By Disability Rights Commissioner Paula Tesoriero

We may be breaching the human rights of thousands of young people – and criminalizing them, says Paula Tesoriero, Disability Rights Commissioner.

As we come to the close of Fetal Alcohol Spectrum Disorder (FASD) month I’m dismayed this urgent issue has remained a low priority for governments over many years.

We must pay greater attention to this pressing issue. FASD is a serious lifelong, misunderstood condition, and yet Aotearoa New Zealand has had an ad hoc, piecemeal approach to addressing it.

The frustration of the thousands of family/whānau living with, or supporting someone with FASD, is sometimes more than they can bear. I’ve met many who’ve stoically endured – because of aroha – but their patience is wearing thin. I’m speaking up alongside them.

Diagnosis of this condition is serious – there is no continuum of moderate to severe impairments. All people with FASD are differently affected. It is caused when a fetus is exposed to alcohol during pregnancy. It’s often described as “the invisible disability” because the impact from exposure to antenatal alcohol is often hidden in the brain. The only way to prevent it is avoiding alcohol during pregnancy.

Aotearoa New Zealand has not prioritised research into its prevalence. This creates a roadblock to effective and targeted treatments. But we estimate anywhere between 1800 and 3000 babies are born each year with FASD.

My colleague, Children’s Commissioner Judge Andrew Becroft, and I have released a report Fetal Alcohol Spectrum Disorder – A call to action – demanding a range of actions to support people with FASD and their families/whānau.

We are not treating this urgently enough. Consequently, we are consigning thousands of young people and tamariki to disadvantage in education, employment and the criminal justice system. This is appalling, discriminatory and a potential breach of these young people’s human and te Tiriti rights. Professor Ian Lambie says in the report, that Teina Pora, ‘whose FASD led him to confess to a crime he did not commit, is the tip of the iceberg’.

New Zealand Health Survey data tells us the rate of dangerous drinking has been increasing steadily in the last decade and the rate for Māori women has the steepest rise. Wahine are most affected, being 1.6 times more likely to be hazardous drinkers than non-Māori. The highest rates for drinking during pregnancy are for Māori women. Thirty four percent reported drinking during their last pregnancy, according to the survey.

The survey explicitly acknowledges the impact of the long- term effects of colonisation resulting in intergenerational disenfranchisement, discrimination, disadvantage and poverty. Society must also acknowledge and address our country’s appalling attitude to normalising heavy drinking.

Our inconsistent approach to diagnosis and treatment also reflects deep inequities. Some people pay for private assessments, while others access diagnosis through DHBs or Oranga Tamariki. Access to support is also patchy and inconsistent. Some people remain undiagnosed while others can’t access Disability Support Services because of arbitrary criteria.

Government needs to spend more time engaging with family/whānau – they will have many of the solutions. Bringing more urgency to delivering on the FASD-CAN 2016–2019 national action plan, which has only been part implemented, would be a good first step.

But progress is still too slow. While limited additional funding is available through the Proceeds of Crime contestable funding process, if we are serious about addressing the human and te Tiriti rights of people with FASD and their whānau, we need more sustainable funding, the full involvement of whānau in developing solutions and changes to criteria for better support.

© Scoop Media