July Newsletter

 

He iti te mokoroa, nāna i kati te kahikatea.

The mokoroa (grub) may be small, but it cuts through the kahikatea.

The whakatauki above reflects that small things can have a great impact. It encourages us to think big. Although numbers or resources may be small, like the mokoroa, it is possible to achieve great tasks/achievements.

A word from our Chair

Since its inception FASD-CAN has been a small organisation with a big dream – to enable families impacted by individuals with FASD in Aotearoa to access services to allow their loved ones to have the best lives that they can. Our vision has been to set up support networks, both face-to-face and virtual, to advocate at political and policy levels; to change the recognition and services available to our whanau and individuals, to raise awareness in society of FASD and its lifelong impact and to assist professionals to understand and support our loved ones.

Much of this work has been performed by a small volunteer committee. We are therefore excited to now have accessed additional funding to enable us to grow into a more sustainable organisation. On 25 June we signed a funding agreement with Oranga Tamariki to build our capacity to enable us to provide training to caregivers of individuals with FASD. With these funds we will be able to further develop our infrastructure, develop New Zealand specific FASD resources and work towards getting longer term funding.

We are also making some good progress with implementing the funding from MOH to support families with individuals with FASD. As you will see elsewhere in this newsletter we are pleased to have appointed our first FASD navigator, Anna Gundesen.

Watch this space for updates on our progress on rolling out the webinar programme and a ‘Whānau Direct’ grant scheme (see further details below). The webinars and grants will be available for FASD-CAN members only. We are revamping our resource pack provided to new members, building on the excellent toolkit resource developed by NoFASD in Australia.

Regrettably progress has been glacial in regards to getting FASD recognised as a disability. We continue to promote this on human rights grounds, for family and individual welfare and on the economic benefit to society. We have been fortunate in having the Disability Commissioner, Paula Tesoriero and the Children’s Commissioner, Judge Andrew Becroft, arguing for this consideration. 

On other fronts the FASD-CAN committee and members have been involved in hui addressing abuse in care, the government’s anti-domestic violence strategy, priorities for FASD research in New Zealand, the UN periodic review of human rights and various activities relating to a more inclusive education system in New Zealand (see details below).

With all of these activities going on, the Committee was very pleased to have our previous Treasurer, Ross Porter, offer to take over the Treasurer position and he has been co-opted on to the committee. Thanks Ross!

At this time of year our thoughts also turn to our annual meeting and AGM. As this will be our first face-to-face meeting in two years I’m hoping to see many ‘old faces’ and new members in Christchurch on 25th September. And please get your thinking caps on (and red shoes) to generate ideas for promoting International FASDay – 9 September.

Leigh Henderson, Chair

           

FASD-CAN formalises a new FASD Navigator role

As part of the MoH funding received by FASD-CAN, an FASD Navigator role was to be introduced as a pilot initiative. This initiative has the goal of providing direct support to families, individuals and whanau who are impacted by FASD.

In May, we kicked off the recruitment process to find our first ever navigator, and in June we selected our successful candidate, Anna Gundesen.

Anna Gundesen – FASD Navigator

Kia ora koutou and warm Pacific greetings – well I have to say I am buzzing. It has been my passion for some years now to walk alongside whānau and family members who are parenting those with behaviours caused by prenatal alcohol exposure.

I am so thrilled to be appointed as the first FASD Navigator in this pilot position through FASD-CAN. I have been an advocate navigating my way through the social, education and health services to find the best fit to support our third child with the strengths and challenges that are symptomatic of her FASD. We were blessed when she joined us at 18 months old and she complements our Pakeha, Māori, Cook Islands whānau unit.

I thoroughly enjoyed my previous role as Regional Coordinator for Caring Families Aotearoa. I connected with many whānau, caregivers, frontline professionals and organisations and I look forward to re-connecting and extending my networks with my focus on FASD.

It feels timely this new role starts in Matariki – a time of reflection & being grateful for all that is and remembering those we have lost, celebrating the present and looking ahead to the future. I walk forward holding hope, hauora, respect and above all whānaungatanga. I look forward to our paths crossing, interweaving and ensuring this a successful pilot that becomes a springboard for many regional FASD Navigators across Aotearoa.

 

The Human Rights consultation

FASD-CAN advocates alongside other disability organisations for the equitable treatment of people with disabilities, including neurodisabilities such as FASD. We therefore welcome recent progress arising from a complaint the IHC lodged under the Human Rights Act, 1993. This legal mechanism considers whether government policy and processes are free from unlawful discrimination.

The Human Rights Review Tribunal has considered that the Crown has a case to address. The Director of the Office of Human Rights Proceedings, Michael Timmins, has said that he thinks the way in which disabled students experience discrimination in their access to education is a serious matter of great public interest. He wants to talk with government about what they could do to better protect disabled students from discrimination at school.

Michael Timmins wants to hear from people from the education, disability, and community sectors about what they think about these problems and how they could be solved. Information is being collated from families and students on:

  • What difficulties have you and your child faced at school?
  • How did you go about trying to solve those problems?
  • What changes do you think need to happen for your child and other disabled students to get a fair deal?

Hui are being held throughout the country. FASD-CAN will keep you notified of meeting dates and venues. More details here: https://ihc.org.nz/ihcs-education-complaint

 

Whanau Direct

Our Whanau Direct Scheme is currently under development. The objective of this scheme is to utilise the funding that Ministry of Health made available to FASD-CAN for the purpose of supporting members of FASD-CAN and their whanau.

The goal of the Whanau Direct Scheme funding, is to enable our members to access:

  • an asset that will improve life for an individual or family living with FASD
  • support which may include respite care, or activities such as riding for the disabled for those living with FASD
  • travel expenses to access services or support e.g. travel expenses to FASD support group meetings
  • training for an individual or family living with FASD
  • educational support e.g. teacher aide or tutoring

We expect funding will be up to a maximum of $500 per FASD-CAN household and you’ll need to be a registered FASD-CAN member to be eligible.

We hope to finalise the application process and confirm the start date for the scheme in the upcoming months. We’ll keep you updated via our newsletter, website (www.fasd-can.org.nz) and Facebook Group (FASD-CAN NZ Parent and Carer Support Group).

 

What’s happening in Education?

For many of our families the greatest difficulty they face is getting appropriate supports and understanding of individuals with FASD within the education system. It is heartening for those of us who have been advocating for better awareness of FASD within the education sector and improved learning support for those with neurodisabilites to be involved in various current initiatives aimed at addressing these issues. 

These activities include:

  • The Ministry of Education Review of Interventions for Students with the highest level of Learning Support Needs - FASD-CAN was involved in consultations with the Ministry of Education which led to the Learning Support Action Plan 2019-2025. One of the priorities of the Action Plan was to provide flexible supports and services for neurodiverse children and young people. The Ministry have acknowledged concerns raised about the quality of supports, who can access them, how they are funded and provided, and how long the support is provided for. The Ministry is now proposing to review whether they are providing the right supports for tamariki and rangatahi when they need it and for as long as they need it to achieve their full potential through positive education outcomes. This is being done via a co-design process and FASD-CAN has been invited to provide input on behalf of individuals and families with FASD and those involved in their professional care.
  • The NZEI has started a campaign Ngā Aukaha All in for Tamariki on issues of funding and access to learning support for children. They are encouraging parents and caregivers to sign up and tell their story. You can do this at https://www.ngaaukaha.org/  They will also be running a 2-day seminar in Auckland in early September.
  • CORE Education has been contracted by the Ministry of Education to produce the learning modules to provide more flexible supports for neurodiversity in learning. This was identified as a priority in the Learning Support Action Plan. The project will develop tools and resources for whānau, families, and kaiako on neurodiversity and inclusive design. Professor Anita Gibbs, a FASD-CAN member, attended the set-up meeting.

FASD-CAN is considering how we can best advance our advocacy efforts within the education sector.  Our membership includes professionals involved in all levels of our education system, many of whom are also caregivers. We are currently discussing ‘where to next’ with a pilot group of members passionate about education. Please get in touch if you are interested in being involved in future activities.

 

Save the Date! 

We’ve excited to announce that we’ve booked in 25th September 2021 in Christchurch, for the FASD-CAN annual event. This is a full day where individuals, whanau and caregivers can connect, learn and share with other members who are on the same journey. Last year, we held our FASD-CAN day via Zoom, so we are really excited to be planning a face-to-face event this year.

Further details will be provided on our website, Facebook page and in the next newsletter, including how to apply for funding (if required) for flights to Christchurch.

Stay tuned for more information – but in the meantime, don’t forget to SAVE THE DATE!

  

Want to join FASD-CAN?

We have a lot of exciting initiatives that are currently in development. Many of these will be specifically for our FASD-CAN members, so there’s never been a better time to join.

It’s easy to join us. Visit Become a Member - Fetal Alcohol Spectrum Disorder - Care Action Network (fasd-can.org.nz) to complete the membership application form, or you can email our secretary directly at [email protected].

Membership costs $11.50 per year. Please talk to our secretary if the membership costs are a barrier to joining our organisation.

 

Workshops

From time to time FASD-CAN is notified of workshops on FASD in different parts of the country. If you are interested in attending a workshop and would like to be linked up to organisers of any in your area that we become aware of please send an email to [email protected]