Life with mokopuna suffering Fetal Alcohol Spectrum Disorder: 'I feel like nobody cares and nobody listens'

Deb Cole gives evidence before the Waitangi Tribunal about raising mokopuna with Fetal Alcohol Spectrum Disorder.

"It was like our trauma was a tennis ball, being batted back and forward between Oranga Tamariki and other organisations."

That's the way Deb Cole has described her whānau's constant battle in trying to get help and support from authorities for several of her mokopuna who have Fetal Alcohol Spectrum Disorder (FASD).

"I have had to share my story so many times in the 19 years of my mokopuna. I have to bare my soul, tell my story and relive my trauma, each time I feel like nobody cares and nobody listens."

Cole has shared her experience at the start of a week-long hearing in the Waitangi Tribunal, the latest in the Wai 2575 Health Services and Outcomes Kaupapa Inquiry into breaches of the Treaty for Māori.

Today's focus was on the impact of alcohol-related harm on Māori, FASD in particular.

The disorder can cause a range of physical, cognitive, behavioural and neurodevelopmental disabilities stemming from alcohol exposure during pregnancy.

Cole, who has five children and 20 grandchildren, said FASD had caused ripples through her whole whakapapa, with some mokopuna becoming involved in the justice system.

At today's hearing, Cole spoke about the scant support given to her whānau as she tried to prevent her mokopuna from ending up in the system.

"Oranga Tamariki would only help us if our mokopuna committed a violent crime, was raped or had fallen pregnant.

"I thought, 'oh my God, we just don't want that, we don't want to get there, we want to stop that from happening, so how can we do that?'"

She said Oranga Tamariki's response whenever she reached out for help was "there's very little we can do, we can't help you, you can try different organisations".

In response to this disorder going undiagnosed, Coles says her mokopuna lost their nana.

"They gained me as an old, grumpy mum and my other mokopuna lost their nana because I had so little time and energy to spend with them."

While the true extent of cases in New Zealand is unknown, overseas research suggests one in 100 people have the disorder and up to 3000 babies are born with it each year.

Neurologist and FASD specialist Dr Valerie McGinn said people with the disorder often start with school exclusion then end up in youth justice and finally the adult prisons.

"This is a social issue and it is only the Government who can address it. The Ministry of Health has been like a brick wall, uncaring and unresponsive when I have tried to seek help for those I know with FASD."

McGinn said there have been many miscarriages of justice with the wrongful imprisonment of people who have FASD. She spoke of one man who served 22 years in jail and another who served 10 years after police "extracted false confessions from gullible Māori" with FASD.

The alcohol health care claim was brought forward by David Ratu, executive chair of the Kōkiri ki Tāmaki Makaurau Trust, which tries to prevent and protect Māori from the harm caused by alcohol.

Ratu said the justice system, in particular, has little to no understanding of the disorder.

"Where was the education and prevention for those suffering from the disability? Even now, where are the education and prevention? What does exist certainly does not reach Māori," he said.