Rights breached for thousands with Foetal Alcohol Syndrome - Commissioners

A new report is calling on the Government to change the way people with Foetal Alcohol Syndrome Disorder are assessed for some supports saying the current system breaches human rights for thousands with the disorder.

Foetal alcohol syndrome disorder is a lifelong disability estimated to affect tens of thousands of New Zealanders which can affect motor skills, physical health, memory, attention span, communication and even social skills.

The report by the Disability Rights Commissioner and Children's Commissioner described FASD as a hidden disability with thousands of people with it denied access to disability social services in Aotearoa and as a result evidence showed that too often those without adequate support end up in the criminal justice system.

Chair of the FASD Care Action Network, Leigh Henderson, along with Disability Rights Commissioner Paula Tesoriero told Breakfast on Wednesday morning change was needed.

“It’s a major frustration,” Henderson said.

“Only those with an intellectual disability – which is about 20 per cent of those with FASD – will be able to access support but for those that don’t, there is no support.”

Henderson said the disability often affects schooling and family wellbeing,

“Because of the lack of diagnosis, people are often living with this disorder without knowing what it is,” she said.

“It can lead to pretty extreme behavioural and family situations that are very hard for families and families can end up being very isolated.”

Henderson’s frustration stems from her own experience with the disorder as her son has FASD.

“Our son is a young adult now and he was actually quite late diagnosed,” she said.

“I didn’t really realise until the pre-teen years where you start to see quite a different individual.

“The early teen years were pretty awful for us with behavioural issues, dropping out of school, starting to do drugs and alcohol.”

Despite going to multiple medical outlets, Henderson said her family couldn’t get her son diagnosed with FASD despite their inclination.

“At that point, we had to pay for private diagnosis,” she said.

“So those who can access the diagnosis are those who can pay or have unfortunately gone through youth justice or care facilities.”

Tesoriero said she and the Children’s Commissioner feel New Zealand’s current treatment of the disorder falls “far short” of both international and domestic human rights standards.

“We believe there have been decades of neglect of those living with FASD and their families,” Tesoriero said.

“We’re not talking small numbers – we’re talking at the conservative end around 1800 lives hurt in New Zealand a year.

"So we’re talking about thousands of people we think haven’t had sufficient levels of support and that’s affected them in a number of ways.”

The pair agreed the problem isn’t going away any time soon either until the Government intervenes.

“We really want to see people with FASD and their families directly involved in prioritising how Government spends its money on people with FASD and designs those solutions,” Tesoriero said.

“That’s really important if we’re going to make the change that we need to change.”