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Putting families living with FASD on the health and disability agenda

It was with very mixed feelings that I retired in March 2016 from the Board of the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD Australia).

After seventeen years of voluntary service the decision was not an easy one but was motivated by a need to spend more time with my family, in particular my seven beautiful grandchildren. I am a strong believer that the journey through life is secured by friends and the partnerships we develop and I will find it very difficult to leave behind the working relationships I have experienced with friends and colleagues. I am particularly thankful for the many new friendships that have developed and flourished during this time.

With the support of a small number of concerned parents and frontline workers, I founded NOFASD Australia in 1998 at a time when Fetal Alcohol Spectrum Disorders (FASD) was not acknowledged at any level on the health/disability agenda in Australia.  Any meaningful information to help families could only be found in Canada & the USA. In those early years, scepticism, ignorance and/or a lack of understanding was more often than not the normal response experienced by families seeking FASD information and support from professionals. In 1999 I wrote and widely disseminated a report from the perspective of a carer of a child with FASD, highlighting my concerns about failings in the system, many of which are unfortunately still relevant today.

The Commonwealth Government did not provide any operational funding to our organisation until 2011 and up until then we relied totally on volunteers to provide support and advocacy to hundreds of families living with FASD.  During this time, we also provided workshops and presentations to hundreds of service providers throughout the country as well as many submissions to government.

It took a few quite a few years before the Australian recognition and acknowledgement of FASD began to be addressed in any meaningful way. An early break through was an invitation in 2000 from Professor Eric Haan in Adelaide who asked me to write an Editorial for the SA Birth Defects Register Annual Report and provide an overview of FASD from a parent’s perspective.  This led to an invitation from Professor Elizabeth Elliott and Professor Carol Bower (both now Ambassadors for NOFASD Australia) to address an Annual Scientific Meeting of the Royal Australian College of Physicians and subsequent support and interest from Dr Janet Payne from the Telethon Kids Institute. There was also early interest and commitment to acknowledge and address FASD from Dr Lindsey Adams in Perth, Professor John Whitehall in Qld, Scott & Helen Wilson from the Aboriginal Drug & Alcohol Council SA, the Alcohol Education & Rehabilitation Foundation (now the Foundation for Alcohol Research and Education) the Salvation Army and the Women’s Christian Temperance Union.

There are also many individuals who have shown strong, continuing leadership and advocacy for FASD over the years and whose support and friendship I appreciate and value.  These include, but are by no means inclusive of, Vicki Russell (current CEO of NOFASD Australia), Louise Gray, (current Chair of NOFASD Australia), Anne Russell (Russell Family Fetal Alcohol Disorders Association), Lorian Hayes, Janet Hammill, Neroli Endacott and Christine Rogan (NZ). Thanks must particularly go to my husband Tony for his invaluable, unfailing support and patience and also to my very close friend Barb Smith who was always there in the background and who never failed to provide encouragement and practical support especially during times when the going got tough.

A most notable milestone was the Federal Government Inquiry into FASD and the subsequent report FASD: The Hidden Harm published in November 2012. This led to the previous Labor Government and subsequently, the current Liberal Government, announcing FASD Action Plans.  Unfortunately funding for the current Action Plan was reduced from the $20m promised by the previous Government to only $9m by this Government.  This shortfall resulted in the exclusion in the Action Plan of any strategies for providing services and support to individuals already affected with FASD and their families or the provision of FASD education and training workshops to service providers.

Whilst there is no doubt that FASD is still under-recognised and under-resourced in Australia, many researchers and government and non-government organisations are now recognising that FASD needs and deserves greater recognition and action in Australia.

The fundamental issue that must not be lost in this emerging Australian interest is that the primary focus of any effort intended to mitigate the effects of FASD must place those living with FASD, their families and their support network at the centre of that effort.  Too often, the needs of researchers, policy and program developers, government agencies and funding providers are placed above those who are directly impacted by FASD and whose needs should be the primary focus of any action.

The feedback received from individuals and organisations both nationally and internationally, tells us that NOFASD Australia is widely recognized and respected for the work it does, including advocacy, development of best practices, and knowledge transfer activities such as awareness raising, education, training and key note presentations at relevant seminars throughout Australia. More importantly the organisation provides the essential bridge between researchers, clinicians and those with lived experience of FASD.

There is no doubt I am retiring at a time when the Organisation is faced with funding challenges and will need strength during this critical time. Like any board managed organisation, the NOFASD Board is the heart and soul of the organisation and is ultimately responsible for every function of NOFASD Australia. I know I am leaving a very talented Board ably led by current Chair Louise Gray, who will provide exceptional leadership in the Organisation’s strategic direction.  I am confident that the Board coupled with very experienced and dedicated CEO, Vicki Russell and Staff, will ensure continued growth of NOFASD Australia as a successful NGO supporting and advocating for families living with FASD and educating the community and service providers of their needs.

To NOFASD Australia Ambassadors and all network members who have supported and acknowledged the important and unique work undertaken by the Organisation, with at worst no funding and at best inadequate funding over the last seventeen years, please accept my very sincere and heartfelt thanks.

Sue Miers

Sue Miers AM established the National Organisation for Fetal Alcohol Syndrome and Related Disorders (NOFASARD) in 1999 as a result of her personal experience caring for a child with Partial Fetal Alcohol Syndrome and her struggle to find information and appropriate support services in Australia. Since 1999, the Organisation has been largely run on a volunteer basis. Sue has worked tirelessly, along with the support of a small dedicated group of volunteers, to have FASD recognised as a disability in Australia, to advocate for the rights and interests of people living with FASD and to provide information and support to individuals and families at a grassroots level. During this time, the Organisation has represented the interests of FASD consumers in a variety of national and international forums. Sue Miers was awarded the Member of the Order of Australia in 2006 in recognition for her services to the community through the establishment of NOFASARD, to community education and to reconciliation.


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