Ko ngā whakamāramatanga mō te hunga ngaio | Information for Professionals

 

 

FASD: the basics for ALL professionals

 

In Aotearoa New Zealand, we are sadly behind other parts of the world in terms of specific resources for professionals who may routinely deal with individuals with FASD, but there is a wealth of resource internationally, particularly in Canada, America, Australia and the UK. Australian and Canadian studies are often comparable with New Zealand because of our similar social/alcohol cultures and indigenous populations.  

In these tabs you'll find some specific information on FASD for 'frontline professionals' – a group defined as including 'anyone who encounters people with FASD in the course of their everyday work, and who is not a specialist in working with FASD and other neurodevelopmental impairments. For example, police, early childhood professionals, teachers, social workers, youth workers, counsellors, those working in kaupapa Māori services, other social services, courts, and health professionals for whom FASD and other neurodevelopmental impairment is not an area of specialisation.'

We have collated some of this specific information for you, but urge all professionals to continue with their own research, as information on FASD is being updated globally all the time.

Below there are a few essential resources for ALL professionals to begin with when dealing with individuals with FASD.

FASD: Essential Strategies
(booklet and online e-learning course)
A Resource for Frontline Professionals

Published in July 2019 by Te Pou o te Whakaaro Nui.

This is one of the best Aotearoa-specific resources for professionals we have and we urge you to make it your go-to. The above definition of frontline professionals is taken from this site. The resources consist of a free downloadable handbook AND an e-learning course, which 'sets out the essential values, attributes, knowledge and skills required to provide effective and compassionate support for people affected by FASD and their whānau.'

Click here  for both the e-modular online course 'An Introduction to FASD' and the booklet 'FASD: Essential Strategies'.

FASD Language Guide

The language we use around those with FASD is extremely important to enable them to maintain dignity and respect. This is essential basic reading for all frontline professionals. Click here to read. 

FASD: A three-minute introduction for everyone

This video of the basics from Canada's wonderful Asante Centre is worth watching for quickly getting up to speed.

 

 

2021 Canadian study – comparative to New Zealand

A broad and recent study into the health, social and legal outcomes of individuals with diagnosed or at risk for FASD. Entitled 'Health, social and legal outcomes of individuals with diagnosed or at risk for fetal alcohol spectrum disorder: Canadian example', it worked with 160 people with FASD over 4 years and had some sobering, but unsurprising outcomes.

Aotearoa New Zealand has a comparative drinking culture and indigenous population to Canada.

• Individuals with FASD had high rates of physical (38%) and mental health (78%) comorbidities, and 50% used substances.

• Individuals with FASD were involved in the child welfare (75%) and criminal justice (30%) systems.

• Individuals with FASD involved in the child welfare system were over 4 times more likely to have anxiety disorder.

 

 

Educators

 

*PLEASE NOTE: FASD-CAN recently launched a brand-new desktop resource especially for educators. The FASD Learning Support Resource is a downloadable, interactive, NZ-specific digital tool which is a collection of the best resources available for learning support staff and kaiako. Please go to the ‘Download: FASD Learning Support Tool’ tab below.

 


Supporting ākonga / students with FASD: An Introduction

The school environment is extremely challenging for most students with FASD, irrespective of IQ or background. We fully understand that it's also challenging for many teachers trying to manage the FASD behavioural symptoms observed in a school environment, both in the classroom and in the school grounds. We want to tautoko / support both sides of this relationship, because it's becoming more and more clear: an inclusive education is one of the most important indicators of later-life success for those with FASD.

Many children with FASD have mixed feelings about school. They love the social interaction but get frustrated and anxious about academic learning. And most parents/caregivers find the education of their tamariki and rangatahi the most difficult, problematic, and draining aspect of their FASD journey. 

Effective communication between home and school is vital to a successful educational experience for a child with FASD, as is the provision of FASD-informed academic and behavioural support and supervision of the child both within the class and playground. Usually, the unstructured activities and need to interpret social interactions in the playground make support and supervision in this area of school essential, but sadly lacking.

In the tabs below you'll find some excellent national and international resources for education professionals.

 

What can teachers expect from an FASD student?

  • FASD is a lifelong brain injury but is often invisible – individuals can present as neurotypical, which can be misleading and problematic.
  • Individuals with FASD can have trouble thinking of multiple things at the same time, meaning that decision making is difficult. Taking time to go over choices one at a time, and to outline possible outcomes, helps tremendously.
  • Tamariki with FASD can also come across as inflexible. This is because they find it difficult to change their thinking quickly. Preparation for change is important as they often think in very 'black and white' terms. This is often called 'concrete thinking'.
  • Self-management is often difficult for individuals with FASD. Timetables and visual cues with lots of repetition can be helpful as can can be helpful, as can gentle reminders offered without judgement.
  • Like all of us, those with FASD have many interests and strengths - tapping into these can produce amazing results. It is often the case that people with FASD possess hidden talents or strengths which compensate for the difficulties they have in day-to-day living.
  • A person with FASD will need support throughout each stage of their lives to achieve and live their best possible life.

 

Knowledge, Attitudes, and Practices Towards Fetal Alcohol Spectrum Disorder in New Zealand Educators: An Online Survey

In 2021/2022, the School of Population Health at the National Institute for Health Innovation within the University of Auckland conducted a survey led by Joanna Chu, Jessica McCormack, Samantha Marsh and Chris Bullen. This report was released in May, 2022.

Abstract

Background: Fetal alcohol spectrum disorder (FASD) is a common form of developmental disability but may be poorly understood by professionals working with people with FASD. The aim of the research is to understand the FASD knowledge, attitudes, awareness, and practices among people employed by the education sector in Aotearoa New Zealand and identify gaps in knowledge.

Methods: We conducted an online survey of New Zealand Education professionals. The survey focused on the following areas: awareness of FASD; knowledge and beliefs about FASD; impact of FASD on professional practice; and training needs.

Results: Of the 419 participants, most had some knowledge of FASD and its effects on learning; however, there are still gaps that need to be addressed so educators can provide support to individuals living with FASD.

Conclusion: There is a need to improve workforce capacity and develop guidelines that address the needs of front-of-line staff working with children with FASD in education settings.

Policy Implications

Most New Zealand educators recognised that FASD is relevant to their work, however, very few had received training to be able to support individuals with FASD. Our findings suggest that more resources are needed to support educators so that they can meet the needs of students with FASD in their care. This includes education resources to help teachers understand FASD and the common challenges associated with FASD, as well as in-class support and specialist support so they can accommodate the needs of children with FASD. Additional surveillance of educators knowledge and attitudes should be conducted in order to evaluate the impact of resources and ensure that they are targeted to address the needs of educators over time.

The full report can be read here

 

There is a valuable resource for educators on the Ministry of Education's 'Te Kete Ipurangi' (TKI) website. This covers understanding FASD, strategies for action around identifying needs and support, strategies for specific year groups, and some excellent international resources, too. 

 

The Education Hub is Aotearoa-specific and its mission is 'to bridge the gap between research and practice in education.'

'We want to empower educators to find, use and share research to improve their teaching practice, and then share their innovations. We are building the online and offline infrastructure to support this to improve opportunities and outcomes for students.'

An excellent resource for teachers.

Click here to go to The Education Hub. 

 

FASD-CAN member Tracey Jongens is a specialist school teacher and a mother with the lived experience of raising tamariki with FASD. In her 2020 video Demystifying FASD and School she identifies strategies that can be used to best support students with FASD, both in the classroom and general school settings. 

 

Learning to self-regulate is a big issue for most tamariki with FASD. Children with FASD may show signs of being hyper-sensitive (feelings things too much) or hypo-sensitive (not feeling things enough) to the senses of touch, taste, smell, sight, and sound. It can be very handy for them to have noise cancelling headphones, sunglasses or perhaps a fidget toy on hand. To avoid major distractions, it's important to anticipate sensory overload scenarios in class before they happen. 

Teachers can help facilitate this for them by having a low-sensory area somewhere in the school, and several sensory breaks during the day.

More and more teachers are integrating regular sensory breaks and sensory learning strategies into their classroom and school days to help all students to be in the best state for learning and to assist with self-regulation – but this is even more important for those with FASD. 

 

'Heavy Work' and Sensory Self-Regulation

Everybody is born with an internal sense of body awareness known as 'proprioception' which is initialised via messages sent to our brain from our muscle and joint receptors. Sometimes people affected with FASD have sensory processing difficulties which means that their central nervous system is trying to figure out a way of linking their brain to receptors. Recent research shows that getting kids to do 'heavy work' can focus and calm them in many different ways.

For an excellent introduction to initialising heavy work to help with sensory self-regulation, check out the award-winning, UK-based Griffin Occupational Therapy, who specialise in sensory processing. 


The ALERT Program®

The Alert Program® was developed by Mary Sue Williams and Sherry Shellenberger, American occupational therapists.  The programme teaches children how to manage and change how 'alert' they feel during the day so they are in the best possible position to attend, learn and self-regulate.  "Self-regulation is the ability to attain, maintain, or change how alert one feels appropriately for a task or situation.” – Williams & Shellenberger, 1996, pg 1-5. 

The Alert Program® teaches children that their body is like a car engine and asks them to identify if their engine is running too high (i.e. hyperactive, unfocused), too low (ie. tired, listless, bored), or 'just right'.  Children are taught their own unique set of sensory strategies to help them to maintain themselves in the 'just right' range to attend and learn.  The Program also develops the concept of 'heavy work' which can be used in all situations to get learners into the 'just right' range for learning.

More information about the evidence-based ALERT Program® – or view this video: What is the Alert Program®?

For a good, basic explanation of the philosophy and science behind the program and why it works you can read this article: Alert Program Overview


Relax Kids 

Relax Kids is an evidence-based programme developed in England. It involves a seven-step holistic process that provides children with strategies and tools to calm their mind and self-regulate their body. It's also designed to build self-esteem and confidence. It uses a range of active, then mindful and relaxation strategies, and positive affirmations in the 7-step process.  

For more information about the Relax Kids Programme visit this website.

 

There is much information on the internet about activities and sensory tools that can be used to help your students self-regulate.

Here are some other website ideas from the many available:

LemonLime Adventures

Twinkl

Sensory Processing Disorder - break ideas

Ideas that will help me achieve at school – from an FASD perspective

Helping me remember

  • Signs with pictures that show me what to do are helpful
  • Reminders written down on the board
  • Written messages to take home rather than oral messages I have to remember (or email messages direct to home)
  • A visual timetable
  • Give a warning (or two) a few minutes before I have to change an activity
  • Frequent checking with me to ensure I know what I am doing (and checking I have the things I need at home).
  • Giving me one instruction at a time
  • Praise when I do remember ... but don't expect this to be possible all the time.

 

If I don’t always do the right thing it's probably because I can’t, not because I won’t!


Helping me learn

  • Well-explained, simple, clear oral and written instructions given step by step
  • Check my understanding
  • A model or visual example
  • A quiet space where I can work by myself
  • Lots of opportunities to practise new ideas
  • Lots of repetition
  • Clear boundaries and expectations
  • Routines that are regular and easy to predict
  • Giving me specific feedback
  • Praise for every small achievement or improvement builds self-esteem and a desire to keep trying
  • More time to do things so I can think about things properly and not rush
  • Checking with me regularly and helping me think a bit more, rather than expecting me to ask questions
  • Pitching my work at the correct level for me, not necessarily the same as my peers.

 

Helping me behave

  • Listen to my parents/caregivers. They know me best and have already had to develop strategies and techniques to manage my FASD symptoms. Do not think you know better.
  • Work with my parents/caregivers to be as consistent as possible in approaches to my symptoms at home and at school
  • Explain to me what you expect and how you want me to act
  • If I get angry, let me calm down before talking to me about it
  • Have a safe place for me to go when I am getting angry
  • Have a safe adult who can help me when I need help
  • Visual prompts to show me what to do
  • Tell me about changes to the routine as soon as you can
  • Tell my parent/caregiver before something happens so they can help me understand what is happening
  • Give me regular times during the day when I can let my brain rest, and reduce my stress and anxiety
  • I do not do well when I am expected to manage myself, I do better when someone can support me
  • Tell me when I am doing things the way I should be - praise is great!
  • Sometimes I can be encouraged to do silly things by others. Please help me to know when others are not helpful to me.


Communication that builds my self-esteem

The way you talk to me is really important to my self-esteem and desire to learn. It can make or break our relationship.  I know I will do things that will 'push your buttons' and that may be dangerous or inappropriate at times. It is NOT deliberate.  My brain makes it hard to think clearly and act in a way most people would find acceptable. Sometimes I can, but I cannot do it consistently. This is the unpredictability of FASD. I don't want to be the 'naughty' kid no one likes or wants to have in their class, but I cannot change my brain (although I often wish I could!). 

The impact of the prenatal alcohol use had on my brain development means I am often uncertain and anxious inside. I tend to be in constant readiness for a 'flight or fight' response. Get to know me, learn from what my parents/caregivers have told you about me, and try to adjust your expectations so I don’t get triggered and the pressures of learning and school participation don’t build up.


Consequences

Please think carefully about why I may have done something wrong that requires a punishing 'consequence'.  Have I done the thing I did because of my brain damage, which I cannot change no matter how hard I might want to, or because I made a deliberate thoughtful decision to do something wrong? Both are possible, but it is usually because of my brain.

Any consequence for the choices I make because of my brain damage should always be used as an opportunity for restitution and learning. This will be mana-enhancing and encourage me to keep trying. Talking about growth mindsets and learning from mistakes is also helpful, as is the phrase: "You can't do it YET!" 

Educators should also have realistic expectations about the effectiveness of consequences in changing unwanted choices or behaviour. My choice or behaviour is not because I am trying to do the wrong thing. It is the brain damage which has resulted in issues with short-term memory, the lack of development and ineffective neural links to the cerebral cortex.  

The anxiety and academic and social confusion I feel most of the time is bubbling away unseen beneath the surface.  This results in cortisol rushing through my system, and can quickly turn into a fight and flight responses to any unwanted stimuli or some fear, frustration, or anxiety. 

If a consequence is appropriate for my actions, it needs to be short, pitched at my developmental capabilities, directly related to the incident (a natural consequence), and predictable – i.e. the consequences for certain behaviour had been explained to me beforehand and I had been regularly reminded of them because of my memory problems.  


Some final points

BEING 'DIFFICULT' – if I'm unhappy, unfriendly or difficult this will almost certainly be because I am confused, frustrated, tired or angry. Please take the time to understand me if you can.

HOMEWORK – when I'm at school I use an enormous amount of my energy to keep myself safe and focused. At the end of school I am extremely tired and do not cope well with homework. It would be great if you could think about ways to minimise homework or make it more manageable. Neuroscience has proven through the use of PET scans that the brain of someone with FASD uses 3 x more energy than the brain of neurotypical individual.

DECISION MAKING – FASD means that my brain has trouble thinking of lots of things at once. This makes it really hard for me to make choices and decisions. It's helpful when I have someone else to help me understand what the choices are and how they might affect me.

INFLEXIBILITY – My FASD brain also means that I cannot change my thinking quickly. I 'think in black and white' and have trouble with thinking outside this. If you do have to change things, please help me by preparing me first.

MY TALENTS – when I can work within my talents I can show you amazing things. Please let me have regular opportunities to work in these areas.

 

I can't change the way I was born, but you can help make my environment be a place where I can achieve success!

 

Nate Sheets is a behaviour consultant and parent coach with over 12 years of experience working with children and adults with developmental disabilities. He specialises in FASD, trauma, and cognitive skills. He's from Oregon and his website is Cognitive Support Consultation

Nate's '6 Things Educators and School Staff Should Know About FASD' is a great resource for educators globally. 

 

 

 

FASD-CAN has recently launched a brand-new desktop resource especially for educators. The FASD Learning Support Tool is a downloadable, interactive, NZ-specific digital tool which is a collection of the best resources available for learning support staff and kaiako. 

Who is it for?

The tool is intended to be of use primarily by learning support staff – RTLBs, SENCOs and Learning Support Coordinators – but also by teachers seeking information on students with FASD. 

Why was it developed?

At FASD-CAN we believe understanding the brain of those with FASD and making accommodations for their brain differences is critical to their inclusive education. The differences seen in FASD are unique for each child.

Whilst some aspects overlap with other neurodiversities, FASD is often not understood or recognised (it's often referred to as the ‘hidden disability’) and currently, students with FASD frequently struggle within the education system. Evidence shows that getting through school can be a critical step for those with FASD; if they are excluded, their future options can go downhill rapidly.

The internet has an enormous array of fantastic – and less fantastic – resources on FASD and education. We are confident that this tool collates the best resources in one place; it also gives a New Zealand specific lens to the resources and to make it easy to access information on a permanent downloadable desktop resource.

Who made it and what is it based on?

The tool was developed between FASD-CAN and Manawanui RTLB (Resource Teacher; Learning and Behaviour) Cluster 10, with RTLB Trish Porter leading the development. The tool also benefited from the digital tech skills of Vicki Wilson and input from the FASD-CAN education sub-committee.

The resource follows the pathway of He Pikoura, the framework used in Aotearoa by learning support practitioners to collaboratively work with students and their whānau. 

We have added resources at each step in the He Pikorua sequence to support effective interventions for students with FASD and those who have behavioural symptoms displaying traits of FASD. 

How do you use it?

Download the resource by clicking here or on the picture below. Get familiar with it, then keep on your computer desktop to access whenever you need help.

We hope this resource will help those professionals who support and educate children with FASD to understand their presentation.

 

 

 

Exclusion should be the last resort of schools and it can often be avoided with the right interventions begun early. It's widely accepted that that keeping those with FASD in school for as long as possible can avoid many problems later in life. 

In September 2022, FASD-CAN ran a webinar presented by Cherryl Waerea-i-te-rangi Smith (Nga Wairiki/Ngati Apa), a grandmother raising a 16 year old mokopuna who has a diagnosis of FASD. She has a PhD in Education from the University of Auckland and works as a researcher. You can watch a recording of Cherryl sharing her personal story about reinstating a mokopuna after being excluded from school here

There is an Aotearoa-based website which has a number of resources for those experiencing, or trying to avoid exclusion, called Exclusion to Inclusion Aotearoa NZIt includes digital presentations which discuss behaviour using a brain-based approach and identifies trauma-informed strategies which educators can use to support inclusion.

The above site also includes some also short films of rangatahi talking about what the impact of being excluded has been on their wellbeing. This video will be helpful to individuals, their whānau, schools, Boards of Trustees, and people who work with tamariki and rangatahi.

Evidence shows that individuals with a neurodevelopmental disorder such as FASD who receive early interventions and support will have better long-term life outcomes than those whose disability goes unrecognised and therefore unsupported.

Those working in the early childhood education sector play a huge role in supporting children and whānau as they navigate their way through the first years of life. NOFASD Australia together with Early Childhood Australia have developed a comprehensive suite of resources designed to give early childhood educators research-based strategies designed to meet the diverse needs of children with FASD.

The 'Through Different Eyes' suite of resources was launched on 9th September 2022. They're designed to raise awareness of FASD for those working in the Early Childhood sector to help build educator knowledge, skills and understanding, but they'll also be useful for families where a child has either diagnosed or suspected FASD.

There's an educator's guide, a poster, a brochure and some videos in the group of resources. Find out more here about the 'Through Different Eyes' resources. 

Employers

 

Will you become a Carewise employer?

Most of our information here is about employing individuals with Fetal Alcohol Spectrum Disorder, but did you know one in eight New Zealand employees are caring for someone with a disability or chronic health condition? Juggling work with a challenging, 24/7 support role may leave some of your most skilled and experienced staff feeling they need to give up work or reduce hours. Becoming a CareWise employer will reduce your recruitment, retention and training costs – and you'll feel great knowing you're taking steps to make it easier for caregivers to keep working to support their whānau.

FASD-CAN is a Carewise employer. To join us in looking after your caregiving staff, please click here

 

What can employers expect from employees with FASD?

FASD-CAN has created a handy double-sided, downloadable sheet for employers to have on hand for those quick strategy reminder moments! Click here or on the pic below to download. 

See tabs below for more information for employers. 

FASD in the workplace

 

 

If you're an employer who has made the wonderful decision to help a neurodiverse individual into a job, Workbridge is a fantastic place to start your journey. 

As the largest New Zealand-owned employment agency for people with a disability, injury or illness (22 service centres nationwide), Workbridge fills up to 4000 job vacancies each year – at no charge to employers or jobseekers.

Services to employers include: 

  • job matching
  • advice on interview and making the recruitment process accessible
  • assistance to access funding for disability-related costs, if required
  • support with induction, on-site training and making reasonable accommodation if required
  • post-placement support for up to a year or longer if required

Workbridge supports workplaces to become confident in hiring people with a disability and can assist employers who require as little as five hours’ work a week. They can help with vacancies, internships and work experiences for disabled jobseekers.

Go to the Workbridge website.

 

Supporting people with FASD into a job is an enormous step on the way to helping them avoid the secondary disabilities of mental health issues, crime. A social worker's role in helping a young person with FASD avoid secondary disabilities can be daunting unless they can first see the possibilities for people with this severe brain difficulty, then understand what it takes and their own role in making things work well for people with FASD.

In this video from Oranga Tamariki, you will see how the employer intuitively used FASD practice to develop a young person with FASD in the workforce. The FASD Eyebite cards, used to guide social workers interacting with tamariki with FASD, are also used in this video to demonstrate that the same FASD principles can also assist the person with FASD in the workplace.

The video also points out areas where extra support outside of the workplace is needed to enable employment to be maintained. While the employer in this case took the initiative to support the young person in out of work areas, social work input is important in this area to shore up the chance of achieving, starting and maintaining employment, income and the ensuing lifelong benefits. Click here or on the pic below to watch the video.

 

 

 

Here are some common challenges together with FASD-friendly accommodations that other employers have found to be helpful.

 

'They need to pay more attention to instructions.'

We have a board where we post all important daily information. We teach all our staff to refer to it every day. We'll remind our employee with FASD to check the board every day.

 

'They need to be a better listener.'

We'll put them with a work buddy who will be on hand to repeat instructions. We'll make sure they are with someone who is patient.

 

'They need to be responsible for their own time management.'

We have set break times and a team co-ordinator who ensures everyone is back at work at the right time.

 

'They need to form independent work habits and take responsibility for their own learning.'

We have a training co-ordinator who will work closely with them on the job (supported hands-on learning). We use the TIPS method of training: Tell, Illustrate, Practice, Support.

 

'They find it hard to transition well from task to task.'

We'll help them repeat the same task until they are fully competent at it and before moving them on to more complex tasks. We know that repetition and routine is key.

 

'They break the rules and can sometimes be defiant.'

We will ensure they are surrounded by a great team with good work ethic to ensure they are steered in the right direction.

 

'They need to be socially isolated as they are a distraction to others.'

We encourage social interactions to build a sense of being part of the team.

 

'They have not fulfilled the criteria and will not get a certificate/award.'

We recognise outstanding performance of individuals but we also encourage and reward team effort.

 

'They are difficult to manage in the afternoons.'

We'll trial them with full time hours and can scale that back if they become too fatigued.

 

'They need to start making choices for their own learning.'

We'll ensure a static work environment for them with set hours in the same department with the same colleagues. Choices to move to other departments will be limited.

 

Police & Justice

FASD in the Justice System - the basics

According to a 2019 study in Canada, over 30% of individuals in the penal system presented with FASD, and the Banksia Hill Detention Centre project in Australia (see tab below for more information) put the figure even higher at 36% (with only 2% previously diagnosed). The figure here in Aotearoa New Zealand will be as high as that, if not higher.

As a frontline justice worker, when you come into contact with individuals who have, or are suspected to have FASD, it's essential to think about how you are communicating – the person may present as neurotypical and in fact often may have very high levels of expressive language – but there are many things you may be doing or saying that simply do not make sense to an individual with FASD.

FASD behaviour resulting from communication breakdowns could be construed as wilful and further unhelpful punitive justice may be applied.

There is an excellent article in Stuff (June 8, 2022) which discusses how an individual with FASD may present in a misleading way – click here for a 5-minute read. A three-minute video from The Asante Centre in Canada also illustrates the communication gap well. 

There are some helpful tabs below which provide a starter for those in the justice sector – particularly the two webinars created in 2022 by the NZ Public Defence Service for lawyers. 

 

 

Here's a handy, double-sided printable information flyer that can go on the wall or be handed out to employees as the basis for ongoing training around FASD. Click here, or on the thumbnail below to access. 

 

Police info flyer

The Criminalisation of Individuals with FASD: Is it Necessary or Effective?

by Dr Valerie McGinn, Neuropsychologist & Clinical Advisor, FASD-CAN   

 

Why is it that folks with FASD tend to break the rules as children and then as adults offend in society?

92% of caregivers in a study responded that their loved one with FASD was vulnerable to manipulation. Sometimes they are being easily led or responding to social pressures but they also get into trouble of their own. It is known that individuals with FASD are more likely to be the victim than the perpetrator of crime. Their trusting nature leaves them open to victimisation with a poor recognition of risks posed by others. 

However, it is every parents’ fear that their delightful, trusting and gullible child with FASD who lacks common sense will end up on a trajectory towards prison. Unfortunately, this fear is often well founded, and it seems prison is the place where most funding is allocated to individuals with FASD in Aotearoa.

Sadly, many end up in the revolving door of the Criminal Justice System, especially when they have few protective factors. The late Mr Thomas Morrison spent 20 years of his life in prison for minor crimes, mostly shoplifting followed by other charges accruing due to his agitation towards the police, at great cost to him, his family and society. At least two million dollars of taxpayer's money was spent on incarcerating Thomas. Judge Hastings, in his decision in 2019, agreed that had even a quarter of that amount been spent on disability care everyone would have been better off. 

Criminal conduct has been found to be 30 times higher in individuals with FASD than the general population. It is estimated that 30% of prisoners in Canada have FASD when they only make up 3-4% of the general population. Once released they are at increased risk of reoffending and not following release conditions so sanctions increase. This is largely due to resources not being provided to ensure their well-being in the community.

An online survey of 425 teenagers and adults with FASD conducted by the Changemakers in Canada found 90% of adults with FASD responded that help with things they found hard would make life easier for them. The top services they wanted were mental health professionals and GPs who knew about FASD, and a person who could help them when things went wrong. Although 82% reported that life was hard for them, 82% also reported that they had hopes and dreams with goals they wanted to achieve. This potential and willingness remained untapped while trying to focus on the basic necessities of life such as shelter, nutrition and healthcare. 

FASD largely unrecognised by justice workforce

There is increasing recognition of FASD in the New Zealand judiciary – but not in the justice workforce. This includes police, probation, corrections officers, health assessors or treatment providers. It is on all these fronts that individuals with FASD clash with the pre-exisiting training and practices of the professionals who are employed to help them and through this help make the community safer.

The legal process, as well as restorative and rehabilitation programmes, are based on offenders taking personal responsibility for their actions. Offenders must admit what they have done wrong, show remorse for the harm they have caused, accept their deserved punishment, make amends and make personal changes to ensure that they will never do the harm again.

But all of these tasks are either entirely or in part out of reach for those with FASD, who are often punished more harshly due to an apparent lack of remorse. The theory of mind required to step outside one’s own perspective to appreciate how one’s actions impact on others is almost always disrupted in individuals with FASD. An entirely different approach is needed. It requires justice professionals to understand how brain impairment impacts on behaviour. The same paradigm shift that families have to make when caring for their loved one with FASD is needed across all systems interacting with them, including in the legal process.  

Impaired executive brain function is a major factor

It has long been presumed that criminal behaviour is intentional and that by holding the person to account for it, they will not repeat it. These premises do not hold true for FASD when there are Executive Function (EF) impairments that will likely reduce capacity to form an intention and think through to consequences.  EF is the only brain process that involves conscious thought to activate appropriate actions and inhibit the inappropriate. It is necessary to think rationally and control impulses.

In any situation where there is the potential to do the wrong thing, abstract multi-tasking is involved. One needs to perceive the multiple factors in the current situation, retrieve relevant memories (about what has been learned and what worked previously), trouble-shooting potential actions by foreseeing possible consequences, linking cause and effect and making a go vs no-go decision – all while controlling inappropriate emotions and urges.

All of these aspects of decision making work smoothly in an intact brain so that these thinking processes have concluded before taking action with intent. ‘While those with FASD may have the ability to plan, form intentions and make choices in simple familiar situations, in complex and fraught social situations their planning, intentionality and choosing is likely to reflect impaired executive control due directly to brain damage’. There are so many brain processes involved in such decision-making situations where things can go wrong for those with FASD. When the individual may be in a stressed or in an elevated emotional state, ability to override an impulse with rational thought may not be possible.

Quoting again Natalie Novick Brown and Stephen Greenspan from their recent paper on diminished culpability:

“FASD does not mean persons cannot formulate plans and intentions. Rather the executive multi-tasking required to generate appropriate plans and intentions is intrinsically flawed by brain damage that can compromise ability to foresee consequences, weigh costs and benefits, appreciate cause and effect and shift course while at the same time inhibiting strong unconscious urges from the limbic system. Although brain damage does not exculpate those with FASD who have offended, it does explain how biological factors over which the individual has no control influenced their behaviour.”

The above factors do not only influence rationality and impulse control at the time of a target offence but also within the entire legal process. In the beforementioned Changemakers survey, 38% of respondents had been arrested while 55% had been the victim of crime. Of the 87 who had been charged with an offence, 30% said they did not commit it. 47% of them admitted guilt without understanding the consequences. 65% involved in the CJS as a defendant or victim responded that they did not understand the legal process.

 

Many with FASD admit a charge to avoid continuing with a legal process that is confusing and stressful... when a brain-damaged individual lacks the higher thought processes to make logical decisions there are real risks of a miscarriage of justice occurring.   

 

These findings are concerning. Making false confessions, waiving rights to silence or legal representation, acquiescing to authority figures, falling for police ploys, confabulating, miscommunicating with and poorly instructing Counsel and misunderstanding legal process are all risks to the integrity of the legal process. All impact on capacity to adequately participate and defend a charge in Court. The process of entering a plea requires the individual to know what they are accused of, the evidence against them and any defences that may be available to them.

It involves a complex weighing up of the costs and benefits of two different courses of action. Many with FASD admit a charge to avoid continuing with a legal process that is confusing and stressful. It is embedded in law that a defendant does not need to act in their own best interest but when a brain damaged individual does not understand the options and processes and lacks the higher thought processes to make logical decisions there are real risks of a miscarriage of justice occurring.   

There is nothing inherent in those with FASD to enter the CJS if they are diagnosed, understood and well supported. Missed diagnosis and misdiagnosis means that many in the CJS don’t know themselves that they have FASD and nor do their family or legal representatives. They are covered by a blanket approach of sanctions and rehabilitation efforts that focus on taking responsibility, enhancing self-control, improving interpersonal problem solving and building pro social attitudes that may work for others but will not be sufficiently effective for individuals with FASD. They are perceived as non co-operative or they are psychopathologised as having personality disorders or defects rather than a prenatally acquired brain injury when these efforts fail.

A move away from criminalising towards health

Professor of Psychiatry Mansfield Mela believes the focus needs to move away from what to do to reduce recidivism towards what to do to provide support to improve quality of life and mental health. There needs to be a move away from the criminal route to a health route for those with FASD. The opinions of individuals with FASD themselves, their caregivers and supporters need to be included when crafting what will be effective in keeping people in the community without offending.

A large part would be in reducing the adversities they face by providing supported housing, meaningful occupation, improving family cohesion, providing leisure activities and enhancing skills and interests, all in a culturally appropriate way. Dr Mela sees that skilled mentors/navigators hold the key to these supports. There needs to be a move away from silos to communication and collaboration between justice, mental health and disability professionals putting the individual and their whānau at the centre.  

Essential care principles Professor Mela identifies are RRRR:

  • Recognition of neurocognitive deficits and strengths
  • Relationship building
  • Realistic expectations and
  • Realisation of trauma.

The more challenging issues an individual has, the more support they need.

The typically adopted goal of increasing independence leads to supports being reduced which correlated directly with reoffending in a group studied 3-4 years post release from prison. If there is a mismatch of services, then the person won’t feel supported and these services will not be effective and time and money is lost. Services need to be evidence based for FASD or things can be made worse. Kaitlyn McLachlan when recently presenting the FASD Inreach services working across 10 prisons in Alberta, concluded that any correctional facility without FASD services is ineffective and unjust. By her standard all New Zealand prisons and youth justice facilities are ineffective and unjust.   

In Canada FASD evidence is commonly introduced in Courtrooms to meaningfully enhance outcomes with 655 cases from 2012 to 2020 that had a defendant identified with FASD. Most were for sentencing and FASD was always accepted as a mitigating factor and never as aggravating. In NZ FASD has also been widely considered a mitigating factor in sentencing, as a reason for not applying a 3rd strike and as a reason for police statements to be excluded as unreliable.

 

Even simple questions like, “Do you have FASD or has anyone ever said you might have FASD?” or, “Was alcohol a problem in your home when growing up?” are not asked by most health assessors providing assessments to inform the Courts.

 

A lack of FASD evidence can lead to a miscarriage of justice, as for Teina Pora. He is not the only innocent man with FASD wrongly imprisoned. Another Māori man Mauha Fawcett has also had a murder conviction quashed by the Court of Appeal for the exact same reasons. No doubt there will be others who are innocent imprisoned under similar circumstances whose FASD has yet to be recognised. Even simple questions like, “Do you have FASD or has anyone ever said you might have FASD?” or “Was alcohol a problem in your home when growing up?” are not asked by most health assessors providing assessments to inform the Courts.

There is a huge lack of FASD expertise amongst the forensic workforce in New Zealand. This leaves FASD mostly undetected and therefore the correct advice and recommendations unprovided. The revolving door is always open to men with FASD like Thomas Morrison who the Ministry of Health failed to provide any Disability Support Services to two years after my referral was made, up until he died on 21/09/21, aged 43 years.  

Partnering with individuals and whānau for support: what works?

Even in Canada there is a lack of good information about trajectories, protective factors and identifying risks and what best supports those at risk. However, it is clear that those with the highest risk need to be provided with the highest level of supports. How can service providers reach a level of competence to be able to engage with folks with FASD? Their buy-in is needed for success and most have an understandable suspicion about health professionals from prior experience. A partnership approach is needed with the individual with FASD and their family and supporters to make sure it works, moving away from risk focused to a strengths-focused collaborative approach. It is critical to recognise FASD at whatever stage of life it presents and to identify strengths and challenges to inform an effective response.

Mr Mauha Fawcett was released from prison without a cent and only with one set of clothes. How can a man with FASD who was wrongfully imprisoned for ten years be expected to navigate the complexities of life without any support services? He has a dedicated lawyer who has managed everything for him for years, but this is not the role of a lawyer.  Fundamental changes are needed for individuals like Mauha, Thomas and the many others I know with FASD currently incarcerated.

Screening and diagnosis in prisons will always be cost effective so that suitable support services can be put in place there and when reintegrating to the community. In Alberta, services are put into the prisons in the form of healing circles and sweat lodges are available on release which are very successful. Such culturally appropriate FASD services in our prisons and transitioning seamlessly into community support will go a long way towards preventing the revolving door that we currently have.

Thanks to the Changemakers and the Lakeland FASD Conference 2021    

 

 

Improving treatment and outcomes for young people with fetal alcohol spectrum disorder in the youth justice system: A social work-led response and practice framework.

Oatley V. and Gibbs, A. (2020) Aotearoa New Zealand Social Work 32(2) 5-16.

Young people with fetal alcohol spectrum disorder (FASD) in Aotearoa New Zealand are both primed for, and hindered within the youth justice (YJ) system. This research provides a fresh perspective on how social workers can take a lead role in ensuring young people with FASD receive neurodevelopmentally appropriate interventions both within the YJ system 

 

• A chapter in the Aotearoa Handbook of Criminology (2021) Auckland University Press by Anita Gibbs entitled 'Neurodisability and criminal justice: Time for a radical rethink' is essential reading for those within the criminal justice system.

 

• Views from the Bench: Fetal Alcohol Spectrum Disorder in the Courtroom
In N Novick Brown (ed), Evaluating Fetal Alcohol Spectrum Disorders in the Forensic Context 

In this book chapter Judge FitzGerald, a District and Youth court judge in Auckland (and our FASD-CAN patron), addresses FASD and the law in New Zealand. He identifies low levels of awareness, absence of prevalence studies, lack of diagnostic capacity and barriers to essential services and supports as the major features regarding FASD in the New Zealand justice context.  

 

Psychological Assessment for Juvenile Courts – Haner D., McGinn V., Harris K. (2021)
In: Novick Brown N. (eds) Evaluating Fetal Alcohol Spectrum Disorders in the Forensic Context.
Springer, Cham

In this chapter Dr Valerie McGinn and two Canadian psychologists address the identification of offenders with FASD and education of  the courts in order to reduce involvement of youths with FASD, both as perpetrators of crime and as victims. Its chapter describes the processes used in Canada and New Zealand to evaluate young people who have committed crimes that were influenced by the neurodevelopmental deficits associated with FASD.

 

 

There's a series of excellent 'Tip Sheets' created by the FASD Network of Saskatchewan that professionals in Aotearoa can refer to in the absence of New Zealand equivalents (linked to here with our thanks!). 

For justice workers representing individuals with FASD, this downloadable pdf contains valuable information on topics such as: 

  • describing events
  • client meetings
  • preparing and practising for court appearances
  • restorative justice

and much more.

Download Tips for Justice Workers.

 

In April 2022, the NZ Public Defence Service created a two-part webinar series for their staff across Aotearoa, specifically focusing on Fetal Alcohol Spectrum Disorder in the NZ Justice system. 

Speakers include Peter Hutchinson, Director of the Public Defence Service; Dr Valerie McGinn, Forensic Neuropsychologist; William Edwards, Deputy Public Defender, Los Angeles County Public Defender in the Mental Health Court, and Dr Brandon Birath, Health Sciences Assistant Clinical Professor at the David Geffen School of Medicine at UCLA.

FASD-CAN is extremely grateful to the Public Defence Service for allowing us to bring access to these important and ground-breaking webinars to justice staff across the motu.

Part One concerns the nature of FASD and how it presents, with a focus on why FASD should be recognised as a developmental disability that has implications for the criminal justice system. 

Click here for Part One.

Part Two looks at legal recognition of those with FASD within the system and effective ways for lawyers to work with them for better outcomes.

Click here for Part Two. 

 

Peter Hutchinson, PDS

 

 

 

 

The Banksia Hill Project was the first study in Australia to assess and diagnose young people in a youth custodial facility for Fetal Alcohol Spectrum Disorder. 

The research team led by Professor Carol Bower and Clinical Associate Professor Raewyn Mutch from the Telethon Kids Institute worked with more than 100 young people aged between 10-17 years incarcerated in Western Australia’s only youth detention facility, Banksia Hill Detention Centre.

Nine out of ten youth examined were found to have some form of neuro-disability and one in three was found to have FASD. 

More information

The Banksia Hill Project - Findings and Recommendations

Almost every young person in WA detention has a severe brain impairment | The Conversation

Young offenders must be screened for fetal alcohol spectrum disorders before sentencing | The Conversation

What can Justice Professionals Do? |The FASD Hub Australia 

REFRAME training - an evidence-based program for frontline justice professionals

Fetal alcohol spectrum disorder and youth justice: a prevalence study among young people sentenced to detention in Western Australia

Fetal Alcohol Spectrum Disorder (FASD): Knowledge, attitudes, experiences and practices of the Western Australian youth custodial workforce

David M. Boulding is a former lawyer based in Vancouver, Canada, who has worked in the areas of criminal defence and family law, and is an international expert on Fetal Alcohol Spectrum Disorder and other neuro-behavioural disorders.

He wrote this open letter in for other lawyers working with those who may be impacted by FASD, to enumerate the ways in which he saw the justice system failing those with FASD.

Please note: this was written in 2001, so ‘Fetal Alcohol Syndrome’ or ‘FAS’ is now referred to as Fetal Alcohol Spectrum Disorder or FASD.

What is remarkable about David’s letter and why we include it here, is that little has changed in that time globally since then – and it’s a great text for any client-facing justice professional to read and ponder.

There’s more about David here and there’s also a series of videos he made for the Queensland Government in 2008 (each are about 9 minutes long). 

Fetal Alcohol Syndrome and Fetal Alcohol Effects In the Criminal Justice System

Mistakes that I have made with FAS clients

My remarks are tentative and personal. There are probably more mistakes I have made and perhaps I am unaware of them or I choose to remain unaware.

It is embarrassing to admit my mistakes. My intention here is not just to confess, although this paper clearly is a confession by one lawyer who believes that the Canadian legal system has failed FAS clients. I hope to show in this article that there is hope. We can change how lawyers, clients, police, judges, probation officers, prison guards, and family members work with FAS clients.

The list of my mistakes as a lawyer

1. I assumed that both my young offender FAS clients and my adult FAS clients could be helped by using standard terms of Probation Orders in the Provincial Court.

2. I assumed that my FAS clients could tell the Judge what happened in a way that would make sense.

3. I assumed that my FAS clients would be able to demonstrate remorse to the Sentencing Judge.

4. I assumed that after my clients were caught for the third or fourth time for the same offence and in the same set of circumstances that at least they would learn to get caught for either another offence, wear gloves, or not be surprised that they were caught.

5. I assumed that my FAS clients understood the notion of consequences: if you steal from cars and are caught, you will go to jail.

6. I assumed that my FAS clients understood the notion of time - three days in jail is not the same as three months in jail.

7. I failed to tell my FAS clients the same important lawyer/client advice over and over again. Perhaps I should have handed my FAS clients a typed handout setting out what a guilty plea means and the specific short and long term consequences. I assumed that because we had been to Court many times that my clients would know that they should not interrupt the Crown Prosecutor during a "Show Cause Hearing", correct the Crown Prosecutor's facts and therefore admit that they were there and that they did it.

8. Although I knew the parents of my clients, I failed to discuss with the parents the apparently "crazy" situation. I knew that the parents had had severe drinking problems for years, but I never asked anyone about the home life and I never asked my client about his/her parents' drinking. I never directly asked the parents about maternal drinking during pregnancy.

9. I was always puzzled and failed to understand that there is a good reason why, in the Pre-Sentence Reports of the Probation Officers, my FAS clients seemed to "shoot themselves in the foot". My FAS clients participated completely and without guile in their Pre-Sentence Reports. I failed to understand that the reason they were so candid, up front, and straight with the Probation Officers was that they did not know how to play the "PreSentence Report" game. My FAS clients were impressionable, suggestible and easily mislead and misunderstood. It was easy for the Probation Officers to get them to give the answers that the Crown oriented Probation Officers wanted. My FAS clients did not understand the vocabulary that lawyers, judges and probation officers use every day. My FAS clients were eager to please. I failed to see that they were speaking against their own interests. A common example was a client's admitting to either drug or alcohol use but failing to mention frequency or context.

10. I failed to consider that there were some offences, in some situations, where I should have considered a Not Criminally Responsible By Reason of a Mental Disease (NCRMD) application. At least I might have begun to gather some neuropsychological data years ago.

11. I failed to consider breaches of the Canadian Charter of Rights and Freedoms, although I found that most Crown Prosecutors were helpful in reducing the number of the charges. Often there were 13 or 14 separate counts. I never noticed that my clients had long Criminal Records and almost always pleaded guilty. I did not realize that there was a behavior problem at the brain level. I failed to look past the standard phrase "anti-social disorder." I failed to see that my clients were not learning by experience and that a Charter breach from Section 15 Equality Before the Law was something I should have considered. These clients were not being treated equally and the system had failed to accommodate their special needs. A brain injury by definition makes you a "special needs" person. FAS clients suffer a lifetime of brain injury inflicted by a mother who drank alcohol during prenatal fetal development.

12. I failed to consider a psychological or neurological assessment at any time because my clients seemed so pleasant. My clients did not seem to have any outward signs of psychological difficulties. They did not have any drug or alcohol problems. I failed to consider that there might be something wrong with their brain.

13. I failed to see that behind my clients' cheery, positive presentation of self, lurked another problem. To most judges, police officers, probation people, and other lawyers, my clients did not present themselves as really bad kids. My clients tended to present themselves as first-time offenders who had made some silly one-time "mistake". The problem was they actually had long Criminal Records for those same "mistakes".

14. I failed to ask Social Services for records about the family. I never looked at any early medical records for my clients. I never considered looking at any medical records.

15. I failed to note that my FAS clients were usually the number two or number three person involved in the offense, but that it was always my FAS clients that were caught. I did not recognize that there must be a reason that other people initiated the offences and were rarely arrested while my clients were always caught.

16. I failed to see that there was no real escalation in the offenses. The marijuana-to-heroin jump never happened. The auto theft-to-robbing jewellery stores jump never happened. I failed to see that this lack of escalation indicated the lack of a professional criminal element or what I call "real criminality," characterized by mean, nasty, and cruel behavior. I believe the offenses involved an absolute moment-by-moment "I want, I take" mechanism as opposed to some deeply ingrained refusal to follow rules. My FAS clients did not present as outlaws, but as serial opportunistic criminals - repeaters of first-time offender behavior.

17. I failed to notice that when my clients were telling their story, there were blanks in their memories or parts of the story were just not available. My clients did not remember important facts. My clients did not know the answers to some of my "and then what?" questions. I failed to take detailed written instructions for the offenses because they were so similar and were almost always repetitions of the same facts. Had I asked the clients to write out, in detail, what happened, I might have eventually seen the need for neurological help.

18. I failed to understand the nature of my client's impulsive activity because they told their stories in an amusing and funny way to both the police officers and me. I failed to look past the client's rather humorous and engaging presentation of self.

19. I failed to get written instructions and keep a running file on my Fetal Alcohol Syndrome clients' criminal activity. If I had sat down with them and had them write out their instructions, I might have seen a chance or found some way of getting the message "Don't do this again" to sink in. Nevertheless, I may still be in denial in terms of not understanding the scope of the brain injury. I failed to see that my clients did not understand while they were doing it, that stealing from cars is wrong.

20. I failed to see that jail had no effect on my clients' behavior. The main reason they didn't want to go to jail was that they couldn't be with their friends. If they did go to jail with friends, the experience did not seem to have any impact. On two occasions, one FAS client escaped with his cousin; my client was caught - his cousin remained at large for months.

21. I failed to talk to other lawyers and other probation officers about the particular set of facts that kept reappearing.

22. I never asked one of my FAS clients' mothers directly about alcohol consumption, perhaps out of some sort of misinformed political correctness or perhaps because I was too shy. I didn't want to embarrass the mothers, as many of these women were aboriginal women, who clearly had too many difficulties to begin with. I never asked about alcohol consumption patterns in the home. Quite often, these mothers were in tears when their sons were in jail. I simply did not fully understand the family circumstances.

23. Although I acted for most of the family members, I never sat down and drew out a family tree and tried to figure out who was who and what family member had what particular problem. I never put into place structures that would help my client with follow-through, such as giving the Probation Officer the telephone number of the most dependable relative or putting into place some type of back-up or support system to check on the client in an ongoing way.

24. My FAS clients often did not follow through with basics, like showing up for appointments, being on time, going to the right places, or conducting themselves appropriately. I tried to simplify Probation Orders to make it as easy as possible because I thought my client just could not handle complex orders. My assumption that my clients were not interested or did not care was wrong: they could not structure the pieces of the puzzle together in a logical and meaningful way.

25. I did not understand that this inability to handle complex notions of responsibility and consequences was something I needed to consider. I should have asked myself, "Is he getting a fair trial"?. I failed to ask, "Why all the guilty pleas?" I failed to consider "fitness for trial," because to the outside world, they seemed okay. For example, although one client had only an eighth-grade education, he played basketball, and he seemed to be one of those kids who just did not like school. I failed to look at the whole person in the context of Fetal Alcohol Syndrome and criminal Courts.

26. I failed to sit down and write out all of the various excuses my FAS clients gave for the various offences. Had I taken the time to write down and study the 10 or 15 excuses, I would have recognized the need for professional help. Instead, I kept treating each offense in isolation, not understanding that it was the same crazy offense over and over again, with outlandish rationalizations, or simple-minded explanations.

27. I failed to see that often within the aboriginal community, aunts distantly related to my FAS clients understood there was a problem and instinctively took care of my clients for various periods of their lives. It was during those periods of intense supervision that my FAS clients were crime-free. However, as soon as that supervision went away, leaving my clients alone, it was predictable that they would return to familiar criminal behavior.

28. I did not notice that constant supervision by an appropriate parental authority corresponded to a lack of crime. I never understood that there was an impulse control problem, even though almost all of the crimes were related to acquiring household goods or getting immediate pleasures, as opposed to crime requiring any sophisticated planning or violence. There were, of course, some exceptions.

29. I failed to see that my clients were not competent thieves. They did not plan. They were opportunistic and impulsive. For example one client spent ten minutes breaking into a car, while being observed by the police.

The biggest mistake

The biggest mistake I have made as a lawyer regarding dealing with clients who suffer from Fetal Alcohol Syndrome was my lack of political awareness. I am now aware that the list of my mistakes is going to cost my clients time - time spent in jail. My clients are paying for my mistakes. It is my opinion that the Government of British Columbia is complicit in my clients' criminalization. The British Columbia Government is criminalizing the mentally compromised. My clients are as brain- injured as victims of Strokes or Alzheimer's Disease. The Government refuses to recognize Fetal Alcohol Syndrome as the single biggest cause for jail overcrowding and overloaded probation officers, overworked judges, and overworked prosecutors.

I failed to see that if my clients were old, with Alzheimer's Disease, instead of 20 years old, male and with a long criminal record, they would be getting many services. Instead they are labeled as "antisocial" and sent to jail.

The first step

This paper argues for systemic change. This paper hopes to persuade you, the reader, that the first step in preparing for Court is securing an Assessment for Fetal Alcohol Syndrome by doctors trained in assessing Fetal Alcohol Syndrome.

My client is going to jail. Lawyers, police, corrections officials, probation officers, the family, and, most of all, the clients need to know about Fetal Alcohol Syndrome and how Fetal Alcohol Syndrome has affected my client. The B.C. Government refuses to pay for a Fetal Alcohol Syndrome Assessment. The Legal Services Society also refuses to pay for a Fetal Alcohol Syndrome Assessment. This is wrong. I hope a Judge will order that the Attorney General pay for such a needed procedure. Forensic Psychiatric Services admits that its medical staff have no specialised expertise in the area of Fetal Alcohol Syndrome.

The process of my education

The process of my education has been an accelerated and sad learning curve. Unfortunately, my clients suffered because I had to learn the hard way. My clients did not have a proper Fetal Alcohol Syndrome Assessment because I failed to consider it some six years ago. Will I see these clients again? I am certain of it. It is my hope that a routine assessment for Fetal Alcohol Syndrome is made for each new client who enters the criminal justice system. An assessment done today will cut down on repeat crime, save money for the judicial system, and save years of heartbreak for the families.

David Boulding

 

Social Workers

 

There is strong evidence that although social work support can and should play a positive role in both prevention and support of FASD, most social workers in Aotearoa/New Zealand feel under-informed on how to effectively work with those impacted by it – see Auckland University research from their 2022 survey in the tab below.

Currently, for those working with tamariki and rangatahi affected by FASD, the support standard is set by Oranga Tamariki. 

Click here to go to the OT Practice Centre: 'a resource for Oranga Tamariki practitioners for must-dos, how-tos and guidance in their work with tamariki and their whānau'. You'll find information on:

  • practice approach
  • intake
  • assessment and planning
  • interventions
  • adoptions
  • residential care.

 

In 2022, researchers at the University of Auckland conducted an online survey with social and community workers to explore their knowledge, attitudes, practice and experience working with people with Fetal Alcohol Spectrum Disorder (FASD). The survey was funded by a University of Auckland Faculty Research Development Fund.

Over 200 social and community workers completed the survey including but not limited to social workers, support workers, students, probation and correction officers, health promoters, youth workers, case managers and clinical workers. 

  • Most participants were aware of FASD but reported only having basic understanding of FASD.
  • Almost half of participants believed, incorrectly, that diagnosis of FASD would enable an individual to access Disability Support Services.
  • Around a third of participants believed that a diagnosis of FASD would not improve outcomes for those affected by FASD.
  • A majority of participants believed that diagnosis of FASD might lead to a child or their family being stigmatised.
  • Most participants indicated that FASD was relevant to their work and would require a change in their behaviours and practices to best support people with FASD, while very few felt prepared to support someone with FASD.
  • Only a third reported they had received training related to FASD in the last five years and few were aware of the resources provided by Te Pou [click here to access these FASD-informed training modules for front-line professionals].

These findings suggest that more resources and training is required to support social and community workers to effectively support people with FASD. This includes information on best practice guidelines to support people with FASD and information on available resources to support family members and people with FASD to access support. 

McCormack, J. C., Chu, J. T. W., Wilson, H Rahman, J., Marsh, S., & Bullen, C. Knowledge, Attitudes and Practices towards Fetal Alcohol Spectrum Disorder in the New Zealand Social and Community Sector: An Online Survey, Manuscript in preparation.

 

Scottish social charity Iriss published an 'Insight' research paper for social workers, specifically focusing on FASD, on 14 December 2022.

It acknowledges similar problems to the ones we experience here in Aotearoa NZ: "Anecdotally, social workers rate their knowledge and understanding of FASD as low and would not ordinarily know how to upskill themselves. This Insight is one step toward addressing that gap by covering the long-term impacts of FASD and how social work involvement can support better outcomes for people. Social work support can be preventative, and thereby, reduce escalation, avoid longer-term problems, and help break cycles of vulnerability, marginalisation and adversity.

In an ideal world, social workers would, in the name of social justice, be at the forefront of primary prevention. Unfortunately, that ideal world is not necessarily, or usually, the one where most social workers live and work. Frequently, social workers enter the picture ‘after the fact’; that is, once harm has already occurred. Then, the priority is to intervene quickly and decisively to help those affected and to ameliorate the adverse circumstances."

Key points

  • Given the prevalence, severity and impact of fetal alcohol spectrum disorders (FASDs) on individuals and communities, there should be better social work knowledge and understanding of, as well as support for, these disorders
  • Social workers can play a more positive role in the prevention and identification of FASD, as well as in services supporting those affected by it
  • Increased awareness and learning opportunities, and more encouragement and resources are necessary for social workers to fulfil their potential in this field

Click here to access the full Insight from Iriss. 

Support Workers

 

There's a series of excellent 'Tip Sheets' created by the FASD Network of Saskatchewan that professionals in Aotearoa can refer to in the absence of New Zealand equivalents (linked to here with our thanks!). 

For support workers (respite carers, creative therapists etc) this downloadable pdf contains valuable information on topics such as: 

  • general communication
  • advocating
  • appointments
  • dealing with dysmaturity
  • dealing with executive function challenges

and much more. 

Download Tips for Support Workers

 

  

In 2022, researchers at the University of Auckland conducted an online survey with social and community workers to explore their knowledge, attitudes, practice and experience working with people with Fetal Alcohol Spectrum Disorder (FASD). The survey was funded by a University of Auckland Faculty Research Development Fund.

Over 200 social and community workers completed the survey including, but not limited to, social workers, support workers, students, probation and correction officers, health promoters, youth workers, case managers and clinical workers. 

  • Most participants were aware of FASD but reported only having basic understanding of FASD.
  • Almost half of participants believed, incorrectly, that diagnosis of FASD would enable an individual to access Disability Support Services.
  • Around a third of participants believed that a diagnosis of FASD would not improve outcomes for those affected by FASD.
  • A majority of participants believed that diagnosis of FASD might lead to a child or their family being stigmatised.
  • Most participants indicated that FASD was relevant to their work and would require a change in their behaviours and practices to best support people with FASD, while very few felt prepared to support someone with FASD.
  • Only a third reported they had received training related to FASD in the last five years and few were aware of the resources provided by Te Pou [click here to access these FASD-informed training modules for front-line professionals].

These findings suggest that more resources and training is required for social and community workers to effectively support people with FASD. This includes information on best practice guidelines to support people with FASD and information on available resources to help family members and people with FASD to access support. 

McCormack, J. C., Chu, J. T. W., Wilson, H Rahman, J., Marsh, S., & Bullen, C. - Knowledge, Attitudes and Practices towards Fetal Alcohol Spectrum Disorder in the New Zealand Social and Community Sector: An Online Survey. Manuscript in preparation.

 

Mental Health

 

The following is a selection of academic readings for mental health professionals in New Zealand. 

 

New Clinician's Guide to diagnosing FASD

An American book by Mansfield Mela published in early 2021 will be essential reading for those in the mental health sector: 

“The book provides clinically relevant information for mental health experts, but it goes beyond that to provide sufficient content to improve clinician’s level of comfort with information to which they have hitherto been exposed.  Clinicians in this context include professionals in the medical, mental [health], educational, vocational, legal and correctional, child welfare, and others in the health and social services sectors who encounter individuals with a hidden disability… It covers information missing from curricula about the long-term effects of … [FASD] …and includes clinical information on the mental disorders relevant to FASD.”

Click here for more info and ordering. 

 

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Neurocognitive Function and Fetal Alcohol Spectrum Disorder in Offenders with Mental Disorders

Mansfield Mela, Katherine Flannigan, Tara Anderson, Monty Nelson, 
Sudheej Krishnan, Chibuike Chizea, Sarah Takahashi, Rohan Sanjanwala

 

The purpose of this study was to characterise the life experiences and examine the neurocognitive profile of a group of adult forensic psychiatric outpatients. We also investigated potential differences between offenders with FASD and the rest of the sample... The rates of mental disorders within offending populations are high, and current evidence shows that they are increasing..."

Click here for a link to this paper.

 

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Fetal Alcohol Spectrum Disorder: A Review for Mental Health Professionals

A more comprehensive understanding of FASD among mental health professionals should lead to improvements in identification, intervention, and treatment strategies, as well as an informed perspective when making recommendations on child welfare, custody assessments, competency to stand trial evaluations, and diagnostic and treatment planning. The overall goal of this article is to provide a review of FASD for mental health professionals... The following information is offered to assist in the assessment and development of individualised rehabilitation/treatment plans for individuals with FASD ..."

Click here for a link to this article.  

 

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Substance use and addictions

New FASD Resource for Addictions Professionals

The Canadian Fetal Alcohol Spectrum Disorder Network (CanFASD) leads the world in FASD response; Aotearoa New Zealand and Australia often follow their lead because of similarities in our demographics (including indigenous communities) and societal attitudes towards alcohol and substances.  

CanFASD has recently published a new guide for addiction professionals entitled Moving Towards FASD-Informed Care In Substance Use Treatment. The guide provides evidence-based practices to support people with FASD who are in treatment for substance use.

Click here to download the new guide, or read on for a brief intro on treating those with FASD.

We are enormously grateful, as always, to CanFASD for enabling us to share this guide.

Substance use and FASD

Fetal Alcohol Spectrum Disorder (FASD) is a lifelong disability impacting the brain and body of people prenatally exposed to alcohol. FASD impacts at least 4% of people and is more common than autism, cerebral palsy, and Down syndrome combined.

People with FASD experience high rates of alcohol and substance use and misuse. One Canadian study found that 38% of people with FASD were using or misusing alcohol and 46% other substances.

However, those affected by FASD have brain-based differences that can make it hard for them to succeed in traditional substance use treatment. These differences can impact language, memory, attention, learning, participation, emotional responses, and adaptive functioning.

Research has shown that a key barrier to addiction treatment success is a lack of knowledge on the part of professionals about FASD and how it impacts treatment.

CanFASD have given ten points to consider when treating those with FASD.

Adjusting substance use treatment for those with FASD

1. Reframe how you think about behaviour

Behaviours in people with FASD may relate to the brain-based differences they experience. For example, missing appointments, often losing or forgetting to bring materials, and missing medication doses can be related to memory impairment. Providing time management assistance (i.e. visual schedules) and creating a strong structure and routine can help.

2. Identify and screen for FASD

With high rates of substance use in this population, it’s important to know if the individual you are treating has FASD. This guide will give you the information you need to adopt the appropriate FASD screening tool for your setting.

3. Support entry into programming

Take the time to intentionally consider the barriers to eligibility and access that prevent people with FASD from starting or even seeking out your treatment program.

4. Adjust your treatment to the individual

Like all clients, a ‘one size fits all’ approach isn’t effective for people with FASD. Adjust your approach to fit the needs of each individual by considering their experiences, collaborating with external supports, and incorporating targeted interventions.

5. Support transitioning out of treatment

Make a plan to phase the individual out of treatment that will encourage them to maintain healthy outcomes. The plan should focus on their strengths, consider their experiences and needs, and collaborate with external supports and services.

6. Collaborate with other external services

People with FASD have complex needs and often access other heath, social, housing, legal, transportation, childcare, and cultural services. Consider the individual’s needs and facilitate referrals or connection with external services.

7. Integrate FASD prevention into treatment

The stigma surrounding substance use in pregnancy can be a barrier to accessing treatment. Engaging people in safe and respectful discussions about alcohol and substance use can be critical to ensuring they access and stay in treatment, and is an important factor in reducing alcohol use in pregnancy.

8. Provide continuing FASD training and education

Ensure each member that is involved in the care and treatment of people with FASD is well trained in how to best support these individuals. This includes those who administer treatment, as well as administrative and management personnel.

9. Use harm reduction, relational, and person-first approaches

Treatment should be culturally safe, strengths based, trauma-informed, sex- and gender-informed, and should promote interdependence. Recognise that there can be healthy solutions beyond abstinence. Consider adopting creative and relational approaches for those with FASD to better support their wellbeing.

10. Evaluate the program success

Make sure your program is accountable and responsive by monitoring and evaluating your program. This can help you to adjust things that aren’t working and to know what techniques may be more effective.

Moving Towards FASD-Informed Care In Substance Use Treatment explains these concepts in much more detail. Download the full guide here.

 

Training for professionals

Here are some options for professional development but there are many more online. 

 


Otago University

A brand-new certificate was launched at Otago University in July 2022 which is aimed at the justice sector but is a good grounding for the wider implications of early intervention.

Note: The University is running this paper again in 2024.

SOCI404: Exploring Neuro-disability in Health, Welfare and Justice Systems is taught by FASD specialist Professor Anita Gibbs.

It's be aimed at professionals but caregivers can also do it, particularly if they have already completed some education already. It runs as a 400 level course at the University of Otago, for both distance and on-campus learners. The course can be completed as a stand-alone certificate or alongside other courses at Otago.

For up-to-date info, click here or contact [email protected] 

 


MHERC - Mental Health Education and Resource Centre, Christchurch

MHERC have an excellent series of ongoing online workshops which sometimes specifically include neurodisability and FASD. 

 


The University of Western Australia

The University of Western Australia ran some new FASD courses in 2022 which were well-received and will be running annually. All of the courses are primarily online and can be accessed from anywhere in the world.

There's a graduate certificate and three short introductory courses which would contribute credits towards the grad cert. 


• FASD short courses (micro-credentials)

The university's new FASD short courses aim to provide students with foundational knowledge required for understanding FASD. Both micro-credentials will cover the basic characteristics of FASD and will include lived experience perspectives on FASD. Although each micro-credential can be accessed independently, it is recommended that students intending to complete both micro-credentials follow the order outlined below.

Both short courses will have two offerings per year: April to July and July to September. Within each teaching period, the students can complete the coursework at their own pace. 

There are no entry requirements for these short courses. Students completing both micro-credentials will be eligible to receive course-credit for the first coursework unit in the Graduate Certificate in the Diagnosis and Assessment of FASD developed at UWA by A/Prof Carmela Pestell and Adjunct Prof James Fitzpatrick (note: the Grad Cert does have entry requirements).

The link to the application portal can be found on the course webpages (outlined below).

1) History and Basic Characteristics of FASD

This micro-credential will cover the historical and social context of FASD and common comorbidities.

Click here for more information.

2) Considerations for FASD Diagnosis

This micro-credential will outline the relevant ethical issues in FASD assessment and diagnosis and intervention strategies.
Click here for more information. 

3) FASD Supervision

This micro-credential will provide students with a background in psychology, speech pathology, social work, occupational therapy, physiotherapy, nursing, medicine and other relevant disciplines with an opportunity to receive group supervision on Fetal Alcohol Spectrum Disorder (FASD) cases. It's suited to clinicians who have had prior FASD training, and have a current FASD caseload.

 

• Graduate Certificate in the Diagnosis and Assessment of Fetal Alcohol Spectrum Disorder (FASD)

The aim of the Graduate Certificate is to provide clinicians with the specialist knowledge and clinical skills required to participate in team-based assessment and diagnosis of FASD. This course is targeted towards clinicians with a background in psychology, speech pathology, social work, occupational therapy, physiotherapy, nursing, medicine and other relevant disciplines.

Further information about the course, as well as a link to the application, can be found on the UWA website here.

 

Dr Kirsten Panton is the lecturer for all of these courses – she’s passionate about raising awareness and knowledge of FASD across Australasia and can be reached for further info at [email protected]

Note: registrations close one week prior to start of course.

 



NOFASD Australia

Our closest partners, NoFASD Australia, launched the Australian Foundations in FASD online training course in 2020. This is an evidence-based interactive online learning resource consisting of 7 modules which take around 20 minutes each. It’s a general introduction to FASD including description of impacts, assessment, interventions and prevention. The course is free.

You can watch the 45 second introduction video here.

There are a number of other free webinars available free on the NOFASD website here, including ones on supporting tamariki within education and child to parent violence, as well resources for occupational therapists and educators.

 


Explained by Brain Online Training for Parents and Carers

Dr Vanessa Spiller is a clinical psychologist with over 20 years experience, who works out of Brisbane, Australia and has been a valuable source of information and presentations for FASD-CAN in NZ. Her 'Explained by Brain' training has helped many parents of tamariki with FASD. 

Her specialised training has streams of content - those focused on FASD facts, the Explained by Brain approach and the brain domains impacted by prenatal alcohol exposure (13 modules), those focused on managing complex behavioural symptoms such as aggression, confabulation, sexualised behaviours etc (12 modules) and those that focus on the needs of parents and carers e.g. self-care and how to advocate for your child (10 modules). Modules include videos, readings, resource downloads, personal reflections, quizzes to check your learning and links to useful external resources such as podcasts and additional videos on specific topics.

Go to the Explained by Brain website

 


The FASD Collaborative Project

This is an international FASD learning project which was instigated in late 2020. The FASD United Affiliate Network in the United States identified a need to increase effective supports and evidence-based training at a national level, and FASD organisations from around the globe answered the call. They joined forces to create more dynamic FASD systems of care internationally and to date there are 30 organisations participating in the 2021-2022 series of webinars, which ran online throughout 2022. 

Click here for a list of post-webinar recordings you can access online – and don't forget to sign up to their mailing list for information on what will be coming up in future!

 

 

 

 

Understanding more about FASD

Want to learn more? To find out more about individuals with FASD, check out this page.

 

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More resources around FASD

For further helpful tips, it's worth having a look around here.

 

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