Ministerial announcement on Fetal Alcohol Spectrum Disorder (FASD)

On 25th September the Minister for Health, Dr Shane Reti, announced new initiatives relating to Fetal Alcohol Spectrum Disorder (FASD) at a symposium in Tāmaki-Makaurau. Dr Reti acknowledged that FASD has been under-recognised and under-supported for too long. He said that we stand on the precipice of meaningful change in relation to FASD when announcing three new initiatives to address FASD in Aotearoa.

The first initiative is a study to determine the prevalence of FASD in Aotearoa. Dr Leigh Henderson, Chair of FASD-CAN, the organisation supporting people with FASD and their families/whānau, said their organisation is supportive of this work. “A prevalence study will allow us to understand the true level of this neurodisability in Aotearoa. We know from our contact with individuals with FASD and their whānau the huge personal burden of living with FASD. But for the first time data will be available to inform policy decisions on supporting this disability”.

A recent study showed that FASD costs Aotearoa $4.6b per annum. Those with FASD are not supported through the education system, the majority of those affected do not have access to any disability support, are more prone to substance abuse and have early disengagement from the education system. “Overseas research shows that early intervention to help individuals with FASD and their families greatly improves their life outcomes and reduces the risk of the adverse effects such as involvement in the justice system, addiction and mental health issues. Having actual data relevant for our country will help demonstrate the consequences which arise from the lack of suitable interventions, especially disability support. This issue has been ignored for too long. We appreciate that the Minister has shone a spotlight on this issue and that there is some hope for those who have lived without it for far too long”, said Stephanie James-Sadler, CEO of FASD-CAN.

The second initiative relates to addressing the gap in knowledge of professionals supporting people with FASD and their families and whānau – in education, social work, justice, mental health and addiction and other professions. Using alcohol levy money, funding will be available to develop an NZQA approved micro-credential training programme, accessible and relevant for a range of professions. FASD-CAN worked with Toitū te Waioa to gain NZQA approval of this qualification. “We believe that having more professionals aware of FASD and the accommodations required to help them to live their best lives will be life-changing for many of those living with this neurodisability” said James-Sadler.

The third initiative relates to improving the awareness and knowledge of FASD and reducing the stigma.

FASD is a very common neurodisability in Aotearoa New Zealand but is largely hidden. It affects between 3 - 5% of the population. James-Sadler, explained “Approximately 60,000 people under 18 years old are affected by this neurodisability. FASD can impact people across a range of areas – education, substance misuses, mental health, employment, justice and suicide. We want people to understand that drinking during pregnancy is a game of Russian roulette, with potentially life-long consequences”.

“New Zealand has a high level of unplanned pregnancies so over 40% are alcohol exposed. Combined with our heavy drinking culture we are a country at high risk of FASD. When a person has FASD, parents are often blamed for poor parenting, those with FASD are often bullied, misunderstood and punished for bad behaviour. An effective public campaign should reduce the prevalence of those affected by the is lifelong brain disability and reduce the stigma attached to it. We welcome it” said Henderson.