In the Fitzroy Valley

INDIGENOUS HEALTH

The Marulu* Strategy 2008–2012: overcoming Fetal Alcohol Spectrum Disorder (FASD) in the Fitzroy Valley

James P. Fitzpatrick,1,2 June Oscar,3,4 Maureen Carter,5 Elizabeth J. Elliott,2,6 Jane Latimer,7 Edie Wright,8 John Boulton9,10

espite years of public policy targeting Abstract health promotion and improved Dprimary care services, health and Objective: Aboriginal leaders concerned about high rates of Fetal Alcohol Spectrum Disorder education outcomes for Aboriginal children (FASD) in the Fitzroy Valley, remote north-western Australia, introduced restrictions on access to are poor relative to the general population.1 take-away full-strength alcohol. Following this, Aboriginal leaders engaged strategic partners In some remote Aboriginal communities 85% in a broader strategy to address FASD in the region. The aim of this study was to develop and of children were found to be developmentally implement a community-led, researcher-supported, FASD strategy. vulnerable in one or more developmental Methods: A review of literature focusing on community-led FASD strategies identified key domains, compared with 22% in the general components that informed the Marulu FASD strategy. These included strategy ownership, 2 Australian population. An important, yet leadership, and governance by participating communities, and a research framework. poorly understood, determinant of these Results: Community meetings and workshops led to the development of The Marulu FASD outcomes is the impact of prenatal alcohol Strategy (2008). Feasibility and community consent to conduct a FASD prevalence study (the exposure (PAE) on childhood learning and Lililwan Project) was confirmed, and implementation was progressed (2010–2013). Concurrent development.3 Alcohol is a teratogen and PAE FASD prevention activities were conducted. In 2012, the Marulu FASD Unit was established may cause damage to the developing brain, within a local Aboriginal organisation to sustain and coordinate ongoing strategy activities. leading to a spectrum of lifelong learning and behavioural problems termed Fetal Alcohol Conclusions: Community control of public health initiatives can be achieved when Aboriginal Spectrum Disorder (FASD). The adverse effect communities prioritise issues of significant concern, and engage strategic partners to of FASD on child development, education and overcome them. behaviour has been identified as posing a Implications for public health: The Marulu Strategy forms a template for action to address risk to the continuation of Aboriginal culture FASD and other public health issues in Aboriginal communities in Australia and internationally. that is passed down through oral stories Key words: Australian Aboriginal; Fetal Alcohol Spectrum Disorder (FASD); prevention; prenatal and songs.4 Across the life course, affected alcohol exposure; social change individuals have a reduced opportunity for participation and productivity within the In responding to the social and health frameworks, community education and community because of disrupted education, impacts of FASD, broad strategies that prevention initiatives, health and education- trouble with the law, mental health problems, address prevention, diagnosis and targeted based programs and family-based programs.9 and alcohol and other drug dependency therapy are considered best practice.6-8 The An international inventory of Indigenous common in FASD.5 majority of interventions relating to FASD community-based initiatives cites the *Marulu means ‘precious, worth nurturing’ in the Bunuba have been documented in North America.9 following key components of a successful language of the Fitzroy Valley These include national and regional policy FASD strategy: strengthening and supporting

1. Telethon Kids Institute, The University of Western Australia 2. Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, New South Wales 3. Marninwarntikura Fitzroy Women’s Resource Centre, Fitzroy Crossing, Western Australia 4. School of Public Health, University of Notre Dame, Western Australia 5. Nindilingarri Cultural Health Services, Fitzroy Crossing, Western Australia 6. The Sydney Children’s Hospital Network (Westmead), New South Wales 7. The George Institute for Global Health, Sydney Medical School, University of Sydney, New South Wales 8. Kimberley Education Regional Office, Western Australian Education Department 9. The Centre for Values, Ethics and Law in Medicine, University of Sydney New South Wales 10. Faculty of Health, The University of Newcastle, New South Wales Correspondence to: Dr James P. Fitzpatrick, Population Sciences Division, Telethon Kids Institute, 100 Roberts Rd, Subiaco, Western Australia 6009; e-mail: [email protected] Submitted: November 2016; Revision requested: February 2017; Accepted: April 2017 The authors have stated they have no conflict of interest. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. Aust NZ J Public Health. 2017; 41:467-73; doi: 10.1111/1753-6405.12689

families, being community-led and culturally health, where research has traditionally been pastoralists removing them from country by appropriate, building capacity in community done on, not with, Aboriginal people.18,19 force in the 1890s,24 the killing of Aboriginal members and organisations, and engaging Discussion focused on improving the conduct people in the early 1900s in disputes with collaborative partnerships in a coordinated of Aboriginal health research has stressed the settlers, the removal of Aboriginal children approach.10 importance of engaging with the community from their families as a result of assimilation In Australia there has been a sustained to address community priorities and goals policies between the early 1900s and the research and advocacy effort to increase before the design process. In addition, 1960s, religious transformation by the awareness and action around FASD for facilitating local ownership, control, and the missions beginning in the 1950s, and oil almost two decades.3,11 In recent years development of research capacity is essential drilling and mineral exploration in the 25,26 the Australian Government has increased to respecting cultural protocols. Specific 1960s. Between 1960 and 1975 a series of its focus on FASD through research into recommendations to improve research laws was passed in the Australian Parliament diagnosis and prevention initiatives. A conduct include working with community to recognise Aboriginal people as citizens national plan to reduce the impact of and local organisations to embed research in of Australia, granting them the right to FASD was announced in 2014 with a focus local services, employment of local people in vote, to be paid equal wages in the pastoral 23 on nationally coordinated programs in research, having a flexible research approach, industry and to consume alcohol. In the primary prevention, secondary prevention and patience to allow sufficient time for Fitzroy Valley, the Pastoral Industry Award, 19 targeting pregnant women with alcohol consultation and data collection. while ensuring equal wages for Aboriginal dependency, improved access to diagnosis Unfortunately much of the dialogue about workers, had the unfortunate consequence and management services, and targeted Aboriginal people controlling their own of forcing people off their traditional lands, measures to support Indigenous and socially research agenda has been theoretical with since pastoralists could no longer pay 27 disadvantaged communities.8 This plan has research activities ‘on the ground’ very rarely workers with simple rations. The resultant been considered by emerging community- reported.19-21 The following paper describes town-based concentrations of Aboriginal based strategies, most initiated by Aboriginal the development and implementation of a people, dislocated from country and without community organisations. These strategies multifaceted strategy to prevent, diagnose, the ability to carry out a traditional life or include an innovative community-designed and manage FASD driven by community participate in meaningful employment, laid antenatal education program, delivered since leaders in the Fitzroy Valley, and their research the foundations for an epidemic of social 2008 by the Ord Valley Aboriginal Health partners. and emotional ill health and chronic alcohol Service in the Kimberley region of Western overuse that has persisted for almost four 25 Australia. An evaluation of this program Setting decades. reported cessation of drinking during the The Fitzroy Valley is located along the Fitzroy A focus on FASD in the Fitzroy Valley pregnancy period in all women receiving River floodplains in remote north-western 12 FASD education over a 12-month period. Australia, about 2,500 km north-east of In 2006 a ‘tipping point’ was reached Complementing community-led strategies, Perth, and 400 km from the Kimberley’s when the impact of alcohol oversupply the Western Australian (WA) Government has regional hub of Broome. Fitzroy Crossing and overuse in the Fitzroy Valley became developed a FASD Model of Care and funded provides a service centre for some 45 critical, with almost 50 deaths in as many the WA Drug and Alcohol Office’s (now the remote satellite communities of the Fitzroy weeks, including 13 suicides (personal Mental Health Commission) evidence-based Valley within a 200 km radius.22 Of the 4,500 communication, June Oscar 2011). FASD prevention program, Strong Spirit people in the Fitzroy Valley, about 80% This triggered a coronial enquiry which 6,13 Strong Future (SSSF). SSSF has included are Aboriginal and identify with four main determined that alcohol was a contributing statewide media campaigns (television, language groups: Bunuba, Gooniyandi, factor in each of 22 cases investigated in 28 radio), health workforce training and resource Walmajarri/Wangkatjungka and Nyikina.22 the Kimberley region. In 2007, leaders in development, and a small grants program Traditional cultural practice and languages the Fitzroy Valley became aware that many to fund community-based FASD prevention are maintained, and systems of cultural children in their communities displayed 13 initiatives. governance provide a framework for learning and behavioural difficulties, as well While there are examples of promising community priority setting and decision as unusual facial features and poor growth. practice in FASD prevention in Australia, making.4 Leadership and cultural authority They believed that the common practice of there have been no comprehensive FASD are maintained by community elders. women drinking alcohol during pregnancy, prevention, diagnosis and management Certain aspects of community leadership which they themselves had observed, programs in place in Aboriginal communities, are determined on the basis of gender. For might be adversely affecting their children’s or indeed in any Australian communities. example, women decide on key community ability to grow, learn and develop. They Sustainable solutions to public health priorities relating to pregnancy and had heard about FASD and were concerned problems require approaches across parenting.23 that this could threaten the continuation of multiple levels, incorporating organizational, their language and culture. At a Women’s psychological, cultural, community, and Historical context Bush Camp in 2007, discussions were held 14-17 between senior women of the Valley’s four regulatory methods. These perspectives Over time the Fitzroy Valley communities main language groups. Due to the growing form the basis of a sound social-ecological have survived many challenges to the 17 awareness of the threat FASD posed to approach. This multi-layered perspective preservation of their culture and control of culture, FASD was prioritised as an issue needs considerable attention in Aboriginal country (land). These have included European

for the community to act upon (personal two-year period following the restrictions.31,32 staff and management often had limited time communication June Oscar, Maureen Carter, During that time, rates of alcohol-related to allocate to new or emerging work, such Olive Knight, 2008). crime and injury decreased, while school as a FASD strategy. Furthermore, the high Contemporaneous with the growing attendance and food purchases at the local turnover of agency staff and management 31,32 community focus on FASD, local stores increased. in the remote Kimberley region posed a paediatricians had linked heavy alcohol challenge to continuity of commitment and use in the Fitzroy Valley with adverse child Methods leadership. The fact that community leaders outcomes,29 and were developing service had prioritised FASD, and the significant capacity to respond to this issue. Lack of Process for strategy development impact FASD has across multiple agencies, awareness of FASD among the community FASD is a complex issue and requires a multi- provided a strong incentive for agencies members and service providers of the Fitzroy faceted approach across the community to collaborate in a Marulu FASD Strategy Valley had been recognised. Further, there and service landscape. The Marulu Strategy Leadership Team. was little capacity to prevent, diagnose or was framed within a social ecological Funding limitations were a significant manage this condition. In 2008, a series of framework integrating policy, environmental, challenge to establishing a multi-agency meetings and workshops were held between organisational, community and individual approach to FASD. However, the engagement community leaders and local paediatricians strategies to address a specific public health of a volunteer coordinator, and in-kind to develop a strategy to better understand, issue.17 This multi-level approach is key to contributions from participating agencies, and overcome, FASD in the Fitzroy Valley. addressing the systemic drivers of alcohol enabled the strategy to be progressed until This strategy led to an attitudinal shift in the use in pregnancy, as well as factors at the dedicated funding was made available for community from a state of crisis relating to community, family, and individual levels. strategy coordination and management. alcohol use in pregnancy, to one of control. A number of key principles, including The community chose the term Marulu to community engagement and collaborative Establishing strategy leadership and describe the strategy. Marulu is a Bunuba efforts across sectors to address a common governance word meaning ‘precious, worth nurturing’ issue, were incorporated into strategy FASD affects all aspects of a person’s function and is how the Aboriginal communities of the planning. Importantly, the interventions were and participation, is a lifelong condition Fitzroy Valley regard their Lililwan, meaning developed at the community level, rather and requires a broad service response ‘little ones’ in Kimberley Kriol. The aims of than externally imposed or enforced. There including health, mental health, education, the strategy were to raise awareness of and is evidence suggesting that public health child protection, disability services, police prevent FASD, to determine its prevalence, interventions (such as alcohol restrictions) and the justice system.36,37 To reflect the to build local diagnosis and management that are community led, are more effective complexity of the response required in the capacity in health and education services, and and sustainable than those imposed upon a Fitzroy Valley, an interagency collaboration to enhance support for families. 33 community. Furthermore, evidence from was formed to guide strategy development initiatives addressing similar public health and implementation. A key element to the Alcohol restrictions: disrupting the issues indicate that approaches combining success of the Marulu Strategy was strong chronic oversupply of alcohol research, sophisticated communication local leadership and meaningful community In response to the adverse health and social strategies and high-level advocacy have engagement in planning and implementation outcomes from high levels of alcohol use been most effective in influencing policy and processes. In October 2008, a leadership team 34,35 in the Fitzroy Valley, community leaders health behaviour. was established with senior representation determined that the detrimental effects of Challenges in implementing a broad strategy from local agencies (Figure 1). Leadership alcohol use must be addressed. Following to address FASD included engaging health, team functions included oversight of the extensive community consultation and with education, justice and policing, disability, Marulu Strategy to ensure that priorities the endorsement of senior cultural leaders, an child protection and other organisations in a remained relevant to community members appeal was made by local women June Oscar meaningful way during the process. Agency and service providers. Nindilingarri Cultural and Emily Carter to the WA Director of Liquor Licensing to introduce restrictions on the sale Figure 1: Marulu Strategy leadership team local representative organisations. of full-strength take-away alcohol in 2007. This was despite significant opposition from Nindilingarri Cultural Health Services (Chair) businesses and some community members. Marninwarntikura Fitzroy Women’s Resource Centre (Chair) A determination was made in their favour such that: “The sale of packaged liquor, WA Country Health Services (Kimberley paediatric and child health service, Fitzroy Valley exceeding a concentration of ethanol in Community Health service, Fitzroy Valley Hospital, Kimberley Population Health Unit, liquor of 2.7 per cent, is prohibited to any Kimberley Mental Health and Drug and Alcohol Service) 30 person, other than a lodger.” This restriction Kimberley Education Regional Office and Independent Schools Association provided a circuit-breaker to the oversupply and overuse of alcohol and was extended Department for Child Protection and Family Services indefinitely when an independent evaluation Disability Services Commission documented improvements in health, education and policing outcomes in the Fitzroy Crossing Police

Health Services and Marninwarntikura Fitzroy accurate prevalence data were not available response to FASD, including targeting Women’s Resource Centre established lead and a formal prevalence study was required. of existing resources and programs, and roles in governance and coordination of the The proposal for a FASD prevalence study leveraging additional and sustainable funding Marulu Strategy. was highlighted at community meetings. sources. The risks and challenges of doing so were Strategy coordination presented and discussed. Concerns about Engaging strategic partners: The role of coordinating the leadership children and families at risk of stigmatisation a ‘Circle of Friends’ and potential findings from a prevalence team meetings, strategy development and In order to broaden the input into strategy study reinforcing prejudice that FASD is implementation process was significant development and to create an advocacy an Aboriginal issue were raised. Other and the need for a strategy coordinator network, a number of strategic collaborations, risks included duplication or contradictory was identified at an early stage. Without termed a ‘Circle of Friends’, were developed. advice given to children/families already this crucial role, the strategy risked losing These partnerships included regional health in contact with government services, and the momentum of initial planning and and education service managers, government concerns around long term resource support. stakeholder engagement. Initial staffing representatives, corporate and philanthropic Additionally, the opportunities and benefits support was received through the non- groups, and human rights organisations. for the Fitzroy Valley were raised. These government organisation Indigenous While a comprehensive local strategy was were particularly focused on building local Community Volunteers, which recommended being progressed, the scale and impact longer term capacity to prevent, diagnose retiree Ms Meredith Kefford. Ms Kefford was limited, lacked resources and required and manage FASD. Benefits included the performed the Marulu Strategy coordinator high quality FASD prevalence data. Through local health workforce receiving training in role voluntarily from 2009–2011, often living existing relationships between community both diagnosis of developmental disorders in a camper van or tent, and working out of leaders and the George Institute for Global and intervention planning. Further, children local Aboriginal organisations Nindilingarri Health and the University of Sydney, planning and families diagnosed with FASD would and Marninwarntikura. for a study of FASD prevalence and other receive management plans and referrals high-level objectives was commenced. to services. While there would be new Developing strategy objectives Two key activities were progressed, the first diagnoses and referrals, it was suggested and priorities being to produce a film, Yajilarra (meaning that the work burden of local health services The Marulu Strategy priorities were ‘to dream’ in the Bunuba language)38 that should decrease as the focus of the second developed in a series of leadership team documented the implementation of the stage of the project was service provision workshops and community meetings. At Fitzroy Crossing alcohol restrictions. Yajilarra and support. There was general consensus the local level, three priorities and activities was launched at Parliament House, Canberra, at community meetings that the only way to were established. Firstly, FASD prevention in 2009, and later screened at the United provide support for children and families is to was commenced through a process of Nations Permanent Forum on Indigenous first assess the extent of the issue. community consultation, education and Peoples. The film was used to raise the prevention messaging. Nindilingarri Cultural Thirdly, the importance of supporting those profile of the community’s work and to Health Services led the delivery of health living with and managing FASD in the family, leverage funding to support ongoing activity. promotion and prevention activities in local school and justice systems was identified as a Secondly, the feasibility, risks and benefits communities, schools and at local liquor priority area by school representatives, carers of conducting the FASD prevalence study outlets. This included the organisation of drug of people with FASD, service providers and were assessed. In the process of community and alcohol awareness with local schools local police. Suggestions for family support consultation preceding the prevalence during the school term. For example, primary included monthly coordinated meetings for study, the community chose to call it the school children wrote stories about how carers, the involvement of fathers and men in Lililwan Project. The use of the term Lililwan alcohol may affect people’s lives, and these discussions about FASD, the need for respite reflected a commitment to improving the stories were used in promotion activities. care and activities such as family camps, and lives of all children in the Fitzroy Valley Nindilingarri also distributed resources carers sharing their expertise and knowledge communities. To develop and implement the such as DVDs, bookmarks, and FASD dolls through story telling. Lililwan Project a research collaboration (the to the communities. Plastic cups and In addition to local level activities, a series of Lililwan Collaboration) was formed between posters displaying the message that FASD is high-level advocacy and capacity building Nindilingarri, Marninwarntikura, the George preventable were used and displayed at the targets were prioritised. This involved (1) Institute and the University of Sydney. local Inn. engaging in high-level dialogue on FASD Secondly, the need to diagnose FASD through strategic use of film and media, (2) Results using accepted guidelines was identified, contributing to the FASD evidence base, and along with the importance of quantifying (3) forming strategic partnerships. Further, The Marulu Strategy the prevalence of FASD in the community. there were efforts to build capacity in A broad community strategy was developed, Local health professionals had documented individuals, local organisations and services with discrete and focused targets for the crisis of high-risk alcohol use in the through attendance at conferences, training preventing FASD, diagnosing FASD, managing region, and through medical case note in FASD, and creating local employment affected individuals, and supporting families. review estimated that as many as one in opportunities. Of critical importance, the A schematic overview of the Marulu strategy four children may be affected.29 However, strategy prioritised funding a sustainable journey has been previously published

and is demonstrated below (Figure 2).4 The Figure 2: An overview of the Marulu Strategy. Marulu Strategy leadership team maintained oversight of strategy activities across a range of service agencies in the Fitzroy Valley. The Marulu FASD Unit at Marninwarntikura coordinates the broad strategy objectives and employs a pool of local staff working in FASD-related roles. Local cultural health service Nindilingarri delivers prevention programs in communities and schools. A regular multidisciplinary paediatric and allied health process was established by WA Country Health Services, the Kimberley Population Health Unit, Nindilingarri Cultural Health Services and Paediatric Child Health and Education Services (PATCHES Paediatrics). Sustainability has been enhanced through development of capacity in local Aboriginal organisations, the establishment of the Marulu FASD Unit, and providing local employment and training in relation to FASD. Ongoing process and outcome evaluation is being progressed through formal Significantly higher numbers of children The Lililwan Project has been cited as research partnerships between community were found to have a neurodevelopmental demonstrating these characteristics and was organisations and research institutes Figdisorder-alcoholure 2: An over exposedview of (ND-AE). the Marulu These St rategy. singled out as an example of researchers including Telethon Kids Institute, The George results were the catalyst for community applying these best practice principles for Institute and Sydney University. members and health and education research with Aboriginal communities.19 professionals to identify and implement a An important feature of the engagement The Lililwan Project culturally appropriate intervention to improve strategy was that the community themselves Incorporating a prevalence study39 into the the lives of affected children. A therapy and identified FASD as a priority issue, and sought community-led Marulu Strategy provided support program was consequently adapted collaborations with research and service a focal point for initial resources to be and embedded in local schools and results of provider partners. Community leadership 41 sourced from philanthropic groups. With this program are due in 2018. and ownership of the strategy has been seed funding secured from a private donor ensured through embedding resources for in October 2009, the Lililwan Collaboration Conclusions and implications the strategy within local Aboriginal owned conducted a community consultation for public health organisations. A relationship of trust formed around the risks, benefits and feasibility the basis of the research partnership between of conducting the Lililwan Project.40 The The Marulu Strategy demonstrates a local community organisations and research community provided overwhelming support community-led approach to overcoming institutes. A lead investigator, who was a local for the study to proceed and the consultation the complex and sensitive issue of FASD in paediatrician, lived in the community for the was documented in a report that was used, remote Australian Aboriginal communities. duration of the FASD prevalence study, and along with the high-impact film Yajilarra, to Using a social-ecological approach,17 the this commitment forged a strong relationship lobby for further funding support.40 Direct strategy aimed to drive change in policy and between the participant communities and representation to Government Ministers practice, service provision, and community the study team. The process undertaken to and departmental officials resulted in the and individual knowledge, attitudes and consult and plan the Lililwan Project was Lililwan Project being funded by the then behaviour. By providing a focus for resourcing commended as a template for research in Australian Government departments of and activity within the broader Marulu collaboration with Aboriginal communities, Health and Ageing, and Families, Community Strategy, the Lililwan Project provides a and indeed with all communities, in the Services and Indigenous Affairs. The Lililwan catalyst for progressing tangible, quantifiable Aboriginal and Torres Strait Islander Social Project, through collecting high quality data outcomes within the cultural frameworks and Justice Commissioner’s 2010 Social Justice and using a community engagement and priorities of the Fitzroy Valley communities. Report.4 This strategy could be applied to development approach to research, has had In the literature, strategies recommended a number of different conditions, and in a a significant influence in creating a sustained for research with Aboriginal communities number of different Aboriginal and non- impact and progressing all elements of include having community support and Aboriginal settings. the Marulu Strategy. The Lililwan project building good relationships, employing Progressing a national FASD agenda is documented the prevalence of Fetal Alcohol local people in research, being flexible in the a significant undertaking that needs Syndrome and partial Fetal Alcohol Syndrome research approach, and allowing sufficient considerable time and resources. However, 39 in the Fitzroy Valley at 120 per 1000 children. time for consultation and data collection.19 teachings from the Marulu strategy

demonstrate that momentum for this driven by community reference groups and 15. Anderson DR, O’Donnell MP. Toward a health 46-48 promotion research agenda:“State of the Science” endeavour could be harnessed from smaller local service providers. By translating reviews. Am J Health Promot. 1994;8(6):462-5. scale local wins.42 Policy around FASD and the successful FASD strategy from the 16. Frieden TR. A framework for public health action: broader alcohol prevention in Aboriginal Fitzroy Valley, communities across Australia the health impact pyramid. Am J Public Health. 2010;100(4):590-5. communities should align with community and internationally have an opportunity 17. Stokols D. Translating social ecological theory into goals and focus on delivering sustainable and to address this significant public health guidelines for community health promotion. Am J Health Promot. 1996;10(4):282-98. long term benefits. Control by community challenge. 18. Humphery K. Dirty questions: Indigenous health members and organisations is imperative and ‘Western research’. Aust N Z J Public Health. 2001;25(3):197-202. to this sustainability. Improving access to Acknowledgements 19. Mc Loughlin F, Hadgraft NT, Atkinson D, Marley JV. services designed to support women with Aboriginal health research in the remote Kimberley: alcohol dependency (and partners / families) An exploration of perceptions, attitudes and concerns James Fitzpatrick and June Oscar are joint first of stakeholders. BMC Health Serv Res. 2014;14(1):517. needs to be implemented at the local service authors of this paper. 20. Hart M. Indigenous worldviews, knowledge, and level. At the same time, governments must research: The development of an Indigenous research paradigm. J Indig Voices Soc Work. 2010;1(1):1-16. develop and introduce legislation supporting 21. Henderson R, Simmons DS, Bourke L, Muir J. the implementation of measures proven to References Development of guidelines for non-Indigenous people undertaking research among the Indigenous 1. Australian Health Ministers Advisory Council. Aboriginal decrease alcohol use. These include focusing population of north-east Victoria. Med J Aust. and Torres Strait Islander Health Performance Framework 2002;176(10):482-5. on taxation, restricting advertising and Report: 2010. Canberra (AUST): Australian Department 22. Morphy F. Population, People and Place: The Fitzroy Valley limiting access to alcohol – e.g. trading hours of Health and Ageing; 2011. Population Project. Canberra (AUST): Australian National 2. Royal Children’s Hospital Melbourne. Australian and the design of the built environment. University, 2010. Early Development Index Community Profile 2012: 23. La Fontaine M. New Legend: A Story of Law and Culture Further, there needs to be a focus on West Kimberley, Western Australia. Parkville (AUST): and the Fight for Self-Determination in the Kimberley. Royal Children’s Hospital Melbourne Child and improving data collection around FASD, so Fitzroy Crossing (AUST): Kimberley Aboriginal Law and Family Centred Care; 2012 [cited 2015 Nov 22]. Culture Centre; 2006. p. 212 . that the extent of the issue can be defined Available from: https://www.aedc.gov.au/ClientData/ 24. Pedersen H, Woorunmurra B. Jandamarra and the CommunityProfiles/2012_52800.pdf and the impact of strategies measured and Bunuba Resistance. Broome (AUST): Magabala Books; 3. Elliott EJ, Bower C. FAS in Australia: fact or fiction? J 42 1995. understood. The Lililwan project has been Paediatr Child Health. 2004;40(1-2):8-10. 25. Hawke S. A Town is Born: The Story of Fitzroy Crossing. instrumental in quantifying an evidence 4. Gooda M. Social Justice Report. Sydney (AUST): Broome (AUST): Magabala Books; 2013. p . 211. Australian Human Rights Commission; 2010. base from which to advocate for resources 26. Thorburn K. ‘Indigenous Governance’ and Aboriginal 5. Streissguth AP, Bookstein FL, Barr HM, Sampson PD, 4 Political Practice: The Gulf Between Two Organisations to prevent and manage FASD. Without O’Malley K, Young JK. Risk factors for adverse life in the Fitzroy Valley, West Kimberley. Canberra (AUST): outcomes in fetal alcohol syndrome and fetal alcohol strong policy and adequate funding, the Australian National University; 2011. effects.J Dev Behav Pediatr. 2004;25(4):228-38. 27. Varying Order to the Pastoral Industry Award 1965, people of the Fitzroy Valley face significant 6. Department of Health Western Australia. Western (1967). Australian Fetal Alcohol Spectrum Disorder Model of challenges into the future. Secondary harms 28. Hope A. Record of Investigation into 22 Deaths in Care. Perth (AUST): WA Department of Health Health the Kimberley. Perth (AUST): Western Australian of FASD include disrupted education, mental Networks Branch; 2010. Department of Health; 2008. health and substance abuse problems, and 7. Foundation for Alcohol Research and Education. The 29. Boulton J. The Impact of Alcohol Abuse on the 43 Australian Fetal Alcohol Spectrum Disorders Action Plan engagement in the justice system. A lifetime Development of Children in Indigenous Communities 2013-2016. Canberra (AUST): FARE; 2012. With Reference to Fitzroy Crossing. NutriDate. of secondary disabilities pertinent to FASD 8. Department of Health. Commonwealth Action Plan to 2008;19(4):1-5. Reduce the Impact of Fetal Alcohol Spectrum Disorders and their intergenerational impacts will go 30. Decision of the Director of Liquor Licensing A185682. (FASD) 2013-14 to 2016-17. In: Australian Government 2007. on unchecked unless resources are directed Responding to the Impact of Fetal Alcohol Spectrum 31. Kinnane S, Farringdon F, Henderson-Yates L, Parker Disorders in Australia: A Commonwealth Action Plan. at supporting affected individuals and H. An Evaluation of the Effects of Alcohol Restrictions Canberra (AUST): Government of Australia; 2014. in Fitzroy Crossing Relating to Measurable Health and preventing FASD. 9. Place J. Fetal Alcohol Spectrum Disorder: An Inventory of Social Outcomes, Community Perceptions and Alcohol Intervention Strategies, Programs and Services in Canada. There are many transferable lessons from the Related Behaviours after a 12 Month Period [report]. Prince George (BC): University of Northern British First Perth (AUST): Western Australian Drug and Alcohol Marulu Strategy that could be considered Nations and Inuit Health Branch Columbia; 2007. Office; 2009. 10. First Nations and Inuit Health Branch. It Takes a for the development of a national approach 32. Kinnane S, Farringdon F, Henderson-Yates L, Parker H. Community. Framework for the First Nations and Inuit Fitzroy Valley Alcohol Restriction Report: An Evaluation of to tackling FASD. Building on the success of Fetal Alcohol Syndrome and Fetal Alcohol Effects Initiative. the Effects of a Restriction on Take-away Alcohol Relating the Marulu Stratgey, a multipronged FASD A Resource Manual for Community-based Prevention to Measurable Health and Social Outcomes, Community of Fetal Alcohol Syndrome and Fetal Alcohol Effects. prevention strategy has commenced in the Perceptions and Behaviours after a Two Year Period. Perth Ottowa (CAN): Health Canada; 1997. (AUST): Western Australian Drug and Alcohol Office; Pilbara region of Western Australia where 11. Department of Health. National Organisation for Fetal 2010. 44 Alcohol Spectrum Disorders. Government of Australia similar concerns have been documented. 33. Hudson S. Alcohol Restrictions in Indigenous [Internet]. Canberra (AUST): Government of Australia; Communities and Frontier Towns. Canberra (AUST): Termed ‘Making FASD History’, the main 2015 [cited 2016 Jun 2]. Available from: http://www. Centre for Independent Studies (Australia); 2011. nofasd.org.au focus of the strategy is prevention of FASD. 34. Chapman S, Freeman B. Regulating the tobacco retail 12. Bridge P. Ord Valley Aboriginal Health Service’s fetal environment: beyond reducing sales to minors. Tob Making FASD History will incorporate broad alcohol spectrum disorders program: Big steps, solid Control. 2009;18(6):496-501. awareness raising and health promotion outcome. Aust Indigenous Health Bull. 2011;11(4). 35. Chapman S, Wakefield M. Tobacco control advocacy 13. Alcohol Think Again. Strong Spirit Strong Future efforts, discussion of alcohol use with in Australia: Reflections on 30 years of progress. Health Campaign [Internet]. Mount Lawley (AUST): Mental Educ Behav. 2001;28(3):274-89. women of childbearing age and their Health Commission Drug, Alcohol and Prevention 36. Grant TM, Huggins JE, Sampson PD, Ernst CC, Barr Services Division; 2014 [cited 2017 Mar]. Available networks, and antenatal and postnatal HM, Streissguth AP. Alcohol use before and during from: http://alcoholthinkagain.com.au/Campaigns/ pregnancy in western Washington, 1989-2004: interventions to support mothers and Campaign/ArtMID/475/ArticleID/9/Strong-Spirit- Implications for the prevention of fetal alcohol spectrum 45 Strong-Future their developing children. This strategy disorders. Am J Obstet Gynecol. 2009;200(3):278 e1-8. 14. Winett RA. A framework for health promotion will be further amplified by supportive and disease prevention programs. Am Psychol. alcohol policy, FASD diagnostic clinics 1995;50(5):341-50. and a program of research and evaluation

37. Astley SJ. Profile of the first 1,400 patients receiving 42. Elliott E, Latimer J, Oscar J, Fitzpatrick J, Carter M. 46. Tucker D, White K, Walker R. Service Provision and FASD diagnostic evaluations for fetal alcohol spectrum The Lililwan Collaboration: Inquiry into Fetal Alcohol in Port Hedland: An Environmental Scan. Perth, Western disorder at the Washington State Fetal Alcohol Spectrum Disorders (FASD). Submission to the House Australia: Telethon Kids Institute, 2016. Syndrome Diagnostic & Prevention Network. Can J Clin of Representatives Standing Committee on Social 47. Telethon Kids Institute. Warajanga Marnti Warrarnja - Pharmacol. 2010;17(1):e132-64. Policy and Legal Affairs. Canberra (AUST): Parliament Together We Walk on Country [Internet]. Perth (AUST): 38. Hogan M. Yajilarra: To Dream. Fitzroy Valley (AUST): of Australia; 2012. Telethon Kids Institute; 2017 [cited 2017]. Available Marninwarntikura Fitzroy Women’s Resource Centre; 43. Streissguth AP, O’Malley K. Neuropsychiatric from: https://alcoholpregnancy.telethonkids.org.au/ 2009. p. 20. implications and long-term consequences of fetal our-research/research-projects/current-research- 39. Fitzpatrick JP, Latimer J, Carter M, Oscar J, Ferreira ML, alcohol spectrum disorders. Semin Clin Neuropsychiatry. projects/hedland-fasd-project/ Carmichael Olson H, et al. Prevalence of fetal alcohol 2000;5(3):177-90. 48. Telethon Kids Institute. Making FASD History in the syndrome in a population-based sample of children 44. Tucker D, White K, Walker R. Making FASD History Pilbara: An evidence-based Prevention Intervention living in remote Australia: The Lililwan Project. J Paediatr in the Pilbara Consultation Report: Community and [Internet]. Perth (AUST): Telethon Kids Institute; 2017 Child Health. 2015;51(4):450-7. Stakeholder Consultations 2015. Perth (AUST): Telethon [cited 2017]. Available from: https://alcoholpregnancy. 40. Latimer J, Elliott E, Carter M, Oscar J, Ferreira M, Kids Institute;2016. telethonkids.org.au/our-research/research-projects/ Fitzpatrick JP, et al. Marulu: The Lililwan Project. Fetal 45. Poole N. Fetal Alcohol Spectrum Disorder (FASD) current-research-projects/pilbara-fasd-project/ Alcohol Spectrum Disorders Prevalence Study in the Prevention: Canadian Perspectives. Alberta (CAN): Public Fitzroy Valley: A Community Consultation. Sydney Health Agency of Canada; 2008. (AUST): The George Institute for Global Health; 2010. p. 1-59. 41. Wagner B, Fitzpatrick J, Symons M, Jirikowic T, Cross D, Latimer J. The development of a culturally appropriate school based intervention for Australian Aboriginal children living in remote communities: A formative evaluation of the Alert Program® intervention. Aust Occup Ther J. 2016. doi: 10.1111/1440-1630.12352.