18 October 2016
NDIS Board Recruiter must be replaced
Down Syndrome Australia, along with other members of Disability Australia, is dismayed that not one of the potential candidates for NDIS Board positions has either a disclosed disability or lived experience of disability. Read the full AFDO media release here.
4 October 2016
Down Syndrome Australia calls for better information to support new pre-natal testing
For Release: 5 October 2016
Down Syndrome Australia welcomes the current discussion in the media about pre-natal testing, prompted by the release of a BBC2 UK documentary involving British actress Sally Phillips who is the mother of a child with Down syndrome, exploring issues around pre-natal testing for Down syndrome.
Over the last few years the capacity to test for genetic conditions such as Down syndrome before birth has increased. It is now possible to detect various chromosomal conditions pre-natally through a blood test also known as a non-invasive prenatal test (NIPT).
It is the view of Down Syndrome Australia that this advance in medical technology must be accompanied by appropriate information to support families in making informed decisions about testing and how to respond to the results. Feedback from the Down syndrome community suggests that in most cases the information provided to families is out-dated or focused on a very negative portrayal of what it is like to have a child with Down syndrome.
“It is critical that decision-making following a diagnosis of Down syndrome is informed by accurate and relevant information and made freely after active consideration of one’s own values and beliefs” stated Angus Graham, Chairman, Down Syndrome Australia.
Down Syndrome Australia is a non-profit organisation whose primary aim is to represent and progress the needs, interests and aspirations of people with Down syndrome and those who support them throughout Australia.
Since its establishment, Down Syndrome Australia has worked closely with its member organisations, the eight State and Territory Down Syndrome associations in Australia, on issues related to pre-natal testing including by developing a national resource available on its website, to ensure that expectant parents in Australia are provided with contemporary, balanced and up-to-date information about Down syndrome and prenatal testing.
Down syndrome Australia will continue to advocate for better pre-natal information and support as part of its commitment to improving the lives of people with Down syndrome throughout Australia.
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To download a copy of this media release click here.
4 October 2016
Media Release. Down Syndrome Australia CEO
We are very pleased to announce that following an extensive search process, Dr Ellen Skladzien has been appointed CEO of Down Syndrome Australia (DSA).
Dr Skladzien has extensive experience in advocacy, leadership and strategic management positions within the not-for-profit sector. She has expertise in driving change in the disability, health and aged care system through evidenced-based advocacy.
Ellen most recently was the Senior Executive Manager of Policy, Programs and Communications at Alzheimer’s Australia. During her time at Alzheimer’s Australia she has led the advocacy work of the organisation which resulted in dementia being recognised as a national health priority, funding for improvements to the health care system for people with dementia, and most recently support for a program to tackle social isolation and stigma associated with dementia.
Ellen has a Master’s degree in Clinical Neuropsychology and a Ph.D. in Cognitive Psychology from Washington University in St Louis. She has published in peer-reviewed journals and been a lecturer for courses in Statistics, Experimental Psychology and Developmental Psychology.
“We are thrilled to have someone of Ellen’s background, skills and capability join us at DSA. Ellen is passionate about ensuring that the voices of people with lived experience are at the centre of the work she does”, said Angus Graham, Chairman of DSA. At Alzheimer’s Australia, Ellen led a number of initiatives to support people with dementia to set priorities and strategy in advocacy, programs and research including setting up the first Consumer Dementia Research Network in Australia.
Ellen, who will start with DSA on the 17th October, is currently based in Canberra and will re-locate to Adelaide in December. She is married to Tom and together they have two young children, Lilah who is 17 months, & Emy who is 4 years old.