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Source: Human Rights Commission

As FASD awareness month comes to an end, thousands of people with FASD are still denied access to the right diagnoses and support, say the Disability Rights Commissioner and Children’s Commissioner.

This statement by Paula Tesoriero and Judge Andrew Becroft, follows today’s release of Fetal Alcohol Spectrum Disorder – A Call to Action, which calls for changes to the way people with FASD are assessed for some supports.

The commissioners say the human rights of some people with FASD are being denied because of arbitrary measures for criteria.

“Currently people with an FASD diagnosis alone can’t access Disability Support Services (DSS) despite meeting the definition of disability. This exclusion seems arbitrary and there appears no logical basis to limiting access to DSS to those with an intellectual impairment only.

“This affects thousands of people who are unable to access the support they need because of an arbitrary measurement, and the fact FASD is still not recognised as a disability.

“You only have to talk to the families/ whānau to understand how unfair this situation is. FASD is a lifelong and irreversible complex condition which is disabling. It requires extensive support across a range of mechanisms, including DSS.

“The effect of doing so results in most people living with FASD not being able to access support and not having an opportunity to thrive.

“Shamefully, successive governments have fallen short in their obligations to te Tiriti o Waitangi, international human rights commitments and domestic laws in relation to supporting those with FASD and their families/whānau,” said Paula Tesoriero.

“This must now be viewed as an appalling abdication of government responsibility for a significant group of children,” added Commissioner Becroft.

“The cost of this failure will not only be paid by these children and their whānau/families. There are also massive ongoing costs to our health, education, social welfare and criminal justice systems.

“Witnessing the effects of FASD first-hand in the Youth Court was one of the reasons I took this job, to advocate for us to get in earlier and provide proper support for these children”, said Commissioner Becroft.

The report asks Cabinet to amend the current eligibility criteria so those with a diagnosis of FASD (regardless of the presence of an intellectual disability) can access DSS if necessary.

It also calls for new timeframes for implementation of the 2016-2019 FASD Action Plan and is critical of the length of time it has taken to implement the measures set out in the plan. It suggests an FASD Prevalence study to better understand the population and appropriate targeting of resources.

“While some progress has been made under the FASD-CAN action plan, we urge the government to expedite the focus on providing support to those living with FASD, and their whānau. We would be happy to support the process.

“While we acknowledge limited additional support for FASD through the Crimes of Proceeds contestable funding round, we would like to see a more sustainable funding mechanism to properly address need”, they said.

The Reality of FASD in Aotearoa by FASD-CAN has also been released.