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Psychiatry, Psychology and Law

ISSN: 1321-8719 (Print) 1934-1687 (Online) Journal homepage: http://www.tandfonline.com/loi/tppl20

Putting Fetal Alcohol Spectrum Disorder (FASD)on the Map in New Zealand: A Review of Health,Social, Political, Justice and Cultural Developments

Anita Gibbs & Kesia Sherwood

To cite this article: Anita Gibbs & Kesia Sherwood (2017): Putting Fetal Alcohol SpectrumDisorder (FASD) on the Map in New Zealand: A Review of Health, Social, Political, Justice andCultural Developments, Psychiatry, Psychology and Law, DOI: 10.1080/13218719.2017.1315784

To link to this article: http://dx.doi.org/10.1080/13218719.2017.1315784

Published online: 03 May 2017.

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Putting Fetal Alcohol Spectrum Disorder (FASD) on the Map in NewZealand: A Review of Health, Social, Political, Justice and CulturalDevelopments

Anita Gibbs and Kesia Sherwood

Department of Sociology, Gender and Social Work, University of Otago, Dunedin, New Zealand

The damaging effects of alcohol intake have long been recognised as an issue for NewZealand society since the introduction of alcohol by early settlers. In the mid-1990s, NewZealand began to acknowledge the distinct set of impairments that result from prenatalalcohol exposure that is now known as fetal alcohol spectrum disorder (FASD), whichaffects all facets of an individual’s life, including having individual impairments as well assecondary disabilities arising from those impairments. In New Zealand, a collaborative,multidisciplinary and multiagency approach has been necessary in order to offer the bestsupport for individuals and families who are living with FASD. In this article, thedevelopments within New Zealand’s health, justice, social and cultural sectors are traced andthe work of many individual trailblazers who have put FASD on the map is acknowledged.The story of putting FASD on the map in New Zealand is one of determination, hope andopportunity, as well as recognition that there is still a long way to go.

Key words: disability; FASD; fetal alcohol spectrum disorder; health; justice; medical; NewZealand; race; social.

Introduction

Fetal alcohol spectrum disorder (FASD) is aterm that describes a range of permanentbrain-based disabilities resulting from prena-tal exposure to alcohol, which is a teratogen.In New Zealand over half of all pregnanciesmight have involved alcohol exposure(Health Promotion Agency, 2015b; Ministryof Health, 2015). The advice from all sectorsis that there is no safe limit for alcohol con-sumption during pregnancy. Although not allalcohol-exposed pregnancies will result inFASD, conservative estimates are 1 in 100for New Zealand (Ministry of Health, 2015).Internationally, and where communitiesexperience higher rates of alcohol use, the

prevalence rates climb to 1 in 20 (May et al.,2014). For New Zealand, this means that 570or more children are born every year with apreventable disability. Early research both inNew Zealand and internationally completelyunderestimated the prevalence of FASD(Buxton, 2004; Leversha & Marks, 1995;May et al., 2014), mainly because it was notyet a recognised disability. Rather, fetal alco-hol syndrome (FAS) was recognised, withsome emphasis on identifying a particular setof facial features, which it is now knownoccurs in only 4% of diagnosed cases ofFASD (Clarren et al., 2015). The true preva-lence rates of FASD in New Zealand areunknown because, to date, no thorough study

Corresponding: Associate Professor Anita Gibbs, Department of Sociology, Gender and Social Work,University of Otago, PO Box 56, Dunedin, New Zealand, 9054. Phone: +64 3 47956777. Email:[email protected]

! 2017 The Australian and New Zealand Association of Psychiatry, Psychology and Law

Psychiatry, Psychology and Law, 2017https://doi.org/10.1080/13218719.2017.1315784

has been undertaken; however, action isplanned on a number of fronts through arecently launched FASD action plan (FASDWorking Group, 2016a, 2016b).

FASD is a profound lifelong neurodisabil-ity with significant central nervous systemimpairments and in some cases significantphysical impairments. However, for the vastmajority of FASD sufferers and their fami-lies, the greatest harm arises as a result of sec-ondary disabilities, i.e. those harms which areinflicted upon individuals and families bywider society – exclusion, intolerance,stigma, and a failure to be accommodated ineducation, medical and legal systems. Thesocial, behavioural and cognitive impair-ments of FASD are well documented(Popova, Lange, Burd, & Rehm, 2016;Streissguth et al., 2004), and include impair-ments in attention, memory, cognition, lan-guage and communication, motor skills,emotional regulation, age-appropriate behav-iour, and life skills. Children with FASDstand the best chance of a positive outcome ifthey are assessed and diagnosed before theage of 6 years (Buxton, 2004; Streissguthet al., 2004). Sadly, in New Zealand themajority of those with FASD go undiagnosedand unacknowledged (FASD WorkingGroup, 2016a). According to robust interna-tional guidelines on diagnosing and assessingFASD (Cook et al., 2016), children withFASD need to be assessed by members of awell-trained multidisciplinary team of at leasta medical doctor (often a paediatrician orpsychiatrist) and a psychologist. Since themid-2000s New Zealand diagnostic teamshave used international guidance to imple-ment diagnosis and assessment services.

This article begins with a brief overviewof the early work of FASD champions in get-ting FASD on the map, and then explores thebroader health, social, political, justice andcultural developments that have led to greaterFASD awareness and action in New Zealand,from the mid-1990s to the present day, endingwith some thoughts as to future developments.

Early Days

It has taken a long time for FASD to be rec-ognised in New Zealand, in spite of theadvent of advocacy and awareness campaignsfrom the early 1990s – and arguably beforethat. One of the key champions in New Zea-land was and is Christine Rogan, who – inher role as health promoter and FASD projectcoordinator, working for Alcohol Health-watch – has campaigned tirelessly to raiseawareness of the harm caused to unborn chil-dren by alcohol consumption during preg-nancy. Rogan has authored influential factsheets (Alcohol Healthwatch, 2006), briefingpapers and reports (Alcohol Healthwatch,2007; Rogan, 2010), consensus statements(Alcohol Healthwatch, 2014), and book chap-ters (Rogan & Crawford, 2013), as well asplaying a key role in getting professionalsand politicians to listen, facilitating network-ing between researchers and practitioners,initiating training, giving presentations andworkshops, applying for grants, and givingsupport to families. Since 1996, Rogan hasprovided regular communications specificallyfocused on building knowledge and aware-ness of the nature of FASD and its impact, aswell as for the need to cease drinking alcoholduring pregnancy. She joined advocates fromother nations to host the inaugural Interna-tional FASD Awareness Day on 9 September1999 and she has ensured that New Zealandhas participated every year since. She hasraised money for and facilitated the first diag-nostic team training and development in NewZealand (see below), and she started the FetalAlcohol Network (http://www.fan.org.nz) toinform and connect service providers andfamilies. It is fair to say that without this levelof consistent activity, very few of the devel-opments mentioned in the subsequent sec-tions of this article would have been initiatedor achieved.

Another key champion from the mid-1990s was Shirley Winikerei, a grandmotherfrom Hamilton who tirelessly advocated forher adopted daughter and granddaughter,

2 A. Gibbs and K. Sherwood

both of whom were suspected to have FASD(Bidios, 2000; Buxton, 2004). Winikerei setup New Zealand’s first FASD family supporttrust in 1997 (known as FAST), but a lack offunding led to it closing down in 2007 (Col-lins, 2007). She also petitioned the courts andthe government to get FASD recognised as adisability long before it was widely recog-nised (Grade, 2014; New Zealand House ofRepresentatives, 2004). She received a civicaward for her work in 2010, and although sheis now in her seventies she is still supportingnew initiatives. Alongside Winikerei, therehave been many other grandparents, care-givers, and birthparents who have fought fortheir grandchildren and fostered, adopted andbirth children with compassion and tenacityin order to have FASD better acknowledgedand treated.

A more recent and pivotal media cam-paign and story, which dominated the mediaduring 2014/15, was that of Teina Pora, a 17-year-old Maori male with undiagnosed FASDwho had spent 21 years in jail for crimes hedid not commit. Pora was released in 2014,and his convictions were overturned by theprivy council in 2015. Pora was diagnosedwith FASD in 2014 by Drs Valerie McGinnand Craig Immelman (Bennett, 2016; Freck-elton, 2016; Young et al., 2016), and FASDwas viewed as the most significant factor inhis original conviction – his inability toexplain himself, his willingness to agree thathe had committed terrible crimes, his false‘confessions’ to police, and his young devel-opmental age at the time of conviction. Thisput FASD on the map in the wider publicarena, establishing that a failure to recogniseit in the legal process had led to a gross mis-carriage of justice, and could do so again inthe future.

In the early days of getting FASD on themap, many Canadian and United Statesresearchers and experienced practitionerswere invited to New Zealand to share theirexpertise and valuable insights into workingwith people with FASD. These visitors havesupported professionals, carers and families

in New Zealand, many of whom have trav-elled overseas to learn, with the aim of devel-oping capacity in their own regions.Auckland, Northland, Taranaki, Hawkes Bayand Gisborne were the first regions in theNorth Island to have skilled clinicians whowere able to assess and diagnose FASD, andmore recently Nelson, and Dunedin havebegun to develop capacity in the SouthIsland. As early as 2003, Dunedin had profes-sionals undertaking research about the experi-ences of birth parents of children with FASD(Salmon, 2007). Dunedin’s first trainer fromCanada arrived in 2007, and more researchabout the needs of – and services for – peoplewith FASD ensued (Bagley, 2013). Researchand conversations with families, particularlythose who had adopted children from over-seas, highlighted the need for a multi-per-spective understanding of FASD, and amultidisciplinary and multi-context responseto creating services and FASD-tailoredresponses (Fetal Alcohol Spectrum Disorderin the Youth Court, Part 1, 2010; Fetal Alco-hol Spectrum Disorder in the Youth Court,Part 2, 2010; Gyde, 2013; O’Driscoll, 2011;Parsonson, 2015; Rogan & Crawford, 2013;Salmon, 2014; Symes, 2004). New Zealand’sapproach to getting FASD on the map hasinvolved all sectors, families, researchers,health and welfare professionals, Judges andother legal professionals, and internationalfriends.

Health and Medical Developments

FASD is a medical disorder that results inneeds across a range of sectors, includinghealth, mental health, disability, education,care and protection, and justice. It has takentime internationally for FASD to be acceptedas a medical disorder (Shankhar, 2015), andin New Zealand some health professionalsremain poorly informed, despite the range ofmedical literature available. FASD cases maybe diagnosed as attention deficit hyperactivitydisorder (ADHD) or other mood or behaviou-ral disorders, as well as attachment

Putting Fetal Alcohol Spectrum Disorder (FASD) on the Map in New Zealand 3

difficulties, which are common comorbidities(Peadon & Elliot, 2010; Popova at al., 2016;Young et al., 2016). The influence of robustscientific evidence on the harm caused to thedeveloping brain by alcohol – as well as bytrauma, neglect and other substances (Centeron the Developing Child, 2012; 2016) – hasinfluenced the way in which clinicians andother professionals view the world of neuro-disability and motivated them to become bet-ter versed on neuroscience at a basic level,along with brain-based interventions (Bag-ley, 2013; Malbin, 2011). But, for far toolong FASD has been the invisible disability(Brown & Mather, 2014), with families beingturned away by uninformed health and medi-cal professionals (Salmon, 2014; Whitehurst,2012).

The Ministry of Health, Alcohol Health-watch, the Health Promotion Agency andmany other researchers, professional groups,and FASD advocates have promoted consis-tent messages of alcohol cessation duringpregnancy (Ako Aotearoa, 2012; AlcoholHealthwatch, 2006; Ministry of Health, 2007,2010; Royal Australasian College of Physi-cians, 2016; Royal Australian and New Zea-land College of Psychiatrists, 2016). Otherstudies have highlighted the lack of knowl-edge that professionals have about FASD, aswell as the need for FASD-specific diagnosticand other services (Bagley, 2013; Blair,1997; Salmon, 2007; Symes, 2004; Wouldes,2009). For Christine Rogan of AlcoholHealthwatch, the key to action on FASD is todevelop FASD diagnostic capacity and notjust undertake awareness raising:

The lack of any systematic and comprehen-sive multidisciplinary approach to FASDdiagnosis represents a significant missedopportunity for implementing appropriatefollow-up care and prevention. […] Thedevelopment of diagnostic services has beenlimited in New Zealand for a number of rea-sons. Leading among these, a lack of preva-lence data on the affected population hasoften been cited as a reason for the lack ofprogress in developing a systematic

approach to FASD at a national level. Thishas resulted in a situation where a lack ofFASD diagnosis leads to a lack of data,which leads to a lack of resources tostrengthen workforce development andresponsiveness. (Rogan, 2010, pp. 21–22)

When a proposed government FASDaction plan failed to get off the ground in2008, and with the recognition of FASD byYouth Court judges growing, Rogan joinedforces with a handful of committed medicalprofessionals to explore other avenues toaddress the lack of FASD diagnosis and inter-vention. With a successful grant bid, AlcoholHealthwatch initiated a new project with thesehealth professionals to explore the introductionof a multidisciplinary diagnostic capacity toNew Zealand and to ascertain which diagnos-tic protocols provided the best fit for the NewZealand context (Rogan, 2010).

Key people in this first phase include DrsCraig Immelman (child and adolescent psy-chiatrist) and Valerie McGinn (neuropsychol-ogist), both of whom had already completedtheir training in the United States and Canadafor assessing and diagnosing FASD in 2007and 2008, respectively. They began undertak-ing New Zealand’s first FASD assessments in2008. They identified the previously hiddenimpact of prenatal alcohol exposure on thedevelopment of children and young people introuble with the law, and gave evidence tothe New Zealand courts. This initiative waspositively supported by the Principal YouthCourt Judge of New Zealand, AndrewBecroft, along with two other Youth Courtjudges – Fitzgerald and O’Driscoll – whoalso travelled to Canada to gain more knowl-edge about FASD at this time. Since under-taking training, McGinn in particular hascompleted over 400 FASD neuropsychologi-cal assessments, of which 300 have been con-firmed as FASD, and she has proactivelytrained other health and welfare professio-nals. Her neuroassessments have provedextremely helpful to judges in both the youthand adult courts of New Zealand. In 2012,she set up the FASD Centre Aotearoa, with


Dr Zoe MacLaren (paediatrician), New Zea-land’s only private but not-for-profit FASDdiagnostic and treatment service.

Thanks to another grant, diagnostic train-ing of the first district health board (DHB)teams began (Taranaki, Hawkes Bay andAuckland). This included training from DrAlbert Chudley, a pre-eminent FASDresearcher and geneticist from Manitoba, aswell as a visit to the Asante Centre in BritishColombia (Bagley, 2013; Health PromotionAgency, 2015a; Rogan & Crawford, 2013).In 2011, 13 New Zealand clinicians attendedthe biannual international FASD conferencein Vancouver. The three teams set about tak-ing referrals from 2011 in three districts, withHawkes Bay being the most advanced, astheir specialist team includes a social worker,a speech and language therapist, access tooccupational therapy, a neuropsychologist,and a consultant paediatrician (Health Promo-tion Agency, 2015a). The expansion of thetrained teams has continued, and there arenow seven assessment and diagnostic serv-ices up and running in the North Island, withtwo emerging ones in the South Island. How-ever, all of these services – bar the FASDCentre Aotearoa – focus on child/youthassessment, and are not equipped to offer themuch-needed post-diagnostic interventionservices (these are just beginning, as is dis-cussed below).

In 2008, the Ministry of Health funded anextensive systematic literature review (Elliot,Coleman, Suebwongpat, & Norris, 2008),which explored primary, secondary and ter-tiary prevention strategies to reduce the harmcaused from alcohol exposure. Much of thismaterial explored useful screening practices,and in 2010 the Ministry of Health and Alco-hol Healthwatch produced a helpful guideentitled Alcohol and Pregnancy: A PracticalGuide for Health Professionals aimed at GPs,midwives, and other helping professionals todiscuss alcohol and pregnancy, and the risksof continuing to drink while pregnant (Minis-try of Health, 2010). In 2011, ChristineRogan for Alcohol Healthwatch, along with

researchers from the University of Otago,helped to implement a project funded by theMinistry of Health that resulted in an onlineeducational resource for health professionals.Hosted by Massey University’s continuingeducation Ako Aoteroa platform (https://akoaotearoa.ac.nz/projects/pact), the resourceincludes modules about alcohol use and itseffects on the foetus and subsequent FASD,and practical information about screeningand prevention.

In 2014, Alcohol Healthwatch onceagain gathered key professionals, research-ers, FASD-impacted families and advocatesfor a symposium hosted by AucklandUniversity’s Department of PopulationHealth, Centre for Addiction Research, andthis resulted in a Consensus Statement thatcalled for:

Urgent strengthened efforts to improve thelives of individuals with Fetal AlcoholSpectrum Disorder (FASD) and their fami-lies and prevent this brain-based disability.FASD demands shared responsibility withcommitted cross-government and cross-sec-tor policy and service delivery workingtogether in a coordinated, funded and effec-tive strategic direction. (Alcohol Health-watch, 2014, p. 1)

After years of gathering much materialand research, campaigning and advocacyfrom families, the Ministry of Health sup-ported the setting up of an FASD workinggroup, and cross-party committee, involvinga range of disciplines from the health, socialdevelopment, corrections, and education sec-tors, as well as representatives of families andnon-governmental organisations (NGOs)working in the area. A discussion documentwas issued in December 2015, and after 150submissions the FASD working group pro-duced New Zealand’s first three-year actionplan (FASD Working Group, 2016a, 2016b).A key person driving the plan forward wasCatherine McCulloch, a senior policy advisorin the Ministry of Health, who worked pas-sionately to get representation and commit-ment from the main ministries in New


Zealand: those of health, social development,justice, and education. The plan was sup-ported by Hon Peter Dunne, the AssociateMinister of Health, who in the opening state-ment of the plan emphasised the need for col-laboration across sectors and communities toreduce the harm caused by alcohol use. Healso emphasised that New Zealand’sapproach to dealing with FASD needs tofocus on agencies and communities workingtogether for the duration of the lifespan ofpeople with FASD, thus acknowledging thelifelong impacts of the disability. The planitself focuses on prevention, evidence-gather-ing, early diagnosis and support for peopleand their families, and NZ$12 million hasbeen set aside to support the initiatives men-tioned – most of it for investigative and pre-ventative work. During 2016, the Ministry ofHealth also took submissions on a new 10-year disability strategy, changes to specialeducation, and respite services, all of whichhave indirect relevance in terms of interven-tions and support for families for whomFASD is an issue. The disability strategy(Ministry of Social Development, 2016) isunderpinned by principles from the Conven-tion on the Rights of Persons with Disabilities(Convention on the Rights of Persons withDisabilities, 2008), notably respect, participa-tion and inclusion. Even though FASD haspreviously been ‘hidden’ it is now firmly partof the disability agenda in New Zealand.

In the following sections, developmentsin the social, political, educational, justiceand cultural contexts which have influencedthe FASD map of New Zealand are reviewed.

Social, Political and EducationalDevelopments

FASD is beginning to emerge as a socialissue in New Zealand, as more is learnedabout the significant harm that alcohol causesto the brains of unborn children. Historically,the ills of alcohol in relation to entire popula-tions is well established, but only since FASwas first documented in 1973 has it begun to

become clear that its impairment effects onthe brain and behaviour of children are pro-found and lifelong. In New Zealand, the firstchildren with FAS were identified in 1995(Leversha & Marks, 1995). Since then, whilenumerous reports have been published, rein-forced by changes to the alcohol laws andcampaigns to raise awareness, the rates ofdrinking are still alarming – particularly inyoung women, who in recent years havebegun to catch up with men in terms of prob-lematic drinking behaviour (Slade et al.,2016; Superu, 2015). The costs of FASDhave been known for a while, but onlyrecently quantified. The overall annual cost,including the use of services and support, toNew Zealand is estimated as atNZ$690 million, around NZ$15,000 forevery individual with FASD (Ministry ofHealth, 2015). Easton, Burd, Rehm, andPopova (2016) have also estimated the annualloss to economic productivity due to FASD tobe around the NZ$200 million mark. If‘unseen costs’ such as those associated withthe social, health and financial impacts onfamily members are also included, along withthe cost of finding alternative or extra educa-tion, getting legal help, and paying for extramedical expenses and assessments or inter-ventions, then the burden of FASD increaseseven further.

That alcohol misuse and its consequencesare a major social problem in New Zealand isaccepted; yet money is poured into promotingits use. Alcohol’s damaging effects costs thenation billions every year (Law Commission,2009). For Maori, the intergenerationalimpact of colonisation – loss of identity (wha-kapapa), loss of land and connections, pov-erty, violence and alcohol misuse – has leftits mark, with much higher numbers of Maoriin care, in prison, and in poor health (LawCommission, 2009; Simpson, Adams, Oben,Wicken, & Duncanson, 2015; Stanley, 2016).

The media has played an increasing role inhighlighting the tragedies of FASD. Therehave been stories of grandparents fighting forbetter deals for their young ones, stories of


young people with FASD in court facing seri-ous charges, stories of pregnant women drink-ing alcohol, stories of research findings,responses to government initiatives, and manymore (Bidios, 2000; Channel 39 News, 2016;Collins, 2007, 2008; Grade, 2014; New Zea-land Herald, 2015; Satherley, 2016; Savage,2015; Taylor, 2015). The media has had aclear role in influencing how this disability isviewed, and whether or not it is presented as aserious public issue (Eguiagaray, Scholz, &Giorgi, 2016). FASD is getting more attentionin all forms of the media – and with the cover-age comes both hope and stigma, as unfortu-nately there are no guarantees that the mediacoverage of any issue will be a force for good(Bell et al., 2015; Eguiagaray et al., 2016).

Research and professional bodies like theAddictions Research Centre at Auckland Uni-versity and the colleges of health professio-nals have also helped to shape the discourseon alcohol-related harm and FASD (AlcoholHealthwatch, 2014; New Zealand College ofMidwives, 2016; Royal Australasian Collegeof Physicians, 2016; Royal Australian andNew Zealand College of Psychiatrists, 2016).The FASD discussion document (Ministry ofHealth, 2015) received 150 written submis-sions from professionals and individuals(FASD Working Group, 2016b). Submissionsadvocated more awareness raising, screening,diagnosis and action aimed at preventing chil-dren in New Zealand being born with FASD,as well as supporting families and individualscoping with the impairments arising from liv-ing with FASD.

Individual researchers from around NewZealand have noted the damaging effects ofFASD on families and young people, as wellas the continued lack of capability in thehealth, education, welfare and justice profes-sions with regard to acknowledging, assessingand helping to deal with FASD (Bagley, 2013;Blair, 1997; Manning, 2016; Salmon, 2007,2014; Symes, 2004). A number of theseresearchers have proactively supported localinitiatives to help families, train professionals,and raise funds to promote acceptance and

awareness of FASD. Dr Ruth Napper of OtagoUniversity (Gibb, 2010), who specialises inexploring the effects of alcohol on the brainsof rats, has been a determined advocate forfamilies with an FASD in Dunedin, and hashelped raise funds to set up Dunedin’s firstassessment and diagnosis team.

Individual champions, caregivers, youngpeople with FASD and support groups havecontributed substantially to awareness raisingand demand for recognition and services.Early campaigners included families of adopt-ers, both internationally and locally (Buxton,2004; Gyde, 2013). A number of parents whoadopted children from Russia, in particular,were aware of the likely effects of prenatalalcohol exposure. Claire Gyde describes herfamily’s journey from 1999, when she and herhusband Paul adopted their son Jakob fromPskov, Russia. Gyde worked with Rogan andothers to offer online support and FASD-awareness training, and in 2013 this led to thesetting up of the charitable trust FASD-CANInc. (www.fasd-can.org.nz), which aims tosupport caregivers, parents and families, aswell as individuals with FASD, and to educateNew Zealanders more generally about FASD(Gyde, 2013). FASD-CAN now has over 80members, and many of these parent and care-giver advocates were consulted and made sub-missions to the FASD action plan as it wasdeveloped. FASD-CAN is focused on main-taining and further developing relationshipswithin the government and having an influenceat the policy level so that the concerns ofparents and caregivers are heard. FASD-CANis a charity and relies entirely on donations. Ithas successfully partnered with AlcoholHealthwatch and the Health PromotionAgency to host a number of parent workshops.The charity also hosts an online support net-work, with a number of regions having alsoestablished support meetings.

Political Developments

Families and advocates, as previously out-lined, have all raised awareness of the


dangers of alcohol intake and subsequentFASD, and have attempted to get FASD ontothe political agenda, alongside the lobbyingwork of Alcohol Healthwatch. Shirley Winik-erie was well known as an activist for FASDrecognition in political circles during the1990s and early 2000s (Buxton, 2004). Shepetitioned the government in 2004, with 478others, to move that FASD be made a notifi-able disability and gain greater recognition(New Zealand House of Representatives,2004). Her petition was supported by theLabour MP for Hamilton East, Dianne Yates.The petition resulted in some new recommen-dations being made around data collectionand monitoring, but FASD was not recog-nised as a notifiable disability; the committeefelt that the notification would result in stig-matisation and reduced numbers of womenreporting alcohol consumption. The stigmafor birth mothers and children is very real, ina society where alcohol is socially acceptedyet mothers are blamed for the harm causedto their unborn children (Bell et al., 2015;Salmon, 2007).

Other parents and grandparents havecontinued to lobby local and national MPsand ministers in parliament, especially tosupport the recognition FASD as a cross-party issue that is in need of cross-partysupport and multi-ministry involvement.Two MPs, in particular, have been support-ive of FASD activities, resulting in thethree-year action plan (FASD WorkingGroup, 2016a). Tim McIndoe (Winikerie’slocal National MP) and Hon Peter Dunne(of United Future) who is the AssociateHealth Minister, have written and voicedtheir support:

FASD is not solely a concern for women ofchild-bearing age, it is an issue for all of us[…]. Communities need to work together tocreate a context and culture that supportsfamilies and whanau to have healthy, alco-hol-free pregnancies. (McIndoe, 2016, p. 2)

The three-year action plan on FASD isjust one aspect of the challenge ahead to

reduce the harm caused by excessive alcoholintake. Peter Dunne, MP, in his foreword tothe three-year action plan, notes that thestigma associated with FASD needs bereduced and the barriers to accessing helpand support need to be removed (FASDWorking Group, 2016a). In a recent mediaarticle, Labour’s MP Hon Jacinda Ardern hasspecifically supported changes to the criminaljustice to avoid wrongful imprisonments likethat of Teina Pora (Ardern 2016).

Politically, FASD is not going to be a votewinner, yet with the economic and other costsnow being calculated, and with the need forall sectors to be involved in dealing with theimpacts of FASD, it is vital that it remains onthe political priority job list. The need tofocus on neurodisabilities in the prison andcare population (see below; see Lynch, 2016)and on children’s well-being is receivingmore attention from the political parties, aswell as the Office of the Children’s Commis-sion (Becroft, 2016). New Zealand is cur-rently undergoing a radical reshaping of itschild protection services and legislation,some of which is aimed at improving the livesof young people in care or who might end upin care, where neurodisabilities like FASDare a significant issue. This period of reshap-ing makes for an opportune time to ensurethat children and young people with anFASD are identified, assessed, given a voice,and assisted to reach their potential – physi-cally, socially, culturally, and vocationally.

Educational Developments

From an educational perspective, the afore-mentioned issues, people and initiatives haveall added to the raising of awareness ofFASD and its impacts. Nevertheless, one ofthe most tragic impacts of FASD is noticeddirectly at school. Gyde’s (2013) story of herson’s exclusion and alienation from bothschool and his peers is repeated over and overthroughout New Zealand, with lifelong dam-age resulting from being misunderstood byteachers and educational workers. Families


have long campaigned for FASD to be recog-nised as a disability in order to attract fundingto support their children at school – but thishas still not occurred. There has been someexcellent work done recently, alongside thethree-year FASD action plan, developed withfamilies and through the Ministry of Educa-tion Inclusive Education website (http://inclusive.tki.org.nz//). While it is good that theresources on FASD can be accessed directlyby teachers, there appears to be an assump-tion that teachers will go online and educatethemselves; no time or money has been setaside to purposively introduce the materialsand give teachers quality professional devel-opment time or training to use them.

Other educational contributions to theFASD story in New Zealand include a smallreview of educational interventions thatmight help children with FASD at school(Gunn, 2013), and a more extensive literaturereview by Parsonson (2015), which notes thesignificant challenges that children withFASD face in the classroom. This review alsooffers insights on educational strategies thatwould be useful for teachers and other educa-tional professionals to use. Additionally, in2015, Rose Hawkins – a regional disabilityadvisor from Child, Youth and Family –created a pack of FASD cards as an educa-tional resource to be used by practitionersand caregivers in order to better understandand help young people with FASD. She hasdeveloped other resources, along with DrMcGinn, to inform Child, Youth and Familysocial workers nationwide about the specialneeds of children with FASD who are in care.

Justice and Legal Developments

Recognition of and advocacy for individualswith FASD in the justice sector has beendeveloping in New Zealand over the lastdecade. The impetus has come from theFASD health and neurological assessmentsprovided by Dr McGinn and Dr Immelman atall levels of the courts since 2008, which hasresulted in FASD being increasingly accepted

as a mitigating factor both at sentencing andwhen considering fitness to stand trial and beaccommodated in legal processes. Communi-cation assistance is also being provided todefendants with FASD to ensure that theycan participate adequately in the courtroomand when communicating with counsel(Kedge & McCann 2016).

In 2006, Judge Andrew Becroft – Princi-pal Youth Court Judge at the time – identifiedthe growing incidence of neurological dis-abilities in the youth justice context and rec-ognised that FASD is a significant contributorto this cohort of young offenders (Fetal Alco-hol Syndrome & Youth Justice 2006). Also in2007, Judge Tony Wartnick from Seattle vis-ited a youth justice conference in Wellington,speaking about the significance of FASD inrelation to the justice system. Issue 24 ofCourt in the Act published extracts of infor-mation on FASD sent to the sector fromChristine Rogan of Alcohol Healthwatch(Fetal Alcohol Syndrome & Youth Justice2006). Following this publication, early in2007, Judge Becroft came in ‘for a bit offlack’ on New Zealand TV for suggestingthat youth offending ‘might begin prenatally’(Letter to the editor 2007). Rogan wrote a let-ter to the editor of Court in the Act defendingJudge Becroft’s statements, emphasising thatthere was a ‘growing body of evidence’ tosupport his statements (p. 12).

In the same letter to the editor of Court inthe Act in 2007, Rogan attached two emailswith information from and researchers inCanada. The messages highlighted the likelyprevalence of FASD in justice systems, andemphasised the importance of developingprogrammes to deliver appropriate preventa-tive education messages to women and widersociety about the dangers of drinking alcoholduring pregnancy (Letter to the editor 2007).The judges also point out that the problemsare ‘easy to miss’ due to the majority ofFASD sufferers exhibiting no physical signsof disability, warning that these individualsdo not see cause and effect, thus significantlylimiting the efficacy of most justice sanctions


that are largely based on principles of deter-rence and rehabilitation (Letter to the editor2007).

In 2007, two groups – the government-appointed Youth Justice Independent Advi-sory Group (chaired by Judge Becroft) and agroup of Youth Court judges – becameincreasingly concerned regarding inadequateservices for the purpose of diagnosing andresponding to FASD in the youth justice sys-tem, and it was submitted that there is a clearneed to provide proper resourcing to theYouth Court to carry out its statutory mandatein particular. Both groups met separately andregularly, first with Associate Minister ofHealth Hon Damien O’Connor (Labour Gov-ernment) and later with his replacement,Associate Minister of Health Hon PeterDunne (National-led Government), to sharetheir concerns. These groups have consis-tently sought more resourcing for FASDassessment and targeted action in order tohelp young people coming through the courtswho might have FASD.

In 2010, through the Court in the Act 50and 51 editions (Fetal Alcohol Spectrum Dis-order in the Youth Court, Part 1 and Part 2,2010). Judge Becroft – together with JudgeStephen O’Driscoll, a district court judgewith a Youth Court designation – combinedthe growing body of knowledge of FASD toproduce a two-part series on FASD and jus-tice. Issue 51 stresses the importance of jus-tice professionals being aware of FASD, ofensuring individuals who are suspected ofhaving FASD are well represented by anadvocate throughout the justice proceedings,and that leading questions should be avoideddue to the suggestibility of young people withFASD and their eagerness to please. JudgeO’Driscoll continued to discuss the issue ofFASD in 2011, in an article highlighting howspecific parts of New Zealand legislationmight be applied to help offenders with sus-pected FASD (O’Driscoll, 2011). In theDecember 2015 issue of Court in the Act,Judge Tony Fizgerald (Fitzgerald, 2015) reit-erated the significance of neurodisabilities in

general, and FASD in particular, in the youthjustice context. Judge Fitzgerald highlightedthe needs of young offenders with FASD andother neurodisabilities, and emphasised theimportance of providing different treatmentsto offenders with neurodisabilities, as com-pared to their neurologically-typical counter-parts (Fitzgerald 2015).

Other organisations and people have beeninstrumental in encouraging an increase inawareness of FASD in the justice system.One such organisation is JustSpeak, a non-partisan network of young people aiming toraise awareness of issues across the criminaljustice system in New Zealand (http://www.justspeak.org.nz ). In its 2012 submission onthe Youth Crime Action Plan, JustSpeakurged for ‘universal screening’ for FASD inthe Youth Court (JustSpeak, 2012). In 2013,the organisation published an article on thelinks between FASD and offending on itswebsite, further raising awareness of theissue. More recently, in 2016, JustSpeak hasbeen highly vocal in its support of extendingthe jurisdiction of the Youth Court to include17-year-olds (Kenner & Bruce, 2016). This isa pertinent issue for all advocates for individ-uals affected by FASD due to the implica-tions of involving a young person with achronological age of 17 but the developmen-tal age of a much younger child in the justicesystem (Malbin, 2011; Streissguth & Kanter,1997). Dr Ian Lambie, of the University ofAuckland, has also been vocal regarding theissue of including 17-year-olds in the youthjustice system (Lambie, Ioane, & Best,2014). Lambie has a background in clinicalpsychology, as well as tertiary education, andis a member of the Youth Justice IndependentAdvisory Group. Lambie et al. (2014) explorethe extension of the age of youth cominginto the Youth Court’s jurisdiction – and atthe time of writing, the Government ofNew Zealand has just announced that itplans to raise the age of youth justice to18 years (Kirk, 2016).

Lambie, Best, Ioane, Becroft, and Pola-schek (2016) have also recently published an


article regarding the use of s333 reports in theYouth Court (part of the Children, YoungPersons and Their Families Act 1989). Thisprovision gives the judge scope to order amedical, psychiatric or psychological reportto be made available to the court (s333).Lambie et al. (2016) focus on the overrepre-sentation of neurological disorders in theyouth justice system, including the likelyprevalence of FASD. They make several rec-ommendations regarding how best to utilisethis provision, including making reportsavailable at the earliest point of engagementwith the justice system, and suggesting thatperhaps judges are not the professionals bestplaced to make a discretionary judgement asto whether or not a report should be requested(Lambie et al., 2016).

One of the most significant developmentsin the area of FASD and the justice system inNew Zealand is the seminal case of Pora vQueen (2015). Teina Pora was charged withthe rape and murder of Susan Burdett in1994, and convicted (Freckelton, 2016). Atthe time of the alleged offending, Pora was17 years old. His conviction was largelybased on a series of incriminating statementsthat he made to police officers investigatingthe crime, as a result of being interviewedseveral times in the space of a few days. Hav-ing served 21 years in prison, Pora’s case wasappealed to the United Kingdom Privy Coun-cil in 2014, with a judgement given in early2015. The Privy Council quashed Pora’s con-victions on the basis of evidence given byneuropsychologist Dr Valerie McGinn andpsychiatrist Dr Craig Immelman. The com-bined evidence of these two professionalsestablished that Pora suffered from FASD,and the Privy Council held that in light of thisevidence, his ‘confessions’ could not be con-sidered reliable. Without Pora’s confessionsbeing deemed reliable, there was very littleevidence on which to uphold his conviction,and he was subsequently acquitted, and laterawarded compensation (Pora v Queen, 2015).

The work of several key justice professio-nals has been instrumental in raising

awareness of FASD and its likely prevalencein New Zealand’s justice system. However,there is a significant amount of work yet to bedone in order to ensure that individuals withFASD who come into contact with the justicesystem are adequately represented at allstages of the process, fully able to understandtheir legal rights, and have adequate pro-grammes and services available to them toaid in rehabilitation and reintegration. Thecase of Pora v Queen (2015) has paved theway for the lower courts of New Zealand totake FASD into account and to ensure thatneurodisabilities are adequately considered.The work of Dr Nessa Lynch at Victoria Uni-versity, Wellington has also been valuable inbringing awareness to the issue of neurodis-abilities and justice through the publicationof a report detailing how vulnerability inter-sects with youth justice in New Zealand(Lynch, 2016).

Cultural and Race Developments

FASD occurs in every society in which alco-hol is readily available and consumedheavily. However, internationally, a patternof research into FASD has developed inwhich ‘at-risk’ populations have been tar-geted, resulting in potentially biased preva-lence results (Ontario Federation of IndianFriendships [OFIFC], 2013). The indigenouspopulations of Canada and Australia andhave been found to incur a higher incidenceof FASD than the non-indigenous popula-tions; however, some academic commentarysuggests that this is less a result of culture orrace, and more a result of structural discrimi-nation and research bias (Pacey, 2009).

Several studies have emerged in bothCanada and Australia in the last five yearssuggesting that the focus on prevalence stud-ies of FASD in indigenous populations maybe misguided (Hayes, D’Antoine, & Carter,2014; OFIFC, 2013; Pacey, 2009; Tait,2003). In 2003, a Canadian study examiningthe links between FASD and residentialschools acknowledged that issues of alcohol


abuse ‘should be understood as a problem ofcertain individuals and sub-populations,rather than a problem of all Aboriginal peo-ple’ (Tait, 2003, p. xv). The study goes on toemphasise that the difficulty in targetingAboriginal communities to study because ofalcohol abuse issues means that comparisonwith other populations becomes ‘difficult, ifnot impossible’ (p. xx).

In 2009, Michael Pacey – with theNational Collaborating Centre for AboriginalHealth in Canada – published a review of theprevalence of FASD (Pacey, 2009). Focusingon previous studies of the epidemiology ofFASD, he notes that epidemiology is ‘notwell-equipped to provide explanations thatincorporate historical precedent or unmeasur-able dimensions of socioeconomic status’(Pacey, 2009, p. i). This point brings to lightthe possibility that at-risk populations arepossibly more likely to evolve from a historyof discrimination and oppression, or fromwithin a wider context of social deprivation,than from accepted cultural norms.

In 2013, the Ontario Federation of IndianFriendships (OFIFC) reiterated the abovepoint, stating that FASD is ‘rife with mis-conceptions’, including that it is ‘a product ofmodern Aboriginal culture’ (OFIFC, 2013,p. 3). The 2013 paper identified that childrenwith FASD are overrepresented in state care,and that this corresponds with an overrepre-sentation of Aboriginal children in state care(OFIFC, 2013). However, the paper empha-sises that the overrepresentation of Aborigi-nal children in state care is also the result of‘colonial issues of deprivation’ rather than anissue of culture or race (OFIFC, 2013, p. 16).

These studies have relevance in the NewZealand context due to a similar history ofcolonisation and an indigenous populationthat has suffered decisions being made forthem rather than by them (Ministerial Advi-sory Committee for the Department of SocialWelfare, 1988). The majority of childrentaken into state care in New Zealand areMaori, despite Maori comprising less than15% of the general population of New

Zealand (Office of the Children’s Commis-sioner, 2016). Similarly, it is estimated thatFASD affects upwards of 50% of the childrenin state care in New Zealand, reflecting a sim-ilar landscape to that found in Canada (Bux-ton, 2004; FASD Working Group, 2016a).

In 2009, Keriata Stuart published a thesison Maori women drinking alcohol duringpregnancy(Stuart, 2009). Stuart acknowl-edges that Maori society was one of the fewthat did not discover the process of alcoholproduction before colonisation, and thus hadno culturally-developed methods of regulat-ing or managing its consumption. As a result,the introduction of alcohol to Maori was‘integrally related to colonisation’ (Stuart,2009, p. 30). Stuart notes that Maori womendrink less often than their European counter-parts, but are more likely to drink at danger-ous levels when they do. Stuart explicitlyacknowledges that the ‘longest establishedcontributing factor for FASD is socio-eco-nomic status and social deprivation’ and thatrace is not an independent risk factor (p. 41).

Stuart’s (2009) thesis reflects the interna-tional sentiment discussed in the precedingparagraphs that there is perhaps a tendency tofocus on the ethnicity of perceived at-riskpopulations, rather than determining andfocusing on the root cause of overrepresenta-tion. An example of this potential bias isdemonstrated in an Australian study whichfound that Aboriginal women were over10 times more likely to be given an alcohol-related diagnosis (Hayes et al., 2014). In theNew Zealand context, structural discrimina-tion and bias can be seen coming through inthe justice system, where in 2007 youngMaori were six times more likely to be appre-hended than their non-Maori counterparts(Workman, 2011).

This section highlights the importance ofestablishing the root cause for an overrepre-sentation of FASD in a particular population,rather than hastily drawing conclusions basedon race or culture. However, while the Maoriin New Zealand are likely to be overrepre-sented in the FASD prevalence rates due to


the connection with social deprivation, it iscrucial to establish culturally-sensitive strate-gies for reducing the incidence of FASD.Currently, general diagnostic services forFASD are extremely limited in New Zealand,and this will need to be addressed in order fora culturally-competent workforce of diagnos-ticians to be established (OFIFC, 2013).

Current Developments and Future Hopes

The story of putting FASD on the map inNew Zealand has been one of determination,hope and opportunity, and it has reached animportant stage of acknowledgement at thistime, strengthened by the advent of the provi-sion of robust services to help families inneed. The last 20 years have seen hugeawareness-raising efforts on the part of a mul-titude of amazing professional champions andindividual caregivers and families. The pointwhere a positive difference is made for everyfamily affected by FASD is still a long wayoff – but for some, the arrival of diagnosticservices and the recognition of FASD as adisability in the action plan represents greatgains. The next few years will see the imple-mentation of the action plan, and this last sec-tion briefly focuses on current developmentsand future prospects.

The three-year FASD action plan includesaction for the prevention of FASD, as well asearly identification, support and evidence gath-ering (FASD Working Group, 2016a). A newappointment to oversee these priorities beganin March 2017. Research activities that havealready started include: a prevalence studyusing a well-known longitudinal study that isalready underway in New Zealand; a stocktakeof clinical competencies for assessing, diag-nosing and managing FASD; and a generalstocktake and gap analysis of FASD interven-tions, services and supports. With onlyNZ$12 million allocated directly to the plan,all the new initiatives will need to seek alter-native sources of funding. At the local level,Dunedin is pooling resources (skill sharing inparticular) from across agencies and

incorporating family member input, as well asbenefiting from individual donations of signifi-cant amounts of money. This will lead to thelaunch of an NGO and private-practice-ledFASD assessment and diagnostic service. InNelson, professionals and families have beenactive since 2015, and the District HealthBoard is supportive of further development ofassessment and diagnosis services. Currently,15 diagnostic teams (all North Island) havebeen trained to undertake FASD assessments,and although only seven of these are actuallyundertaking assessments, it is hoped that thisnumber will rise. In Hawkes Bay, where awell-established diagnostic team alreadyexists, work is focused on providing post-assessment intervention services, and theFASD Centre Aotearoa, is also making this apriority, as there are now several hundred indi-viduals who have been diagnosed with FASD,and they all need ongoing support. AlcoholHealthwatch, with the support of the HealthPromotion Agency and members of the FASDCentre Aoteaora, will continue to offer train-ing and awareness-raising workshops, as willcountless others in different locations through-out New Zealand. The Ministry of Health – inlaunching its action plan – is quite clear that itshould be action focused, so that in 2019 itwill be possible to clearly define what hasbeen achieved, which in turn will accuratelyinform where future focus and prioritisation isbest placed. It is also hoped that support willalso be given to teachers as a consequence ofthe launch of the Inclusive Teachingwebsite (http://inclusive.tki.org.nz/). In order forchildren with an FASD to be fully included ineducation, teachers need to be trained and giventhe space to increase their knowledge and skills.The focus for professionals across all sectorswill be to consolidate a shared understanding ofFASD, and to work cooperatively using existingstrengths. By working with families, taking acase-coordinated approach and adopting a key-worker model (Bagley, 2013), more tailored-made interventions can be provided.

Finally, when thinking about the future ofFASD in New Zealand, efforts need to be


focused on a child-centred approach whichdraws on the rights-oriented frameworks ofconventions like the United Nations Conven-tion on the Rights of the Child and the UnitedNations Convention on the Rights of Personswith Disabilities (Convention on the Rightsof the Child, 1989; Convention on the Rightsof Persons with Disabilities, 2008). No childwith an FASD chose to be born with perma-nent brain damage and lifelong impairments.It is totally unacceptable therefore to blameor stigmatise these individuals when their dis-ability impacts upon their ability to relate toothers and fully participate in all aspects ofNew Zealand society. FASD has been firmlyput on the map in New Zealand, but the chil-dren need to be put at the centre of how allthe facets of the impacts of FASD areaddressed. Help needs to be provided to indi-viduals in the creation of specialist FASDprevention, diagnostic and intervention serv-ices, and children and young people with thisdisability need to be accommodated withinall sectors, including education, medical, jus-tice and welfare. A well-trained professionalworkforce who ‘get’ FASD is needed,whereas currently so few professionals arewell versed in a brain-based way of working(Malbin, 2011). And the intergenerationalimpact of colonisation upon Maori wh~anauand how this links to the impact of FASDwithin Maori communities needs to beacknowledged. The pioneers of FASD havecome a long way, but there is still a long wayto go.

Acknowledgments

The authors would like to thank the following peo-ple for helpful comments on earlier drafts of thisreview - Christine Rogan, Valerie McGinn,Andrew Becroft and Claire Gyde.

Disclosure Statement

No potential conflict of interest was reported bythe authors.

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