on the prevention of FASD, insufficient attention has been paid to the support required for people
with FASD and their family/whānau.
9.
This report identifies key issues and sets out recommendations for your consideration. In brief,
there is an urgent need for access to greater support, at a minimum to Disability Support Services
funded by the Ministry of Health. In addition, there is a need for increased diagnostic capacity,
training for professionals, a prevalence study, full implementation of the existing Action Plan, and
an all of government focus and approach to joining up services and extending services the Action
Plan identifies as imperative to reduce harm.
10.
This paper is endorsed by and has contributions from FASD-CAN7, and Professor Ian Lambie, Chief
Science Advisor for the Justice Sector. The report has also been shared with the Ministries of Health,
Education, Police, Justice, Corrections, Women, Te Puni Kōkiri and Oranga Tamariki who were
invited to make comment. It will also be shared with the Social Sector Science Advisors and Chief
Science Advisor.
11.
Towards the end of 2019 FASD-CAN invited families to contribute to a report on experiences over
the life-span of those with FASD. The report is provided as appendix one to this paper. It is
illustrative of the experiences in New Zealand faced by those living with FASD and their
families/whānau.
Background -what has happened to date?
Key Developments to date
12.
There is a long history of advocacy in New Zealand aimed at the prevention of and improving
outcomes for those with FASD. This report does not traverse this history, but instead focuses on
developments since 2016.
13.
FASD-CAN is a charity which was established in 2013 and comprises parents, caregivers, extended
whānau and professionals working alongside them. It is a non-profit incorporated society and
receives no government funding.
14.
An Action Plan “Taking Action on Fetal Alcohol Spectrum Disorder 2016–2019” was developed by
the Government in consultation with FASD-CAN. The Plan is a cross-agency plan and stated on the
Ministry of Health website that it will be implemented over 3 years. The goals of the cross-agency
plan are on prevention and enabling people with FASD and their family/whānau live the best
possible lives. The plan includes four priority areas (prevention, early identification, support and
evidence).
15.
The plan is a good plan and still has currency. The problem is that it has not been fully implemented
and those areas that have been, have not been prioritised by families nor co-designed with those
affected. Of particular concern is that little, if any, attention has been given to appropriately
supporting people with FASD and their family/whānau.
7
A non-profit incorporated society made up of parents, caregivers, extended whānau and professionals to improve
the lives of those living with FASD.
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