Source: New Zealand Government
Thank you very much for the generous welcome Reverend Reihana.
Thank you to Alcohol Healthwatch and your organising committee, including representatives from: FASD-CAN Aotearoa; Te Iho Tātai-ā-Rongo (the Māori FASD Coalition); Hauora Māori Services and Health Promotion Directorates, Health New Zealand; Oranga Tamariki; and the Centre for Addiction Research, University of Auckland, for inviting me to this important event.
Alongside the organising committee, I would also like to acknowledge Raawiri Ratuu, from Kookiri ki Taamakimakaurau Trust, and the advice and practical support he has provided in preparation for this symposium.
I am very pleased to be addressing the Fetal Alcohol Spectrum Disorder (FASD) community today.
I would like to take this moment now to recognise all of you and your tireless efforts and commitment.
FASD has gone under-recognised and under-supported for too long in New Zealand, but you have remained strong and dedicated as we now stand on the precipice of meaningful change.
I acknowledge that you have had to navigate difficult spaces, motivated by the love of family and community. Ngā mihi ki a koutou.
I would also like to acknowledge Alcohol Healthwatch for leading engagements with their community across New Zealand over the past two months. You have gathered valuable insights that will inform the revitalisation of the Government’s FASD Strategic Action Plan.
Along with FASD-CAN, Kookiri ki Taamaki Makaurau Trust, the Māori Coalition for Te Iho Tātai-ā-Rongo, Village Collective, and the whole FASD community, you have built a foundation upon which we can set our collective direction for FASD.
I believe families, whānau, professionals at the frontline and communities are best placed to know how to support people impacted by FASD.
I acknowledge the range of experiences and strengths you bring to this work, and this is is reflected in the approach we are taking to develop the new FASD Strategic Action Plan.
I am committed to keeping people at the front and center of this mission.
Only with the experiences, opportunities and solutions from people within and outside of the health system will we develop services truly respond to the needs of people affected by FASD.
Comments from FASD providers highlighted the importance of listening to communities, when they expressed, “the very first thing that this is about – is being heard and seen, that your story is true, valid and important. Just that, I reckon just that. I call it deep listening.”
I used to similarly observe as a GP, that often people just want to hear and be heard, see and be seen.
That’s what an engagement process is about. Listening to whānau. Listening to community.
I intend to continue listening to all voices. Even when it is hard. Even when it is challenging. I will listen.
In April this year, I committed this Government to taking meaningful, tangible action to address FASD in New Zealand.
I announced a first tranche of initiatives, with $2 million of funding across five key initiatives:
- Publishing the first New Zealand-specific FASD diagnostic guidelines.
- Training up to 30 health professionals from Child Development Services to use these new guidelines.
- Launching A nationwide FASD prevention campaign.
- Establishing an FASD pilot programme to support Māori communities and whānau living with FASD, and
- Revitalising the FASD Strategic Action Plan.
We are already seeing considerable progress on these actions.
Publication of the new FASD guidelines occurred in April and diagnostic training has already started, in collaboration with Hāpai Te Hauora, and the first group of 30 clinicians will have completed their training by the end of the year.
This will further grow a health workforce that is better equipped to understand and support the needs of people with FASD and their families.
Health New Zealand are now co-designing the prevention campaign with a group of young people who represent the next generation of parents, as well as their support people, whānau, hapū and iwi.
The campaign focuses on preventing and raising awareness about FASD and its effects on communities and will launch before the end of this year.
The FASD community pilot programme started in May this year and is being delivered by the Māori Coalition for Te Iho Tātai-ā-Rongo (FASD).
This is a comprehensive programme that includes a series of regional wānanga with communities that have been identified with FASD high needs.
These wānanga focus on whānau living with FASD, health professionals and has a particular focus in setting up peer support.
In addition, they have completed a national online conference bringing together Māori researchers, policy makers, clinicians and representation from Te Kāhui Taurikura.
The coalition is building FASD capacity within regions with stakeholder hui with workforce and whānau living with FASD.
They have Te Whare ō Oro training that is in alignment with the wānanga which introduces neurodiversity training into these pilot areas.
Finally, the revitalisation of the FASD Strategic Action Plan is well underway. Community engagement was completed at the end of August, and health agencies are now actively developing the priorities that will make up the plan.
I know health agencies will be further consulting key FASD organisations and networks, as well as clinicians and sector experts, in the first quarter of 2025 on the draft plan.
I expect groups that led the community engagement will be able to see their contributions reflected in that draft plan, which will outline a phased and coordinated approach to addressing FASD over the coming years.
As I said in April, these are only the first steps the Government is taking to drive action on FASD. I signaled a clear intention to introduce further initiatives that will build momentum and further our knowledge and understanding of FASD.
I reflect again on the voices of the community in setting further FASD priorities today.
One FASD observer has noted, “Pretty much every professional group would gain hugely from understanding and then reframing their responses as a result… It seems to me that actually our whole society needs education on what FASD is and its impacts.”
I agree.
An important part of advancing FASD is lifting literacy and actions across all areas where there are opportunities to prevent FASD or provide support to people with FASD.
This includes in the community, in healthcare settings, the education system, children’s system and the justice system.
That’s why today I am confirming $4.85 million of funding, for a second tranche of three more key FASD initiatives.
I expect to make further announcements on FASD in the build up to the release of the FASD Strategic Action Plan next year.
This funding is made possible through a lift to the Alcohol Levy that Cabinet agreed to in July.
This took the levy from approximately $11.5m to $16.6m – a boost of more than $5 million this year.
There were criticisms that the levy was not actually raised high enough, and I understand this.
However, it demonstrates a willingness on the part of the Government to fund our priority actions that deliver tangible outcomes, and given this is the first rise in the alcohol levy in 15 years.
We have taken a microscope to what the levy is being spent on and it is not clear to me that all the initiatives have delivered tangible, positive health outcomes for New Zealanders.
Evidence-based outcomes is a key principle of this Government’s investments – every initiative must provide clear, demonstrable value to communities.
That is the challenge I put to you, as together we design the FASD Strategic Action Plan. Demonstrate how your initiatives and proposals will make a tangible difference for New Zealanders.
$4.85 million is a sizeable commitment to the FASD work programme and builds on the $2 million I announced for tranche one initiatives in April – bringing our total investment in FASD support and prevention to date, to $6.85 million.
The tranche two initiatives announced today are:
- Undertaking an FASD prevalence study, to understand the true nature of the challenge FASD presents in New Zealand, rather than relying on extrapolated overseas data. We will have our own, New Zealand data.
- Growing FASD awareness and capacity across communities and a range of health, disability, and social services, with formal, structured education.
- Supporting initiatives that promote alcohol-free pregnancies and reduce the stigma of FASD.
The three year prevalence study will start in mid-2025. It will focus on both the prevalence and impact of FASD in New Zealand, and how demographic, socio-economic, and maternal factors influence the occurrence and diagnosis of FASD among different populations.
The aim is for this study to screen a minimum of 2500 children, in line with World Health Organization FASD prevalence research protocols. Children will be identified through targeted school settings in high-risk locations.
Growing FASD awareness and capacity within communities and across a range of health, disability, and social services professionals will occur through a range of training opportunities being made available.
These will include:
- Developing a new micro-credential training programme for the recently developed NZQA-approved unit standards. Development and delivery of this training will be undertaken in close collaboration with subject matter experts and will be relevant and accessible for a range of different audiences and training cohorts, including families and carers.
- Developing and implementing non-clinical training for communities to increase FASD awareness. This training will align to current activities with the FASD community pilot programme and other localised support programmes.
- Funding a second clinical cohort of 30 Child Development Services professionals to undertake training based on New Zealand’s FASD diagnostic guidelines.
Supporting prevention and reducing stigma around FASD will include: expanding our evaluation cohort for the nation-wide prevention campaign which will provide insights into the campaign messaging and implementation. In collaboration with sector partners we have supported with resource to highlight FASD awareness month.
These priorities are direct responses to community-led efforts and demonstrate the importance of community advocacy and voice in all parts of the health system.
For instance, the new FASD micro-credential training that includes NZQA unit standards will support best practice for people working alongside and engaging with people living with FASD. These unit standards were developed collaboratively by Hayley Semenoff and the team at Toitū te Waiora workforce development council and FASD-CAN Aotearoa.
This training will reflect a shared aspiration with the FASD community for a workforce with an FASD-informed lens, who will be our frontline change agents. They will be competent and confident supporting people impacted by FASD across their lifespan and in different settings, including health, education, disability, and justice systems.
Health NZ is still in the early stages of work on these priorities. I expect to continue to update the FASD community as they progress in the lead up to the launch of the FASD Strategic Action Plan next year.
We remain committed to driving change and improving health outcomes for all New Zealanders, and particularly those who experience the worst health outcomes.
That won’t come without its challenges. Achieving change has been hard for previous governments and will be hard for me too. But these challenges provide opportunities. Opportunities to sharpen our focus on what matters most and actions that will make the biggest impacts on people’s lives.
I believe in bringing care and decision making close to the home and closer to the hapū, and I recognise the unique qualities Māori health providers bring and the importance of local providers delivering services within their communities.
I look forward to seeing what opportunities there are for local and community initiatives to better support people with FASD, to consider as part of the refreshed FASD Strategic Action Plan.
One of the greatest challenges is in fully understanding the prevalence and extent of FASD in New Zealand. This is, in part, due to complexities and barriers to formal diagnosis and national data collection. These barriers limit our ability to intervene effectively and tailor supports to local needs.
We need to better understand FASD prevalence across New Zealand, which means we can deliver more effective and targeted prevention and early intervention activities and then measure their impact.
This is why the announcements I have made today are so important. But I want to make clear that gaps in what we know about the prevalence of FASD does not distract from its very real impacts.
We must remember our context, where an estimated three to five children in New Zealand are born with FASD every day.
We know we must address this and the primary mechanism we have is through the refreshed FASD Strategic Action Plan.
Over the next 12 months, I hope to build an approach that will further support the prevention of FASD and identify critical points in the lifespan of individuals with FASD where we can make the greatest difference.
The community voices and insights captured over the past two months will be vital to that, and I acknowledge the wider alcohol prevention work that Rawiri and his team have undertaken with the Kaupapa Te Ropū report on alcohol harm for Māori.
However, until the long-term action plan is published next year, we have listened to the best community and expert advice and have already made a start, with an investment of over $6.85 million across eight initiatives aimed at better understanding the impact of FASD, promoting better education in community and clinical settings and supporting women to stay alcohol free during pregnancy.
Three to five children are born with FASD every day – that’s why there’s no time to wait.
We want New Zealand to be a country where people are supported to have alcohol-free pregnancies, where the prevalence of FASD is well understood, where quality FASD diagnostic tools and training are widely used, and people living with FASD and their families are well supported.
Finally, I would like to reflect on the theme of this conference, ‘Ko te FASD kei a hau, ehara i a hau. FASD is what I have NOT who I am’.
To me, this is a powerful message which tackles both the issues of stigma, and most importantly, aspiration.
The aspirations of individuals, families, carers, and the whole FASD community, to lead thriving lives. Lives in which people with FASD, can pursue education, employment, and meaningful connections with friends, families, and communities.
While FASD might have lifelong impacts, it should not be a life sentence. We have the chance to change that. To build on our strengths and not be defined by a diagnosis.
That’s my vision for the future.
