“It is hard to find the words that do justice to Kirsten’s contribution” said Mr Angus Graham OAM, Down Syndrome Australia Chairman. “From her revitalising work as Down Syndrome Victoria President, to her writing of the Shut Out report, to her vital role in the establishment of Down Syndrome Australia, Kirsten has been a key player in re-establishing the voice of people with Down syndrome and their families as well as her crucial role in helping bring about the National Disability Insurance Scheme (NDIS).”
In 2009 the National Disability and Carer Council thanked and acknowledged Ms Deane as the primary author of the report Shut Out – The Experience of people with Disabilities and their Families in Australia. Together with the the Disability Investment Group report, Shut Out is acknowledged as a key driver of the movement and process that lead to the establishment of the NDIS.
Matthew Wright, CEO of the Australian Federation of Disability Organisations, reinforces the importance of this work; “People with disability would like to acknowledge the most significant contribution of Kirsten Deane. She worked on the most significant reforms of our time, Shut Out, the National Disability And Carers Alliance and the Every Australian Counts Campaign. As well as being a tireless campaigner on the rights of people with disability she is also a delightful person.”
“Kirsten Deane is the most outstanding volunteer that Down Syndrome Victoria has been honoured to congratulate” said Sue O’Riley, Down Syndrome Victoria CEO. “She was an active Board member from 2003 to 2014, serving as President or Vice-President for most of that time.
Kirsten’s contribution stands out from others as she has generously provided thousands of hours of expert work and advice, including the innumerable hours doing the administrative work that community organisations need to survive.
She has contributed to the organisation by writing resources, providing media support and training, writing submissions to government inquiries, drafting and editing grant applications, visiting and supporting new and more experienced parents, public speaking, lectures to students, executive mentoring and participation on numerous reference groups, roundtables and advisory boards.”
Kirsten Deane served on the Victorian Disability Advisory Council for six years, and the (Vic) Ministerial Council on Students with Disability and Additional Needs for five years. In 2008 she was appointed Deputy Chair of the newly formed National Disability and Carer Council (NDCC), serving in this position, and then briefly as Co-Chair, until it was disbanded in 2014.
“Kirsten Deane has contributed enormously to the struggle for people with a disability and families in Australia to gain basic rights to an ordinary life. I am so pleased she has been honoured in this years Australia Day awards”, said Professor Rhonda Galbally AO, NDIA Board member and former NDCC Chair.
In 2009 Kirsten’s considerable expertise and long term volunteer work as a campaigner for disability reform was recogised when she was selected as the Deputy Director of the Every Australian Counts campaign for an NDIS. As the planning for the Scheme progressed in 2012, Kirsten was then appointed to the ‘National Approach to Choice and Control’ NDIS Expert Group – her expertise and hard work acknowledged by her subsequent recent employment by the NDIA.
Bruce Bonyhady, NDIA Chairman, highlights her capability in his congratulations; “Kirsten is a true champion of people with disability and their families. Amongst her many contributions over many years, her achievements as the inaugural Executive Director of the National Disability and Carer Alliance, uniting the disability sector, and then as Deputy Director of the Every Australian Counts Campaign were ground-breaking. Australia is a better place because of her and her recognition in today's Australia Day Honours is truly deserved.”
Kirsten’s passion for change and commitment to community was well established during her years an an academic in the area of disability in the justice system, however it was the birth of her eldest daughter just before Christmas 2000 that prompted the focus on improving the lives of people with intellectual disability. Sophie was born with Down syndrome, and it has been for her and other people with disability that Kirsten has worked so hard for locally and nationally to ensure that peer support, national advocacy and a resourced disability system are all available.
Ara Cresswell, CEO of Carers Australia underlines the lived experience that has underpinned Kirsten’s work; "Carers Australia is delighted to see Kirsten's personal and professional dedication and commitment acknowledged in this way. There is no question that she is an Australian worthy of celebration. We are all richer for her contribution to the disability and carers sectors."
Kirsten and her husband Joel firmly believe in the value of an inclusive life as Sophie’s busy life attests. Sophie has just graduated from the same primary school as her two siblings, is a talented participant at the local gymnasium and is a valued member of the local junior cricket club. Sophie is most well known as the photographer who took a famous photo of the then Prime Minister, Julia Gillard – but the reason for the opportunity has frequently been overlooked. Sophie met the PM at a gathering Gillard attended to thank key contributors to the establishment of the NDIS. Kirsten Deane was one of the group being thanked.
“Kirsten is the ultimate team player” said Natalie Graham, Down Syndrome Victoria President. “I only agreed to take on this position if she stayed on the team to guide me. It is not only DSV that has seen the benefit of her willingness to share her talent and bring the team on her journey – it is the Australian community. Down Syndrome Victoria is delighted that Kirsten’s selfless contribution has been acknowledged”.
Kirsten Deane's volunteer biography:
2013 - 2014: Co-Chair National Disability and Carer Council
2012 - 2013: ‘National Approach to Choice and Control’ NDIS Expert Group member
2011 – 2013: Victorian Director, Down Syndrome Australia
2009 - 2013: Deputy Chair, National Disability and Carer Council
2009 - 2012: Executive Director, National Disability and Carer Alliance
2009 - 2012: Deputy Director, Every Australian Counts campaign
2009: Thanked and acknowledged as the primary author of Shut Out – The Experience of people with Disabilities and their Families in Australia.
2006 – 2011: Ministerial Council on Students with Disability and Additional Needs (VIC)
2004 – 2010: Victorian Disability Advisory Council
2003 – 2014: Committee of Management, Down Syndrome Victoria
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