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Effective Approaches to Prevention, Diagnosis and Support for Fetal Alcohol Spectrum Disorder

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Effective Approaches to Prevention, Diagnosis and Support for Fetal Alcohol Spectrum Disorder The Senate Community Affairs References Committee Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum Disorder March 2021 © Commonwealth of Australia 2021 ISBN 978-1-76093-197-1 (Printed Version) ISBN 978-1-76093-197-1 (HTML Version) This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 Australia License. The details of this licence are available on the Creative Commons website: http://creativecommons.org/licenses/by-nc-nd/3.0/au/. Printed by the Senate Printing Unit, Parliament House, Canberra Committee Members Chair Senator Rachel Siewert AG, WA Deputy Chair Senator Wendy Askew LP, TAS Members Senator Catryna Bilyk ALP, TAS (from 5 February 2020) Senator Nita Green ALP, QLD (from 16 March 2021) Senator Hollie Hughes LP, NSW Senator Anne Urquhart ALP, TAS Participating Members Senator Patrick Dodson ALP, NT Senator Stirling Griff CA, SA Senator Malarndirri McCarthy ALP, NT Former Members Senator Raff Ciccone ALP, VIC (from 5 December 2019 to 5 February 2020) Senator Malarndirri McCarthy ALP, NT (until 16 March 2021) Senator Deborah O'Neill ALP, NSW (until 5 December 2019) iii Secretariat Jeanette Radcliffe, Committee Secretary Apolline Kohen, Acting Committee Secretary Sina Hutton, Principal Research Officer Andrew Back, Senior Research Officer Joy McCann, Senior Research Officer Lorraine Watson, Research Officer Carol Stewart, Administrative Officer Stephanie Oberman, Administrative Officer PO Box 6100 Parliament House Canberra ACT 2600 Phone: 02 6277 3515 Fax: 02 6277 5829 E-mail: [email protected] Internet: www.aph.gov.au/senate_ca iv Table of Contents Committee Members ........................................................................................................................ iii Terms of Reference ............................................................................................................................ xi Executive Summary ........................................................................................................................ xiii Abbreviations ................................................................................................................................. xvii List of Recommendations ............................................................................................................... xix Chapter 1—Introduction .................................................................................................................... 1 An invisible epidemic .......................................................................................................................... 2 Previous inquiries ................................................................................................................................ 3 Hidden Harm report (2012) ..................................................................................................... 3 The Invisible Disability report (2012) ..................................................................................... 5 The Preventable Disability report (2015) ............................................................................... 5 Inquiries into alcohol and the criminal justice system ........................................................ 6 Policy initiatives and funding ........................................................................................................... 7 FASD action plan 2013–14 to 2016–17 .................................................................................... 7 Taking More Action on FASD (2016–17 to 2019–20) ............................................................ 7 National FASD strategic action plan 2018–2028 ................................................................... 8 National alcohol strategy 2019–2028 ...................................................................................... 8 State and Territory policies and funding .............................................................................. 9 Reflecting on the past decade ........................................................................................................... 10 Senate inquiry ..................................................................................................................................... 11 Report structure ................................................................................................................................. 12 Conduct of the inquiry ...................................................................................................................... 12 Acknowledgements ........................................................................................................................... 12 Notes on terminology and references ............................................................................................. 13 Chapter 2—Alcohol, pregnancy and FASD ................................................................................. 15 Understanding FASD ........................................................................................................................ 15 What is FASD?......................................................................................................................... 15 FASD as a spectrum disorder ................................................................................................ 16 What causes FASD? ................................................................................................................ 16 How much is too much? ........................................................................................................ 17 v Drinking during the different stages of pregnancy ........................................................... 17 Partner’s drinking behaviour ................................................................................................ 18 Pregnancies exposed to alcohol ....................................................................................................... 18 Rates of alcohol exposure ..................................................................................................... 18 Trends over time .................................................................................................................... 19 Demographics ........................................................................................................................ 19 Factors influencing alcohol consumption during pregnancy ...................................................... 20 Drinking culture ...................................................................................................................... 20 Low levels of awareness of the risks .................................................................................... 21 Social and cultural pressure ................................................................................................. 21 Environment and circumstances ......................................................................................... 22 Incorrect and inconsistent messages ................................................................................... 23 Prevalence of FASD in Australia .................................................................................................... 23 Current estimates .................................................................................................................... 23 An intergenerational problem .............................................................................................. 24 Prevalence in vulnerable populations ................................................................................. 25 Social and economic costs of FASD ................................................................................................. 27 Data on FASD and maternal alcohol consumption ....................................................................... 28 Data on maternal alcohol consumption .............................................................................. 29 Data on cases of FASD ........................................................................................................... 30 Lack of national data .............................................................................................................. 32 Committee view ................................................................................................................................. 33 Alcohol and pregnancy .......................................................................................................... 33 Prevalence ................................................................................................................................ 34 Social and economic costs ..................................................................................................... 34 Chapter 3—Preventing FASD ......................................................................................................... 37 The role of health professionals ....................................................................................................... 37 Early contact with health services ........................................................................................ 37 Barriers to discussing alcohol consumption ...................................................................... 38 Routine screening and brief intervention ...........................................................................
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