32. While being appreciative of the efforts by the Ministry of Health to obtain this funding, applying to a contestable fund is not a sustainable way to manage what should be ordinary service delivery responsibilities. 33. Furthermore, neither families nor those with FASD were involved in any co-design of the initiatives for the Proceeds of Crimes funding. Feedback from FASD-CAN indicates little confidence that these initiatives are sufficiently focused on direct support to be of significant benefit to them. Lack of Accountability 34. The Action Plan is intended to be cross-agency. There appears to have been little accountability across government for ensuring the Plan is delivered. We convened a meeting in December 2019 with the Ministries of Health and Education and Oranga Tamariki to raise concerns about governance of the Action Plan. 35. It was agreed at that meeting that the governance group required a re-set. We therefore look forward to the inclusion of representation from families and those living with FASD and the programme management approach outlined above to progress rapidly. Governance oversight must be reviewed and ensure that members comprise senior people with the appropriate mandate to strategically steer this Plan. Lack of current supports 36. One important source of funding not easily available to those with FASD is the Ministry of Health funded Disability Support Services (DSS). Individuals with FASD are not currently eligible for DSS by virtue of FASD alone unless they also have other recognised impairments such as an intellectual impairment (which only affects 20% of those with FASD). All individuals diagnosed with FASD have severe and permanent brain impairment across at least three brain domains among the 9-10 domains tested in order to be diagnosed. 37. The types of supports funded through DSS include things such as: a. b. c. d. e. f. g. h. i. Child development services Community Day Services Respite Care Community Residential Case Services Funded Family Care Hearing and Vision Services Home and Community Support Services Individualised Funding Supported Living 38. At present, the primary provision of support to those with FASD is through mental health and addiction services. Some with FASD may be able to access the Child Disability Allowance or the Disability Allowance. Some support is also provided through the Ministry of Education Learning Support function (eg some teacher aide provision which supports a range of learning support needs and can be accessed based on need, rather than diagnosis). 39. A child with FASD may also be eligible for ORS funding which provides more specialist resource. Some children with FASD may be eligible for the Ministry of Education’s Intensive Wrap-around Service which includes specialist assessments in some DHB areas. The Ministry of Education hopes 6