Each year, up to 3000 babies are born with alcohol-related brain damage in New Zealand. Photo: RNZ / Rebekah Parsons-King
Every classroom in the country probably has at least one child with Fetal Alcohol Spectrum Disorder (FASD) - but the vast majority are not getting any support, advocates say.
Fetal Alcohol Spectrum Disorder Care Action Network chairperson Dr Leigh Henderson told Nine To Noon they welcomed the government's recent moves to boost recognition and support for families affected by FASD, which is caused by drinking alcohol in pregnancy.
Health Minister Shane Reti this week announced plans for research to measure its prevalence for the first time, and to use alcohol levy money to fund training for health professionals.
Henderson, whose son was diagnosed with FASD as a teenager, said every year in New Zealand up to 3000 babies were born with alcohol-related brain damage - most of whom were never picked up.
"It's between one in 20 or one in 30 people. So most classrooms are likely to have one. When you talk to people, they often realise their cousin or someone else may have FASD, so [it's] a huge number of people."
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Currently, there was no help for the majority of people affected by the disorder, which caused physical, behavioural, learning and intellectual problems.
"It is a hidden disability unless you have an intellectual disability - one in five of those with FASD have intellectual disability - or if you have facial features [consistent with the syndrome], which is less than 10 percent. You will look like any other person.
"You may appear to act or speak like any other person, but there's this hidden level of brain damage."
A recent study put the estimated cost of FASD to New Zealand's economy at $4.6b per year.
Those affected by FASD were more likely to struggle at school, be more prone to substance abuse, suffer mental health problems and end up in the criminal justice system.
It has been estimated that FASD affects about 50 percent of the children in the care of Oranga Tamariki.
Many organisations and agencies had been advocating for greater recognition and support for people affected by FASD for years, Dr Henderson said.
"So we are thrilled we finally have a minister that's taking it seriously."
A report by the Disability Rights Commissioner and Children's Commissioner in 2021 found thousands of people with FASD were being denied support because they did not fit "arbitrary" measures of disability.
They accused successive governments of falling "shamefully" short of their obligations, calling the situation an "appalling abdication of government responsibility for a significant group of children".
Dr Henderson said getting hard data on prevalence would help the push for better access to support for families and wider recognition of FASD within society.
A formal diagnosis cost $7000 to $9000, which was beyond the reach of most families, she said.
"At the moment there are people who don't understand the risks. That's where we have to change, we to prevent it, but also reduce that stigma.
"We have a child growing up with brain damage. That's not about blame, that's about supporting that person."