Forsaken

New Zealand’s shameful mismanagement of FASD

By Paula Penfold and Louisa Cleave
Mar 6, 2022

Disordered investigates the epidemic of FASD in New Zealand. Watch the documentary or view the full project. Made with the support of NZ On Air.

In 1993 in Northland a little girl, Hannah*, was born full term and a healthy weight on the floor after a party. She cried on delivery and fed straight away. 

Her mother, Mere*, took her to hospital and from there to another party. 

The pregnancy had not been planned; Mere didn’t know who the father was. When she found out she was pregnant at three months, Mere didn’t stop or cut down her drinking. She was an alcoholic who “everyday popped the bottle...drinking anything to make me drunk”.

Mere continued to be drunk throughout Hannah’s childhood and, while she took her everywhere she went, looking back, Mere knows she would not have been fully available to protect Hannah from harm.

“There were lots of men in the house: gangs, violence, drugs.” 

Hannah’s first word, says Mere, was bitch

Hannah was a crabby baby who was “disturbed” from birth, who couldn’t sit still or focus at school so consequently didn’t go much.

“She was always angry … at anything.” 

With Mere in and out of prison for drug offences, at 9 years old Hannah was taken into state care. At 14, she went to live with her older brother, and her induction into the gang world and her own criminality began. 

At 21 she went to prison for the first time, and by 25 she was back in court on serious charges: kidnap, aggravated robbery, supply of methamphetamine. 

Notes from a prison meeting with her lawyer, Jo Wickliffe, record Hannah being “a bit all over the place – skipping from subject to subject. Hard to engage with her on any topic for long”.

Wickliffe referred her client to neuropsychologist Dr Valerie McGinn, a world-leading authority on Fetal Alcohol Spectrum Disorder (FASD) for assessment. 

McGinn had spent much of her career working in traumatic brain injury, but in 2008, seeing children with severe brain damage that couldn’t be accounted for by a specific traumatic event, she began to learn about FASD, training in Canada and the United States. 

Clinicians such as McGinn strictly follow internationally developed guidelines for FASD diagnosis, because there is no New Zealand-designed protocol. 

The assessment takes place over a series of meetings, using multiple tests designed to measure 10 domains of brain function, including cognition, language, motor skills, attention, and memory. Can they problem-solve? How do they make decisions?

The first of those meetings with Hannah took place while she was on remand at Auckland Region Women’s Corrections Facility, and she was “pretty stroppy”. 

“Things hadn’t been going well for her in prison and she got easily stressed.” 

It could be something as simple as the clothes she had to wear. 

“The orange jumpsuit that they put them in, and they tape the top so tight,” says McGinn. “And when you’ve got FASD, you can’t tolerate sensory things as well.

“So it was, ‘who’s this person coming to see me? Why am I taped up like this?’ She was pretty agitated.”

Hannah’s results identified problems in seven of the 10 brain functions tested.

The next step in diagnosis is to confirm prenatal alcohol exposure. But how do you begin that conversation? 

“The interview with the mother is not an accusing kind of interview,” says McGinn. “It’s, well, ‘this is what I noticed about your daughter. Have you noticed that throughout her life? Is that how you see it?’”

Mere’s response was the same as it is for most of the mothers McGinn meets: she didn’t realise she was causing harm to her unborn child, that the alcohol she was drinking passed undiluted into the blood supply of her baby. 

“That never crossed her mind. And it's only now that I've confronted her with it and talked about it and explained what FASD is that she goes, ‘yes, you’re exactly right. That’s exactly what’s wrong’. And that takes a lot of courage.”

McGinn took her results back to prison to explain to Hannah there was a reason she’d had such a difficult life, that she was so easily stressed, easily led. She had a disability. 

The lengthy written assessment notes that even taking into account all the other adversities Hannah had suffered as a child – “which would have further compromised her development” – she well exceeded the criteria for diagnosis of FASD. 

“And she’d never been diagnosed. She was definitely a disabled woman in prison.”

Hannah gave permission for Stuff Circuit to tell her story, telling us through her lawyer that there were so many other women like her in prison who should also be assessed.

We were looking forward to meeting Hannah when she was released on parole last October to a rehab centre. But it was in the middle of Covid lockdown and we weren’t permitted to visit.

Within two weeks she was back in prison again.

We never did get to meet her.

“We treat alcohol in New Zealand like it’s an additional food group.”
Sarah Goldsbury (Ngāti Porou, Te-Aitanga-a-Hauiti)

To those who work in the field of FASD Hannah’s start to life is not shocking. 

And during the filming of our documentary, Disordered, we heard many more stories like hers. 

Jody, whose mother drank and sniffed metal polish while carrying him. 

Ana, who told us how she drank and did “all the substances” during her 13 pregnancies. “It was a painkiller for me… to pretend I was happy.” (Six of those pregnancies ended in miscarriage or stillbirth. The seven who survived have all been in state care. Ana says none have been diagnosed with FASD.) 

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Then there’s the case of Thomas Morrison, whose mother looked down the barrel of the camera and told us she drank two bottles of vodka – at least – a day, while pregnant with him. 

“We drink a lot more alcohol than the rest of the world,” says Sarah Goldsbury (Ngāti Porou, Te-Aitanga-a-Hauiti). “We treat alcohol in New Zealand like it’s an additional food group.”

Goldsbury is a kaimātai hinengaro, a clinical neuropsychologist like McGinn, currently working towards her own PhD researching Māori whānau experiences of FASD assessment. 

“Alcohol has become normalised over generations, and we are so distracted by the positives in our relationship with alcohol that we don’t realise the harm it is also doing to so many.”

In the course of her work Goldsbury constantly encounters people who say their mother, auntie, cousin, whoever, drank during pregnancy and the baby was fine. 

“Some of their babies will be fine,” she says, “but others have problems that have not been recognised as being caused by the alcohol in pregnancy.” 

This continues to perpetuate the myth that alcohol is not damaging to an unborn baby. “Alcohol can and does cause permanent lifelong brain damage to many unborn babies, but we don’t have the ability to predict whose babies will be the lucky ones and be okay.” 

Some who should know better also perpetuate the myth. While the Ministry of Health guidelines say there is no known safe level of alcohol consumption during pregnancy, Goldsbury says some medical professionals “will still say ‘it’s okay to have a glass, it’s okay to have half a glass’”. 

That advice is wrong, she says, because it doesn’t take into account factors such as genetics: she cites research showing genes play a role in how much damage alcohol will cause. But work to explain that genetic influence is still needed. 

“So there's a really good chance that half a glass in pregnancy isn't going to cause permanent, lifelong brain damage. But we don't know which of us is carrying that child where half a glass is harmful. 

“Generally, the rule is the more alcohol, the higher the risk of harm. But as little as two glasses of wine on two occasions any time in the pregnancy is enough to cause FASD.

“Those with damage caused by the smaller amounts don’t get the attention that the children of alcoholics do,” Goldsbury adds. “Which also leads to an assumption that this is not a problem for everyday New Zealanders. It is. It is a problem for all of us.” 

Factor in New Zealand’s notorious binge-drinking culture and the fact that more than 50 per cent of pregnancies here are unplanned, and the picture is grim. 

Goldsbury’s son is in the room when she tells us how she avoided being part of that picture, fortunate to find out she was pregnant very early on: the day before her hen’s party, three weeks before her wedding. 

“So by the time I got back from the honeymoon, I would have been nine or 10 weeks. That’s actually when a lot of people find out they’re pregnant, particularly with an unplanned pregnancy.” 

She pauses to look across at her son. 

“I’m not sure exactly why I spend so much time fighting this fight. It’s partly because I’ve always had a strong sense of social justice and I can just see something that's horrifying and it’s happening right under our noses. 

“But at the same time, I'm grateful I had a healthy baby boy who’s growing up into a healthy and happy teenager. And I came so close to that being very, very different. That was a stage of my life where I was drinking quite a lot of alcohol socially.”

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The term Fetal Alcohol Syndrome (FAS) – the American spelling has been adopted internationally for consistency – was first used in 1973 by two Seattle physicians who called it a ‘tragic disorder’. It took until the mid-1990s for New Zealand to begin to acknowledge what’s now known as FASD. 

It is a lifelong neurodisability with a mortality rate 4.3 times higher than the general population; an average life expectancy of 34 years, with premature deaths often due to recklessness or impulsivity. 

“They need to be protected from their own impaired decision-making,” says Valerie McGinn.

While it’s known that children with FASD will fare better if they are diagnosed before the age of 6, in New Zealand the majority never will be. 

Instead, they are frequently – wrongly – thought to simply have behavioural problems, and if there is any kind of intervention it will usually be behaviour-based therapy. 

“So there’s a lot of talk about shaping behaviour,” says Sarah Goldsbury, “and use of reward charts to encourage positive behaviour, or consequences for bad behaviour. But when a child has underlying brain damage, the normal behavioural principles don’t apply.”

When they’re used anyway, the child will likely become negative and defiant, often leading to their being excluded from school, even at a very young age. 

If they are lucky enough to be referred for assessment and get a diagnosis of FASD, even then they’re unlikely to get help: bewilderingly, Ministry of Health policy explicitly excludes people with FASD from accessing Disability Support Services (DSS), unless they are also assessed as having an IQ below 70.

“The major care facilityfor adults withFASD in New Zealand is prison.”
Dr Valerie McGinn

Dr McGinn says IQ is entirely the wrong measure, because only a small percentage (23 per cent at her clinic) of people with FASD have an IQ low enough that would qualify them for DSS.

But they’re all in need of help. ‘Spectrum’ does not put people on a scale from mild to severe FASD: in order to be diagnosed, they must have severe impairment in at least three brain domains. In other words, everyone with FASD has severe brain damage. 

“There are thousands of disabled individuals with FASD left to fend for themselves in Aotearoa,” she writes in a brief of evidence to a forthcoming Waitangi Tribunal hearing. 

“Specifically excluding them from the disability support they need negates their very existence, and causes immeasurable harm…” 

McGinn is well-qualified to make that assertion, estimating she’s assessed about 500 people for FASD, about 200 of those within the criminal justice system. 

“Sadly, many young people that I’ve known when they were younger, I am now visiting in prison,” says McGinn, “because they have offended and not had their disability needs catered to”.

If they were stressed and disadvantaged at school, entering the justice system with an undiagnosed brain impairment must be daunting. 

“Many, if not most, have language impairments. Courts are a language-rich environment. They pretty much all have impairments of judgement and reasoning. And some of them confabulate, which is to make up things that are not true,” says McGinn.

“So you put them in a police interview room with a couple of sophisticated questioners and they might even tell you something which might not relate to the facts at all, but they can’t evaluate that.”

With a current prison population of about 8000, that would mean there are at least 2000 people with Fetal Alcohol Spectrum Disorder in our jails.

New Zealand’s most recognised such case is that of Teina Pora. McGinn’s diagnosis of Pora’s FASD was the key piece of evidence that led to the Privy Council quashing his convictions for rape and murder in 2015, after he’d been wrongfully imprisoned for 21 years.

She has no doubt there are many, many more like him.

“They’re responding in a way that they think will give the person what they want to hear so that they can get themselves out of that stressful situation, without realising that can be used in court and can be used against them.”

Asked whether her reports are welcomed in court, McGinn stifles a laugh. 

“Um, they’re often not welcomed. I would say they’re pretty much always welcomed by the judge, because that’s the whole point of a report, is to inform the court so they can make a decision.

“But we often don’t have prosecutors in New Zealand who are FASD-trained and aware. So there can be this misconception that a disability is used as some sort of excuse.”

To get a lighter sentence? 

“Yes, or to excuse bad behaviour. And it’s not really an excuse, it’s just a reason. There’s a reason why people with FASD behave differently. And the reason is that they have brain damage. It’s just not well recognised in New Zealand.”

Thomas Morrison, whose story is told in Stuff Circuit’s documentary Disordered, exemplifies that path, his adult life an endless cycle of offending, prison, release, reoffending, prison again. 

In her neuropsychological assessment of Morrison, Dr McGinn writes, “The major care facility for adults with FASD in New Zealand is prison.” 

It sounds harsh, and certainly Health Minister Andrew Little takes offence when we put the line to him in an interview. 

“It is not a guarantee that because you have FASD therefore you are a criminal,” he said. “So let’s please not stigmatise people with FASD”.

Nobody, least of all McGinn, wishes to do that. But her summation is hard to argue with for two reasons. 

First, there is no actual care facility for adults with FASD.

Second, look at the numbers. Well, more accurately, have a guess at the numbers, since they’ve never been measured here – the best we can do is extrapolate from overseas research of prison populations. Studies in Canada and the US suggest between 17 and 25 per cent of prisoners have FASD.

In the context of New Zealand’s comparatively worse drinking culture, McGinn places our numbers at the top of that range. With a current prison population of about 8000, that would mean there are at least 2000 people with Fetal Alcohol Spectrum Disorder in our jails. 

“And they’re nearly all undiagnosed, and they are all mixed in with the general population of prisoners,” she says. 

“It’s completely inequitable to think that we have a group of disabled people in New Zealand who, through no fault of their own, have got brain damage that means they can’t manage life and behave responsibly without support. 

“And instead of supporting them, we leave them to their own devices, and then punish them for doing the wrong thing.”

Imprisonment doesn’t fix it, either, she says, because punitive measures don’t work, given it’s not a behavioural issue. 

Which is why usually when someone with FASD is released from prison nothing changes; they carry on with their lives the way they did before, and end up back in prison, time and time again. 

When Stuff Circuit met Jody for Disordered, he’d recently been released after his 17th prison term.

How, then, is Corrections handling a responsibility it didn’t ask for? 

In 2018 the department was ‘’keen’’ to undertake a prevalence study at Auckland Prison to find out how many inmates had FASD.

But the study never happened.

Corrections acknowledged to Stuff Circuit that it needs to do more work on FASD and said it was “exploring how we can better understand it and its prevalence in a Corrections setting”. 

One strategy it’s looking at is a programme called Alert, designed by occupational therapists in the US as a way of teaching people “the importance of self-regulation”. 

Alert was earmarked for a pilot at Rimutaka Prison in March 2021, but the pilot didn’t go ahead because, according to internal documents, it “might not align with [the] kaupapa Māori base strategy”.

That appears to be just a setback, because Corrections told Stuff Circuit it still intends to “progress the work”.

Which alarms neuropsychologist Sarah Goldsbury, who says the Alert programme is not fit for purpose in New Zealand prisons – and she’s told officials so: that teaching Alert to a group of people who may or may not have FASD, while expecting those with undiagnosed brain damage to remember it later and self-manage when stressed, is the opposite of what works for FASD.

Nor does its language seem appropriate for the target audience. Goldsbury cites an analogy the programme uses of a person’s body being like a car engine. 

“How’s that going to go? Sitting in a youth justice residence or a prison, talking to young adults and men about how their engine is running? It just doesn’t make sense to me.” 

But primarily, for Goldsbury, Corrections is missing an opportunity to take a Māori-led approach, which she argues is crucial given the disproportionate numbers of Māori in prisons and Māori with FASD. 

“We have fantastic Māori health models, emotion regulation models, behavioural modification models that are far more appropriate for Māori than the Alert programme.”

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What’s the price of all that prosecution and imprisonment, not to mention poor educational outcomes, mental health and substance abuse issues, benefit dependence and premature mortality?

The Ministry of Health estimates the annual cost to the government of FASD is at least $450 million, with up to a further $200 million per year in lost productivity. 

The truth is the numbers are probably much worse than that, but we can’t say for sure: nobody actually knows how many people in New Zealand have FASD – because nobody has ever counted. 

Not that we haven’t had the opportunity. In 2013 the World Health Organisation invited New Zealand to be part of an international prevalence study, but the government of the day declined. 

Instead, in 2016, the Ministry of Health opted for a home-grown approach, working with Auckland University and the Growing Up in NZ (GUiNZ) study, “to develop and use a set of psychometric indicators to identify children aged 8 with developmental or learning difficulties, and offer a clinical assessment to confirm or rule out FASD as a likely cause of their difficulties”. 

The ministry pinned its hopes on the study to help understand the numbers, telling ministers New Zealand data would help guide policy and “support a reduction of FASD prevalence over time”.

But the study was plagued with problems, spelled out in a 2018 briefing to Ministers, including poor uptake from parents and difficulties with ethics approval. 

By 2021, the Ministry admitted to Stuff Circuit that “the approach proved not feasible for identifying children with FASD”.

Yet it’s pressing on with the next phase regardless, commissioning examination of the GUiNZ cohort data to compare neurocognitive outcomes for children “likely to have” been exposed to alcohol with children who weren’t. 

But that won’t involve face-to-face assessment by clinicians, or individualised diagnosis. 

And by the time the data examination is completed we’ll still be none the wiser as to how many people in New Zealand have FASD. 

“There is some interesting data there,” says Sarah Goldsbury. “But that data was never going to give FASD prevalence. The study wasn't set up in the first place to be measuring FASD, the protocols weren't there. The right questions weren’t asked in the beginning.” 

Which is failure, says Raawiri Ratuu, who is leading a claim to the Waitangi Tribunal on the legislative failings of the Sale and Supply of Alcohol Act. 

He argues that without New Zealand-specific numbers, “the Crown cannot reasonably discharge its duty to look after our people – all people – who are living with the effects of FASD”. 

“There’s no way in hell that the Crown really wants those numbers to come out because it’s just going to show what we’ve been saying for a long, long time. You couldn’t care less. You’ve been complicit.” 

In the absence of a proper prevalence study, again, all we can do is extrapolate from overseas data, which suggests 3 per cent of births are affected by FASD. Valerie McGinn puts it higher than that – 5 per cent – in the context of our drinking culture. 

And some health professionals paint an even more alarming picture: a Ministry of Health document released to Stuff Circuit under the Official Information Act includes a claim that paediatricians in Northland estimate 25 per cent of the population there has FASD. 

Others who work in the field think that is an over-estimate but the mention of the figure in official documentation shows the level of concern among those at the coalface that New Zealand has a monumental problem on its hands.

Because whichever way you slice it, thousands of babies are born every year with FASD, and they’ll have it till the day they die.

The previous government came up with a blueprint for addressing our handling of FASD.

In August 2016 it launched an action plan, a three-year cross-agency strategy setting out a “high-level vision of what we want to achieve, and how we can achieve that vision at a practical level”.

There was to be a full review of the plan at the end of the three years.

But that review never happened. 

So what do we know of what that much-vaunted three-year strategy achieved? 

Well, it depends who’s telling the story.

A Ministry of Health briefing sent to the Prime Minister in early 2021 said ‘’broad progress’’ had been made, ‘’particularly in the prevention and early identification priority areas’’.

The plan had led to milestones such as updated pregnancy and alcohol guidelines, pilots of the Alert programme in two primary schools, a stocktake of services around the country, and an online FASD training module for frontline workers.

Officials also highlighted mandatory labelling on alcohol products as a win for the plan. 

(It’s not exactly a clear-cut victory, however. Yes, the labels were finally announced in 2020 after a decade of efforts – and opposition by industry which strongly objected to the proposed wording that ‘’any amount of alcohol can harm your baby”. In the end, that was watered down to ‘’alcohol can cause lifelong harm to your baby’’. And the industry has until 2023 to comply). 

Ask people living with FASD and their families and you will hear a very different version of events than the one officials tell. 

A hui to discuss the action plan heard progress was perceived to be “extremely poor”, leaving “many areas unaddressed and requiring urgent action”.

The confronting issue, of course, given the enormity of the problem, is money.

In 2020 the government announced it would invest $7.6 million over three years to implement parts of the action plan, paid for out of the Proceeds of Crime fund — from seized illegally obtained assets and cash. 

The first problem with that, for Disability Rights Commissioner Paula Tesoriero, is that it’s a contestable fund. “That is not the way to provide a long-standing, long term funding stream to deal with FASD in New Zealand.” 

And there’s another more fundamental problem, says Sarah Goldsbury: it’s racist. 

“You don’t even have to read between the lines to realise that the Proceeds of Crime funding is systemic racism. It’s right there in your face.

“This disability way disproportionately affects Māori, so this blatantly links Māori health with crime. And it’s offensive. It makes me so angry that a disability is being funded from the proceeds of crime.” 

Minister Andrew Little bristles at the accusation, pointing to the fact that “for a lot of people who are tied up in our criminal justice system, an underlying factor to their offending is FASD”.

“So I don’t think there’s anything inappropriate about using those funds to take an issue that, if we get it right, means we can prevent those who might otherwise find themselves on a criminal justice path getting off that path, getting the help they need so they can live a more satisfying life.” 

He bristles too at Tesoriero’s suggestion that if even a fraction of the $1.2 billion collected each year in alcohol excise duties was used to support people with FASD, “we would go a long way to enabling them to live a good life”. 

“Let’s not make artificial comparisons,” says Little. 

“Yes, FASD is a very serious matter. The impact of alcohol in the community is a very serious matter. The calculations of the health impacts of alcohol in our community go way beyond what we collect in excise duties on alcohol. So I’m not sure that is a helpful analysis to take.” 

He’s not in denial, though. Little goes on to make a series of frank admissions, acknowledging that even with the action plan, New Zealand has a long way to go in dealing with FASD. 

“We do accept the seriousness of FASD, accept that even with the action plan, we’re nowhere near there yet.

“We need to do more.” 

"There will be children born with FASDin Gisborne because thatalcohol store was allowed to come to town.”
Sarah Goldsbury (Ngāti Porou, Te-Aitanga-a-Hauiti)

The “glacial” progress is infuriating to those who work in the FASD field who point out that while the term might not have been used until the 1970s, Māori had identified the problem a full century before. 

In 1874, Haimona te Aotearangi and 167 others petitioned the House of Representatives about “this evil thing, grog, which is destroying us,” observing “our babies are not born healthy because the parents drink to excess and the child suffers”.
“It breaks my heart every time I read it,” says Sarah Goldsbury. “They’re so politely begging for help.”

You can see why it would be heartbreaking, when, while Māori make up 16 per cent of the population, a study of one assessment centre showed 80 per cent of children presenting there were Māori. It’s estimated that half the children who go into Oranga Tamariki care have FASD, mostly undiagnosed and untreated. Sixty per cent of tamariki in state care are Māori, and Dr Valerie McGinn says many have parents who have undiagnosed FASD themselves: it’s intergenerational.

Everywhere you look internationally, indigenous populations who have been colonised are overrepresented with FASD.

“And this links back to the fact that alcohol was used as a tool of colonisation,” Goldsbury says. “The two biggest weapons in colonisation were guns and alcohol.”

Bear in mind that prior to the arrival of European settlers, Māori were one of few indigenous societies that did not use alcohol.

“And that left us wide open. We didn’t have any guidance within the structure of our society for how to cope. We had no tikanga, no kawa. And we had no idea the damage it could do.” 

In 2010, the Law Commission produced a report aimed at curbing the harm alcohol was causing to New Zealanders.

Its recommendations, “clearly [told] the government what we need to do to reduce alcohol harms in our communities,” says Goldsbury, and that included limiting the number of stores selling cheap alcohol. 

“And as usual, it’s been ignored,” she says.

In 2018 Goldsbury was part of an effort to prevent the opening of a Black Bull Liquor store in her city, Gisborne. 

Its license application wasn’t approved. “We were absolutely stoked, as a community. We had a voice, we were listened to.” 

But Black Bull appealed to the Alcohol Licensing and Regulatory Authority, and won. 

“I feel upset and angry every time I drive past it,” says Goldsbury.

“It’s an out-of-town business making money off our babies’ brains. They’re making money off our community vulnerability. There will be children born with FASD in Gisborne because that alcohol store was allowed to come to town.”

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Down the road, in Hawke’s Bay, a specialist team is diagnosing 30 to 40 children a year with FASD. The numbers could be higher but there isn’t the capacity to deliver the service to more people.

“It’s not an FASD diagnostic service as some parents would like, because that’s not how kids present,” explains paediatrician and former Children’s Commissioner Dr Russell Wills.

He’s part of a multidisciplinary team working on the Developmental Assessment Programme to diagnose tamariki with complex developmental and behavioural issues.

His colleague, paediatrician Dr Kate Robertshaw travelled to Canada and the United States to learn about formal assessment for FASD in 2010, and since then has led the programme to ‘’something that is absolutely world class’’, says Wills. “It really is quite unique in New Zealand.” 

The team assesses children for a variety of neurodevelopmental issues.

“Children don’t present with a diagnosis, they present as throwing chairs and tables and not learning, and people tearing their hair out. Some have autism, some have intellectual disability, some have attachment and trauma issues from parental violence and mental illness and addictions. Some have FASD, some have some combination of several of those. The team’s job is to figure out what’s been going on for a child and what’s most likely to help.”

They work closely with schools in low decile suburbs and with Oranga Tamariki.

“All services like this have a waiting list because the demand is high,” says Wills. “If 3 per cent of deliveries are alcohol-affected then about 60 babies [with FASD] a year are born in Hawke's Bay. We have the capacity to see half that, so those we see tend to be the most severely affected.”

Since the programme began, the number of referrals for tamariki Māori has increased and the age of diagnosis is younger; statistics welcomed by the team because they know their work will make a difference to those lives.

“There’s no question that early diagnosis and early intervention in neurodisability changes lives. Children are much more likely to complete school, leave with qualifications, have the mental tools to cope with stress, understand their condition, to self-manage, and less likely to leave school without qualifications and be welfare dependent and involved in the criminal justice system.”

An evaluation found the Hawke’s Bay model could be a blueprint for FASD assessment nationwide but required specialist training. It also found there wasn’t enough support available for children after they’d been assessed as having FASD.

Which is what we keep hearing, everywhere we go, from everyone we speak to.

There certainly wasn’t enough support for long-term, small-time offender Thomas Morrison.

In 2019, Dr Valerie McGinn recommended to the court that Morrison be referred for an assessment for disability support services. 

That assessment never happened. 

In 2021, with Morrison about to be released from prison yet again, McGinn, along with Public Defence Service lawyer Leah Davison, made renewed, desperate efforts to get help for him. That help never arrived.

Letter from Thomas to Leah reading: “I don't want to be this person anymore, hurting the people that mean the most to me, stressing my Dad & myself out, pacing a cell most nights wanting to cry because I know with the right help I can be better than this."

In a letter from prison in mid-2021 to the Special Circumstances Court where he was about to be sentenced, Morrison describes — arguably better than anyone could — what’s wrong with the system. 

In four pages of his beautifully formed hand (albeit with the kinds of errors you’d expect from someone with his condition) he writes, “I do feel in a way that I am being punished for having FASD rather than criminal behaviour, because I really have tryed hard to get the best appropriate help to manage my FASD therefor prevent further offending but unfourtnly feel I havint received it.”

“I don’t intend or purposely do the things I do & I am very sorry & regretful for what I have done, all the harm & hurt Iv caused people because of my offending. 

“I really am trying to be a better person & progress forward but realise I need help to do this & prison isn’t the place for me to be able to do this.”

He writes too, to his lawyer Leah Davison, of just how hard it’s been to live his life. 

“I don't want to be this person anymore, hurting the people that mean the most to me, stressing my Dad & myself out, pacing a cell most nights wanting to cry because I know with the right help I can be better than this.

“I just want to be a better person, live a better life. I am trying, Leah, I really am.” 

*Names changed to protect identities

Words by Paula Penfold and Louisa Cleave.
Design and development by Alex Lim.
Artwork by Toby Longbottom.

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