Our six-month advocacy update – Jul-Dec 2023

Some words of context from our Principal Advisor, Kim Milne:

It's been a rather hectic start to 2024! The groups and organisations we liaise with have been calling many meetings to begin their work for the year – and on a personal note, our son has made the brave decision at 23 to re-engage with the education system.

It’s early days but already he has suffered from several panic attacks which have left him tired and feeling overwhelmed. His anxiety comes from his lived experience of how the education system largely let him down, particularly at secondary school. He was judged, misunderstood, labelled as lazy, isolated, rejected by his peers, and made to feel inadequate in so many ways. To still want to learn and get an education in the face of this traumatic history, to persevere when your brain and body are telling you this is too much … well, I see that as true courage.

This has made me reflect on FASD-CAN's advocacy: when we engage in advocacy it is always with the drive and passion to see things improve for next generation of people with FASD, their stalwart caregivers, families and whānau. And we’re able to use our lived experience in our advocacy to help drive home the message we are sending to people, policy makers and government.

This report covers the period 1 July to 31 December 2023, excluding summer holidays.

Disability Reform

• We became a member of Whaikaha’s Disability Support Service (DSS) Eligibility Review Advisory Group. This work is intended to address inequities in access to DSS for different disabilities and also potentially aspects relating to the application of DSS. The scope of the review is currently under Ministerial consideration. The membership of the group comprises a range of organisations representing people with disabilities, including some who currently have some access to DSS.

We know that being involved in this review is very important for our members and a successful outcome could help address the many inequities people with FASD and their caregivers, families and whānau face when trying to get the necessary supports needed for our loved ones to thrive and have a good life. This work, like much else around FASD, is still very much in its infancy and we will keep you updated on developments in our next report.  

Education and Transitions to Work

• In August we published on our website FASD-CAN’s interpretation of the definition of inclusive education.

“Inclusive education is where every ākonga is actively supported to reach their potential in partnership with family, whānau and kura, where they have real choice and access to an equitable and mana-enhancing learning experience in a learning environment that best meets their unique strengths, interests, social and emotional, and learning needs.”

This interpretation was reached in consultation with our Education Advisory Group and represents our position that specialist residential schools need to remain an option available to our people with FASD and their families and whānau, particularly until mainstream schools get better at meeting the needs of our ākonga. This interpretation stays true to the intent of the definition of inclusive education developed under the UNCRDP, but also represents the Enabling Good Lives (EGL) and whānau ora principles of family choice.

• On 17 July we met with representatives from the Tertiary Education Commission (TEC) to discuss education relating to the inclusion of students with FASD in tertiary education settings, and of FASD in tertiary sector disability action plans. As an immediate result of this meeting, information about FASD and a link to our website was added to their own website.

• On 12-13 October FASD-CAN facilitated a workshop at the Neuroabilities Symposium held in Dunedin entitled: Fetal Alcohol Spectrum Disorder – Setting our tertiary students up to succeed. The objective of the symposium was to break down the stigma and belief some people hold that neurodiverse individuals cannot succeed in tertiary education settings. The workshop was well received, and we extend our thanks to Professor Anita Gibbs, Dr Joanne Chu, and Tracey Johnston for joining our chairperson, Dr Leigh Henderson, and myself in this presentation.

• We engaged with Core Education to review and update the FASD education information on the Ministry of Education’s Te Kete Ipurangi (TKI) website. (Note: all information on the TKI website has now been migrated to a new digital platform, Tāhūrangi.) Our particular thanks to Fiona Harkness (a member of our Education Advisory Group) and Tracey Jongens (FASD education guru) who volunteered their time to participate with us in this mahi.

• In October we were also involved in a stakeholder meeting convened by the Ministry of Education to give feedback on their response to the Highest Needs Review, and the development of an inclusive education approach to their mahi. We are continuing to monitor the outcomes of this work programme closely and will keep you informed of any developments as this mahi will materially affect many FASD ākonga / students.

• In October through to December we were also involved in meetings providing feedback on Tahatū, a new interactive careers website being developed by the Tertiary Education Commission. We pointed out many possible issues and problems for neurodiverse people using and navigating the platform. 

• We also provided Workbridge with information about best practice when working with a person with FASD looking for employment.

Justice, Corrections and Police

FASD-CAN has been very active over this six-month period in the justice sector space.

• In October we made a submission to the Ram Raid Offending and Related Measures Amendment Bill. The Bill, if passed, will criminalise children as young as 12 and 13 years of age and establish military-style boot camps to address anti-social behaviour. We maintain that this legislation, if passed, will breach New Zealand’s commitments made under the United Nations Convention on the Rights of the Child treaty (UNCROC) and the Universal Declaration of Human Rights (UDHR).

The main thrust of our submission was: “… the proposals in this Bill are materially flawed and will not elicit the social outcomes being sought. However, it will achieve greater criminalisation of minors whose brains have been damaged by alcohol, who are very suggestible and often manipulated by others, and who are functionally much younger than their chronological age”. Read more here.

We have also joined a national collective advocacy group seeking a stop to the progression of the Ram Raid Offending and Related Measures Amendment Bill through parliament.

• We have been involved in a presentation to judges and in subsequent discussions with the Office of the Chief Justice on changes needed to accommodate those with FASD in the judicial system. Our presentation was very well received, and we have been asked to be further involved in training for Ministry of Justice staff.

• Since November, we have also been involved in advocacy relating to the Ministry of Justice’s Young Adult Neurodiversity project. The Young Adult List is being piloted in three District Courts around the motu: Porirua, Hamilton and Gisborne. It was a 2019 initiative of Judge Walker who recognised that young adults (18-25 years) needed better support and interventions (similar to youth courts and therapeutic courts) to stop reoffending.

From this initiative has come the Neurodiversity Project. The project has three work streams:

  1. identification of people with neurodiversity at a very generalised-level – i.e. identifying someone who may have neurodiverse needs, not that this person has FASD, ADHD, etc. The person running this work stream is working with clinicians to develop a screening tool for this purpose.

  2. how the Court responds to people with neurodiverse needs. They are gathering information, research and the evidence-base for best practice responses, including input from the lived-experience.

  3. development of a training package for all MoJ/Court staff.

• In November we began engagement with the Department of Corrections who set up a Neurodiversity Reference Group. The stated purpose of the group was to connect, network, share ideas, and discuss new developments in the field of neurodiversity. We will update you further on this initiative in the next six-month advocacy report.

• We have also been engaging with NZ Police in relation to their setting up a Disability Advisory Group. The development of this group is in its infancy. We also worked with the Police to promote our wallet cards and they wrote an article in their 10-7 Magazine providing information about FASD and our wallet cards. Initial feedback from someone with FASD who used the card was that the police officer changed the way he was engaging with them on presentation of the card. A great win for all concerned.


General advocacy

• We have been in discussions with Oranga Tamariki, the Ministry for Children, highlighting the need for continuity of Permanent Caregiver Support Service (PCSS) funding being available for teacher aide support in schools. Government departments argue the Ministry of Education should fund these costs for legislative reasons. We argue that the people caught up in this bureaucracy are vulnerable children like those with FASD who need more support, not less.

• The development of the Diagnostic guidelines for FASD in Aotearoa is nearing completion after three years of significant effort. FASD-CAN has been a member of the group.

• We have challenged depictions in the media of people with FASD in youth justice settings as coming from ‘troubled homes’ and deserving detention because they were without hope. It was noted ill-informed comments like these merely added to the existing stigma faced by people with FASD and their families and whānau in our communities. We argued that, just like any other child, people with FASD deserve to have the best possible environment to enable them to live their best possible lives.

• We continue to have regular liaison meetings to raise the profile of FASD and consider the supports needed to help those with living with it – with Te Whatu Ora, Ministry of Education, Education for All (EFA) group, the Parent Whānau Family Network Group (ex-Office of Disability Issues (ODI) Caregiver Network Group), and Whaikaha officials.