18. An Action Plan “Taking Action on Fetal Alcohol Spectrum Disorder 2016–2019” (the Action
Plan) has also been developed by the Government in consultation with FASD-CAN.23 The
Action Plan is a cross-agency framework which the MoH website said would be implemented
over three years. The goals of the Action Plan are on prevention and enabling people with
FASD and their whānau to live the best possible lives. The Action Plan includes four priority
areas (prevention, early identification, support, and evidence), with initiatives that aim to
improve diagnostic capability, reconfigure existing child development support, improve
support to parents of children with FASD, and to undertake research on what an effective
system-wide approach to FASD would look like. While the Action Plan is commendable, it has
not been fully implemented despite the three-year timeframe having expired, and those areas
that have been implemented were not prioritised by whānau nor co-designed with those
affected. There has been no partnership or consultation with Māori. Of particular concern is
that little attention has been given to appropriately supporting people with FASD and their
whānau. Consideration has also not been given to the adult FASD population, who now often
have their own children.
19. Over the past year, the Disability Rights Commissioner, along with the Children’s
Commissioner, has reported to the Prime Minister on FASD, and met and exchanged
correspondence with Ministers on the issue of the support that is needed for those with
FASD.24 Caregiver groups and professionals have also been active in raising the need for
support for those with FASD. A claim has also been made to the Waitangi Tribunal regarding
disproportionate harm caused to Māori from the introduction and regulation of alcohol,
particularly in relation to FASD.25 Despite all this, the government has still made no timebound
commitment to recognising people with FASD as a population group, or as a disabled people
entitled to all the rights and protections of the CRPD.
20. The lack of supports for those with FASD and their whānau has a significant impact on the full
realisation of their CRPD rights. Moreover, it can have serious ramifications for individual and
whānau well-being and cohesion and, too often, lead towards health issues (including mental
health and addictions, and poor health outcomes for caregivers), a lack of accommodation in
education, social issues (including homelessness), unemployment, and engagement with the
criminal justice system.26 Access to better supports would make a fundamental difference to
the lives of people living with FASD and their whānau and could change the trajectory for
many.
23
24
25
26
Ministry of Health “Taking Action on Fetal Alcohol Spectrum Disorder: 2016–2019: An action plan” (16
August 2016).
The Disability Rights Commissioner and Children’s Commissioner both have a statutory mandate to
report to the Prime Minister on certain matters. See HRA, s5(2)(k) and Children’s Commissioner Act
2003, s12(1)(k). 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.
This claim is part of a broader inquiry into breaches of Te Tiriti o Waitangi in health services and
outcomes for Māori: the Wai 2575 Health Services and Outcomes Kaupapa Inquiry.
See Stuff NZ ‘Disordered The shame of how New Zealand treats people with FASD (March 2022).
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