Denied Support

The endless battle to have FASD recognised as a disability

Disordered is a multi-part Stuff Circuit investigation into Fetal Alcohol Spectrum Disorder in New Zealand. Watch the documentary or view the full project.

Families, medical experts and advocates have spent years fighting for access to services and support for people with FASD, but they’re still being denied.

2002

Petition to Parliament calling for “FASD to be recognised as a notifiable disability and that the appropriate statistics be kept and entitlements to disability assistance be recognised”.

2015 

Family advocacy group FASD-CAN asks Associate Health Minister Peter Dunne whether the government’s FASD action plan for 2016–2019 will redefine FASD as a disability — and give families access to services and support.

2016

The Ministry of Health (MoH) releases New Zealand’s first attempt to take a strategic, coordinated, national approach to FASD: “Taking Action on Fetal Alcohol Spectrum Disorder: 2016–2019. An action plan”.

It talks of developing a ‘’coordinated, consistent, accessible and appropriately resourced pathway” for supporting affected people and their whānau/caregivers. 

It commits to conducting a full review of the Plan after three years. 

But, as of 2022, a full review has yet to be done.

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March 2017

Government health policy on eligibility for Disability Support Services (DSS) excludes FASD, wrongly describing it as a “behavioural problem”. 

To qualify the person needs to have an IQ below 70.

Medical experts say IQ is the wrong measure; that all people with FASD have severe brain damage.

August 2018 

Ministry of Health officials brief Ministers ahead of a meeting with FASD advocates — including the Children's Commissioner and the Disability Rights Commissioner — who want to know what is being done to expand disability support services to include FASD.

Officials tell their Ministers there is ‘’scoping work” under way to consider how to respond ”to people with ‘neurodevelopmental conditions’’’ who are ineligible for support.

21 August 2018

FASD-CAN outlines concerns around implementing the Action Plan and notes that FASD is still not included in disability criteria.

September 2019 

Health Minister David Clark acknowledges families are still not getting the support needed.

19 March 2020 

The Ministry of Health admits there is not enough funding available to include people with FASD within Disability Support Services (DSS).

17 February 2021 

Health Minister Andrew Little and Prime Minister Jacinda Ardern are given information about how disability support is applied for FASD in other jurisdictions.

April 2021

A summary of progress on the 2016–2019 Action Plan is released.

It has no information on disability support services for those affected with FASD or their families.

9 July 2021 

Health Minister Andrew Little receives a report on FASD and Disability Support Services but refuses to release it under the Official Information Act.

September 2021

The Human Rights Commission says the government is breaching the rights of people with FASD by denying them access to Disability Support Services.

The government criteria locks out 80 per cent of the FASD community from accessing DSS.

Made with the support of

Irirangi Te Motu: NZ on Air

Disordered is a multi-part Stuff Circuit investigation into Fetal Alcohol Spectrum Disorder in New Zealand. Watch the documentary or view the full project.

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