are currently excluded and for simplifying the system to make it easier for people more widely to access appropriate supports Aotearoa-specific prevalence data 15. The government has not obtained data on the prevalence of FASD in Aotearoa New Zealand.18 The government declined the opportunity to take part in a World Health Organisation study that would have gathered Aotearoa-specific data. It has however, accepted estimates and models based on international data and comparative drinking behaviours (from Canada and the United States) and adopted a figure of 3 to 5 percent.19 However, the lack of Aotearoaspecific data makes it difficult for health and social systems to accurately plan and budget, make evidence-based decisions, and adequately support people with FASD.20 16. Article 31 requires States to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the rights in the CRPD. To properly identify, plan and budget around the size and needs of the population affected by FASD within the New Zealand context, research into its prevalence here is essential.21 Research and accurate prevalence data is also crucial for prevention. Recent developments 17. There have been some recent developments in support for individuals with FASD. A new Ministry is being set up on 1 July 2022, whose responsibilities will include the national implementation of the Enabling Good Lives approach to DSS, which will give disabled people and whānau more choice and control of their lives and supports. However, due to their exclusion from the eligibility criteria for DSS, those with FASD will not be covered by these changes. No definitive information is publicly available on future directions, including timeframes, for inclusion of FASD within the services provided through new Ministry. Under existing structures, some government funding is provided to FASD-CAN Inc until the end of 2024.22 However, it is not enough to provide a national level of support for individuals and their whānau, and there is no direct support to individuals with FASD separate from their whānau. 18 19 20 21 22 The Growing up in New Zealand study is an estimate of incidence, rather than a prevalence study, which uses the internationally recognised case ascertainment method. See Growing Up in New Zealand ‘Prevalence of Foetal Alcohol Spectrum Disorders’ (2017) at https://www.growingup.co.nz/node/1741. Ministry of Health ‘Fetal alcohol spectrum disorder’ (March 2022) at https://www.health.govt.nz/ourwork/diseases-and-conditions/fetal-alcohol-spectrum-disorder. For example, it is important to collect Aotearoa-specific data on the prevalence of FASD among persons within the prison and youth justice systems, and among school exclusion rates. Reliance on a 3 to 5 percent estimate of prevalence based on international data and research should only be used as an interim planning measure, pending the availability of Aotearoa-specific data. FASD-CAN Inc is a charity which was established in 2013 and comprises parents, caregivers, extended whānau and professionals working alongside persons them. It is a non-profit incorporated society and charity and run by volunteers. It receives limited government funding. 7