A brief round up of the Hui
Our Hui was held in Kirikiriroa / Hamilton at the Distinction Hotel, over the weekend of the 9/10 of September – an appropriate date, since September 9 is, of course, International FASD Awareness Day. Over 220 caregivers, whānau, professionals and individuals took part in the Hui – it was a weekend of information, education and networking.
Saturday was a full day from 8.30am-5pm, and Sunday just a half-day – both days had something for everyone. The Hui was free to attend for caregivers and individuals with FASD; professionals were asked to pay a $60 fee.
• We marked the 10th anniversary of FASD-CAN.
• We updated members on the latest FASD research in Aotearoa.
• There was a symposium on Mental Health and FASD, with a fantastic line up of NZ and international speakers.
• There were parallel sessions on practical strategy for caregivers.
• We shone a spotlight on FASD professionals and awareness in the Waikato.
• We looked at the progress made since the 2106-2019 FASD Action Plan.
• Our caregiver support group facilitators from all over the motu came together for the first time in a separate programme for training and discussion.
Hui 2023 programme and speaker info
• For our main Hui programme – click here.
• Our programme for those living with FASD – click here.
• For info on our speakers – click here.
Hui Video Recordings
Click below to watch, and please feel free to share.
Saturday, Day One: Part One
The Hui began with an extraordinary and emotional look at the history of FASD in Aotearoa – the sheer, bloody-minded determination of a small group of caregivers, parents and experts who wouldn't take no for an answer. Our patron, Judge Tony Fitzgerald, chaired these sessions and he speaks passionately and unflinchingly about the history of justice – and of course, the miscarriages of justice – in NZ courts for people with FASD, and asks how we can do better in the future.
Saturday, Day One: Part Two
The key theme of our Hui this year was mental health. As our Principal Advisor Kim Milne says in her introduction, mental health plays an enormous role in parenting tamariki and rangatahi with FASD, and negative facts and figures can feel overwhelming. "The literature around it can feel quite hopeless, but the narrative and the research has really shifted from deficit-based approaches to strength-based approaches; to hope and healthy outcomes."
In Part Two you'll hear Dr Jamie Speeden discuss changes in FASD-awareness in the psychiatric world in Aotearoa (alongside the realisation that we have a long way to go in this very challenged field), then Canadian forensic psychiatrist Dr Mansfield Mela talks from a more clinical angle on the latest mental health research.
NZ-specific updates on FASD from a government angle included Ben O'Meara from Whaikaha, the Ministry for Disabled People; while Claudia Boyles (Chief Disability Advisor at Oranga Tamariki) and Peter Whitcombe (Chief Social Worker Oranga Tamariki) gave critical updates around FASD within OT.
Canadian Natascha Lawrence of the The FASD Institute spoke on mental health, substance use and addiction. Her empathy and compassion, together with her many engaging metaphors around how the brain works for people with FASD, were revelatory. An apology – Natascha's Zoom recording in the corner of the recording is a little patchy, but the audio and slides are fine.
Sunday – Day Two, Part One
In this recording our Chair, Dr Leigh Henderson, talks about the history of the FASD Action Plan, followed by Harsh Vardhan and Peter Carter, then both of Te Whatu Ora (see speaker info on the link below for more info) discussing future directions for FASD in Aotearoa from a policy perspective.
Sunday – Day Two, Part Two
The development of new diagnostic guidelines for FASD over the course of the last year has been a huge undertaking, involving multiple wānanga and hui around Aotearoa / NZ. FASD-CAN Navigator Tania Henderson was involved with the team every step of the way and in the first presentation after lunch on Sunday she talked us through it.
The second presentation of the afternoon was Lizzie Strickett with the results of her research on Māori whānau living with a family member/s diagnosed with FASD: their experiences of different support systems and how these worked (or didn't work) for them and what they found most useful.
Our third and final speaker was Liz Smith, co-founder and partner at Litmus, a research company with 20 years of specialist experience in social research and evaluation. They have been conducting a study of how the health system in Aotearoa responds to children with diagnosed or probable FASD to identify current gaps and future opportunities. The research was done in two age groups, 0-10 and 11-18 and was based on the FASD Action Plan 2016-2019. A report is due out in early 2024.
Professor Anita Gibbs: 'Caring in the Chaos - How caregivers of people living with FASD survive and thrive'
Finally for our recordings, one of the most popular of the Hui. Professor Gibbs is an enormously valuable part of the FASD-CAN team. She has assisted us in numerous areas of consulting and advocacy, she lectures at the University of Otago on FASD in the justice system, and has her own valuable lived experience caring for her own young person with FASD. Her presentation managed to be educational, hilarious and very honest about the challenges of caring for a loved one with FASD.
The voice of lived experience at the FASD-CAN Hui
All our survey respondents agreed that there were many excellent sessions, but the highlight for all was witnessing the confidence and eloquence of our rangatahi with FASD at the end of Saturday. It was very different to our 2022 Hui which was, for most of them, the first time they had met others living similar lives they could relate to.
Since then they’ve got to know each through getting together regularly at Pizza Club in Tāmaki Makaurau and these friendships were evident as they vied enthusiastically for the microphone to answer participants’ questions about their experience of living with FASD and how best to support them. The session was 20 minutes on the programme, but ended up stretching over a wonderful hour.
We did not record this session at the request of the speakers – but we are hoping to this year support some who have expressed an interest in developing their public speaking. It gave us all so much hope and validated our commitment to continue to provide spaces for rangatahi to connect, and the deep importance of hearing their voices.
Some of our participants shared what they got out of the conference with us, including the following from caregivers:
“A lot of information and understanding of behaviours that my grandchild had. I got so many answers to her behaviour, it was fantastic and very rewarding to have all this knowledge of FASD.”
“An awareness of what is happening in Aotearoa around building awareness, diagnosis and support. An opportunity to connect with others from all fields (health, justice, education, caregivers).”
“Clarity. Comfort. A sense of belonging. Kotahitanga (unity). Validation.”
Professionals (nearly 80 of them) were also happy:
“Increased my knowledge, helped me to structure my thinking around gaps in our service and how we might address them.”
“Lots of knowledge and great FASD CAN resources. Family and youth voice so important to my own reflection on my practice.”
Some feedback asked for more time to network at the Hui and we are keen to build that in next time.
Clockwise from top left: our resource table; the ten-year anniversary team (L-R: FASD-CAN Chair Dr Leigh Henderson, founder Claire Gyde, patron Judge Tony Fitzgerald, Christine Rogan ONZM and clinical advisor Dr Valerie McGinn); a few of the team (Te Tai Tokerau / Northland Navigator RuruHana Brownie, Tracey Stimpson, Tāmaki Makaurau / Auckland Navigator Anna Gundesen); the karakia; healthy snacks; the sustainable frisbee given out to the rangatahi with FASD - which reads 'With the right support, people with FASD can FLY!'