If you suspect your child has been exposed to alcohol while in the womb and you have observed developmental or behavioural issues; or if you have had a positive diagnosis of FASD for your tamariki, we are here for you.
If you are a birth parent, we are fully committed to non-judgmental support and advice – almost all of our board members and staff have lived experience of parenting tamariki with FASD.
Connecting and informing are our main roles, but many of our activities – such as training for caregivers and whānau, are developing. Watch this space.
It can be very tough being a parent or caregiver of an individual with FASD.
You need to become your child's PA/coach and mentor and it can feel like a 24/7 job. To keep yourself sane and able to stay on the job, self-care is extremely important. If possible you will need as much backup as you can get, and have opportunities for respite.
We have an info-sheet available for download called 'I am a Caregiver', which details the requirements of a tamariki / rangatahi and adult with FASD, with some of the challenges and your role as their caregiver. Download it here.
Here are some common scenarios with ideas to make things a little bit easier.
Communicating patiently and effectively with your FASD child can make the difference between getting out the door for school, avoiding meltdown (theirs or your own) and generally keeping the peace. Some useful phrases for your own internal dialogue include:
“Can’t not won’t.”
Remember that FASD is caused by brain damage.
“Ten-second kids in a one-second world.”
People with FASD need more time than others to process and understand.
“Gravel roads, not highways.”
Atypical neural pathways associated with FASD are easily disrupted.
“Brain, not blame.”
If you find yourself making unhelpful judgements, remember this phrase.
“Adapt the environment, not the person.”
Safe, supportive environments are key for people with FASD to thrive.
“Short, simple, specific, slow.”
Effective communication is essential for people with FASD who won't get sarcasm, irony or often, jokes. Getting them to repeat instructions is also encouraged.
Everyone knows that getting enough sleep can be a huge part of our effectiveness, functionality and mood.
But for those living with FASD, sleep disorders have been well-documented as a problem on a whole new level. Getting to sleep and staying asleep is very hard for them, and the lack of good sleep means that behavioural issues are elevated. Around 80% of parents and carers of children with FASD say their children have problems with sleep. These can include:
It's a big subject, but there are some basic tips which are essential, including avoiding pre-bed excitement, creating a calm quiet bedroom with low stimulus (no clutter), using ear plugs or headphones and heavy blankets. No screen time and calming music can also be helpful.
• We have curated some of the most helpful tips and combined them with our own kaimahi / staff's lived experience to created a Fact Sheet on 'FASD and Sleep' – click here to read.
• A June 2023 report by the Edmonton Fetal Alcohol Network in Alberta, Canada, was prompted by various recent studies and has some helpful strategies – click here to read.
• An Australian three-phase sleep study is underway (June 2023) to develop clinical sleep guidelines at the Queensland Children's Hospital in Brisbane. The first two phases of the study are underway, involving a survey for the parents of children living with neurodisability and the development of a sleep monitoring mat that gathers movement and sound data in a less invasive way than traditional methods.
The third phase will be a randomised controlled trial of different sleep interventions to treat chronic insomnia in children with neurodisability, evaluating which strategies are most effective. We'll keep you posted.
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 – and movement can also be triggering for them.
When getting to school can be derailed for the day by a scratchy jumper, or loud noises, it's important to anticipate sensory overload scenarios before they happen – and it can be handy to have noise cancelling headphones, sunglasses or a fidget toy on hand.
• Click here for information from Canada about sensory issues, specifically for children with FASD.
• Click here for information which although not specifically targeted to FASD, has much helpful information.
• Click here for NZ-specific info about sensory issues not specifically targeted to FASD.
• There's a helpful tip sheet here about dressing a child with sensory issues.
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 Fetal Alcohol Spectrum Disorder 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 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.
For a downloadable worksheet about initialising 'heavy work' click here.
Child and adolescent-to-parent violence and abuse (CAPVA) is a frequently hidden issue which often arises in families caring for an individual with FASD. It is a complex issue which continues to be misunderstood and minimised outside of the family home.
If you are experiencing CAPVA please be assured that it is not due to poor parenting – it can be because the young person in your care is struggling to regulate and/or make sense of their emotions. This can result in a need to dominate, coerce, and gain control over their parents/caregivers.
Displays of aggression and violence by children/adolescents towards adults that are intended to threaten and intimidate and put family safety at risk can include:
People experiencing CAPVA report that they are always in a state of hyper-vigilance and feel like they are walking on eggshells waiting for the next explosion. Some of the common mental health effects of family violence are PTSD, depression, anxiety, low self-esteem, suicidal thoughts, hopelessness and fear of the future.
Published 24 January 2024
Professor Gibbs is a registered social worker who has taught social work, sociology and criminology courses for 20 years at the University of Otago. Her research interests include Fetal Alcohol Spectrum Disorder (FASD) and complex disabilities, especially identifying best practice in helping families and best evidence for professionals in their interventions with families.
Abstract: Child and adolescent-to-parent violence and abuse (CAPVA) refers to abusive and violent behaviours by children towards their parents or primary caregivers. The abuse and harmful behaviours can include a full range of physical, emotional, verbal, financial, and material actions over prolonged periods of time, from childhood to young adulthood. Parents and caregivers of children with neuro-developmental conditions are vulnerable to CAPVA, and little research has been undertaken exploring the experiences of caregivers of children with fetal alcohol spectrum disorder (FASD).
In Aotearoa New Zealand, 56 caregivers were interviewed using semi-structured interviews, and over half identified significant levels and impacts of CAPVA, including dealing with physical violence and frequent emotional abuse. Health and stress issues were present in all caregivers interviewed. Caregivers also identified how systemic ignorance and a lack of understanding from caring professionals led to parent blaming, a sense of shame and isolation. Yet caregivers also showed resilience and implemented strategies of de-escalation and distraction.
More specialised practice is needed in this emerging field of family violence and in how to support families with children who have FASD.
Click here to read the full article.
NoFASD Australia have produced a webinar series called Child and adolescent to parent/carer violence and abuse presented by University of Otago Professor Anita Gibbs (see above).
These webinars look at the issue of CPV and the impact that it has on family members, how professionals respond and strategies that may help to reduce the family distress.
Click here to go to the first webinar, and here for the second.
It's essential to keep yourself safe in order to be there for your child in the future.
If you are in immediate danger ring 111. If unable to speak, press 55. Let them know that your child has a neuro-disability.
Shine Family Violence Agency is a National organisation offering a free helpline, training, and consultancy throughout New Zealand. Call 0508 744 633 for 24/7 help and counselling.
If you are in crisis or feeling suicidal, please reach out to Lifeline Aotearoa Inc on 0800 543 354.
There is much international information on FASD medication online – it's a very big subject however, and we are currently working on some basic guidelines for Aotearoa NZ.
However, in October 2022 we ran a webinar entitled 'Focus on Health: The Clinician's Perspective', in which medication is outlined by two experts from Taranaki. Watch it on our post-webinar recordings page here.
The first thing to establish in moments of extreme behaviour scenarios is whether you are dealing with a trantrum or a meltdown. They may look similar, but they have important differences. The chart below can help with this (thanks to TES teaching resources for this graphic).
Most parents and caregivers of tamariki and rangatahi with FASD have experienced meltdowns – you are not alone! They can happen anywhere and if it's in public, we all feel that others will jump to the conclusion that we are bad parents if we don't 'discipline' the child or young person.
We have developed a series of wallet cards for caregivers which can help with this – click here to check them out, download and print.
It's really hard to keep your own cool in a meltdown too, but here are some good educational options to help you be ready to cope in any situation.
• Taming tantrums vs. managing meltdowns
• FASDsuccess with Jeff Noble – Barb Clark FASD Educator on serious meltdowns
Nate Sheets of Oregon's Cognitive Supports has some particularly helpful videos on de-escalation - see below.
• Five unhelpful responses we have to escalated kids and adults
Finally, in calm moments, it's great to build self-soothing skills that you can workshop with your tamaiti or rangatahi to co-regulate with them (this builds trust). They can hopefully use these skills instead of other attempts at self-regulation as they get older (which can in some cases turn into substance use or self-harm).
• Four tips to teach self-soothing skills
Being a parent or caregiver of tamariki or rangatahi / children or teenagers with FASD can be tiring and very challenging. Whānau who have children with FASD are often under a great deal of stress.
It's important to do your best to look after yourself so when you need to respond to an extra-stressful situation (and there will always be those) you're in the best place to be able to stop and think about your options. If you're tired you may respond to melt-downs in ways which can make things worse – or yourself and your child – but if you have a bit of 'wiggle room' in your stress levels, it's better for everyone.
This will not always be possible however, even with the best of intentions, so don't beat yourself up if you can't always respond in the way you wish you could!
A recent (January 2024) research paper entitled Self-Care in Caregivers of Children with FASD by Carson Kautz, Jennifer Parr and Christie L. M. Petrenko found that practicing regular self-care could lead to lower stress and more satisfaction as a caregiver.
Their research found that the elevated levels of stress experienced by caregivers can negatively impact their mental and physical health as well as their the functionality of their families. High stress is also linked to a lower quality of life for caregiver and family (Reid & Moritz, 2019). Most caregivers will already know this!
Caregivers in the survey used a variety of strategies to engage in self-care: physical exercise, mindfulness, meditation, eating healthily and seeking social support. However, the article also pinpointed common obstacles that caregivers encounter when attempting to practice mindfulness, such as time restraints, limited resources and exhaustion.
Mindfulness is a way of learning to be present in the moment, rather than stuck in oppressive or circling thoughts about the past or the future. It's about maintaining an awareness of our thoughts, feelings, bodily sensations, and surrounding environment, through a gentle, nurturing lens.
Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them. When we practice mindfulness, our thoughts tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future.
Meditation usually is about sitting more formally, focusing on our breath or body sensations. You’re not trying to turn off your thoughts or feelings but learning to observe them passing by without judgment. It’s about training your mind in awareness and gaining a sense of perspective. It takes practice – people often say it's like a muscle and needs time to learn, but once a practice is established it can be extremely fulfilling – many say life-changing.
There are many online and local meditation opportunities – here are just a few:
• The SriChinmoy Centre offers free meditation classes in Auckland, Hamilton and Wellington year-round.
• Daily Calm is a free 10 minute guided meditation, which changes every day and has had over 20 million views. Spoken by American Tamara Levitt.
• Wu Wei Wisdom is another free meditation spoken by David James Lee, a Taoist Monk – from the north of England.
• Headspace is a very popular paid phone app, which delivers a guided meditation to you every day for the price of a takeaway coffee a week or less.
Care Matters is a NZ website which provides up-to-date resources for caregivers and whānau of disabled people. They also run workshops - both face to face and online. Follow them on Facebook to stay informed of these.
This page on the Care Matters site has a couple of video where NZ parents and caregivers talk candidly about what their experience is of caring, how they realised that they needed to prioritise self-care, and how they manage it.
Click here to watch the videos. (The second video is a continuation of the first, they have been broken into two due to length – the first is around 5 minutes, the second around ten).
Eileen Devine is a licensed clinical social worker with over a dozen years of clinical experience, the adoptive mother of a child with FASD, and a certified facilitator through FASCETS, Inc., a leading non-profit specialising in the neurobehavioral model.
She worked with NOFASD Australia to make a couple of fantastic videos to support caregivers of those with FASD.
To watch 'Building Carer Resilience #1', click here.
To watch 'Building Carer Resilience #2', click here.
Check out Eileen's own website here.
This presentation focuses on how understanding that FASD is a brain-based disorder helps to inform caregivers on how best to respond to behaviours often seen in FASD, and examines the importance of a true strengths-based approach.
Managing the stresses of caring for someone with FASD is inextricably linked with this understanding. There is also a discussion of the various stresses that caregivers experience and methods to manage them and care for oneself on an ongoing basis.
Dan Dubovsky has presented regionally, nationally and internationally on Fetal Alcohol Spectrum Disorders, focusing especially on interventions for children, adolescents and adults. For this work, his son Bill has been his mentor and best teacher. Dan has provided training for people working in mental health and substance abuse treatment on loss and grieving, psychopharmacology, development, violence in youth, anger management, team building, stress and burnout, transitions and more.
Click here to watch.
The map below of FASD diagnostic services in Aotearoa New Zealand represents information gathered by FASD-CAN in June 2023 on clinicians in Aotearoa who are currently able to provide an FASD assessment and diagnosis.
When you click on a pin, a window will pop up with information on the service available at that location. Alternatively, click on the list of services to the right which will zoom you in to the location.
Note 1: Please ZOOM IN to see all pins in any area – there are several services in both Auckland and Dunedin for example, but they’re very close together.
Note 2: Please click through on the 'Background to diagnosis in Aotearoa' tab below for further important information.
Note 3: Most of the private services will also travel outside of their region to undertake diagnostic services, so do check all the regions if there is not a service identified in your particular area.
Click on the map below to access interactive pins.
Disclaimer
In providing this information, FASD-CAN Inc. is not endorsing the quality of the assessment, diagnostic report, or the other support services offered by these diagnostic service providers.
If you believe there is an error in the information provided or you are aware of other FASD diagnostic services that are not shown on our map, please contact Kim Milne our Principal Advisor asap at: [email protected]
In response to increasing calls for information from our membership, FASD-CAN set out in June 2023 to establish the availability and location of FASD diagnostic services in Aotearoa. There is currently no other publicly available list of clinicians who can diagnose FASD.
We engaged a very experienced paediatric nurse to undertake this research on our behalf.
An early diagnosis is a key factor for good life outcomes for people with FASD so that appropriate supports and interventions can be put in place for families and at school.
Research shows that failure to engage at school makes rangatahi with FASD more likely to end up with negative life outcomes involving substance use, engagement in self-harm and high-risk scenarios, mental health challenges and involvement in youth and criminal justice.
When we refer to FASD diagnostic services we mean that the particular service or provider has had the specialist training to undertake an assessment to identify if a person meets the FASD diagnosis criteria.
An FASD assessment requires a clinician specifically trained in diagnosing FASD. Ideally, this would be done within a multi-disciplinary team including a paediatrician, neuro-psychologist, a speech and language therapist and an occupational therapist. Having a key worker to work with the family/ whānau during and after the process is also highly desirable.
New Zealand currently uses the FASD diagnostic guidelines developed by Canada, however their use is currently under review by the Aotearoa FASD Diagnostic Guidelines project commissioned by Te Whatu Ora, with a report due out in 2024.
In the questionnaire we sent to clinics and services, we included the following questions:
Some clinics and services chose not to share certain information for various reasons. Some failed to respond at all despite multiple attempts to contact them; these included some Te Whatu Ora sites.
We found only 13 services able to offer an FASD assessment and diagnostic service – but two of those (Linda Gow and Koru Specialist Services) had two separate clinics, so there are in fact 15 clinics in Aotearoa. Some services, such as The FASD Centre Aotearoa in Tamaki Makaurau, Koru Specialist Services and others, will also travel to other parts of the country to undertake an assessment.
Ten of the clinics are located in the North Island but there are only five in the South Island. Perhaps most disappointingly, there are only four Te Whatu Ora publicly-funded services, and they are all in the North Island: Northland, Hawke's Bay, Taranaki and Lower Hutt.
This means Te Whatu Ora does NOT offer publicly-funded FASD diagnostic services in Tāmaki Makaurau/Auckland, Bay of Plenty, Lakes District - Taupo/Rotorua, Gisborne, Wairarapa, Whanganui, Nelson/Marlborough, Canterbury, South Canterbury or Southland.
In some large regions such as the Waikato and the South Island, we found no publicly-funded service provider that could provide an FASD assessment.
Most privately funded assessments cost of between $3,000 - $7,000 which is far beyond most whānau can afford for such an essential service. We also understand from the information received that wait times vary and change, but can be up to two years for publicly-funded services.
Unfortunately, the results of this research have highlighted the lack of progress to improve access to FASD assessment and diagnostic services in our country.
In the FASD Action Plan 2016-2019, the Ministry of Health made a commitment to develop and test tools to support the diagnosis of FASD and to investigate ways to upskill existing clinicians and embed the tools into routine practice.
However, in contradiction of the Action Plan, our review indicates a decrease in FASD diagnostic assessment capability across Aotearoa.
FASD-CAN is extremely disappointed to note this lack of implementation of the Action Plan. Despite the acknowledged benefits of diagnosis described in the Action Plan, there has been no strategy developed to carry out this upskilling.
Funding and a cohesive professional development strategy is needed to provide more professional training to develop diagnostic capability and capacity.
Getting a diagnosis of Fetal Alcohol Spectrum Disorder is so much easier if prenatal alcohol exposure is already confirmed. This is why it's essential to avoid stigma for mothers – if they feel unsafe around telling assessors there was alcohol involved in their pregnancy, they may be less inclined to let them know, potentially resulting in an incorrect, or no diagnosis.
At FASD-CAN we believe no mother intentionally harms her child and we know that reasons for alcohol exposure can include addiction (this alone can be very complex) and unplanned pregnancy – around 40% of pregnancies in Aotearoa are unplanned. This can mean the mother has been drinking alcohol but is unaware she is pregnant. FASD is everywhere, in all walks of life.
We are 100% committed to non-judgemental support and compassion for all mothers.
There is essential information around avoiding stigma in the internationally-recognised FASD Language Guide and the FASD Common Messaging Guide (both on our Resources page).
There are ten brain domains which must be individually assessed to diagnose FASD. These include cognition (IQ), adaptive function (daily living skills), language, motor skills, attention, memory, executive function (reasoning and consequential thinking), scholastic function, neuroanatomy/neurophysiology (such as small head circumference or unexplained seizures) and emotion regulation (anxiety or depressive disorders, including labile or changeable mood).
You can download our info-sheet on the ten brain domains here.
In the first instance, if you know or suspect your tamariki has had prenatal alcohol exposure, it can be a good idea to go to your doctor for advice or for a referral to a community paediatrician. Be aware, however, that many caregivers have reported having to educate their GP about FASD so seeking a referral may be the better option.
Please note, there is much more information about the the process of diagnosis on our 'Understanding FASD' page.
There are a number of routes that can be taken towards an FASD diagnosis. It's never easy – but it's worth it.
• Privately
This is often the route caregivers or whānau go down, IF they have the resources, but it can be prohibitively expensive and there may be long waitlists. See our interactive map for services currently available around the country.
• Oranga Tamariki / Permanent Caregiver Support Services (PCSS)
If your child is being fostered by you, and they are under OT care or your child is eligible for PCSS support then they may pay for diagnosis.
• Ministry of Education
The other avenue is through the MoE (your learning support coordinator / SENCO / RTLB should know more about this) which may apply if you and the school are facing severe behavioural issues – this route can also be funded.
• Youth Justice
If a young person with FASD does end up in trouble with the law (see our advice around this here), the courts may send them for funded diagnosis. However early intervention will always have the best outcomes.
It can be helpful to talk to other parents who have been through the process in your area. To contact others, you could find a kanohi ki te kanohi (face to face) support group in your area – click here for our list of groups around Aotearoa.
We have also launched (April 2023) a monthly ONLINE caregivers support group – click here for more information and to join us.
You can also try our Facebook support groups:
FASD-CAN NZ Professionals & Parents Group | Facebook
FASD-CAN NZ Parent and Carer Support Group | Facebook
You could also direct your rangatahi with FASD (16 and over) to our new 'Individuals' page.
FASD-CAN Individuals Group | Facebook
The best outcomes towards living a good life for people with FASD depends on tailored intervention and management of the behavioural symptoms of FASD starting as early as possible, and this is dependent on a correct diagnosis. But there are further reasons that we encourage diagnosis if possible:
There is more information on FASD diagnosis on the links below
• Australia's FASDHub website – includes videos with whānau and individuals.
• Canada's CanFASD has an excellent new guide which came out in June 2023 – 'Caregivers Guide to Diagnosis'
Below is a list of funding which MAY be available for those who people with FASD and for those who care for them.
Please note that we would like to add to this list as more information becomes available – if you are aware of other possible funding sources, please let us know!
FASD is recognised as a disability by Te Whatu Ora / Health New Zealand and Manatū Haouora/ the Ministry of Health, but is not funded as a disability – unless the individual has an IQ of 70 or lower (i.e. an Intellectual Disability or ID). Less than 20% of those with FASD have an ID and a formal assessment is required to find out whether this is the case.
If you have had a diagnosis for your child which proves they have an intellectual disability, you may be able to apply for DSS.
Click here for more information about DSS. They may recommend you talk to a Needs Assessment and Service Coordinator (NASC) to begin the process.
Find your local NASC on the Needs Assessment and Service Co-ordination Association website.
IF you find that your child is eligible for Disability Support Services, then you may also be able to claim other benefits such as Carer Support (respite care for you) or Individualised Funding (IF) - person-directed funding from Whaikaha which gives disabled people and their whānau more choice in how they are supported to live their lives fully.
This is a weekly payment from Work and Income NZ which helps carers supporting a child or young person whose parents can't care for them because of a family breakdown.
Find out more here.
Orphan's Benefit is a weekly payment which helps carers supporting a child or young person whose parents have died or can't be found, or can't look after them because they have a serious long-term health condition or incapacity.
Find out more here.
If you're caring for someone else's child and need help with pre-school or school-related costs at the beginning of the year, you may be able to get the School and Year Start-up Payment. It's a one-off payment of between $400-$550 depending on the age of the child. You must apply between mid-January and the end of February to receive this. Apply to WINZ.
Find out more here.
A weekly payment which may be available to help if you are caring full-time for someone.
You can apply through Work and Income NZ.
Find out more here.
This is a fortnightly payment made to the main carer of a child or young person under 18 with a serious disability or health condition.
This payment is for the extra care and attention that you need to give to a disabled child. It is a set amount and doesn't depend on your income, assets or costs.
Parents/caregivers may be eligible if: 1) they are the main carer of the young person, 2) they are a New Zealand citizen or permanent resident, 3) the young person has been assessed as needing constant care and attention for at least 12 months because of a serious disability.
Find out more here.
Whether you can get childcare subsidy and/or OSCAR subsidy depends on how much you and your partner earn. The amount you can earn and still receive childcare subsidy and OSCAR subsidy increased fairly substantially on 1 April 2023 so it may be worth checking if you are now able to get it.
The income thresholds and rates of subsidy are available here for OSCAR subsidy and here for childcare subsidy.
Childcare Subsidy
Childcare Subsidy is a payment that helps families with the cost of pre-school childcare.
If a child receives the Child Disability Allowance (CDA), you are entitled to childcare subsidy up to the age of 6, rather than 5.
Further information about childcare subsidy is available via Work and Income NZ here.
OSCAR subsidy
Out of School Care and Recreation (OSCAR) Subsidy is a payment which helps families with the costs of before and after school care, and holiday programmes.
To get the OSCAR Subsidy you must be the main carer of a child or young person who is under 14 years old (or under 18 years old if the main carer gets a Child Disability Allowance for them), and to be unable to take care of the child or young person because of your own work, study, illness or disability.
Further information about the OSCAR subsidy is available via Work and Income NZ here.
Weekly payment for people with regular, ongoing costs because of a disability (e.g., visits to the doctor, medicines, extra clothing or travel).
Young people (from 16 years) are eligible if they have a disability that is likely to last at least six months; have regular, ongoing costs due to the disability that another agency does not fully cover; are a New Zealand citizen or permanent resident; normally live in New Zealand and intend to stay here. Young people with FASD qualify if they meet criteria.
Young people can apply through Work and Income.
Find out more here.
A weekly payment which may be available to help if you have a health condition, injury, or disability.
You can apply through Work and Income.
Find out more here.
We have a handy flow chart for pathways to funding at school here.
Funded by the Ministries of Health and Education, and Oranga Tamariki.
HCN works with children and young people who have high and complex needs. They work with multiple government and non-government agencies to help families find positive solutions. The service is intensive and lasts between six to 24 months.
Young people may be eligible if they have high and complex needs across at least two sectors (education, health, and care and protection). Young people with suspected FASD qualify if they meet criteria. Two required agencies have to put in a joint referral.
Find out more here.
This is educational funding which may provide support for students with the highest ongoing levels of need for specialist support. The scheme enables them to attend school and participate alongside other students.
More info is available here.
Funded by the Ministry of Education, IWS is a support programme for young people aged 5–14 years who have behaviour, social and learning needs that are highly complex and challenging, and who require support at school, at home and in the community.
IWS takes a bespoke, comprehensive, holistic, youth- and family-driven approach. It has two key criteria: 1) there has to be a need in the school, home, and community, and 2) every other intervention has been used or attempted and was unable to meet needs.
A panel reviews all referrals and decides if the young person is accepted. Applications are made by Ministry of Education Learning Support staff, RTLB and day specialist schools, or fund-holder (ORS) schools.
More info is available here.
Funded by the NZ Police. The purpose of the flexi fund is to enhance tamariki / rangatahi wellbeing following family violence ‘through the purchase of one-off or timebound goods or services.’ This fund can be applied for on behalf of young people up to the age of 18.
More about this fund here.
If you have tamariki / children who with FASD and they are at school, then as caregivers, parents, grandparents and whānau, you will need to advocate strongly for them to enable them to live their best lives.
It can be helpful and empowering to be FASD-informed for this reason: you know your child best – what works and doesn't work for them – and if you can have informed discussions with staff, it's likely to have better outcomes.
There is no doubt that if tamariki with FASD can see the school years through there will be better life outcomes generally, so it's extremely important to begin interventions as early as possible.
If tamariki or rangatahi have suspected or diagnosed FASD, the school must be informed, and the first contact is likely to be your child's school SENCO – Special Education Needs Coordinator. (You'll come across lots of acronyms in education – there's a quick guide in the tab below.)
An essential and excellent resource is the Te Kete Ipurangi inclusive education page. Here you'll find everything you need to know about what's available for special needs students at every level of education, including funding.
PLEASE NOTE: for kaiako / teachers, SENCOs and RTLBS we have an Information for Educators page which is helpful for teachers to begin an understanding of how your FASD ākonga / student may behave and learn differently. Do pass this link on to your child's teacher so you can work together and be on the same page – the best outcomes happen when whānau and teachers have an open pathway to communication (although sadly this may not always be the case).
IWS, ORS, SENCOs and more - in getting funding and help in education, you may feel that your life begins to revolve around acronyms! Here's a FASD basic acronym dictionary for educational requirements.
At school, you and your FASD child will very likely need to develop a relationship with the Special Educational Needs Coordinator (SENCO for short) is a teacher who is responsible for special educational needs in school. Most schools in NZ are obliged to employ a SENCO, whose role is to ensure all students with learning disabilities are well equipped to obtain the right help and support they need at school.
Learning Support Coordinator; Resource Teacher of Learning and Behaviour; Resource Teacher Literacy.
IWS stands for Intensive Wraparound Service. The IWS supports tamariki who have behaviour, social and/or learning needs with a plan to meet each child’s needs. Their needs are highly complex and challenging and they require support at school, at home and in the community. The IWS plans are created to support tamariki at school, at home and in the community. Plans are designed to have a range of activities and interventions, including help from professionals, to help tamariki and whānau develop new skills. Click here for further information from the Ministry of Education.
The Ongoing Resourcing Scheme is for students with high or very high ongoing needs for learning support. For more details from the Ministry of Education, click here.
High and Complex Needs.
In-class Support Funding; Interim Response Funding.
Here's a handy graphic representation of where to start and who to talk to around getting the right help for your tamariki at school.
Click the image to download.
It can be very handy for teachers to have a printout for their wall as a first response resource for a quick reminder of strategy when dealing with students with FASD. This double-sided sheet can be downloaded and printed. Click here or on the pic to download.
It's often very helpful for teachers to have a one-page information sheet that they can keep on file to refer to which gives helpful tips about your child's strengths, challenges, tips on strategies and ways of communicating.
To this end, we've created a Word document that you can download and fill in, then print it out for your tamariki's teacher. We've also included an example sheet that's filled in.
Click here for the sample pdf (see below), and here for your blank Word document to fill in.
Whānau and caregivers in Aotearoa have little option but to be prepared to advocate tirelessly for their child at school – the great benefits of engaging closely with teachers and other educational professionals are well-documented and sadly there are still few clear pathways in our schools that take FASD into account.
From our own experiences, it's enormously important to take time to set up your tamariki at every level of school to enable them to avoid upsets and conflict, achieve their potential and become a valuable member of society.
If this is accomplished at a young age, the better the outcome is for them getting to high school and staying there – but if behavioural problems in early teenage years lead to exclusion from school there's a high chance that things may track badly for your rangatahi in their late teens.
Having said that, once everyone enabled to communicate and work positively together to identify strengths, create positive environments and healthy expectations, amazing successes can occur!
The best resource we have come across in terms of helping whanau and caregivers in Aotearoa to advocate for their FASD children comes from Western Australia Development Disability Council.
It covers issues such as:
Download 'Learning How to Advocate for your Child at School' here.
There is growing awareness of inclusive education both globally and within Aotearoa, but the various stakeholders involved find it hard to agree on. Here we give some background information about the movement – with our own interpretation of it at the end.
In 2008 New Zealand signed the United Nation’s Convention on the Rights of Persons with Disabilities (UNCRPD). Article 24 addressed the right of disabled people to an education.
In 2016 an internationally accepted definition of inclusive education was agreed in the United Nations. It is referred to as 'General Comment 4', and it was adopted to become part of Article 24 within the UNCRPD.
General Comment 4 states:
“The right to inclusive education encompasses a transformation in culture, policy and practice in all formal and informal educational environments to accommodate the differing requirements and identities of individual students, together with a commitment to remove the barriers that impede that possibility...
"Exclusion occurs when students are directly or indirectly prevented from or denied access to education in any form.
"Segregation occurs when the education of students with disabilities is provided in separate environments designed or used to respond to a particular impairment or to various impairments, in isolation from students without disabilities.
"Integration is the process of placing persons with disabilities in existing mainstream educational institutions with the understanding that they can adjust to the standardised requirements of such institutions.
"Inclusion involves a process of systemic reform embodying changes and modifications in content, teaching methods, approaches, structures and strategies in education to overcome barriers with a vision serving to provide all students of the relevant age range with an equitable and participatory learning experience and the environment that best corresponds to their requirements and preferences. Placing students with disabilities within mainstream classes without accompanying structural changes to, for example, organisation, curriculum and teaching and learning strategies, does not constitute inclusion. Furthermore, integration does not automatically guarantee the transition from segregation to inclusion.”
As at July 2023, the Ministry of Education’s portal Te Kete Ipurangi website states:
“Inclusive education is where all children and young people are engaged and achieve through being present, participating, learning and belonging…
"Inclusive education means that all learners are welcomed by their local early learning service and school, and are supported to play, learn, contribute and participate in all aspects of life at the school or service.
"It is underpinned by the belief that every learner has the potential to make a valuable contribution to the wellbeing of their family, whānau, community and to Aotearoa New Zealand as a whole. It asserts that our diversity is a strength.
"Inclusive education is also about how we develop and design our learning spaces and activities so that all learners are affirmed in their identity and can learn and participate together. It means deliberately identifying and removing barriers to learning and wellbeing.”
Schools in Aotearoa New Zealand are legally required to be inclusive under the Education and Training Act 2020. The right to an inclusive education is also reinforced by the New Zealand Disability Strategy.
The New Zealand Disability Action Plan 2019-2023 sets out priorities to advance the implementation of the UNCRPD and the New Zealand Disability Strategy 2016-2026. Outcome One of the Plan relates to education – click here to read it.
At the 2022 review of the New Zealand government’s compliance with its responsibilities under the UNCRPD, the Committee recommended (in clauses 40, 48 and 54 of their report):
Further details of the recommendations can be found here.
As New Zealand is a signatory to various international conventions that address inclusive education we are bound to the international definition of inclusive education reached in 2016. However, it is clear from reviewing information around the world, there are different interpretations of this definition that meet each country’s individual situations and contexts.
The inclusive education movement in Aotearoa New Zealand has been fighting long and hard for change in the education system, and true inclusion of disabled people in mainstream education. They want to see all residential special schools and special schools closed as soon as possible. They do not accept that these schools should remain an option available to disabled people and their families.
The movement argues these services and supports should be available in the local community. It also advocates for the prompt roll out of the EGL approach in education and argues strongly that inclusion in school is a human right and that New Zealand is currently breaching its international obligations.
FASD-CAN supports the inclusive education movement and the roll out of EGL to our neurodiverse ākonga. However many of our members, particularly caregiver members, want to retain specialist schools (both day and residential) as an education option available to them until the mainstream education system is appropriately set-up and funded to meet the complex needs of our FASD learners.
This is likely to take many years to achieve as it will require not only fundamental transformation and change to long-standing education systems, but also a deep shift in mindsets and belief systems in our communities about disabilities – neurodisabilities in particular.
FASD-CAN believes the definition of inclusive education in Aotearoa New Zealand must also be interpreted within the context of the EGL principles which the government has committed to implementing across its systems and processes.
FASD-CAN’s interpretation of inclusive education has an emphasis on self-determination (choice) and being person-centred as set in the EGL principles, but also recognising the role of whānau in decision-making, as is fundamental in the whānau ora principles.
“Inclusive education is where every ākonga / student is actively supported to reach their potential in partnership with family, whānau and kura / schools, where they have real choice and access to an equitable and mana-enhancing learning experience, in a learning environment that best meets their unique strengths, interests, social, emotional and learning needs.”
Education for tamariki with FASD has many obstacles which can often cause problems in the mainstream school environment.
Before beginning their educational journey, children with FASD may already be struggling with processing information, interpreting body language of others and following instructions. Many other skills are not developing in the same way as their peers, so fitting in at school can be a challenge and school refusal or challenging behaviour may be the result.
Home-schooling, or home education as it's most often now referred to as, can be a viable option for some families. While it does require commitment and has challenges, for those caring for a tamariki with FASD who is struggling in a mainstream school environment, it may be an opportunity to provide learning opportunities for your child in a quiet, calm, home environment, with a learning plan tailored to their specific needs. Some families find home education significantly reduces the anxiety and distress that can accompany school attendance and can lead to better outcomes.
There's an excellent page to consult about all aspects of home education here.
Children learn best when they are interested in a subject and the flexibility of home education allows this to happen regularly.
One of the biggest advantages to home schooling is the flexibility. You can tailor learning programs to suit you, your child and your lifestyle. This also means everyone ends up doing things a little differently.
Yes, you do. In New Zealand children between 6 – 16 years of age must attend a registered school, or have an exemption from school attendance. This exemption is granted by your local office of the Ministry of Education.
You’ll need to convince the Ministry officer that you are able to educate your child 'as regularly and as well' as a registered school. However you are not obliged to follow the national curriculum or create a mini-school at home.
The Ministry of Education, in considering your application, will want to know:
Contact your local Ministry of Education office for an exemption application form.
The Ministry of Education provides a small amount of assistance in the form of an annual ‘supervisory allowance'. This consists of $743 for the first child, $632 for the second, $521 for the third, and $372 for each one after that.
This is paid retrospectively, in two instalments each year, June and December.
There are a number of Homeschooling websites to consult in New Zealand – click here for a good place to start.
Many thanks to Kiwifamilies for some of the information on this page.
A company called Youthlaw has been providing free legal help for nearly 30 years to tamariki under the age of 25. They cover various issues including educational funding in NZ. Youthlaw staff solicitors are unique specialist practitioners – they are some of the only lawyers practising in the field of education law. They have the ability to assist with appeals of high needs special needs funding under Section 10 of the Education Act.
Click here for more info, call 0800 UTHLAW (0800 884 529) or email them at [email protected]. See below for flyer.
This is sadly an all-too-common scenario – and as with most punishments for ākonga / students with FASD, it doesn't work and merely serves to isolate and traumatise them further. Sometimes however, a school has no options. It's a big problem with many facets, but we have some practical advice, a webinar and some personal stories about school exclusion on our Resources page, here.
To get an idea on how FASD is currently handled within the education system in Aotearoa, we asked some local experts in FASD education one question each to establish the basics. Click on each name below to go to their opinion.
Claire Edwards - What are the most common problems for students with FASD at school, and how are these needs not met?
Tracey Jongens - What needs to happen ideally in schools for students with FASD and are there any signs of hope and change?
Vanna Blucher - From an educator’s perspective, how can teachers be better supported to allow students with FASD to achieve their potential?
The most common problem facing our tamariki/rangatahi within the education system reflects a much wider problem facing NZ: the lack of recognition of FASD as a disability and a general lack of awareness that FASD is a permanent, lifelong brain injury. This means that our tamariki often struggle to access support and funding as often they do not fit criteria and are not considered ‘bad enough’. Lack of funding results in a lack of support within the classroom (for both student and teacher), a place where our tamariki often struggle to cope with the demands and expectations placed upon them. Often funding comes as the ambulance at the bottom of the cliff when behaviours have escalated and come to a critical point.
There appears to be a distinct lack of training within teacher training institutes around FASD, so teachers are often unaware and not equipped with the skills to deal with the complexities our tamariki present. There is also little support for teachers who are often already dealing with large class numbers and other children with complex needs and neurodiversities.
This and a focus within the classroom on behaviourist techniques such as rewards and consequences (which do not suit children with FASD), often end in behaviours escalating and tamariki/rangatahi being labelled as ‘naughty’ and having behavioural problems.
Within early years and at primary school, our tamariki with FASD often seem to do quite well, possibly due to the more holistic emphasis on learning, but as they hit intermediate/high school there is a huge mismatch in terms of environment and expectations. The fact that they are expected to move from one class to another, one teacher to another and independently follow a timetable does not work well for our learners! If you add sensory processing and memory issues into the mix, it's easy to see how overwhelming this environment would be. Inabilities to regulate emotions without support could end in rangatahi being unable to cope and ending up in trouble.
Then there is the complexity of FASD itself and the fact that it is often ‘invisible’. There’s a saying: ‘if you’ve met one person with FASD, you’ve met one person with FASD!” Levels of skills within FASD can be so different and students can often present as coping on a surface level, but from one day to another they appear to be unable to complete tasks they had previously done.
Without educator training and understanding, it tends to paint a picture of a wilful, manipulative child, rather than a misunderstood one with a brain injury. Often in schools there is a disconnect between the school and the real experts on the child/tamaiti – the whānau! Instead of utilising the knowledge and skills that the whānau have, they can be blamed for behaviours and viewed as interfering parents.
Final thought: we must shift the goals for our learners with FASD from independence to interdependence!
Tracey is a founding member of FASD-CAN Inc. She has spent her life working in the education sector, including primary teaching, teacher training, working as a Resource Teacher of Learning and Behaviour (RTLB), and is currently Head of Department, supporting students with learning needs and leading the development of a programme to support students with ORS at Te Aratai College in Christchurch. Tracey has spent the last 10 years raising awareness around FASD within the education sector throughout NZ and Australia.
Whānaungatanga / relationship is the key to understanding young people with FASD. FASD is an individualised diagnosis. This means that each young person with FASD will have their own areas of strength, their own interests and their own challenges, and no two people with FASD are the same.
It is imperative that each young person is understood as the person they are, that their strengths are recognised and developed and that their challenges are supported. Whānau are the experts on their young people and it is vital that whānau, the young person and schools work together. Whānaungatanga is increasingly being recognised and embodied in practice by schools throughout Aotearoa / NZ.
A young person with FASD must experience success. This success may be possible with support or with scaffolds being provided. Regardless, success is still success. When a young person experiences success it is important that schools and teachers recognise that the success is possible due to the level of support given. It's vital that the support remains in place over time and is developed and built on.
When a teacher takes the time to connect with whānau, to get to know the young person in their care, to find the strengths in that young person, to reflect as the professional when things become challenging and to try a different way, then the young person will experience success.
Schools are providing more flexibility for their learners, recognising the need for inclusive practices such as Universal Design for Learning (UDL), and providing a range of learning and assessment opportunities for tamariki and rangatahi. The development of individualised learning pathways is providing opportunities for learners to learn in the ways that they can enjoy and have success in.
Alongside this is the need to recognise that young people with FASD need ‘time out’ or opportunities to calm. Classrooms can be over-stimulating. Young people with FASD need to focus so much more to self-regulate. It is vital that quiet spaces, ‘brain breaks’, physical activities and sensory supports are available and easily accessed.
As the saying goes ‘Rome wasn't built in a day’ – however, there's a lot to be thankful for in the development of education at this time. Schools and teachers are increasingly aware of the importance of wellbeing. Teachers are encouraged to be reflective practitioners. Whānaungatanga is developing in importance.
Policy from the Ministry of Education now includes FASD as part of the strategies and practice around supporting neurodiversity in schools. The Inclusive TKI website, an online education tool, has a well-researched guide on FASD with excellent strategies provided for teachers.
Vanna is SENCo at Hobsonville Point Secondary School, a Modern Learning Environment in Tāmaki Makaurau. She started her career in primary schools and worked in a range of roles including teacher, SENCo, literacy specialist, and acting deputy principal. She made the jump to high school teaching six years ago when she started at Hobsonville Point and she hasn’t looked back since. Vanna has a particular interest in celebrating the diversity of our learners and ensuring all students can feel success while still engaged in their passions.
Follow Vanna @vannablucher5
As for all neurodiverse learners, kaiako need to take the time to learn what each individual student needs to be successful. It is about knowing your learner and figuring out from a strengths-based perspective what is going to work for them in a classroom, and what success looks like to them.
Students with FASD need both a global and a personal understanding of what works. Most of the time, this understanding comes from trial and error and figuring out what doesn’t work. During this process it’s important to remain empathetic and communicate often with all stakeholders to prevent learning from feeling punitive or deficit-focused.
In our MLE environment we are able to use different spaces within our learning areas to help support overwhelm, or any other sensory issues that may present in a school day. This is reliant on staff being aware of the signs, and having the capability to make the needed shifts in behaviour or environment before anxiety or overwhelm presents. The student needs to be able to leave and reintegrate into the classroom without unnecessary attention.
A specific learning plan will help with guiding the learning journey, while keeping communication open and transparent between everyone working with the student. Whānau are key to this process and the meetings that take place need to be structured in such a way that all parties understand where things are at and what the next steps are.
For a learner with FASD, ensuring goals are achievable, sustainable and personalised will help support any strengths-based programme with support of your RTLB and any other support agencies.
I have made our staff a website which includes a number of helpful resources that can be looked at and used to help build their own understanding and capacity to support a wide range of learning needs, including FASD. By providing resources and reading materials for staff, classroom practice can keep growing and improving so that our learners are being catered for as best we can.
As with any child, it seems that just when you've got into a routine that's working, it's time to take the next step - and everything changes. For ākonga / students with FASD, coping with these changes can be enormous and overwhelming and for parents – well, the same usually applies!
Here are some links to explore to help with transitions throughout school.
• Care Matters website: successful transitions throughout school years
• Ministry of Education: lots of info here (aimed at kiako/teachers but good for parents, too) on the MoE's National Transition Guidelines
For teens thinking about moving into tertiary education or work, these sites will be helpful.
• SpectrumCare have programmes to help transition from school into work (along with many other services)
• CCS Disability Action have a helpful downloadable brochure on their website for transitioning from school to work
• Workbridge provide help nationally for your rangatahi or adult to find and keep a job
All universities and tertiary education providers have disability services to look after students who may need learning support.
Student Disability Services - The University of Auckland
Disability support services | Manukau Institute of Technology
Disability Support Services - Student Support - AUT
Disability Support Services | Study Support | Unitec
Disability Services – Victoria University of Wellington
Disability Services – University of Canterbury
Disability information and support – University of Otago
Disability services – Massey University
This relatively new social movement for disabled people could be good news for people living with FASD, their caregivers and whānau.
Enabling Good Lives (EGL) is a new approach to the support of disabled people. It originally came from members of the disability community who developed the concept. In 2012 the New Zealand government agreed to adopt and implement the EGL approach and principles across governmental services. Whaikaha (the Ministry of Disabled People) has been tasked with progressively rolling it out across Aotearoa in the coming years.
Its intent is to give more choice and control to people with a disability as well as their families and whānau, about how to make good lives for themselves and about the services and supports they receive.
An important element of EGL is a progressive societal shift in thinking about the disability community.
The medical model has been the accepted way of thinking about disability since the Industrial Revolution or earlier. It assumes that disabling impairment is a problem for the disabled person and they need to adapt or be ‘fixed’ to fit their environment and their society.
The social model of disability has been gaining traction since the disability rights movement in the 1970s and 1980s first proposed it. It holds that rather than impairment disabling a person, the barriers created by an inaccessible society are the disability.
The New Zealand Disability Strategy adopts the UNCRPD’s ‘social model’ of disability and has given rise to the Disability Action Plan 2019-2023.
*UPDATE February 2024: the UNCRPD's recommendations were presented to the NZ Government, who have commented and passed on an implementation strategy to the relevant government agencies. Eight recommendations were relevant to people with FASD and their whānau – you can read our roundup about this here.
“In the future, disabled people and their families will have greater choice and control over their lives and supports, and make more use of natural and universally available supports.”
Both this vision and principles below are based on respecting and trusting people with disabilities and their families and whānau to be the decision-makers about their own lives.
Underpinning the EGL vision are eight core principles as follows:
Disabled people are in control of their lives.
Invest early in families and whānau to support them; to be aspirational for their disabled child; to build community and natural supports; and to support disabled children to become independent, rather than waiting for a crisis before support is available.
Disabled people have supports that are tailored to their individual needs and goals, and that take a whole life approach rather than being split across programmes.
Disabled people are supported to live an everyday life in everyday places; and are regarded as citizens with opportunities for learning, employment, having a home and family, and social participation – like others at similar stages of life.
Disabled people are supported to access mainstream services before specialist disability services.
The abilities and contributions of disabled people and their families are recognised and respected.
Disabled people have supports that are simple to use and flexible.
Supports build and strengthen relationships between disabled people, their whānau and community. To find out more about the history of EGL, the approach and principles click here.
Yes. FASD meets the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) definition of disability. It is a brain and body-based disability that materially affects a person’s ability to participate equally and equitably in society.
FASD is also acknowledged by the Ministry of Health and Whaikaha as a disability. However, unlike other disabilities, people with FASD and their families are not eligible for Disability Support Services funding unless the person also has an intellectual disability (specifically an IQ below 70) or a debilitating mental illness.
FASD-CAN is actively working to get this inequity addressed as soon as possible.
New Zealand has been criticised for its slow roll-out of the EGL approach by the 2022 UNCRDP Review Committee, who recommended it be expedited to all people with disabilities.
The Review Committee specifically identified that EGL should include those people with FASD.
The Committee also recommended the New Zealand government ensure that people with FASD, along with other chronic conditions, “have access to the disability support system and are included in disabilities policies and programs”.
Implementation of an EGL approach in New Zealand’s education system was also considered as part of the recent Highest Needs Review undertaken by the Ministry of Education (MoE). Cabinet has asked MoE and Whaikaha to work together to consider how EGL can be applied in the education system.
As of late August 2023, the government has accepted the Review Committee's recommendations “with modifications”. Whaikaha is the lead government agency tasked with implementing this action and it will report back to Cabinet at the end of the year about its planned work to achieve this outcome. As yet, there is no indication of what “with modifications” means for the rollout or the inclusion of those with FASD.
However, the key message is that people with FASD and their caregivers, families and whānau need to be aware of EGL and that, if appropriately designed and implemented, positive change is on the way.
EGL webinar recording
NZ group 'VIPS in Education' founder Frian Wadia recorded this kōreo with Rebekah Corlett in February 2024 about EGL in education.
Some rangatahi may struggle with mental health issues which need professional help. Following are some of the more common concerns that young people may experience and how you can support them.
Most people, at some point in their life, struggle with low self-esteem. This may be especially true for a young person with a FASD diagnosis because they may feel different, have trouble socially or struggle in school. As a parent, there are things you can do to try and help your young person feel good about themselves, such as:
There are many reasons why young adults with FASD may experiment with drugs or alcohol, such as low self-esteem, peer influence, a need to fit in or as a way to cope with their feelings. Following is a list of strategies that may help you to support your teen.
Self-harming behaviours may take many forms, such as cutting, scratching, not eating, vomiting after eating (bulimia), not allowing wounds to heal, burning or hair pulling. It is important to know that self-harming is most often used as a way of coping.
This can be a tricky subject, but it's an extremely important one. It's very common for those affected by FASD to experience some complex issues around emerging sexuality which can become serious. It's essential for them to receive early, clear, repeated information around what is and what is not appropriate, alongside supervision where necessary.
Schools present sex education lessons for adolescents and teens but these can be confusing to those with FASD. And because young people with FASD want to be included, they can be a target for sexual advances by others – or can become involved in coercion themselves.
ISB can include inappropriate touching, promiscuous or dangerous sexual behaviour, sexual remarks, lack of physical boundary space, disrespect of privacy, masturbation in inappropriate settings, exposing ones’ self, voyeurism, and obscene or offensive language. Many of these problems can be mitigated by open discussion and clear boundaries which must be constantly reinforced as those with FASD transition into adulthood.
CanFASD, the Canadian National FASD research agency, produced an issue paper in 2018 on ISB in those with FASD. The purpose of this was "to highlight an overview of the current existing research conducted in this area and offer implications for individuals, families, caregivers, and policy makers." It is important reading – here are a few samples of their finding.
• Researchers estimated that ISBs are displayed by 45%-52% of adults with FASD. Rates of ISB associated with FASD appear to increase over the lifespan, with studies demonstrating the rates of ISB in children (ages 6-11) at 39%, 42% in adolescence (ages 12-20), and up to of 65% in adult males. The average age when ISB initially present is approximately 10 years old, although the age of emergence can vary.
• Individuals with developmental disabilities should receive sexual health education which is specifically informed by the person’s needs and disability.
• It is essential that FASD-informed approaches towards adopting healthy sexuality and properly addressing ISB are implemented to help individuals with FASD as part of holistic support. Individuals with FASD are sexual beings like everyone else and need to understand their sexuality and sexual needs in a healthy way.
The research concluded:
"ISB is frequently an adverse life outcome for individuals with FASD ... there is an obvious need for future research to address the significant gaps in this area. Future research should focus on investigations that better outline the cause of ISB in this population, as well as the assessment of FASD and ISB. Researchers also need to examine sex offender treatment programs for individuals with FASD and improve understanding about FASD amongst professionals addressing ISB, specifically those within legal settings contending with those experiencing trouble with the law as a result of ISB."
Click here to download and read this important paper.
Family Planning have created an excellent e-resource for those teaching or caring for intermediate and secondary students with learning disabilities, including FASD. The resource provides a framework to navigate Relationships and Sexuality Education with young people who may need extra support in understanding concepts in the standard curriculum.
Click here to go the website to download ($5).
Impulsivity, eagerness to please, lack of judgement and recklessness all contribute to a well-documented over-representation of rangatahi with FASD within our courts and penal system.
Many parents and caregivers have found it helpful to introduce their rangatahi to the local police. They can explain some of the basics of FASD to them and ensure that caregivers are called direct should their teen or young person get in trouble.
We have a pamphlet on our resources page which you can download and either email or print out to hand over to police – you could even encourage them to ask their colleagues to read it. Click here to access our police pamphlet.
There is more information for police on our professionals page under Police and Justice, including online training for them about FASD.
It can also be a good idea for your rangatahi to carry on them a health passport which they can hand to police that will inform them that they have FASD and also has contact numbers for you.
However, if problems with the law occur, it's very important to communicate clearly with professionals working in the justice system to ensure they can help both the parent and the young person get through this challenging time.
There is quality, FREE legal advice available from Youth Law - call 0800 UTHLAW, email at [email protected] or find them on Facebook here.
If your child has communication problems within a justice setting you may be able to access help from Talking Trouble Aotearoa. They can help with a Communication Assistant in Youth, District and High Courts and Family Group Conferences for witnesses or defendants who need assistance with understanding and participating in these settings.
This is a 20-minute presentation by Professor Anita Gibbs of the University of Otago. Professor Gibbs is a much-respected lecturer in sociology and criminology and is a registered social worker. Her research studies have included electronic monitoring, mental health, adoption, transcultural parenting, defining social work research, auto-ethnography, and FASD and its effects on families. Anita also facilitates a parent support group for families caring for individuals with FASD in Dunedin.
Anita and her partner have a birth daughter and two boys they adopted from Russia. She shares here a remarkable joint presentation with her teenage son Dima in the context of their own experiences in the NZ justice system.
‘What Works Well and What Doesn’t Work so well for young people with FASD in the Youth Justice System in Aotearoa New Zealand’ was part of a two-day virtual conference, 'Let's Continue the Conversation' at the Lakeland Centre for FASD in Canada in October 2021.
Click on the image below to go to the presentation.
Around Aotearoa there are many grandparents raising their mokopuna. It often comes with some big challenges, but you are not alone: a NZ group is dedicated to helping tūpuna raising grandchildren. It's the only organisation dedicated to providing information, advice, support and advocacy specifically for full-time grandparent caregivers.
Click here for more details.
Partners and fathers are enormously important when it comes to FASD.
Of course, the first role they play is in supporting their partners in an alcohol-free pregnancy, but if a diagnosis of FASD has been reached, there are many ways men can input into support, including as fathers or being mentors to young people, peers and role models.
Elizabeth Elliot, Chair of the advisory group for FASD-Hub Australia introduces this recording of a webinar on the subject held in September 2022 about the male role in FASD.
Click here to watch the video.
Other resources mentioned in the webinar can be accessed here:
In Aotearoa, we have a few support websites specifically for fathers including:
• Fathers for Families (ten week course through Family Success Matters)
and many more on Health Navigator NZ.
If you are a caregiver or parent of a tamariki or rangatahi with FASD, their long-term welfare is a worrying thought – if anything happens to you, or when eventually you die, who will look after them? What is their legal position and who will support them, understand their needs and make decisions about their welfare on their behalf if they are unable to do so?
You may be concerned about managing and protecting assets or income of your adult offspring. There are legal ramifications that need to be understood around family trusts, welfare guardianship, powers of attorney, property management and how a trust may be useful for managing property. And of course a will is essential.
New Zealand charity Disability Connect runs regular webinars and they have kindly allowed us to share the excellent list of digital resources they send out to their attendees afterwards.
You can subscribe to their newsletter here to stay updated on upcoming Disability Connect webinars (and their Transition Expo in September 2023).
Disability Connect webinars on this subject are run by lawyer Nan Jensen. You can check out Nan’s Facebook page (Abilityworx) and her YouTube channel where you can watch various videos on this subject.
• Health & Disability Commission links
– the Code of Health and Disability Services Consumers' Rights
• Enduring Power of Attorney info
• Legal Services | Disability Connect
For members only
It can be very tough being a parent or caregiver of an individual with FASD.
You need to become your child's PA/coach and mentor and it can feel like a 24/7 job. To keep yourself sane and able to stay on the job, self-care is extremely important. If possible you will need as much backup as you can get, and have opportunities for respite.
We have an info-sheet available for download called 'I am a Caregiver', which details the requirements of a tamariki / rangatahi and adult with FASD, with some of the challenges and your role as their caregiver. Download it here.
Here are some common scenarios with ideas to make things a little bit easier.
Communicating patiently and effectively with your FASD child can make the difference between getting out the door for school, avoiding meltdown (theirs or your own) and generally keeping the peace. Some useful phrases for your own internal dialogue include:
“Can’t not won’t.”
Remember that FASD is caused by brain damage.
“Ten-second kids in a one-second world.”
People with FASD need more time than others to process and understand.
“Gravel roads, not highways.”
Atypical neural pathways associated with FASD are easily disrupted.
“Brain, not blame.”
If you find yourself making unhelpful judgements, remember this phrase.
“Adapt the environment, not the person.”
Safe, supportive environments are key for people with FASD to thrive.
“Short, simple, specific, slow.”
Effective communication is essential for people with FASD who won't get sarcasm, irony or often, jokes. Getting them to repeat instructions is also encouraged.
Everyone knows that getting enough sleep can be a huge part of our effectiveness, functionality and mood.
But for those living with FASD, sleep disorders have been well-documented as a problem on a whole new level. Getting to sleep and staying asleep is very hard for them, and the lack of good sleep means that behavioural issues are elevated. Around 80% of parents and carers of children with FASD say their children have problems with sleep. These can include:
It's a big subject, but there are some basic tips which are essential, including avoiding pre-bed excitement, creating a calm quiet bedroom with low stimulus (no clutter), using ear plugs or headphones and heavy blankets. No screen time and calming music can also be helpful.
• We have curated some of the most helpful tips and combined them with our own kaimahi / staff's lived experience to created a Fact Sheet on 'FASD and Sleep' – click here to read.
• A June 2023 report by the Edmonton Fetal Alcohol Network in Alberta, Canada, was prompted by various recent studies and has some helpful strategies – click here to read.
• An Australian three-phase sleep study is underway (June 2023) to develop clinical sleep guidelines at the Queensland Children's Hospital in Brisbane. The first two phases of the study are underway, involving a survey for the parents of children living with neurodisability and the development of a sleep monitoring mat that gathers movement and sound data in a less invasive way than traditional methods.
The third phase will be a randomised controlled trial of different sleep interventions to treat chronic insomnia in children with neurodisability, evaluating which strategies are most effective. We'll keep you posted.
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 – and movement can also be triggering for them.
When getting to school can be derailed for the day by a scratchy jumper, or loud noises, it's important to anticipate sensory overload scenarios before they happen – and it can be handy to have noise cancelling headphones, sunglasses or a fidget toy on hand.
• Click here for information from Canada about sensory issues, specifically for children with FASD.
• Click here for information which although not specifically targeted to FASD, has much helpful information.
• Click here for NZ-specific info about sensory issues not specifically targeted to FASD.
• There's a helpful tip sheet here about dressing a child with sensory issues.
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 Fetal Alcohol Spectrum Disorder 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 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.
For a downloadable worksheet about initialising 'heavy work' click here.
Child and adolescent-to-parent violence and abuse (CAPVA) is a frequently hidden issue which often arises in families caring for an individual with FASD. It is a complex issue which continues to be misunderstood and minimised outside of the family home.
If you are experiencing CAPVA please be assured that it is not due to poor parenting – it can be because the young person in your care is struggling to regulate and/or make sense of their emotions. This can result in a need to dominate, coerce, and gain control over their parents/caregivers.
Displays of aggression and violence by children/adolescents towards adults that are intended to threaten and intimidate and put family safety at risk can include:
People experiencing CAPVA report that they are always in a state of hyper-vigilance and feel like they are walking on eggshells waiting for the next explosion. Some of the common mental health effects of family violence are PTSD, depression, anxiety, low self-esteem, suicidal thoughts, hopelessness and fear of the future.
Published 24 January 2024
Professor Gibbs is a registered social worker who has taught social work, sociology and criminology courses for 20 years at the University of Otago. Her research interests include Fetal Alcohol Spectrum Disorder (FASD) and complex disabilities, especially identifying best practice in helping families and best evidence for professionals in their interventions with families.
Abstract: Child and adolescent-to-parent violence and abuse (CAPVA) refers to abusive and violent behaviours by children towards their parents or primary caregivers. The abuse and harmful behaviours can include a full range of physical, emotional, verbal, financial, and material actions over prolonged periods of time, from childhood to young adulthood. Parents and caregivers of children with neuro-developmental conditions are vulnerable to CAPVA, and little research has been undertaken exploring the experiences of caregivers of children with fetal alcohol spectrum disorder (FASD).
In Aotearoa New Zealand, 56 caregivers were interviewed using semi-structured interviews, and over half identified significant levels and impacts of CAPVA, including dealing with physical violence and frequent emotional abuse. Health and stress issues were present in all caregivers interviewed. Caregivers also identified how systemic ignorance and a lack of understanding from caring professionals led to parent blaming, a sense of shame and isolation. Yet caregivers also showed resilience and implemented strategies of de-escalation and distraction.
More specialised practice is needed in this emerging field of family violence and in how to support families with children who have FASD.
Click here to read the full article.
NoFASD Australia have produced a webinar series called Child and adolescent to parent/carer violence and abuse presented by University of Otago Professor Anita Gibbs (see above).
These webinars look at the issue of CPV and the impact that it has on family members, how professionals respond and strategies that may help to reduce the family distress.
Click here to go to the first webinar, and here for the second.
It's essential to keep yourself safe in order to be there for your child in the future.
If you are in immediate danger ring 111. If unable to speak, press 55. Let them know that your child has a neuro-disability.
Shine Family Violence Agency is a National organisation offering a free helpline, training, and consultancy throughout New Zealand. Call 0508 744 633 for 24/7 help and counselling.
If you are in crisis or feeling suicidal, please reach out to Lifeline Aotearoa Inc on 0800 543 354.
There is much international information on FASD medication online – it's a very big subject however, and we are currently working on some basic guidelines for Aotearoa NZ.
However, in October 2022 we ran a webinar entitled 'Focus on Health: The Clinician's Perspective', in which medication is outlined by two experts from Taranaki. Watch it on our post-webinar recordings page here.
The first thing to establish in moments of extreme behaviour scenarios is whether you are dealing with a trantrum or a meltdown. They may look similar, but they have important differences. The chart below can help with this (thanks to TES teaching resources for this graphic).
Most parents and caregivers of tamariki and rangatahi with FASD have experienced meltdowns – you are not alone! They can happen anywhere and if it's in public, we all feel that others will jump to the conclusion that we are bad parents if we don't 'discipline' the child or young person.
We have developed a series of wallet cards for caregivers which can help with this – click here to check them out, download and print.
It's really hard to keep your own cool in a meltdown too, but here are some good educational options to help you be ready to cope in any situation.
• Taming tantrums vs. managing meltdowns
• FASDsuccess with Jeff Noble – Barb Clark FASD Educator on serious meltdowns
Nate Sheets of Oregon's Cognitive Supports has some particularly helpful videos on de-escalation - see below.
• Five unhelpful responses we have to escalated kids and adults
Finally, in calm moments, it's great to build self-soothing skills that you can workshop with your tamaiti or rangatahi to co-regulate with them (this builds trust). They can hopefully use these skills instead of other attempts at self-regulation as they get older (which can in some cases turn into substance use or self-harm).
• Four tips to teach self-soothing skills
Being a parent or caregiver of tamariki or rangatahi / children or teenagers with FASD can be tiring and very challenging. Whānau who have children with FASD are often under a great deal of stress.
It's important to do your best to look after yourself so when you need to respond to an extra-stressful situation (and there will always be those) you're in the best place to be able to stop and think about your options. If you're tired you may respond to melt-downs in ways which can make things worse – or yourself and your child – but if you have a bit of 'wiggle room' in your stress levels, it's better for everyone.
This will not always be possible however, even with the best of intentions, so don't beat yourself up if you can't always respond in the way you wish you could!
A recent (January 2024) research paper entitled Self-Care in Caregivers of Children with FASD by Carson Kautz, Jennifer Parr and Christie L. M. Petrenko found that practicing regular self-care could lead to lower stress and more satisfaction as a caregiver.
Their research found that the elevated levels of stress experienced by caregivers can negatively impact their mental and physical health as well as their the functionality of their families. High stress is also linked to a lower quality of life for caregiver and family (Reid & Moritz, 2019). Most caregivers will already know this!
Caregivers in the survey used a variety of strategies to engage in self-care: physical exercise, mindfulness, meditation, eating healthily and seeking social support. However, the article also pinpointed common obstacles that caregivers encounter when attempting to practice mindfulness, such as time restraints, limited resources and exhaustion.
Mindfulness is a way of learning to be present in the moment, rather than stuck in oppressive or circling thoughts about the past or the future. It's about maintaining an awareness of our thoughts, feelings, bodily sensations, and surrounding environment, through a gentle, nurturing lens.
Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them. When we practice mindfulness, our thoughts tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future.
Meditation usually is about sitting more formally, focusing on our breath or body sensations. You’re not trying to turn off your thoughts or feelings but learning to observe them passing by without judgment. It’s about training your mind in awareness and gaining a sense of perspective. It takes practice – people often say it's like a muscle and needs time to learn, but once a practice is established it can be extremely fulfilling – many say life-changing.
There are many online and local meditation opportunities – here are just a few:
• The SriChinmoy Centre offers free meditation classes in Auckland, Hamilton and Wellington year-round.
• Daily Calm is a free 10 minute guided meditation, which changes every day and has had over 20 million views. Spoken by American Tamara Levitt.
• Wu Wei Wisdom is another free meditation spoken by David James Lee, a Taoist Monk – from the north of England.
• Headspace is a very popular paid phone app, which delivers a guided meditation to you every day for the price of a takeaway coffee a week or less.
Care Matters is a NZ website which provides up-to-date resources for caregivers and whānau of disabled people. They also run workshops - both face to face and online. Follow them on Facebook to stay informed of these.
This page on the Care Matters site has a couple of video where NZ parents and caregivers talk candidly about what their experience is of caring, how they realised that they needed to prioritise self-care, and how they manage it.
Click here to watch the videos. (The second video is a continuation of the first, they have been broken into two due to length – the first is around 5 minutes, the second around ten).
Eileen Devine is a licensed clinical social worker with over a dozen years of clinical experience, the adoptive mother of a child with FASD, and a certified facilitator through FASCETS, Inc., a leading non-profit specialising in the neurobehavioral model.
She worked with NOFASD Australia to make a couple of fantastic videos to support caregivers of those with FASD.
To watch 'Building Carer Resilience #1', click here.
To watch 'Building Carer Resilience #2', click here.
Check out Eileen's own website here.
This presentation focuses on how understanding that FASD is a brain-based disorder helps to inform caregivers on how best to respond to behaviours often seen in FASD, and examines the importance of a true strengths-based approach.
Managing the stresses of caring for someone with FASD is inextricably linked with this understanding. There is also a discussion of the various stresses that caregivers experience and methods to manage them and care for oneself on an ongoing basis.
Dan Dubovsky has presented regionally, nationally and internationally on Fetal Alcohol Spectrum Disorders, focusing especially on interventions for children, adolescents and adults. For this work, his son Bill has been his mentor and best teacher. Dan has provided training for people working in mental health and substance abuse treatment on loss and grieving, psychopharmacology, development, violence in youth, anger management, team building, stress and burnout, transitions and more.
Click here to watch.
The map below of FASD diagnostic services in Aotearoa New Zealand represents information gathered by FASD-CAN in June 2023 on clinicians in Aotearoa who are currently able to provide an FASD assessment and diagnosis.
When you click on a pin, a window will pop up with information on the service available at that location. Alternatively, click on the list of services to the right which will zoom you in to the location.
Note 1: Please ZOOM IN to see all pins in any area – there are several services in both Auckland and Dunedin for example, but they’re very close together.
Note 2: Please click through on the 'Background to diagnosis in Aotearoa' tab below for further important information.
Note 3: Most of the private services will also travel outside of their region to undertake diagnostic services, so do check all the regions if there is not a service identified in your particular area.
Click on the map below to access interactive pins.
Disclaimer
In providing this information, FASD-CAN Inc. is not endorsing the quality of the assessment, diagnostic report, or the other support services offered by these diagnostic service providers.
If you believe there is an error in the information provided or you are aware of other FASD diagnostic services that are not shown on our map, please contact Kim Milne our Principal Advisor asap at: [email protected]
In response to increasing calls for information from our membership, FASD-CAN set out in June 2023 to establish the availability and location of FASD diagnostic services in Aotearoa. There is currently no other publicly available list of clinicians who can diagnose FASD.
We engaged a very experienced paediatric nurse to undertake this research on our behalf.
An early diagnosis is a key factor for good life outcomes for people with FASD so that appropriate supports and interventions can be put in place for families and at school.
Research shows that failure to engage at school makes rangatahi with FASD more likely to end up with negative life outcomes involving substance use, engagement in self-harm and high-risk scenarios, mental health challenges and involvement in youth and criminal justice.
When we refer to FASD diagnostic services we mean that the particular service or provider has had the specialist training to undertake an assessment to identify if a person meets the FASD diagnosis criteria.
An FASD assessment requires a clinician specifically trained in diagnosing FASD. Ideally, this would be done within a multi-disciplinary team including a paediatrician, neuro-psychologist, a speech and language therapist and an occupational therapist. Having a key worker to work with the family/ whānau during and after the process is also highly desirable.
New Zealand currently uses the FASD diagnostic guidelines developed by Canada, however their use is currently under review by the Aotearoa FASD Diagnostic Guidelines project commissioned by Te Whatu Ora, with a report due out in 2024.
In the questionnaire we sent to clinics and services, we included the following questions:
Some clinics and services chose not to share certain information for various reasons. Some failed to respond at all despite multiple attempts to contact them; these included some Te Whatu Ora sites.
We found only 13 services able to offer an FASD assessment and diagnostic service – but two of those (Linda Gow and Koru Specialist Services) had two separate clinics, so there are in fact 15 clinics in Aotearoa. Some services, such as The FASD Centre Aotearoa in Tamaki Makaurau, Koru Specialist Services and others, will also travel to other parts of the country to undertake an assessment.
Ten of the clinics are located in the North Island but there are only five in the South Island. Perhaps most disappointingly, there are only four Te Whatu Ora publicly-funded services, and they are all in the North Island: Northland, Hawke's Bay, Taranaki and Lower Hutt.
This means Te Whatu Ora does NOT offer publicly-funded FASD diagnostic services in Tāmaki Makaurau/Auckland, Bay of Plenty, Lakes District - Taupo/Rotorua, Gisborne, Wairarapa, Whanganui, Nelson/Marlborough, Canterbury, South Canterbury or Southland.
In some large regions such as the Waikato and the South Island, we found no publicly-funded service provider that could provide an FASD assessment.
Most privately funded assessments cost of between $3,000 - $7,000 which is far beyond most whānau can afford for such an essential service. We also understand from the information received that wait times vary and change, but can be up to two years for publicly-funded services.
Unfortunately, the results of this research have highlighted the lack of progress to improve access to FASD assessment and diagnostic services in our country.
In the FASD Action Plan 2016-2019, the Ministry of Health made a commitment to develop and test tools to support the diagnosis of FASD and to investigate ways to upskill existing clinicians and embed the tools into routine practice.
However, in contradiction of the Action Plan, our review indicates a decrease in FASD diagnostic assessment capability across Aotearoa.
FASD-CAN is extremely disappointed to note this lack of implementation of the Action Plan. Despite the acknowledged benefits of diagnosis described in the Action Plan, there has been no strategy developed to carry out this upskilling.
Funding and a cohesive professional development strategy is needed to provide more professional training to develop diagnostic capability and capacity.
Getting a diagnosis of Fetal Alcohol Spectrum Disorder is so much easier if prenatal alcohol exposure is already confirmed. This is why it's essential to avoid stigma for mothers – if they feel unsafe around telling assessors there was alcohol involved in their pregnancy, they may be less inclined to let them know, potentially resulting in an incorrect, or no diagnosis.
At FASD-CAN we believe no mother intentionally harms her child and we know that reasons for alcohol exposure can include addiction (this alone can be very complex) and unplanned pregnancy – around 40% of pregnancies in Aotearoa are unplanned. This can mean the mother has been drinking alcohol but is unaware she is pregnant. FASD is everywhere, in all walks of life.
We are 100% committed to non-judgemental support and compassion for all mothers.
There is essential information around avoiding stigma in the internationally-recognised FASD Language Guide and the FASD Common Messaging Guide (both on our Resources page).
There are ten brain domains which must be individually assessed to diagnose FASD. These include cognition (IQ), adaptive function (daily living skills), language, motor skills, attention, memory, executive function (reasoning and consequential thinking), scholastic function, neuroanatomy/neurophysiology (such as small head circumference or unexplained seizures) and emotion regulation (anxiety or depressive disorders, including labile or changeable mood).
You can download our info-sheet on the ten brain domains here.
In the first instance, if you know or suspect your tamariki has had prenatal alcohol exposure, it can be a good idea to go to your doctor for advice or for a referral to a community paediatrician. Be aware, however, that many caregivers have reported having to educate their GP about FASD so seeking a referral may be the better option.
Please note, there is much more information about the the process of diagnosis on our 'Understanding FASD' page.
There are a number of routes that can be taken towards an FASD diagnosis. It's never easy – but it's worth it.
• Privately
This is often the route caregivers or whānau go down, IF they have the resources, but it can be prohibitively expensive and there may be long waitlists. See our interactive map for services currently available around the country.
• Oranga Tamariki / Permanent Caregiver Support Services (PCSS)
If your child is being fostered by you, and they are under OT care or your child is eligible for PCSS support then they may pay for diagnosis.
• Ministry of Education
The other avenue is through the MoE (your learning support coordinator / SENCO / RTLB should know more about this) which may apply if you and the school are facing severe behavioural issues – this route can also be funded.
• Youth Justice
If a young person with FASD does end up in trouble with the law (see our advice around this here), the courts may send them for funded diagnosis. However early intervention will always have the best outcomes.
It can be helpful to talk to other parents who have been through the process in your area. To contact others, you could find a kanohi ki te kanohi (face to face) support group in your area – click here for our list of groups around Aotearoa.
We have also launched (April 2023) a monthly ONLINE caregivers support group – click here for more information and to join us.
You can also try our Facebook support groups:
FASD-CAN NZ Professionals & Parents Group | Facebook
FASD-CAN NZ Parent and Carer Support Group | Facebook
You could also direct your rangatahi with FASD (16 and over) to our new 'Individuals' page.
FASD-CAN Individuals Group | Facebook
The best outcomes towards living a good life for people with FASD depends on tailored intervention and management of the behavioural symptoms of FASD starting as early as possible, and this is dependent on a correct diagnosis. But there are further reasons that we encourage diagnosis if possible:
There is more information on FASD diagnosis on the links below
• Australia's FASDHub website – includes videos with whānau and individuals.
• Canada's CanFASD has an excellent new guide which came out in June 2023 – 'Caregivers Guide to Diagnosis'
Below is a list of funding which MAY be available for those who people with FASD and for those who care for them.
Please note that we would like to add to this list as more information becomes available – if you are aware of other possible funding sources, please let us know!
FASD is recognised as a disability by Te Whatu Ora / Health New Zealand and Manatū Haouora/ the Ministry of Health, but is not funded as a disability – unless the individual has an IQ of 70 or lower (i.e. an Intellectual Disability or ID). Less than 20% of those with FASD have an ID and a formal assessment is required to find out whether this is the case.
If you have had a diagnosis for your child which proves they have an intellectual disability, you may be able to apply for DSS.
Click here for more information about DSS. They may recommend you talk to a Needs Assessment and Service Coordinator (NASC) to begin the process.
Find your local NASC on the Needs Assessment and Service Co-ordination Association website.
IF you find that your child is eligible for Disability Support Services, then you may also be able to claim other benefits such as Carer Support (respite care for you) or Individualised Funding (IF) - person-directed funding from Whaikaha which gives disabled people and their whānau more choice in how they are supported to live their lives fully.
This is a weekly payment from Work and Income NZ which helps carers supporting a child or young person whose parents can't care for them because of a family breakdown.
Find out more here.
Orphan's Benefit is a weekly payment which helps carers supporting a child or young person whose parents have died or can't be found, or can't look after them because they have a serious long-term health condition or incapacity.
Find out more here.
If you're caring for someone else's child and need help with pre-school or school-related costs at the beginning of the year, you may be able to get the School and Year Start-up Payment. It's a one-off payment of between $400-$550 depending on the age of the child. You must apply between mid-January and the end of February to receive this. Apply to WINZ.
Find out more here.
A weekly payment which may be available to help if you are caring full-time for someone.
You can apply through Work and Income NZ.
Find out more here.
This is a fortnightly payment made to the main carer of a child or young person under 18 with a serious disability or health condition.
This payment is for the extra care and attention that you need to give to a disabled child. It is a set amount and doesn't depend on your income, assets or costs.
Parents/caregivers may be eligible if: 1) they are the main carer of the young person, 2) they are a New Zealand citizen or permanent resident, 3) the young person has been assessed as needing constant care and attention for at least 12 months because of a serious disability.
Find out more here.
Whether you can get childcare subsidy and/or OSCAR subsidy depends on how much you and your partner earn. The amount you can earn and still receive childcare subsidy and OSCAR subsidy increased fairly substantially on 1 April 2023 so it may be worth checking if you are now able to get it.
The income thresholds and rates of subsidy are available here for OSCAR subsidy and here for childcare subsidy.
Childcare Subsidy
Childcare Subsidy is a payment that helps families with the cost of pre-school childcare.
If a child receives the Child Disability Allowance (CDA), you are entitled to childcare subsidy up to the age of 6, rather than 5.
Further information about childcare subsidy is available via Work and Income NZ here.
OSCAR subsidy
Out of School Care and Recreation (OSCAR) Subsidy is a payment which helps families with the costs of before and after school care, and holiday programmes.
To get the OSCAR Subsidy you must be the main carer of a child or young person who is under 14 years old (or under 18 years old if the main carer gets a Child Disability Allowance for them), and to be unable to take care of the child or young person because of your own work, study, illness or disability.
Further information about the OSCAR subsidy is available via Work and Income NZ here.
Weekly payment for people with regular, ongoing costs because of a disability (e.g., visits to the doctor, medicines, extra clothing or travel).
Young people (from 16 years) are eligible if they have a disability that is likely to last at least six months; have regular, ongoing costs due to the disability that another agency does not fully cover; are a New Zealand citizen or permanent resident; normally live in New Zealand and intend to stay here. Young people with FASD qualify if they meet criteria.
Young people can apply through Work and Income.
Find out more here.
A weekly payment which may be available to help if you have a health condition, injury, or disability.
You can apply through Work and Income.
Find out more here.
We have a handy flow chart for pathways to funding at school here.
Funded by the Ministries of Health and Education, and Oranga Tamariki.
HCN works with children and young people who have high and complex needs. They work with multiple government and non-government agencies to help families find positive solutions. The service is intensive and lasts between six to 24 months.
Young people may be eligible if they have high and complex needs across at least two sectors (education, health, and care and protection). Young people with suspected FASD qualify if they meet criteria. Two required agencies have to put in a joint referral.
Find out more here.
This is educational funding which may provide support for students with the highest ongoing levels of need for specialist support. The scheme enables them to attend school and participate alongside other students.
More info is available here.
Funded by the Ministry of Education, IWS is a support programme for young people aged 5–14 years who have behaviour, social and learning needs that are highly complex and challenging, and who require support at school, at home and in the community.
IWS takes a bespoke, comprehensive, holistic, youth- and family-driven approach. It has two key criteria: 1) there has to be a need in the school, home, and community, and 2) every other intervention has been used or attempted and was unable to meet needs.
A panel reviews all referrals and decides if the young person is accepted. Applications are made by Ministry of Education Learning Support staff, RTLB and day specialist schools, or fund-holder (ORS) schools.
More info is available here.
Funded by the NZ Police. The purpose of the flexi fund is to enhance tamariki / rangatahi wellbeing following family violence ‘through the purchase of one-off or timebound goods or services.’ This fund can be applied for on behalf of young people up to the age of 18.
More about this fund here.
If you have tamariki / children who with FASD and they are at school, then as caregivers, parents, grandparents and whānau, you will need to advocate strongly for them to enable them to live their best lives.
It can be helpful and empowering to be FASD-informed for this reason: you know your child best – what works and doesn't work for them – and if you can have informed discussions with staff, it's likely to have better outcomes.
There is no doubt that if tamariki with FASD can see the school years through there will be better life outcomes generally, so it's extremely important to begin interventions as early as possible.
If tamariki or rangatahi have suspected or diagnosed FASD, the school must be informed, and the first contact is likely to be your child's school SENCO – Special Education Needs Coordinator. (You'll come across lots of acronyms in education – there's a quick guide in the tab below.)
An essential and excellent resource is the Te Kete Ipurangi inclusive education page. Here you'll find everything you need to know about what's available for special needs students at every level of education, including funding.
PLEASE NOTE: for kaiako / teachers, SENCOs and RTLBS we have an Information for Educators page which is helpful for teachers to begin an understanding of how your FASD ākonga / student may behave and learn differently. Do pass this link on to your child's teacher so you can work together and be on the same page – the best outcomes happen when whānau and teachers have an open pathway to communication (although sadly this may not always be the case).
IWS, ORS, SENCOs and more - in getting funding and help in education, you may feel that your life begins to revolve around acronyms! Here's a FASD basic acronym dictionary for educational requirements.
At school, you and your FASD child will very likely need to develop a relationship with the Special Educational Needs Coordinator (SENCO for short) is a teacher who is responsible for special educational needs in school. Most schools in NZ are obliged to employ a SENCO, whose role is to ensure all students with learning disabilities are well equipped to obtain the right help and support they need at school.
Learning Support Coordinator; Resource Teacher of Learning and Behaviour; Resource Teacher Literacy.
IWS stands for Intensive Wraparound Service. The IWS supports tamariki who have behaviour, social and/or learning needs with a plan to meet each child’s needs. Their needs are highly complex and challenging and they require support at school, at home and in the community. The IWS plans are created to support tamariki at school, at home and in the community. Plans are designed to have a range of activities and interventions, including help from professionals, to help tamariki and whānau develop new skills. Click here for further information from the Ministry of Education.
The Ongoing Resourcing Scheme is for students with high or very high ongoing needs for learning support. For more details from the Ministry of Education, click here.
High and Complex Needs.
In-class Support Funding; Interim Response Funding.
Here's a handy graphic representation of where to start and who to talk to around getting the right help for your tamariki at school.
Click the image to download.
It can be very handy for teachers to have a printout for their wall as a first response resource for a quick reminder of strategy when dealing with students with FASD. This double-sided sheet can be downloaded and printed. Click here or on the pic to download.
It's often very helpful for teachers to have a one-page information sheet that they can keep on file to refer to which gives helpful tips about your child's strengths, challenges, tips on strategies and ways of communicating.
To this end, we've created a Word document that you can download and fill in, then print it out for your tamariki's teacher. We've also included an example sheet that's filled in.
Click here for the sample pdf (see below), and here for your blank Word document to fill in.
Whānau and caregivers in Aotearoa have little option but to be prepared to advocate tirelessly for their child at school – the great benefits of engaging closely with teachers and other educational professionals are well-documented and sadly there are still few clear pathways in our schools that take FASD into account.
From our own experiences, it's enormously important to take time to set up your tamariki at every level of school to enable them to avoid upsets and conflict, achieve their potential and become a valuable member of society.
If this is accomplished at a young age, the better the outcome is for them getting to high school and staying there – but if behavioural problems in early teenage years lead to exclusion from school there's a high chance that things may track badly for your rangatahi in their late teens.
Having said that, once everyone enabled to communicate and work positively together to identify strengths, create positive environments and healthy expectations, amazing successes can occur!
The best resource we have come across in terms of helping whanau and caregivers in Aotearoa to advocate for their FASD children comes from Western Australia Development Disability Council.
It covers issues such as:
Download 'Learning How to Advocate for your Child at School' here.
There is growing awareness of inclusive education both globally and within Aotearoa, but the various stakeholders involved find it hard to agree on. Here we give some background information about the movement – with our own interpretation of it at the end.
In 2008 New Zealand signed the United Nation’s Convention on the Rights of Persons with Disabilities (UNCRPD). Article 24 addressed the right of disabled people to an education.
In 2016 an internationally accepted definition of inclusive education was agreed in the United Nations. It is referred to as 'General Comment 4', and it was adopted to become part of Article 24 within the UNCRPD.
General Comment 4 states:
“The right to inclusive education encompasses a transformation in culture, policy and practice in all formal and informal educational environments to accommodate the differing requirements and identities of individual students, together with a commitment to remove the barriers that impede that possibility...
"Exclusion occurs when students are directly or indirectly prevented from or denied access to education in any form.
"Segregation occurs when the education of students with disabilities is provided in separate environments designed or used to respond to a particular impairment or to various impairments, in isolation from students without disabilities.
"Integration is the process of placing persons with disabilities in existing mainstream educational institutions with the understanding that they can adjust to the standardised requirements of such institutions.
"Inclusion involves a process of systemic reform embodying changes and modifications in content, teaching methods, approaches, structures and strategies in education to overcome barriers with a vision serving to provide all students of the relevant age range with an equitable and participatory learning experience and the environment that best corresponds to their requirements and preferences. Placing students with disabilities within mainstream classes without accompanying structural changes to, for example, organisation, curriculum and teaching and learning strategies, does not constitute inclusion. Furthermore, integration does not automatically guarantee the transition from segregation to inclusion.”
As at July 2023, the Ministry of Education’s portal Te Kete Ipurangi website states:
“Inclusive education is where all children and young people are engaged and achieve through being present, participating, learning and belonging…
"Inclusive education means that all learners are welcomed by their local early learning service and school, and are supported to play, learn, contribute and participate in all aspects of life at the school or service.
"It is underpinned by the belief that every learner has the potential to make a valuable contribution to the wellbeing of their family, whānau, community and to Aotearoa New Zealand as a whole. It asserts that our diversity is a strength.
"Inclusive education is also about how we develop and design our learning spaces and activities so that all learners are affirmed in their identity and can learn and participate together. It means deliberately identifying and removing barriers to learning and wellbeing.”
Schools in Aotearoa New Zealand are legally required to be inclusive under the Education and Training Act 2020. The right to an inclusive education is also reinforced by the New Zealand Disability Strategy.
The New Zealand Disability Action Plan 2019-2023 sets out priorities to advance the implementation of the UNCRPD and the New Zealand Disability Strategy 2016-2026. Outcome One of the Plan relates to education – click here to read it.
At the 2022 review of the New Zealand government’s compliance with its responsibilities under the UNCRPD, the Committee recommended (in clauses 40, 48 and 54 of their report):
Further details of the recommendations can be found here.
As New Zealand is a signatory to various international conventions that address inclusive education we are bound to the international definition of inclusive education reached in 2016. However, it is clear from reviewing information around the world, there are different interpretations of this definition that meet each country’s individual situations and contexts.
The inclusive education movement in Aotearoa New Zealand has been fighting long and hard for change in the education system, and true inclusion of disabled people in mainstream education. They want to see all residential special schools and special schools closed as soon as possible. They do not accept that these schools should remain an option available to disabled people and their families.
The movement argues these services and supports should be available in the local community. It also advocates for the prompt roll out of the EGL approach in education and argues strongly that inclusion in school is a human right and that New Zealand is currently breaching its international obligations.
FASD-CAN supports the inclusive education movement and the roll out of EGL to our neurodiverse ākonga. However many of our members, particularly caregiver members, want to retain specialist schools (both day and residential) as an education option available to them until the mainstream education system is appropriately set-up and funded to meet the complex needs of our FASD learners.
This is likely to take many years to achieve as it will require not only fundamental transformation and change to long-standing education systems, but also a deep shift in mindsets and belief systems in our communities about disabilities – neurodisabilities in particular.
FASD-CAN believes the definition of inclusive education in Aotearoa New Zealand must also be interpreted within the context of the EGL principles which the government has committed to implementing across its systems and processes.
FASD-CAN’s interpretation of inclusive education has an emphasis on self-determination (choice) and being person-centred as set in the EGL principles, but also recognising the role of whānau in decision-making, as is fundamental in the whānau ora principles.
“Inclusive education is where every ākonga / student is actively supported to reach their potential in partnership with family, whānau and kura / schools, where they have real choice and access to an equitable and mana-enhancing learning experience, in a learning environment that best meets their unique strengths, interests, social, emotional and learning needs.”
Education for tamariki with FASD has many obstacles which can often cause problems in the mainstream school environment.
Before beginning their educational journey, children with FASD may already be struggling with processing information, interpreting body language of others and following instructions. Many other skills are not developing in the same way as their peers, so fitting in at school can be a challenge and school refusal or challenging behaviour may be the result.
Home-schooling, or home education as it's most often now referred to as, can be a viable option for some families. While it does require commitment and has challenges, for those caring for a tamariki with FASD who is struggling in a mainstream school environment, it may be an opportunity to provide learning opportunities for your child in a quiet, calm, home environment, with a learning plan tailored to their specific needs. Some families find home education significantly reduces the anxiety and distress that can accompany school attendance and can lead to better outcomes.
There's an excellent page to consult about all aspects of home education here.
Children learn best when they are interested in a subject and the flexibility of home education allows this to happen regularly.
One of the biggest advantages to home schooling is the flexibility. You can tailor learning programs to suit you, your child and your lifestyle. This also means everyone ends up doing things a little differently.
Yes, you do. In New Zealand children between 6 – 16 years of age must attend a registered school, or have an exemption from school attendance. This exemption is granted by your local office of the Ministry of Education.
You’ll need to convince the Ministry officer that you are able to educate your child 'as regularly and as well' as a registered school. However you are not obliged to follow the national curriculum or create a mini-school at home.
The Ministry of Education, in considering your application, will want to know:
Contact your local Ministry of Education office for an exemption application form.
The Ministry of Education provides a small amount of assistance in the form of an annual ‘supervisory allowance'. This consists of $743 for the first child, $632 for the second, $521 for the third, and $372 for each one after that.
This is paid retrospectively, in two instalments each year, June and December.
There are a number of Homeschooling websites to consult in New Zealand – click here for a good place to start.
Many thanks to Kiwifamilies for some of the information on this page.
A company called Youthlaw has been providing free legal help for nearly 30 years to tamariki under the age of 25. They cover various issues including educational funding in NZ. Youthlaw staff solicitors are unique specialist practitioners – they are some of the only lawyers practising in the field of education law. They have the ability to assist with appeals of high needs special needs funding under Section 10 of the Education Act.
Click here for more info, call 0800 UTHLAW (0800 884 529) or email them at [email protected]. See below for flyer.
This is sadly an all-too-common scenario – and as with most punishments for ākonga / students with FASD, it doesn't work and merely serves to isolate and traumatise them further. Sometimes however, a school has no options. It's a big problem with many facets, but we have some practical advice, a webinar and some personal stories about school exclusion on our Resources page, here.
To get an idea on how FASD is currently handled within the education system in Aotearoa, we asked some local experts in FASD education one question each to establish the basics. Click on each name below to go to their opinion.
Claire Edwards - What are the most common problems for students with FASD at school, and how are these needs not met?
Tracey Jongens - What needs to happen ideally in schools for students with FASD and are there any signs of hope and change?
Vanna Blucher - From an educator’s perspective, how can teachers be better supported to allow students with FASD to achieve their potential?
The most common problem facing our tamariki/rangatahi within the education system reflects a much wider problem facing NZ: the lack of recognition of FASD as a disability and a general lack of awareness that FASD is a permanent, lifelong brain injury. This means that our tamariki often struggle to access support and funding as often they do not fit criteria and are not considered ‘bad enough’. Lack of funding results in a lack of support within the classroom (for both student and teacher), a place where our tamariki often struggle to cope with the demands and expectations placed upon them. Often funding comes as the ambulance at the bottom of the cliff when behaviours have escalated and come to a critical point.
There appears to be a distinct lack of training within teacher training institutes around FASD, so teachers are often unaware and not equipped with the skills to deal with the complexities our tamariki present. There is also little support for teachers who are often already dealing with large class numbers and other children with complex needs and neurodiversities.
This and a focus within the classroom on behaviourist techniques such as rewards and consequences (which do not suit children with FASD), often end in behaviours escalating and tamariki/rangatahi being labelled as ‘naughty’ and having behavioural problems.
Within early years and at primary school, our tamariki with FASD often seem to do quite well, possibly due to the more holistic emphasis on learning, but as they hit intermediate/high school there is a huge mismatch in terms of environment and expectations. The fact that they are expected to move from one class to another, one teacher to another and independently follow a timetable does not work well for our learners! If you add sensory processing and memory issues into the mix, it's easy to see how overwhelming this environment would be. Inabilities to regulate emotions without support could end in rangatahi being unable to cope and ending up in trouble.
Then there is the complexity of FASD itself and the fact that it is often ‘invisible’. There’s a saying: ‘if you’ve met one person with FASD, you’ve met one person with FASD!” Levels of skills within FASD can be so different and students can often present as coping on a surface level, but from one day to another they appear to be unable to complete tasks they had previously done.
Without educator training and understanding, it tends to paint a picture of a wilful, manipulative child, rather than a misunderstood one with a brain injury. Often in schools there is a disconnect between the school and the real experts on the child/tamaiti – the whānau! Instead of utilising the knowledge and skills that the whānau have, they can be blamed for behaviours and viewed as interfering parents.
Final thought: we must shift the goals for our learners with FASD from independence to interdependence!
Tracey is a founding member of FASD-CAN Inc. She has spent her life working in the education sector, including primary teaching, teacher training, working as a Resource Teacher of Learning and Behaviour (RTLB), and is currently Head of Department, supporting students with learning needs and leading the development of a programme to support students with ORS at Te Aratai College in Christchurch. Tracey has spent the last 10 years raising awareness around FASD within the education sector throughout NZ and Australia.
Whānaungatanga / relationship is the key to understanding young people with FASD. FASD is an individualised diagnosis. This means that each young person with FASD will have their own areas of strength, their own interests and their own challenges, and no two people with FASD are the same.
It is imperative that each young person is understood as the person they are, that their strengths are recognised and developed and that their challenges are supported. Whānau are the experts on their young people and it is vital that whānau, the young person and schools work together. Whānaungatanga is increasingly being recognised and embodied in practice by schools throughout Aotearoa / NZ.
A young person with FASD must experience success. This success may be possible with support or with scaffolds being provided. Regardless, success is still success. When a young person experiences success it is important that schools and teachers recognise that the success is possible due to the level of support given. It's vital that the support remains in place over time and is developed and built on.
When a teacher takes the time to connect with whānau, to get to know the young person in their care, to find the strengths in that young person, to reflect as the professional when things become challenging and to try a different way, then the young person will experience success.
Schools are providing more flexibility for their learners, recognising the need for inclusive practices such as Universal Design for Learning (UDL), and providing a range of learning and assessment opportunities for tamariki and rangatahi. The development of individualised learning pathways is providing opportunities for learners to learn in the ways that they can enjoy and have success in.
Alongside this is the need to recognise that young people with FASD need ‘time out’ or opportunities to calm. Classrooms can be over-stimulating. Young people with FASD need to focus so much more to self-regulate. It is vital that quiet spaces, ‘brain breaks’, physical activities and sensory supports are available and easily accessed.
As the saying goes ‘Rome wasn't built in a day’ – however, there's a lot to be thankful for in the development of education at this time. Schools and teachers are increasingly aware of the importance of wellbeing. Teachers are encouraged to be reflective practitioners. Whānaungatanga is developing in importance.
Policy from the Ministry of Education now includes FASD as part of the strategies and practice around supporting neurodiversity in schools. The Inclusive TKI website, an online education tool, has a well-researched guide on FASD with excellent strategies provided for teachers.
Vanna is SENCo at Hobsonville Point Secondary School, a Modern Learning Environment in Tāmaki Makaurau. She started her career in primary schools and worked in a range of roles including teacher, SENCo, literacy specialist, and acting deputy principal. She made the jump to high school teaching six years ago when she started at Hobsonville Point and she hasn’t looked back since. Vanna has a particular interest in celebrating the diversity of our learners and ensuring all students can feel success while still engaged in their passions.
Follow Vanna @vannablucher5
As for all neurodiverse learners, kaiako need to take the time to learn what each individual student needs to be successful. It is about knowing your learner and figuring out from a strengths-based perspective what is going to work for them in a classroom, and what success looks like to them.
Students with FASD need both a global and a personal understanding of what works. Most of the time, this understanding comes from trial and error and figuring out what doesn’t work. During this process it’s important to remain empathetic and communicate often with all stakeholders to prevent learning from feeling punitive or deficit-focused.
In our MLE environment we are able to use different spaces within our learning areas to help support overwhelm, or any other sensory issues that may present in a school day. This is reliant on staff being aware of the signs, and having the capability to make the needed shifts in behaviour or environment before anxiety or overwhelm presents. The student needs to be able to leave and reintegrate into the classroom without unnecessary attention.
A specific learning plan will help with guiding the learning journey, while keeping communication open and transparent between everyone working with the student. Whānau are key to this process and the meetings that take place need to be structured in such a way that all parties understand where things are at and what the next steps are.
For a learner with FASD, ensuring goals are achievable, sustainable and personalised will help support any strengths-based programme with support of your RTLB and any other support agencies.
I have made our staff a website which includes a number of helpful resources that can be looked at and used to help build their own understanding and capacity to support a wide range of learning needs, including FASD. By providing resources and reading materials for staff, classroom practice can keep growing and improving so that our learners are being catered for as best we can.
As with any child, it seems that just when you've got into a routine that's working, it's time to take the next step - and everything changes. For ākonga / students with FASD, coping with these changes can be enormous and overwhelming and for parents – well, the same usually applies!
Here are some links to explore to help with transitions throughout school.
• Care Matters website: successful transitions throughout school years
• Ministry of Education: lots of info here (aimed at kiako/teachers but good for parents, too) on the MoE's National Transition Guidelines
For teens thinking about moving into tertiary education or work, these sites will be helpful.
• SpectrumCare have programmes to help transition from school into work (along with many other services)
• CCS Disability Action have a helpful downloadable brochure on their website for transitioning from school to work
• Workbridge provide help nationally for your rangatahi or adult to find and keep a job
All universities and tertiary education providers have disability services to look after students who may need learning support.
Student Disability Services - The University of Auckland
Disability support services | Manukau Institute of Technology
Disability Support Services - Student Support - AUT
Disability Support Services | Study Support | Unitec
Disability Services – Victoria University of Wellington
Disability Services – University of Canterbury
Disability information and support – University of Otago
Disability services – Massey University
This relatively new social movement for disabled people could be good news for people living with FASD, their caregivers and whānau.
Enabling Good Lives (EGL) is a new approach to the support of disabled people. It originally came from members of the disability community who developed the concept. In 2012 the New Zealand government agreed to adopt and implement the EGL approach and principles across governmental services. Whaikaha (the Ministry of Disabled People) has been tasked with progressively rolling it out across Aotearoa in the coming years.
Its intent is to give more choice and control to people with a disability as well as their families and whānau, about how to make good lives for themselves and about the services and supports they receive.
An important element of EGL is a progressive societal shift in thinking about the disability community.
The medical model has been the accepted way of thinking about disability since the Industrial Revolution or earlier. It assumes that disabling impairment is a problem for the disabled person and they need to adapt or be ‘fixed’ to fit their environment and their society.
The social model of disability has been gaining traction since the disability rights movement in the 1970s and 1980s first proposed it. It holds that rather than impairment disabling a person, the barriers created by an inaccessible society are the disability.
The New Zealand Disability Strategy adopts the UNCRPD’s ‘social model’ of disability and has given rise to the Disability Action Plan 2019-2023.
*UPDATE February 2024: the UNCRPD's recommendations were presented to the NZ Government, who have commented and passed on an implementation strategy to the relevant government agencies. Eight recommendations were relevant to people with FASD and their whānau – you can read our roundup about this here.
“In the future, disabled people and their families will have greater choice and control over their lives and supports, and make more use of natural and universally available supports.”
Both this vision and principles below are based on respecting and trusting people with disabilities and their families and whānau to be the decision-makers about their own lives.
Underpinning the EGL vision are eight core principles as follows:
Disabled people are in control of their lives.
Invest early in families and whānau to support them; to be aspirational for their disabled child; to build community and natural supports; and to support disabled children to become independent, rather than waiting for a crisis before support is available.
Disabled people have supports that are tailored to their individual needs and goals, and that take a whole life approach rather than being split across programmes.
Disabled people are supported to live an everyday life in everyday places; and are regarded as citizens with opportunities for learning, employment, having a home and family, and social participation – like others at similar stages of life.
Disabled people are supported to access mainstream services before specialist disability services.
The abilities and contributions of disabled people and their families are recognised and respected.
Disabled people have supports that are simple to use and flexible.
Supports build and strengthen relationships between disabled people, their whānau and community. To find out more about the history of EGL, the approach and principles click here.
Yes. FASD meets the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) definition of disability. It is a brain and body-based disability that materially affects a person’s ability to participate equally and equitably in society.
FASD is also acknowledged by the Ministry of Health and Whaikaha as a disability. However, unlike other disabilities, people with FASD and their families are not eligible for Disability Support Services funding unless the person also has an intellectual disability (specifically an IQ below 70) or a debilitating mental illness.
FASD-CAN is actively working to get this inequity addressed as soon as possible.
New Zealand has been criticised for its slow roll-out of the EGL approach by the 2022 UNCRDP Review Committee, who recommended it be expedited to all people with disabilities.
The Review Committee specifically identified that EGL should include those people with FASD.
The Committee also recommended the New Zealand government ensure that people with FASD, along with other chronic conditions, “have access to the disability support system and are included in disabilities policies and programs”.
Implementation of an EGL approach in New Zealand’s education system was also considered as part of the recent Highest Needs Review undertaken by the Ministry of Education (MoE). Cabinet has asked MoE and Whaikaha to work together to consider how EGL can be applied in the education system.
As of late August 2023, the government has accepted the Review Committee's recommendations “with modifications”. Whaikaha is the lead government agency tasked with implementing this action and it will report back to Cabinet at the end of the year about its planned work to achieve this outcome. As yet, there is no indication of what “with modifications” means for the rollout or the inclusion of those with FASD.
However, the key message is that people with FASD and their caregivers, families and whānau need to be aware of EGL and that, if appropriately designed and implemented, positive change is on the way.
EGL webinar recording
NZ group 'VIPS in Education' founder Frian Wadia recorded this kōreo with Rebekah Corlett in February 2024 about EGL in education.
Some rangatahi may struggle with mental health issues which need professional help. Following are some of the more common concerns that young people may experience and how you can support them.
Most people, at some point in their life, struggle with low self-esteem. This may be especially true for a young person with a FASD diagnosis because they may feel different, have trouble socially or struggle in school. As a parent, there are things you can do to try and help your young person feel good about themselves, such as:
There are many reasons why young adults with FASD may experiment with drugs or alcohol, such as low self-esteem, peer influence, a need to fit in or as a way to cope with their feelings. Following is a list of strategies that may help you to support your teen.
Self-harming behaviours may take many forms, such as cutting, scratching, not eating, vomiting after eating (bulimia), not allowing wounds to heal, burning or hair pulling. It is important to know that self-harming is most often used as a way of coping.
This can be a tricky subject, but it's an extremely important one. It's very common for those affected by FASD to experience some complex issues around emerging sexuality which can become serious. It's essential for them to receive early, clear, repeated information around what is and what is not appropriate, alongside supervision where necessary.
Schools present sex education lessons for adolescents and teens but these can be confusing to those with FASD. And because young people with FASD want to be included, they can be a target for sexual advances by others – or can become involved in coercion themselves.
ISB can include inappropriate touching, promiscuous or dangerous sexual behaviour, sexual remarks, lack of physical boundary space, disrespect of privacy, masturbation in inappropriate settings, exposing ones’ self, voyeurism, and obscene or offensive language. Many of these problems can be mitigated by open discussion and clear boundaries which must be constantly reinforced as those with FASD transition into adulthood.
CanFASD, the Canadian National FASD research agency, produced an issue paper in 2018 on ISB in those with FASD. The purpose of this was "to highlight an overview of the current existing research conducted in this area and offer implications for individuals, families, caregivers, and policy makers." It is important reading – here are a few samples of their finding.
• Researchers estimated that ISBs are displayed by 45%-52% of adults with FASD. Rates of ISB associated with FASD appear to increase over the lifespan, with studies demonstrating the rates of ISB in children (ages 6-11) at 39%, 42% in adolescence (ages 12-20), and up to of 65% in adult males. The average age when ISB initially present is approximately 10 years old, although the age of emergence can vary.
• Individuals with developmental disabilities should receive sexual health education which is specifically informed by the person’s needs and disability.
• It is essential that FASD-informed approaches towards adopting healthy sexuality and properly addressing ISB are implemented to help individuals with FASD as part of holistic support. Individuals with FASD are sexual beings like everyone else and need to understand their sexuality and sexual needs in a healthy way.
The research concluded:
"ISB is frequently an adverse life outcome for individuals with FASD ... there is an obvious need for future research to address the significant gaps in this area. Future research should focus on investigations that better outline the cause of ISB in this population, as well as the assessment of FASD and ISB. Researchers also need to examine sex offender treatment programs for individuals with FASD and improve understanding about FASD amongst professionals addressing ISB, specifically those within legal settings contending with those experiencing trouble with the law as a result of ISB."
Click here to download and read this important paper.
Family Planning have created an excellent e-resource for those teaching or caring for intermediate and secondary students with learning disabilities, including FASD. The resource provides a framework to navigate Relationships and Sexuality Education with young people who may need extra support in understanding concepts in the standard curriculum.
Click here to go the website to download ($5).
Impulsivity, eagerness to please, lack of judgement and recklessness all contribute to a well-documented over-representation of rangatahi with FASD within our courts and penal system.
Many parents and caregivers have found it helpful to introduce their rangatahi to the local police. They can explain some of the basics of FASD to them and ensure that caregivers are called direct should their teen or young person get in trouble.
We have a pamphlet on our resources page which you can download and either email or print out to hand over to police – you could even encourage them to ask their colleagues to read it. Click here to access our police pamphlet.
There is more information for police on our professionals page under Police and Justice, including online training for them about FASD.
It can also be a good idea for your rangatahi to carry on them a health passport which they can hand to police that will inform them that they have FASD and also has contact numbers for you.
However, if problems with the law occur, it's very important to communicate clearly with professionals working in the justice system to ensure they can help both the parent and the young person get through this challenging time.
There is quality, FREE legal advice available from Youth Law - call 0800 UTHLAW, email at [email protected] or find them on Facebook here.
If your child has communication problems within a justice setting you may be able to access help from Talking Trouble Aotearoa. They can help with a Communication Assistant in Youth, District and High Courts and Family Group Conferences for witnesses or defendants who need assistance with understanding and participating in these settings.
This is a 20-minute presentation by Professor Anita Gibbs of the University of Otago. Professor Gibbs is a much-respected lecturer in sociology and criminology and is a registered social worker. Her research studies have included electronic monitoring, mental health, adoption, transcultural parenting, defining social work research, auto-ethnography, and FASD and its effects on families. Anita also facilitates a parent support group for families caring for individuals with FASD in Dunedin.
Anita and her partner have a birth daughter and two boys they adopted from Russia. She shares here a remarkable joint presentation with her teenage son Dima in the context of their own experiences in the NZ justice system.
‘What Works Well and What Doesn’t Work so well for young people with FASD in the Youth Justice System in Aotearoa New Zealand’ was part of a two-day virtual conference, 'Let's Continue the Conversation' at the Lakeland Centre for FASD in Canada in October 2021.
Click on the image below to go to the presentation.
Around Aotearoa there are many grandparents raising their mokopuna. It often comes with some big challenges, but you are not alone: a NZ group is dedicated to helping tūpuna raising grandchildren. It's the only organisation dedicated to providing information, advice, support and advocacy specifically for full-time grandparent caregivers.
Click here for more details.
Partners and fathers are enormously important when it comes to FASD.
Of course, the first role they play is in supporting their partners in an alcohol-free pregnancy, but if a diagnosis of FASD has been reached, there are many ways men can input into support, including as fathers or being mentors to young people, peers and role models.
Elizabeth Elliot, Chair of the advisory group for FASD-Hub Australia introduces this recording of a webinar on the subject held in September 2022 about the male role in FASD.
Click here to watch the video.
Other resources mentioned in the webinar can be accessed here:
In Aotearoa, we have a few support websites specifically for fathers including:
• Fathers for Families (ten week course through Family Success Matters)
and many more on Health Navigator NZ.
If you are a caregiver or parent of a tamariki or rangatahi with FASD, their long-term welfare is a worrying thought – if anything happens to you, or when eventually you die, who will look after them? What is their legal position and who will support them, understand their needs and make decisions about their welfare on their behalf if they are unable to do so?
You may be concerned about managing and protecting assets or income of your adult offspring. There are legal ramifications that need to be understood around family trusts, welfare guardianship, powers of attorney, property management and how a trust may be useful for managing property. And of course a will is essential.
New Zealand charity Disability Connect runs regular webinars and they have kindly allowed us to share the excellent list of digital resources they send out to their attendees afterwards.
You can subscribe to their newsletter here to stay updated on upcoming Disability Connect webinars (and their Transition Expo in September 2023).
Disability Connect webinars on this subject are run by lawyer Nan Jensen. You can check out Nan’s Facebook page (Abilityworx) and her YouTube channel where you can watch various videos on this subject.
• Health & Disability Commission links
– the Code of Health and Disability Services Consumers' Rights
• Enduring Power of Attorney info
• Legal Services | Disability Connect
We've curated some FASD training options for you to consider – both informal and formal.
Your listing of whānau-led FASD caregiver support groups who meet regularly around the country, including our OnLine support group.
Sign up to receive more information such as relevant news or events – it’s free, there’s no requirement for input from you, and there are some great benefits built in. By joining FASD-CAN you’ll gain access to specific resources, advocacy, webinars and hui, and you'll be sent a free printed copy of our Handbook.
But even better – by becoming part of our team, you’d be helping us out. Staying informed and sharing information with others means you’ll be walking alongside us as we campaign for those impacted by FASD for the right to live their best lives.
Join us now!
We’re celebrating a decade of growth, development and support for those living with FASD, so we got in touch with some of those founding members to ask them about the early days of FASD-CAN – and to look at what has happened in more recent times.
Read more
Do you have some time to help us help others? We often need volunteers to help with our activities, or who are able to offer support to others, start a support group, fundraise or assist at awareness-raising events. If you have expertise to share (and all of us who have lived with someone with FASD has built up some knowledge of behaviours, strategies, contacts and more), your skills could help others.
If time is short, other options for input could include joining one or both of our private Facebook groups to share information that may help others – our Parents and Professionals group or our Parents and Carers Support group.
And please consider contacting local MPs to ask for more recognition of FASD – your voice matters, and together we can be stronger!
