Many meetings and discussions have occurred 16. We have exercised our advocacy mandate tirelessly on this issue, in partnership with FASD-CAN and others. But little real progress has been made. There have been numerous meetings between officials, Ministers, FASD-CAN and other advocates (including ourselves) over the years. Some good relationships have been developed. Nothing in this report is intended as a reproach of individual agencies. Rather, our hope is that by raising the issues in this report, the Prime Minister and other Ministers will direct the necessary changes required across agencies to better support the FASD community. 17. While much of this report focuses on the challenges associated with FASD, because this validates the experience and facts, we wish to emphasise that individuals with FASD can thrive with the right support. We hope this report helps lead to all people with FASD having an equal opportunity to thrive in New Zealand. Identification of the Issues What is FASD? 18. FASD is a lifelong disability. Individuals with FASD will experience some degree of challenge in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills to reach their full potential. Every individual with FASD is unique and has areas of both strengths and challenges8. 19. While the “S” in FASD refers to ‘spectrum’, we wish to make it clear that FASD is not on a continuum with mild, moderate and severe cases, as is often thought. Only those prenatally exposed to alcohol with severe impairments reach the diagnostic criteria for FASD. Individuals with FASD show differing profiles of strength and impairment that can be considered to sit on a spectrum rather than a continuum. In fact, those with a very low IQ tend to have better outcomes than those of higher ability so cannot be considered to be more severely affected. All individuals diagnosed with FASD will be differently rather than more or less impacted 9. 20. This section of the report identifies the multiple gaps in New Zealand’s response to FASD. Lack of Prevalence data for New Zealand 21. The Ministry of Health suggests that around 1800 babies with FASD are born each year, but this is an estimate only, and is likely to be a significant under-estimate. Based on overseas studies and New Zealand’s drinking patterns, which is a pattern of rising hazardous drinking among women of child-bearing age, the 2-3% prevalence rate established in Canada10 is an appropriate guide for New Zealand, and even then, it may well be significantly “under counting” the New Zealand position. At a bare minimum, this would mean approximately 1800 new cases of FASD per year in New Zealand. 22. The World Health Statistics 2017 shows New Zealand’s consumption of alcohol per person at 10.1L and Canada’s consumption at 10L per capita. It should be noted that the 2016 global level of alcohol consumption was 6.4L per capita11. 8 Canadian Guidelines: FASD: A Guideline for Diagnosis Across the Lifespan 2015 Dr Valerie McGinn,Neuropsychologist, The FASD Centre, Aoteroa 10 Population-based Prevalence of Fetal Alcohol Spectrum Disorder in Canada: BMC Public Health (2019) 11 World Health Statistics 2017: Monitoring Health for the SDGs 9 4