FASD-CAN’s advocacy comes in many forms. Some are quite formal, like connecting with Ministers and other government officials, or writing submissions on public consultation documents. In other cases, it is about spreading the word about FASD and the needs of our members through training and membership, or in groups who support our kaupapa. 

All are important, and for a small organisation we believe we have made significant progress in elevating the visibility of FASD in 2024 through our advocacy activities, particularly in the areas of justice, mental health and education. 

Below is a brief update on what we’ve been up to, from 1 February 2024 to 1 December 2024.

Meetings with Ministers 

• We continued to write to several new Ministers at the beginning of the year, providing them with briefings on the issues Aotearoa faces relating to FASD, specifically within their portfolios. However, with the exception of Minister Reti, the Minister of Health, we were unsuccessful in securing any other senior Ministerial-level meetings.  Despite following up on meeting requests on several occasions, we were still ignored – our only access to the Ministers of Disability, Mental Health and Education has been through our membership or in collective disability groups.  
  
  
• Due to one of our members’ strong advocacy for her particular situation, and meeting her local MP, we were able to meet with national party MP James Meager, current Chairperson of the Justice Select Committee. After hearing her story and challenges, MP Meager was open to learning more about FASD-CAN and was empathetic to the needs of rangatahi with FASD and the therapeutic interventions and supports needed in the ‘Boot camp’ pilots, as well as with the Ram Raiders Bill.
  
  
• We have begun building cross-party knowledge of FASD and support by meeting with Tamatha Paul (Greens spokesperson for corrections, housing, justice and youth etc.) and Labour’s youth spokesperson, the Hon. Willow-Jean Prime. 
  
  
• Our most influential meeting was held in April 2024 with the Health Minister, Dr Shane Reti. Thanks to our Board members, Gilbert Taurua and Leigh Henderson, and our CEO, we had a good audience with the Minister.  We raised our concerns and the Minister shared his priorities, one of which is FASD. Dr Reti, over the course of 2024, put in place a revitalised FASD Action Plan, prevalence study and a prevention campaign – but to our deep disappointment, he has now been replaced as Health Minister by Simeon Brown.

Note: at the time of publishing, we have yet to understand the new minister’s angle on FASD…

Disability Reform

• In 2024 we provided Whaikaha with a wealth of research and information on the need for early diagnosis and supports for people with FASD and their whānau. We provided a report on the outcomes of our membership survey highlighting the intensity of the lived experience of FASD and the urgent need for access to disability support funding and services.
  
  
• We were ready for the final push for FASD to be included in the Disability Support Services (DSS) but then we had a change of Minister who decided to have a review of this system. The review of DSS means that Whaikaha has been refocused and that DSS has moved to the Ministry of Social Development, with a taskforce looking at some of the recommendations of the review.
  
  Although expanding DSS eligibility is now not on the government’s radar for the foreseeable future, we have strongly advocated for the inclusion of those with FASD – we pointed out the government is breaching the human and disability rights of people with FASD by this exclusion and perpetuating the inequities we face in all aspects of our lives. We will keep advocating for DSS – both collectively with other disability groups and individually.
• Throughout the year FASD-CAN continued its involvement with the Parent/Whānau/Family (PWF) Network which is administratively supported by Whaikaha but independent of it. This group brings together parent/caregiver and whānau-led groups to elevate in government the voices of disabled people and their PWF.  It has been a turbulent year for everyone in the disability sector and we have worked with like-minded allies to advocate for maintenance of DSS support funding, flexible funding, and implementation of the Enabling Good Lives principles. We also take every opportunity to point out the inequities faced by people with FASD and their PWF due to our ongoing exclusion of eligibility to access the DSS unless they meet other criteria such as a physical disability, intellectual disability, sensory disability, or autism.
  
  
• In July 2024, FASD-CAN made a written submission to the Health and Disability Commissioner’s review of the Code of Health and Disability Services Consumer’s Rights, and the Health and Disability Commissioner Act 1994. FASD-CAN pointed out that, “many people with FASD interacting with health and disability services have their rights ignored or abused” and that, “without support from caregivers, family and whānau they seldom complain because the complaint process is not easily accessible to them, they do not have faith that anything will be done if they complain, they are afraid complaining may adversely affect their supports, and that they will not be believed because of their neurodisability.” We concluded with our support for the proposed amendments to allow for the support of caregivers, family and whānau or another presentative when a disabled person is interacting with the Health and Disability systems.
  
  

Health

• Throughout July and August, FASD-CAN engaged in multiple face-to-face and online hui around the motu with our members about what they wanted to see in a revitalised FASD Action Plan. This resulted in FASD-CAN submitting a substantive report on your feedback to the Ministry of Health and Public Health Agency. Your thoughts, feelings and ideas were utilised in quotes throughout the document. Our report stressed the impact of FASD on the daily lives of the individuals and their families and whānau, your frustration with lack of effective support, both financial and in services, and the need to destigmatise FASD in the public eye.  
  
  The MOH/PHA have reviewed all the submissions they received from the five groups (including our own) they asked for input, and they prepared a report to the Minister making recommendations to Minster Reti about where to next. Our report is not to be made available for public release yet, but watch out for it next year. 
  
  
• The FASD-CAN team was busy at the end of September presenting at Aotearoa’s first FASD Research Symposium in Auckland.  Our team members presented on the future FASD Action Plan, our research on diagnosis availability in Aotearoa, and on the Individual Development Programme for our FASD youth and adults. Excellent networking and information sharing was achieved, with Minister Reti announcing further investment next year in FASD workforce training.
  
  Note: it is unknown whether Minister Reti’s mahi will continue under the new health minister.
  
  

Mental Health

• FASD-CAN was asked by Whāraurau (provider of training to support infant, child and adolescent mental health and addiction workforce) to provide a full-day FASD National Training Day. Dr Leigh Henderson and Kim Milne designed and presented this online training to many mental health and addictions kaimahi and other health professionals across the motu. They were supported by Natascha Lawrence in Canada and Dr André McLachlan. The feedback demonstrated its success, greater understanding of the issues facing people with FASD and their whānau/families and caregivers. We have since had some other organisations who attended reaching out to us for more in-depth workshops.
  
  
• FASD-CAN was then approached by Te Pou (a national workforce centre for mental health, addiction and disability in Aotearoa) to be part of a workshop series delivering professional development for the disability and health workforces.  The workshop series was part of Te Pou’s work programme to implement the Equitable Access to Wellbeing Framework (EAW). In our November workshop, FASD, the Hidden Disability: Building Skills and Professional Development for the Disability and Mental Health Workforces, we highlighted the need for improvement in disability and mental health services for people with FASD and their families/whānau using the voice of the lived experience. The workshop garnered unprecedented interest with over 700 people registered for the training, and the feedback on what was learned was fantastic.
  
  
• November also saw us making a submission on the Draft Suicide Prevention Action Plan for 2025-2029. We pointed out that people with FASD are over-represented in all the negative statistics in this area – a fact we have pointed out to the government several times. However, those with FASD are yet to be acknowledged and identified as a priority group for support and attention within the Suicide Prevention Strategy or proposed new plan. We challenged the use of the term “Every Life Matters” in the Suicide Prevention Strategy 2019-2029 when those with FASD have been left languishing without understanding or adequate supports for years. 
  
  

Education and Transitions to Work

• One of our key liaison groups in the education sector is Education for All (EFA). The group meets monthly to discuss issues relating to inclusive education and also receive regular updates from the Ministry of Education on issues of importance to the group. Again, it has been a very turbulent year of change for the education sector, with a lot of attention dedicated to the findings of the Royal Commission on Abuse in Care and faith-based organisations; this has highlighted a need for systemic change in residential care facilities. Little is happening in the area of inclusive education due to funding constraints and teacher/support worker shortages. In the meantime we know that our children continue to be excluded from schools because of their high needs for support.
  
  
• Last year, FASD-CAN enjoyed working collaboratively with Toitū te Waiora – the Community, Health, Education and Social Services Workforce Development Council – to develop new FASD microcredentials. NZQA approved the new microcredentials and two skill standards earlier this year, and the government is keen to see the details of the course developed and available as soon as possible. FASD-CAN further supported this mahi by providing feedback to Toitū te Waiora on their advocacy with the NZ Qualifications Authority to have a new neurodiversity domain established which would move the microcredentials from being housed under health to this new domain. We now know that the microcredentials will go ahead, but will not be produced by FASD-CAN.
  
  
• In July FASD-CAN presented three workshops at the Ngā Aukaha Learning Support Symposium held in Christchurch. These workshops for educators were well received and highlighted a need for further training and advocacy in the early education sector.
  
  
• In September FASD-CAN also made a submission to the Ministry of Education on their proposal based on Act Party policy to change school board objectives and to remove the National Education Learning Priorities (NELP) from section 127 of the Education and Training Act 2020. We saw little positive benefit from the proposed changes and advised we did not think they would improve educational achievement and attendance for learners – especially disabled learners.
  
  
• In October we took the opportunity to provide feedback to the Ministry of Education on the draft resources they had developed in response to section 12(b) of the Education (Physical Restraint) Rules 2023. We were happy to support the ‘relational’ approach, and use of the Universal Design for Learning approach taken in the resources to assist schools to recognise and respond to ākonga distress as early as possible to minimise the use of physical restraint in schools.  

We want to thank the members of our Education Advisory Group, whose input into the sector keeps us abreast of possible changes, gives us current professional education, integrity and advice and has input into our advocacy, training and resources.

Justice, Corrections and Police

Once again, FASD-CAN has been very active in the justice sector. We know many of our members interact with it on many different levels.

• We joined the Department of Corrections Neurodiversity Collaborative Networking Group which brings together Corrections staff with representatives from neurodiversity organisations to discuss initiatives to assist those who have a neurodisability and are within the Corrections system.
  
  
• We were part of a lived experience group and subject matter experts providing advice for the Ministry of Justice’s Young Adult List Neurodiversity project. The objective of the project is to better inform court staff how to identify, and best interact with and support neurodiverse people and their family and whānau navigating the youth Court system. We await with interest a report from the Ministry of Justice on the success of this project.
  
  
• After making the written submission to the Ram Raid Offending and Related Measures Amendment Bill in late 2023, we agreed to make a verbal submission as well in front of the select committee. This bill passed its first reading, but the Select Committee is due to report back at the end of February 2025. It is important to note there were some changes made due to the information and research that we and other very strong advocates from national organisations made during this process. It is also good to note that FASD-CAN was part of a wider, youth-focused collective voice for this bill. Now that group has transformed to a collective of organisations rebranded as the Young People in Contact with the Law group – we, along with others in this group, are working together to speak about many other issues that have arisen for youth.
  
  
• Our Chair Dr Leigh Henderson was asked on behalf of FASD-CAN to record a 'snackinar' for judges to watch during their break about FASD (known or unknown) in their courtrooms. Leigh was also involved, along with our Patron, Judge Fitzgerald, in talking at a lunchtime online meeting to address any questions or comments the judges had.
  
  

General advocacy

• We began the year in discussions with Oranga Tamariki, the Ministry for Children, highlighting the need for Oranga Tamariki to work with Education and the Permanent Caregiver Support Service (PCSS) due to PCSS funding being withdrawn for the use of teacher aide support in schools. Finding out who in Education and Oranga Tamariki has this as part of their portfolio has been a real struggle especially with the reduction of public servants in both ministries. We are continuing to highlight this issue and hope to pick it up again in 2025 once who is doing what becomes more settled.
  
  
• In May, Dr Leigh Henderson, made an oral submission to the Finance and Expenditure Select Committee. In our submission, we used the disability umbrella but focused on life-long neurodisability of FASD. Continuing the theme of needing more social investing in support as research shows early intervention and support mitigate the risk of the secondary effects of FASD. Our oral submission also highlighted the need for professional training, supports in law and order and the loss of productivity from our caregivers and whānau due to having to either give up work or work part-time due to the education and mental health-related challenges.