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The Parliament of the Commonwealth of Australia FASD: The Hidden Harm Inquiry into the prevention, diagnosis and management of Fetal Alcohol Spectrum Disorders House of Representatives Standing Committee on Social Policy and Legal Affairs November 2012 Canberra © Commonwealth of Australia 2012 ISBN 978-0-642-79762-9 (Printed version) ISBN 978-0-642-79763-6 (HTML version) This work is licensed under the Creative Commons Attribution-NonCommercial- NoDerivs 3.0 Australia License.
The details of this licence are available on the Creative Commons website: http://creativecommons.org/licenses/by-nc-nd/3.0/au/.
Contents Foreword ............................................................................................................................................ vii Membership of the Committee ............................................................................................................ ix Terms of reference .............................................................................................................................. xi List of abbreviations and acronyms ................................................................................................... xiii List of recommendations .................................................................................................................. xvii THE REPORT 1 Introduction ........................................................................................................... 1 2 FASD and alcohol consumption patterns ......................................................... 11 What are Fetal Alcohol Spectrum Disorders?
...................................................................... 11 History ...................................................................................................................................... 13 The effect of alcohol on a fetus ............................................................................................. 14 Normal development ................................................................................................................. 15 Alcohol exposure ....................................................................................................................... 16 Impact on the fetal brain ............................................................................................................ 18 Effects at critical times of development ..................................................................................... 21 FASD symptoms ..................................................................................................................... 22 Secondary conditions ................................................................................................................ 29 FASD prevalence in Australia ................................................................................................ 31 FASD and Indigenous communities .......................................................................................... 33 Alcohol use in Australian society .......................................................................................... 35 Patterns of consumption ........................................................................................................... 36 Young people ............................................................................................................................ 38 iv Indigenous communities ........................................................................................................... 40 Pregnant women and alcohol consumption rates ............................................................... 41 Reasons pregnant women continue to consume alcohol .......................................................... 43 3 FASD awareness and prevention ...................................................................... 49 Prevention through education and support .......................................................................... 49 The role of health professionals ................................................................................................ 50 Raising public awareness ......................................................................................................... 55 Specialised intervention and support services .......................................................................... 64 Committee Comment ................................................................................................................ 66 Prevention through reforms of alcohol sales and labelling ................................................ 71 Pricing and availability ............................................................................................................... 72 Promotion .................................................................................................................................. 76 Labelling .................................................................................................................................... 78 Committee Comment ................................................................................................................ 86 4 Diagnosis ............................................................................................................. 91 Critical importance of early diagnosis and intervention ...................................................... 91 Obstacles to diagnosis ........................................................................................................... 95 Stigma ....................................................................................................................................... 96 Current capacity of health professionals to diagnose FASD ..................................................... 97 Complexity of FASD ................................................................................................................ 100 Nationally consistent diagnostic tool and guidelines ............................................................... 102 Lack of diagnostic services in Australia ................................................................................... 103 After the diagnosis ................................................................................................................ 106 Committee Comment ............................................................................................................ 110 5 Management needs ........................................................................................... 115 Lack of prevalence data to inform management ................................................................ 116 Carers ..................................................................................................................................... 117 Challenges .............................................................................................................................. 121 Actions .................................................................................................................................... 126 Education ............................................................................................................................... 129 Challenges .............................................................................................................................. 131 v Actions .................................................................................................................................... 134 Criminal Justice System ....................................................................................................... 136 Challenges .............................................................................................................................. 137 Actions .................................................................................................................................... 142 Identifying FASD as a disability ........................................................................................... 143 Committee Comment ............................................................................................................ 145 APPENDICES Appendix A – List of Submissions ......................................................................... 149 Appendix B – List of witnesses appearing at public hearings ............................ 153 Appendix C – List of exhibits .................................................................................. 161 vi Foreword Children are our hope distilled.
At birth they are a launching pad for all of society’s dreams and aspirations.

They personify humanity’s unlimited potential.

Yet tragically, for too many babies in Australia, their opportunities and circumstances are severely diminished even before they draw their first breath.

The harm caused by Fetal Alcohol Spectrum Disorders (FASD) is hidden in the damaged brain.

It may masquerade as naughty behaviour, poor parenting, lack of discipline, or simple-mindedness.

However, it is none of these things.


FASD is an entirely preventable but incurable condition caused by a baby’s exposure to alcohol in the womb.

The consequences are expressed along a spectrum of disabilities including: physical, cognitive, intellectual, learning, behavioural, social and executive functioning abnormalities and problems with communication, motor skills, attention and memory.
While the risk of FASD increases with the quantity of alcohol a pregnant woman consumes, what is not widely understood is that even small amounts of alcohol, at critical times, can result in irrevocable damage to the developing fetus.

In many cases, the damage is not physically apparent but can manifest itself in lifelong learning difficulties and cognitive impairment.

Awareness of FASD is increasing in Australia, but much work needs to be done.
The series of recommendations made by the Committee outline a national strategy to prevent, identify and manage FASD in Australia.

This national strategy can spearhead progress in all sectors—health, education, criminal justice, social support—toward understanding, treating and most importantly eliminating FASD.
viii The Committee is grateful for the unstinting work of individuals and organisations that have contributed to increasing awareness and knowledge of FASD and its prevalence in Australia and have lobbied for action, often without recognition or remuneration.

These efforts have been the catalyst for this parliamentary inquiry and the actions that will follow.

Time and again during the inquiry, the Committee heard about the devastation that can be caused by prenatal alcohol exposure.
Foster carers spoke about children in their care and the enormous challenges they face.

Paediatricians spoke about the lack of awareness and lack of diagnostic resources for FASD.

Indigenous community leaders spoke about communities and culture in crisis due to FASD.

Women spoke about the conflicting health messages given and the desperate need for clear advice from health professionals.

Amidst all these voices, the most moving was that of Tristan, a young man affected by FASD.
Tristan says: I wish I can be a policeman just when I grow up … Nah … I just want to be normal first.

I just want to be normal.

We owe it to Tristan, and to every child and every woman and every family in Australia, to bring to light the risk of FASD.

We cannot keep hidden the devastating harms being caused by prenatal alcohol exposure.

Mr Graham Perrett MP Chair Membership of the Committee Chair Mr Graham Perrett MP Deputy Chair Hon.
Judi Moylan MP Members Mr Shayne Neumann MP Ms Michelle Rowland MP (to 07 February 2012) Ms Laura Smyth MP Hon.
Dr Sharman Stone MP Mr Mike Symon MP (from 07 February 2012) Mr Ross Vasta MP x Committee Secretariat Secretary Dr Anna Dacre Inquiry Secretary Ms Natalya Wells Ms Pauline Cullen Administrative Officers Katrina Gillogly Rebeka Mills Terms of reference Fetal Alcohol Spectrum Disorder (FASD) is an overarching term used to describe a range of cognitive, physical, mental, behavioural, learning and developmental disorders that result from fetal exposure to alcohol.
The Standing Committee on Social Policy and Legal Affairs is to inquire into and report on developing a national approach to the prevention, intervention and management of FASD in Australia, with particular reference to:  Prevention strategies—including education campaigns and consideration of options such as product warnings and other mechanisms to raise awareness of the harmful nature of alcohol consumption during pregnancy,  Intervention needs—including FASD diagnostic tools for health and other professionals, and the early intervention therapies aimed at minimising the impact of FASD on affected individuals, and  Management issues—including access to appropriate community care and support services xii List of abbreviations and acronyms ACCG ADCA ADJC Australian Children’s Commissioners and Guardians Alcohol and other Drugs Council of Australia Aboriginal Disability Justice Campaign AHAWA Australian Hotels Association Western Australia AHRC AIHW AMA Australian Human Rights Commission Australian Institute of Health and Welfare Australian Medical Association ANPHA Australian National Preventive Health Agency ANZPAA Australia and New Zealand Policing Advisory Agency APONT Aboriginal Peak Organisations Northern Territory ARBD ARND ASD Alcohol-Related Birth Defects Alcohol-Related Neurodevelopmental Disorders Autism Spectrum Disorders Better Start Better Start for Children with a Disability Initiative DEEWR Commonwealth Department of Education, Employment and Workplace Relations DHHS Department of Health and Human Services, Tasmania xiv DoHA DSICA FAE FaHCSIA FARE FAS FASD FPDN GP KPHU Commonwealth Department of Health and Ageing Distilled Spirits Industry Council of Australia Fetal Alcohol Effects Commonwealth Department of Families, Housing, Community Services and Indigenous Affairs Foundation for Alcohol Research and Education Fetal Alcohol Syndrome Fetal Alcohol Spectrum Disorders First Peoples Disability Network general practitioner Kimberley Population Health Unit McCusker Centre McCusker Centre for Action on Alcohol and Youth NAAA National Alliance for Action on Alcohol NCID NDIS National Council on Intellectual Disability National Disability Insurance Scheme NHMRC National Health and Medical Research Council NOFASARD National Organisation for Fetal Alcohol Syndrome and Related Disorders NRHA pFAS PHAA RACP National Rural Health Alliance Partial Fetal Alcohol Syndrome Public Health Association of Australia Royal Australasian College of Physicians RFFADA The Russell Family Fetal Alcohol Disorders Association Telethon Institute Telethon Institute for Child Health Research the Blewett Report Labelling Logic: Review of Food Labelling Law and Policy xv (2011) the Collaboration The Australian FASD Collaboration the Forum The Legislative and Governance Forum on Food Regulation the Guidelines Australian Guidelines to Reduce Health Risks from Drinking Alcohol WANADA Western Australian Network of Alcohol and other Drug Agencies WFA WHO Winemakers’ Federation of Australia World Health Organization xvi List of recommendations 1 Introduction Recommendation 1 The actions set out in this report should constitute the Commonwealth Government’s National Plan of Action for the prevention, diagnosis and management of Fetal Alcohol Spectrum Disorders (FASD).
This FASD National Plan of Action should be publicly released by 1 June 2013.

Recommendation 2 The Committee recommends that the Commonwealth Government immediately establish an ongoing Fetal Alcohol Spectrum Disorders (FASD) Reference Group reporting to the relevant Commonwealth Government Ministers, consisting of a select group of appointed practitioners, professionals and stakeholders who are experts in the field of prevention and management of FASD.
The role of the FASD reference group would be to oversee and advise on the FASD National Plan of Action.

Recommendation 3 The Committee recommends that the Commonwealth Government publicly report:  within 12 months on the progress of the implementation of a national Fetal Alcohol Spectrum Disorders (FASD) diagnostic and management services strategy, a critical element of the FASD National Plan of Action, and  within five years on the progress towards eliminating FASD in Australia.
xviii 3 FASD awareness and prevention Recommendation 4 The Committee recommends that the Commonwealth Government work with the National Health and Medical Research Council and professional peak bodies to ensure that all health professionals are: fully aware of the National Health and Medical Research Council  Guidelines that advise women not to drink while pregnant;  have alcohol consumption impacts on pregnancy and the developing fetus incorporated into all general practice and midwifery training; trained in discussing the National Health and Medical Research  Council Guidelines and alcohol consumption with women; and skilled in asking women about alcohol consumption and  recognising and responding to women at risk.
By 1 January 2014, all health professionals, including sexual health advisors, midwives, general practitioners and obstetric professionals should be promoting the consistent message that not drinking while pregnant is the safest option, in line with the National Health and Medical Research Council Guidelines.
Recommendation 5 The Committee recommends that the Commonwealth Government establish mechanisms for health professionals to record women’s alcohol consumption during pregnancy, or at the time of birth for women who have not presented for prenatal care, and to ensure such information is recorded in midwives data collections or notifications across Australia.
Recommendation 6 The Committee recommends that the Commonwealth Government implement a general public awareness campaign which promotes not drinking alcohol when pregnant or when planning a pregnancy as the safest option, consistent with the National Health and Medical Research Council Guidelines.

Specific awareness campaigns should be developed to target youth and Indigenous communities.
Nationwide campaigns should be started no later than 1 July 2013. xix Recommendation 7 The Committee recommends that the Commonwealth Government mandate a health advisory label advising women not to drink when pregnant or when planning a pregnancy to be included on the packaging of all pregnancy and ovulation testing kits.

These labels should be in place by 1 October 2013.


Recommendation 8 The Committee recommends that the Commonwealth Government raise with the States and Territories the critical importance of strategies to assist Indigenous communities in managing issues of alcohol consumption and to assist community led initiatives to reduce high-risk consumption patterns and the impact of alcohol.
Recommendation 9 The Committee recommends that the Commonwealth Government work with State and Territory governments to identify and implement effective strategies for pregnant women with alcohol dependence or misuse.
Recommendation 10 The Committee recommends that the Commonwealth Government seek to include health warning labels for alcoholic beverages, including a warning label that advises women not to drink when pregnant or when planning a pregnancy, on the Legislative and Governance Forum on Food Regulation’s December agenda.
The Commonwealth Government should determine the appropriate format and design of the labels by 1 March 2013, to assist the alcohol industry in adopting best practice principles and preparing for mandatory implementation.

xx Recommendation 11 The Committee recommends that the Commonwealth Government mandate the range of health warning labels for alcoholic beverages as decided by the Legislative and Governance Forum on Food Regulation.
 The warning labels should consist of text and a symbol and should be required to be displayed on all alcohol products, advertising and packaging by 1 January 2014;  The minimum size, position and content of all health warning labels should be regulated; and  The introduction of mandated warning labels should be accompanied by a comprehensive public awareness campaign.
Recommendation 12 The Committee recommends that the Commonwealth Government commission an independent study into the impacts of the pricing and availability of alcohol and the influence of these factors in the changing patterns of alcohol consumption across age groups and gender.

The study should be completed by 1 October 2013.


Recommendation 13 The Committee recommends that the Commonwealth Government commission an independent study into the impacts and appropriateness of current alcohol marketing strategies directed to young people.
The study should have regard to these strategies and the volume and frequency of alcohol consumption amongst young people, the links being made between alcohol and sport, the efficacy of efforts to promote responsible drinking behaviours, and the adequacy of current regulations to respond to marketing through digital platforms such as the internet, social media and smartphones.

The study should be completed by 1 October 2013.


Recommendation 14 The Committee recommends that, following the completion of the study into the pricing and availability of alcohol and the study into alcohol marketing strategies, the Commonwealth Government develop a National Alcohol Sales Reform Plan aimed at reducing the harms caused by irresponsible alcohol consumption across Australia.
xxi 4 Diagnosis Recommendation 15 The Committee recommends that the Commonwealth Government expedite the rollout of the Fetal Alcohol Spectrum Disorder (FASD) diagnostic instrument and the development of a training and user manual.

These should be available for use by 1 October 2013.

Following the rollout, the Commonwealth Government should establish a mechanism to collect and monitor diagnostic data in order to assess the effectiveness of prevention strategies and patterns of FASD occurrence.
Recommendation 16 The Committee recommends that the Commonwealth Government develop and implement a national Fetal Alcohol Spectrum Disorders (FASD) diagnostic and management services strategy.
This strategy should be monitored and informed by the FASD Reference Group, and should establish capacity by 1 July 2014 for the following:  awareness amongst all general practitioners and child and maternal health professionals of the causation and clinical features of FASD and the importance of early diagnosis and intervention; establishment of a model for diagnostic services such that regional  as well as metropolitan areas are properly serviced; and identification of effective methodologies of management including  international best practice.
5 Management needs Recommendation 17 The Committee recommends that the Commonwealth Government develop educational material to raise awareness about Fetal Alcohol Spectrum Disorders (FASD).

These materials should be monitored and informed by the FASD Reference Group.
In particular, targeted training and materials should be developed for:  special education teacher aides and class teachers;  parents, foster carers and foster care agencies;  police and court officials;  youth workers and drug and alcohol officers; and  officers in correctional facilities and juvenile detention centres.
xxii Recommendation 18 The Committee recommends that the Commonwealth Government include Fetal Alcohol Spectrum Disorders in the List of Recognised Disabilities and the Better Start for Children with a Disability Initiative.
Recommendation 19 The Committee recommends that the Commonwealth Government recognise that people with Fetal Alcohol Spectrum Disorders have, amongst other disabilities, a cognitive impairment and therefore amend the eligibility criteria to enable access to support services and diversionary laws.