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Ministerial Announcement On Fetal Alcohol Spectrum Disorder (FASD)

26 April

The Minister for Health has announced a number of developments and proposed actions in relation to FASD in Aotearoa New Zealand, including a commitment to train health professionals to diagnose FASD, a pilot programme for whānau and caregivers, a national campaign to raise awareness and a revitalisation of the FASD Action Plan.

Dr Leigh Henderson, the Chair of FASD-CAN, the organisation supporting people with FASD and their families, was encouraged by the renewed activity and intiatives announced by the Minister. “A diagnosis is life-changing for individuals with FASD. As a ‘hidden’ disability, FASD can be ignored or blamed on poor parenting.”

Dr Henderson, a mother of a young adult with probable FASD, explained. “Early diagnosis, followed by early interventions and access to disability support, can improve life outcomes for the child with FASD and the family who supports them,” she said.

Getting a diagnosis in Aotearoa New Zealand is very difficult. “The main routues to diagnosis are if the young person enters the care or justice systems. Many families spend years trying to get an assessment for their child and some resort to a private diagnosis costing up to $9000,” explained Dr Henderson.

One caregiver said, “We did have a paediatrician tell us when he was 12 he was sure if was FASD but encouraged us not to get a formal dianosisi becauce at the at time there was no support for FASD and he said the stigma could be worse.”

For those who are ‘lucky’ to get a diagnosis, the outcome can be transformative. “Diagnosis gave us the evidence that her brain was damaged, rather than it being wilful behaviour. That was so important in subsequent interactions with educators and medical personnel and for her own mental state,” said Kathryn Lawlor, a mother of a teenage daughter with FASD.

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FASD is a very common neurodisability in Aotearoa New Zealand, but is largely hidden. It affects between 3-5% of the population. FASD-CAN CEO, Stephanie James-Sadler, expects many families to welcome this announcement. “Approximately 60,000 of people under 18 years old are affected by this neurodisability. Action on FASD has been very slow but these new commitments will make a material difference to the difficult, stressful lives of those with FASD as well as their whānau and carers,” she explained.

“However, so much more needs to be done to support the needs of people with this lifelong brain damage and their whānau. FASD can impact people across a range of areas – education, substance misuse, mental health, employment, justice and suicide. Early intervention is critical if we want to reduce the risk of these outcomes,” said James-Sadler.

Government guidelines state that no level of alcohol is safe during pregnancy. FASD can be caused by any level of exposure to alcohol. “We strongely welcome a campaign to reduce the numbers of children affected and to reduce the stigma to children and their families who currently live with FASD,” said Dr Henderson. The announcement addresses the need to reduce the high level of unplanned pregnancies where a baby may be exposed to alcohol.

FASD-CAN also welcomes any potential collaboration with a community-led pilot programme to support whānau and caregivers.

FASD-CAN and other advocates for the rights of people with FASD have again called on the government to allow those with FASD to be eligible for disability support. The commitment of this government to address priorities for FASD gives hope to families living with FASD.

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