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

 

The school environment is extremely challenging for most students with FASD, irrespective of IQ or background. 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.

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

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

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.


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. 

 

 

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

 

* Important: FASD in NZ Justice Survey

Researchers from the University of Auckland are conducting a research to understand the knowledge, attitudes, and awareness of fetal alcohol spectrum disorder (FASD) among New Zealand judges and lawyers. As a Judicial staff member, we invite you to take part in a short survey about FASD.

The responses collected from the survey will remain anonymous and will be used to inform guidelines and National policy for addressing FASD, particularly in the Justice setting. You will not be asked to comment on your employer directly, and they will not have access to survey data.

If you are interested in taking part, please click on the link below to access the Participant Information Sheet and the survey. It will take approximately 10 minutes to complete.  If you have any questions about the research, please email [email protected]

Thank you for your participation. Click here to go to the survey.

Scroll down for more information on FASD in the NZ justice system.

 


 

According to a 2019 study in Canada, over 30% of individuals in the penal system presented with FASD, and the Banksia Hill Detention Centre study in Australia 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. Click on the image below to watch.

 

 

 

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.

 

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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Social Workers

 

For social workers in Aotearoa, New Zealand working with tamariki and rangatahi with FASD, the 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

and much more. 

 

 

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.

 

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.

 

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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