FASD-CAN Newsletter Dec 21

A Word From Our Chair ­– December 2021

As I look out of my window, I see an amazing glory of pohutakawa trees. What an uplifting sight, and what a welcome thought that we’re now entering the holiday season!

As the year draws to a close, it’s customary to reflect on the year that was and look hopefully toward the next. Without a doubt it’s been a tough one for many, especially those who did the hard yards during a prolonged lockdown in Auckland. Like many others in the disability community, some of our whānau struggled with the isolation and unavailability of the support they rely on to ease the daily travails of their lives. Some of our tamariki struggled with the lack of routine, social interaction and anxiety about the future. Parents and caregivers had to cope with less time for self-care, and juggling care responsibilities with teaching young ones and even paid work. So it’s time to congratulate ourselves – we survived!

We announced this time last year that we had received our first government funding. This has enabled us to employ a navigator in Tāmaki Makaurau, redesign our website (launch due early 2022), commence a webinar series on FASD which has relevance for those in Aotearoa and prepare a Whānau Direct Grant Scheme for FASD-CAN members. This will be launched along with our new website.

During the year we were fortunate to receive seed funding from Oranga Tamariki to enable us to be in a better position to deliver support and services to those who are caring for individuals with FASD. We used this to build our infrastructure, governance and contract administration (Maureen) and communications (Kathy) to assist the Board, who are all volunteers. We are currently finalising the recruitment of our first employee.

Volunteers are the lifeblood of a charity and this year I’d like to acknowledge the help of many. They helped with the website development, with the navigator recruitment panel, running our annual hui, attended important advocacy meetings with OT and MOH, provided legal advice on contracts, responded to media requests to continue to raise awareness of FASD and provided personal advocacy assistance or advice when enquiries have come in to FASD-CAN. It has been a year of many consultations and government hearings, too – particularly the Abuse in Care Inquiry and the development of the Anti-Violence Strategy. There’s been consultation around the Learning Support action plan and the projects being implemented as the second tranche of the government’s FASD action plan. Sharing the load with volunteers has helped us make our voices heard on many fronts. Thank you to one and all.

As educational intervention for our tamariki with FASD is such an important factor in mitigating the secondary effects of FASD, this year we set up an education sub-committee. We worked together to identify an appropriate resource for schools and provide input into funding of children in education, as well as policy around special schools. This group will help us move forward and represent the interests of those with FASD in the education system. We’re grateful for a donation from the Women’s Christian Temperance Union for a donation to assist with the development of a resource on FASD for schools.

We have recently been advised of the retirement of Christine Rogan from Alcohol Healthwatch. Christine has worked tirelessly for the past two decades to raise the profile of FASD in Aotearoa, the need for prevention and for support. She helped found FASD and has been a fantastic source of knowledge and support for the committee since its formation. We’d like to thank Christine for her unwavering advocacy and support and wish her well in retirement. We will miss her greatly.

A highlight of the year was the release of the report prepared by the Disability Commissioner and the Commissioner for Children for the Prime Minister, which included input from FASD-CAN. The unwavering advocacy of Paula and Andrew for the human rights of those with FASD has been inspiring. We stand by with bated breath for the response to that report.

The absolute requirement for self-care and looking after yourself is a core principle of any training on FASD. For many, the holiday season is a time for rejuvenation, recharging batteries and preparing for the year ahead. For those who anticipate the time to be more challenging, remember that FASD-CAN was set up to encourage connections between caregivers. Our parents and caregivers Facebook group is a good place to go if you are feeling down, want to vent, or simply want some advice. We also welcome it as a place to share successes and highlights – and we have been delighted to read about some of them this year.

Wishing you all the best for the Christmas break and for the New Year.

Kia pai ngā hararei (make those holidays good).

Leigh Henderson


** RECORDING OF ** FASD AWARENESS DAY 2021 AOTEAROA NEW ZEALAND Thursday 9 September 9 am – 10 am

Alcohol Healthwatch and University of Auckland’s School of Population Health, co-hosted FASD Awareness Day on 9 September 2021 via Zoom webinar during Covid-19 restrictions.

FASD-CAN were invited speakers as were Judge Andrew Becroft Children’s Commissioner and Paula Tesoriero Disabilities Rights Commissioner. Listen here to hear the 1-hour presentation from FASD Awareness Day 2021


Australian Foundations in FASD online training course

NOFASD Australia has launched the Australian Foundations in FASD online training course, Australia’s newest, evidence-based FASD course. Funding for the project, came through  the National Disability Insurance Scheme and supported by the Australian Government, Department of Health, through their support of the NOFASD website.  The Collaboration means the course is FREE! You can watch the 45 second introduction video here or enrol now via the NOFASD Website.

FASD UPDATE from Christine Rogan at Alcohol Healthwatch March 2020

Kia ora FANNZ

This is an important last chance opportunity for you to show support for Ministers deciding on the most effective pregnancy warning label, which remains under threat of derailment by vested interests.  FARE in Australia have created an online letter you can send to Ministers including our Minister for Food Safety Hon Damien O’Connor, who together will have the final say sometime this month.

As you will see in our attached media release, Alcohol Healthwatch commends FSANZ and our own Minister for Food Safety Damien O’Connor for their support of an effective mandatory label. However, like FARE and others in public health, we are deeply concerned at liquor industry attempts to undermine and potentially water down a mandated label (example https://www.abc.net.au/news/rural/2020-02-21/new-wine-labels-warning-pregnant-women-about-drinking-alcohol/11985468).

Ministers need to know they have public backing for the most effective option.  It’s easy. Just click, enter ‘NZ’ & send https://fareaustralia.good.do/campaign/pregnancywarninglabel/] – and feel free to share the opportunity with others.

Thank you and thanks to the FARE team once again!

Christine Rogan

Health Promotion Advisor and FASD Project Coordinator

FASD Events for your 2020 diaries

9th International Research Conference on Adolescents and Adults with FASD

April 22-25, 2020. Vancouver, BC, Canada


Save the Date!! 3rd Biannual Australasian FASD Conference Sydney 11-12 November 2020.  http://fasdconference.com


Hosted by theFASD Research Australia Centre of Research Excellence. Details and Call for Abstracts to follow soon.




Paula Tesoriero, Disabilities Commissioner speech at the FASD-Can HUI on Saturday 7th September

We must uphold the rights of people with Fetal Alcohol Spectrum Disorder (FASD)

September 9, 2019

E ngā mana, e ngā reo, raurangatira mā

Tena koutou katoa

Ko Paula Tesoriero ahau

Ko au te Kaihautu Tika Hau

Atanga mō te Kāhui Tika Tangata ki Aotearoa

Nō reira, tēnā koutou, tēnā koutou, tēnā koutou katoa.

Mauri tangata, Mauri ora

Thank you for the opportunity to speak to you today as Disability Rights Commissioner.

My role under the Human Rights Act is to protect and promote the rights of disabled New Zealanders.  My role is independent from the Government. Among other aspects to the role, I am required to hold government to account for ensuring human rights obligations are advanced.

My own journey to this role was predominantly through the lens of a physical disability.  I have a prosthetic leg on one side, and my lower leg on the other side is missing some functionality below the knee.

So one of the key areas I needed to learn about fast in this role was neuro-disability. In terms of FASD, Claire, Valerie and Christine were instrumental in helping me understand this more.  They are great champions of yours and, having been at various meetings with Ministers with these 3 amazing ladies, I can confirm they don’t hold back in advocating for change in this area.

I am often asked to attend meetings with Ministers in support of different groups, and I simply can’t attend them all and nor would it be appropriate to. But I do attend meetings on FASD in support of the network because I firmly believe there is an urgency to address the lack of support.

Thank you for letting me be here today. I know it can be painful repeating stories, but your stories are powerful so please share them with me- it helps me do my job better.

I will be wearing my red shoes/lapel badge on Monday in support of the September Red Shoes Rock campaign to raise awareness of FASD.

Not only does the public need to be more aware of the barriers people affected by FASD face, but so do the policymakers. FASD must be recognised as a disability so that people, like many of you in this room, can access the supports and services needed from the government and in the community to build strategies that help them fully participate.

There is no debate in international or domestic law: FASD is a disability. FASD falls into both the definition of disability in the Disability Convention and the New Zealand Human Rights Act.

If it is not clearly understood that FASD is a disability, then individuals and their families cannot access the supports and services they need. I have heard many stories of people being turned down for things like respite care because they do not meet the Ministry of Health eligibility criteria. I’m sure you have your own stories.

My hope and my efforts are for a society that removes the barriers, one that values and includes disabled people and their whānau.

The Ministry of Health suggests that around 1800 babies with FASD are born each year but this is an estimate, and possibly an under-estimate. To properly identify, plan and budget around the size of the population affected by FASD within the New Zealand context, research into its prevalence here is urgently needed.

Myself and Children’s Commissioner Andrew Becroft continue to raise the following issues with Government Ministers.

  1. That the definition of ‘disability’ needs to be widened to include FASD.  The “below 70 IQ” definition excludes many with FASD who need significant help.
  2. The need for respite care, in particular for families struggling with children and young people with FASD.
  3. The need for better collaborative work across government departments, including Health, Education, Police and Justice, to address the FASD issue and to avoid parallel work streams. People with FASD and families must be part of this collaboration. This is not an ‘us and them’ situation but rather a ‘us working alongside them’ proposal in order to get some positive outcomes for families.
  4. The continuing issue of a lack of a FASD prevalence study. We suspect that the 3-5% prevalence rate established in Canada is probably “under counting” the New Zealand position. Given 60,000 live births annually, that is potentially (a minimum) of 3,000 new births per year with FASD.
  5. What happened for autism, some years ago, was a game changer (for autism services), and we are looking for exactly the same with FASD.  Rather than delay supports for FASD, this Government could proceed on both fronts at the same time: progress with FASD responses and a holistic, joined up coordinated response to all neuro-developmental difficulties.

We also need to ensure that there is a cross-agency response to FASD in New Zealand – what data is collected, who has access to this data, how is it used. This means that all agencies need to be using definitions that are consistent with the Disability Convention for the purposes of data collection.

Accurate diagnosis of FASD requires a specialised, multidisciplinary assessment.  New Zealand has very few specialist diagnostic centres and little research and consequently FASD remains significantly under-recognised and the needs of the affected individual and their families unaddressed.

Article 1 of the Disability Convention defines a disabled person as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”.

For disabled people, it is the barriers they face that mean they cannot fully participate in society on an equal basis – not a medical classification. This is true of people with FASD.

How we define or discuss it FASD has a profound impact on children, whānau and society. We need to provide individuals and families with the supports at the right time and in the right way and the next step in the MOH FASD Action Plan must allow for this.

Services and supports need to evolve as young people age, and to respond to individual circumstances. Studies are showing that people with neurodiversity including FASD, are disproportionately represented in Justice and Police stats, and this is particularly true of the stats for young people. It’s good to see initiatives such as the Talking Troubles project to provide communication systems for young people facing communication barriers in the Justice system.

Failure to provide adequate learning support and specialist services for children and young people with communication difficulties can result in lifelong disadvantage. A well as higher chance of being caught up in the Justice system, this can include barriers to entering the workforce and obtaining well paid employment, and lead to disproportionately high rates of unemployment.

I’ve been talking with the Police about including training for recruits in communicating more effectively with disabled people and challenging their own assumptions about how people present to them.

A human rights approach stands in clear contrast to the traditional “medical approach” to disability issues, which tends to describe an individual’s differences as deficits. Instead, a human rights approach celebrates diversity, emphasises individual strengths and serves to highlight systemic shortcomings in accommodating diversity amongst individuals.

Working in a human rights-based way means ensuring that children with speech, language, communication needs can exercise agency in their own lives, including a focus on listening to children’s voices, collaborating with teachers and working in partnership with families and whānau and a capabilities-approach to building communications skills.

So my hope is that people will take a moment in September to learn something new about FASD and so help to create a circle of care around those living with this disability.

With this increased understanding at societal level, we can help improve lives and outcomes.

I will continue being a champion and work alongside you for change.