Whaikaha, the Ministry of Disabled People, began a draft refresh of the New Zealand Disability Strategy in early 2025.

The Strategy is a document which guides the work of government agencies on disability issues. It gives direction to government agencies on issues that disabled people, tāngata whaikaha Māori and the whānau who support deem important. It shows where change is needed so disabled people can lead, thrive, and take part fully in their communities.

It aims to look after the interests of disabled people in the education, employment, health, housing and justice sectors – all of which are very important to people with FASD. According to the UNCPRD, FASD can be defined as a disability.

The draft Strategy was sent out for submissions to many stakeholders, including disabled people’s organisations (including FASD-CAN), tāngata whaikaha Māori groups and family/whānau representatives. We had a number of recommendations and were overall unhappy with the draft. 

Click here to read FASD-CAN's full submission.

UPDATE: The refreshed Disability Strategy 2026-2030 was released on Tuesday December 2, 2025.

Read it here.

Importantly, the Strategy has included Enabling Good Lives (EGL) principles as a foundational pillar, after most agencies (including us) recommended this, but other than that, little will change for people with Fetal Alcohol Spectrum Disorder. 

Below are FASD-CAN's closing statements from our submission on the draft Strategy. 

Whaikaha - Question 1:  How much do you agree with the following two statements?

• The strategy reflects what matters most to disabled people and their whānau.

• I feel confident that the strategy will lead to meaningful change.

FASD-CAN: We have a very low level of agreement with both statements. Our position is that the strategy, in its current form, neither reflects what matters most to disabled people and their families and whānau, nor will it lead to meaningful change for our FASD community.

• The strategy reflects what matters most to disabled people and their whānau.

FASD-CAN: The strategy fails to consistently acknowledge the central role of family and whānau as a primary support system and advocate. Furthermore, it largely reflects a neurotypical, deficit-based model that does not align with the needs and aspirations of neurodisabled people, intellectually disabled people, or those with high and complex needs. We are told to fit into an existing system rather than seeing the system adapt to us.

• I feel confident that the strategy will lead to meaningful change.

FASD-CAN: We have little confidence that this strategy will lead to meaningful change. As highlighted in our submissions, the document's vague and aspirational language, combined without concrete, measurable actions and timeframes, makes genuine accountability impossible. It is a collection of high-level goals and needs a clear plan for implementation. The absence of a cross-agency, whole-of-life approach means the strategy will not address the systemic failures that create a "pipeline" of neurodisabled people who are failed by one system only to encounter the next.

Question 2:  Is there anything else you would like to see in the strategy?

FASD-CAN: To be effective, the strategy must be fundamentally rewritten to embed the Enabling Good Lives (EGL) principles as its foundation. We want to see a vision for Aotearoa New Zealand that is genuinely rights-based and focused on empowering disabled people and their family and whānau.

Specifically, we would like to see:

• Centralised Accountability: A shift away from local autonomy to mandatory, verifiable standards and funding that follows the person, not the service provider. This would end the 'postcode lottery' for support.
• A Focus on Prevention: The strategy must address the upstream failures in the health, education, and social service systems that disproportionately impact neurodisabled people. We need to see proactive, lifelong support that reduces the risk factors for engagement with the justice system and other services.
• Mandatory, Neuro-Inclusive Training: Comprehensive training on neurodisability, cognitive impairment, and trauma-informed practices for all professionals in the health, education, and justice sectors.
• Data that Captures Lived Experience: A commitment to collecting data that goes beyond generic metrics to capture the real-world, lived experience of disabled people and their families. This is essential for truly understanding and addressing systemic inequities.

Question 3:  Do you have any further comments or suggestions on this strategy?

FASD-CAN: Our central comment is that this strategy is a missed opportunity. While it is well-intentioned, it fails to provide a clear, actionable plan to address the systemic barriers faced by disabled people.

The document's proposed method of measuring progress relies on government agencies reporting on their own actions and a dashboard of indicators. This approach is insufficient. True progress cannot be measured solely by whether an action was taken, but by the tangible impact on the lives of disabled people. Without a clear mechanism to hold agencies accountable to real-world outcomes, the proposed framework for measuring progress will not be effective.

To lead to genuine change, the strategy must:

1. Commit to a whole-of-life, cross-agency approach that breaks down silos between services.
2. Adopt a rights-based framework with a focus on EGL, 'Nothing about us, without us', and a genuine Māori voice.
3. Provide clear, non-negotiable obligations for agencies, backed by legislative authority and independent oversight.

Without these fundamental changes, the strategy will remain an aspirational document with little chance of making a meaningful difference.