings and also with adult siblings on the roles they might play in planning for a good life for their brother or sister with disability.

I have provided submissions and been involved in a number of consultations including the draft National Child and Youth Strategic Framework for Health, an Early Childhood Intervention Best Practice Discussion Paper, and an NDIS Independent Advisory Council Roundtable. In all of these situations I keep pushing for siblings to be recognised appropriately.

I was fortunate to gain support to attend the Family Relationships Services of Australia conference in Adelaide, which allowed me to meet up with some people I had been trying to see, hear some thought-provoking presentations and renew my faith in what we are doing. I even met the Minister for Social Services, Kevin Andrews, albeit very briefly, but hopefully he will remember ‘siblings’. I did feel somewhat of an ‘outsider’ as the people attending were all funded and ‘doing the job’; whilst I spent a lot of time ‘wishful thinking’. Some of my thoughts from the conference include, in no particular order:

· The importance of data. I spoke briefly and will follow up with the Director of the Australian Institute of Family Studies about how we might work together to ensure relevant data re siblings can be collected. It was a report from the AIFS in 2008 that highlighted the increase in depression in siblings. The questions for me are: How would you contact siblings? What roles are they playing? Are they happy with those roles? If they are not involved, why not?

· I spoke to someone who has just received a Discovery Grant to explore the inclusion of children in research where discussion is ‘sensitive’, certainly the case with siblings. It is often difficult for siblings to have a ‘voice’ as they may feel disloyal or guilty talking about the difficulties they face in their family or the feelings they experience. And who can they turn to for help? We cannot wait until a child finds the courage to reach out for help. I hope we can have some input into this work.

· I organised to meet with the National Children’s Commissioner, Megan Mitchell, as I knew she was presenting. We had talked by phone previously but it was good to meet in person and reinforce the gap that exists in sibling policy/programs. I also raised again the issues for siblings that relate to the rights of children. We cannot focus solely on the rights of people with disability without also considering the rights of siblings. And we need an Early Intervention and Prevention approach with siblings as well as the child with disability.

· There was an interesting presentation about neglect and whilst it was focussing on the more difficult end of the neglect spectrum it highlighted the importance of the early years. And whilst many siblings may not be neglected in the traditional sense, many grow up feeling the lack of attention and subsequently develop low self worth. It is one thing for a child to be neglected; but what of the situation for siblings where another child in the family is very UN-neglected? For a young child it can be very confusing. Also we know that stress in early childhood can have long term impacts on health and wellbeing. It is very difficult to increase awareness of the stress, even trauma, experienced by some siblings. Some of that can include the daily stresses within a family that includes a child with disability but some can come from more acute situations such as hospital stays, ongoing seizures, or aggressive outbursts. How do we know the impact of such on young children and their development?

· So many different groups of children were highlighted as being vulnerable throughout the conference. But siblings didn’t rate a mention; the paper I had submitted was not accepted as part of the program. I have written before about the term ‘glass children’ being used for siblings; they continue to be overlooked or ‘seen through’. Often that is because siblings present as the ‘good child’, the child who avoids making a fuss or adding to the stress of parents. But what will it take for the federal government to recognise these children as important in their own right but also as an important part of the lifelong social and emotional wellbeing of their brother or sister with disability? When will the ‘tipping point’ be? When will siblings be seen and heard? There is much awareness about the need to support a child with disability and their parents, and many millions of dollars are put into this work. But no funding is provided for sibling support at a national level. Do people think that little siblings just absorb the stress and move on with no effects? Or are they just not considered at all?

Regarding the future, we are waiting on the outcomes of the Department of Social Services funding round. Until that is clear we cannot really do much advocacy for siblings, although I still have numerous discussions with government advisers, and department staff. There were 5,500 applications for grants totalling $3.8 billion but there is only $880 million available so our chances are not high. We also continue to advocate for siblings within the Health area but again things are in limbo right now as the National Mental Health Commission carries out a review of mental health services. Once that is available we can think again about how siblings might fit into this agenda.

In the meantime there have been various media articles/interviews/reviews in recent times, either about our work or the revised edition of the book, Siblings: Brothers and Sisters of Children with Disability

And finally, I don’t feel particularly comfortable asking for support – in fact over the last 15 years have only asked for such once or twice – but as many of you know we have no funding. I am still answering multiple queries from all over Australia, developing resources, and fighting for the recognition of siblings. We also provide opportunities for teen and adult siblings to connect online. If you feel that this work is worthwhile please consider a tax deductible donation. For a donation link or for other ways to support this work visit the Support Us page of the website. Thank you

NOVEMBER 30TH, 2014 @ 11:47:42 CST

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