Report to the Prime Minister on Fetal Alcohol Spectrum Disorder: A Call to Action Introduction 1. The Disability Rights Commissioner3 and Children’s Commissioner4 both have a statutory mandate to report to the Prime Minister on certain matters. This statutory mandate is not used often and invoked only where concern is of sufficient magnitude to warrant bringing to the attention of the Prime Minister. 2. The matter we wish to draw to your attention through this report is the lack of appropriate progress on providing greater support for those with Fetal Alcohol Spectrum Disorder (FASD) and their whānau and on implementing the cross-agency FASD Action Plan. 3. While feedback from some agencies on this Report indicates work occurring that may benefit those with FASD, some of it remains future-focused and appears to lack overall coherency. Work does not appear to be co-designed with those with FASD and their families, be tailored specifically for those with FASD, nor have the active cross agency governance required to make a strategic difference. 4. It is our view that New Zealand may be in breach of its international and domestic obligations and Tiriti commitments, a matter we both wish to raise through upcoming examinations of New Zealand’s performance against the UN Convention on the Rights of the Child (CRC) and the UN Convention on the Rights of Persons with Disabilities (CRPD). 5. We would appreciate an opportunity to discuss this report with you at the earliest opportunity. Executive Summary 3 6. In our view, those living with FASD in New Zealand may experience an egregious breach of their human rights under international and domestic laws through being excluded from obtaining sufficient support. This lack of support can have grievous ramifications for individual well-being, family cohesion, and too often, a trajectory towards the criminal justice system. Professor Ian Lambie5 argues that the high-profile case of Teina Pora, whose FASD led him to confess to a crime he did not commit, is the tip of an iceberg. 7. This lack of support extends to the resources available to the medical profession, service providers, educators and the Judiciary, leaving those with FASD and their family/whānau isolated and powerless to help. Most significantly FASD has been shown to increase death by suicide6. These issues have been hiding in plain sight in New Zealand for too long. We can do much better. 8. There has been a long history of advocacy for better protection of the rights of those living with FASD and their family/whānau. There is an estimated 1800 (a very conservative estimate) children born with FASD each year in New Zealand. While there has been some recent investment and focus Section 5, 2 (k) of the Human Rights Act 1993 provides for the DRC to report to the Prime Minister on any matter affecting human rights, including the desirability of legislative, administrative, or other action to give better protection to human rights and to ensure better compliance with standards laid down in international instruments on human rights. 4 Section 12 (1)(k) of the Children’s Commissioner Act 2003 provides for the Children’s Commissioner to report, with or without request, to the Prime Minister on matters affecting the rights of children 5 Chief Science Advisor to the Justice Sector) in his 2020 Report on Brain and Behaviour Issues 6 O’Connor MJ, Portnoff LC, Lebsack-Coleman M and Dipple KM (2019) Suicide risk in adolescents with fetal alcohol spectrum disorders. Birth Defects Res, 111(12) 822-828