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'Shameful on us' – Calls for greater support for fetal alcohol spectrum disorder

The commissioners for children and disability rights have released a report, delivered to Jacinda Ardern over a year ago, citing a lack of action on the issue.

The Commissioners for Disability Rights and Children have released a report calling for urgent action on increasing support for people with fetal alcohol spectrum disorder or FASD.

The report was given to the Prime Minister in July 2020 but Paula Tesoriero and Judge Andrew Becroft say there’s been a lack of progress from the Government since then.

“We are really frustrated and concerned about the magnitude of the issues and the fact that there is not enough pace or urgency attached to this,” Disability Rights Commissioner Paula Tesoriero told 1News.

“Because of the seriousness of the issues, we took this report directly to the Prime Minister to raise our concerns – we are falling far short of our international and domestic human rights obligations to people with FASD.

“We subject them to a potential for criminalisation, for poor outcomes and it is time that we did much better in New Zealand for people with FASD and their families,” she said.

Fetal alcohol spectrum disorder occurs when a fetus is exposed to alcohol in the womb.

It’s estimated 1800 to 3000 babies are born with this disability every year, but there’s a lack of data on how prevalent FASD is in New Zealand which Ms Tesoriero says is a roadblock for targeted treatment decisions.

Hazardous drinking has been steadily on the rise in New Zealand.

Olivia, who was diagnosed with FASD at 10 years old, says the diagnosis came as a relief.

“It kind of changed my life because I knew that I wasn’t stupid and that I knew that I could get the help that I needed,” she said.

Most people with the disability do not qualify for the Ministry of Health’s Disability Support Services with eligibility limited to those with another impairment.

An IQ that’s marked at below 70 is required to qualify and 19-year-old Olivia was assessed as having an IQ just above that, with a mental age of 11.

“I am just wanting people to get kids with FASD the help that they need so that they don’t end up in prison or on the streets,” Olivia said.

She’s also calling for greater access to diagnosis for children so they can gain more support early in their schooling years.

Her foster parent, Karen Irving, is also concerned about what will happen to Olivia when she leaves their home.

“I worry every day for when she leaves here, I mean we fight all the time to keep her as long as we can keep her because I know that out in the real-world things won’t go well for her unless she’s got supported living, unless she’s got somebody guiding her and helping her,” Irving said.

“She knows we’ll always do that but it’s not up to us… it’s up the country to make a decision to help these hundreds of… thousands of teenagers and adults out there and children that aren’t getting supported.”

Irving said after leaving the state care system, many young people with FASD end up pregnant, in an abusive relationship or in prison.

“They don’t have help, they need assisted living right through until adulthood and beyond,” she said.

“I think that kids with FASD should be able to stay in care when they feel that they’re ready to leave not when other people assume they should go leave,” foster daughter Olivia said.

“A part of me feels that they’re rushing it for me and that they’re not really letting me wait until I’m ready.”

The Government’s FASD action plan of 2016 to 2019 has only been partially implemented.

In a survey conducted by the Fetal Alcohol Spectrum Disorder Care Action Network, 21 families said the plan had not benefitted their family, including the person affected by FASD, in any way.

Commissioners Tesoriero and Becroft are calling for research into the prevalence of the disability in New Zealand and Government commitments to new timelines for implementation of the action plan and extending eligibility for disability support to all people with FASD.

“It’s absolutely shameful on us as a country that we don’t look after people with FASD better and provide them with a great opportunity to thrive and I’m committed to continuing advocacy on this issue,” Tesoriero said.

Health Minister Andrew Little said one of the challenges in this area is that there is a lack of clinicians equipped to diagnose FASD.

“That’s not a problem that gets fixed overnight, it’s not a problem that gets fixed quickly at all so that’s why we're doing what we can in a realistic timeframe knowing the seriousness of the issue, knowing that it encompasses a number of different branches of Government and making sure that that happens and that it is resourced and effective and a clear strategy to do so,” he said.

FASD needs to be part of the wider review of disability support, Little said.

“The response to FASD is not just a health response, it’s an all of Government and social support response so what happens in education, what happens in MSD is just as important in what happens in health and we’re in the process of bringing that together and expect to have a report on that next year.”


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