FASD-CAN Advocacy Update: mid-2023

The first half of 2023 was full of advocacy activity from FASD-CAN Inc on behalf of people with FASD and their whānau.

  • We have written to the Ministers of Education, Disability and Health to express our concerns about the lack of progress, appropriate supports and recognition of the needs of those with FASD and their families. We have also raised our concerns about the range of inequities FASD experiences in comparison to other neurodiverse conditions. However, in response to our repeated requests for meetings with the Ministers, not one of them has said yes.

  • We already had regular liaison meetings with Wellington Te Whatu Ora officials, but we have now set up the same arrangements with Ministry of Education and Whaikaha. These meetings have been helpful in raising the profile of FASD within the Ministries and dealing with the inequities of FASD experiences. Our thanks to the officials we meet with as they have been positive in their engagements with us.

  • We have written to the Ministry of Health and the Minsters of Health asking for action to address the appalling and sad statistics relating to people with FASD, mental health and suicide. We are currently awaiting a reply from the Ministers.

  • We have also met with the Office of the Children’s Commissioner to discuss their ongoing support for our tamariki with FASD, and made connections with the Children’s Poverty Action Group (CPAG) and ADHD New Zealand to look for opportunities to work together. We also wrote to the recently established Neurodiversity in Education Coalition to see how we could be involved in the Coalition to progress the needs of all neurodiverse learners.

  • We have worked closely with Toitū Te Waiora (Community, Health, Education and Social Services) Workforce Development Council in the development of an FASD-specific programme of study. This has led to the development of two proposed new FASD-specific micro-credentials which are currently out for public consultation. 

We have also made submissions to legislative and government reviews, and been involved in a number of government project hui including:

  • The Oranga Tamariki Disability Strategy where we argued strongly for the explicit acknowledgement and inclusion of FASD and other neurodiverse conditions in the strategy, and for further involvement of the whānau voice when a child was taken into care.

  • The Ministry of Education’s How Schools are Resourced for Teacher Aides Review where we made a submission generally supporting the intent of the review to provide more stable employment for Teacher Aides but noting that without additional funding this would likely lead to a decrease in the number of Teachers Aides available across the motu in a situation where the number were already inadequate.

  • The Disabled People and Victimisation Survey Project being undertaken by the Ministry of Justice where we argued for the inclusion of qualitative insights that would identify the vulnerabilities that lead to victimisation in the first place but also pointed out that, as the survey delivery was currently planned, it was unlikely to lead to the inclusion of people with FASD.

  • The Restraint Guidelines online training module development for educators being developed by the Ministry of Education where we supported the views of others for a change to the name of the guidelines away from the word 'restraint', and for a focus on understanding the student and de-escalation techniques as being of primary importance.

  • The Highest Needs Review implementation planning meetings facilitated by the Ministry of Education where we have argued for flexible learning opportunities and locations, and a quantum leap in resourcing to achieve the transformation promised by the Review.

  • The Law Commission’s review of Adult Decision-Making Capacity law where we supported in principle the Enabling Good Lives and supported decision-making model but argued the law must also allow for intervention where continued poor decisions lead to ever poor life outcomes.  We identified three particular areas where we believed the law needed to protect and support our vulnerable people with FASD: financial decisions and management; physical and mental wellbeing; and competence and capacity to enter into contracts.

  • The Sale and Supply of Alcohol (Community Participation) Amendment Bill where we argued that strengthening the controls of the sale of alcohol would assist with the reduction of the risk of incurring alcohol consumption that can result in FASD, particularly amongst these vulnerable groups, when applied together with other measures to reduce consumption during pregnancy.

  • The New Zealand Family Violence Prevention Strategy being developed by the Ministry of Social Development where we are providing caregiver input into the effects of violence by people with FASD on caregivers, and advocating for the need for support in this area.

  • The Royal Commission of Inquiry into Abuse in Care where we arranged for caregiver input into the future of state and faith-based care through focus groups, noting FASD probably represents the greatest proportion of individuals in care so it was important for us to have a say in the recommendations for change from the inquiry.  

Regular meetings

  • We continue to attend regular meetings of the Education for All [EFA] group where we liaise with other like-minded organisations for improved inclusion of all disabled students, and appropriate accommodations and modifications to the environment and curriculum. 

  • We also attend regular meetings of the Office of Disability Issues (ODI) Caregiver Network Group which is supported by Whaikaha. In this group we advocate strongly for recognition and consideration of neurodiverse conditions, and FASD in particular, during policy discussions to address the inequities in representation and inclusion we have faced to date in policy decision-making and programme planning.

  • A caregiver member also represents FASD-CAN on various disability groups to raise awareness of the complex and multi-faceted needs of our vulnerable FASD community.