FASD Awareness Month in Aotearoa, 2022

On FASD Awareness Day, September 9 2022, the world awoke to the sad news that Her Majesty Queen Elizabeth II had died. Global news was understandably consumed with this event.

 

However, our webinar, in conjunction with Alcohol Healthwatch went ahead as planned with speakers including:

  • Leigh Henderson, the chair of FASD-CAN talking about the year that was and what’s ahead for FASD (scroll down to read Leigh's introduction below)
  • Anita Gibbs from University of Otago, speaking about what needs to change for caregivers
  • Harsh Vardhan from Te Whatu Ora, providing an update on FASD Action Plan 
  • Stuff Journalist Paula Penfold discussing FASD and the media
  • Tania Henderson, on her project ‘Hapū Mama’ which delivers FASD-informed care and training to whānau and service providers
  • Janell Dymus-Kurei of Hāpai te Hauora, on Hīpokina ki te Korowai Aroha o te Whānau – Understanding the Experiences of FASD Whānau
  • Nicki Jackson from Alcohol Healthwatch.

Press articles

• Newshub: Fetal alcohol spectrum disorder: Foster mum lays bare difficulties families face getting diagnosis and support with FASD-CAN member Karen Irving.

• Stuff: Calls for more support on FASD Awareness Day

Leigh Henderson, FASD Awareness Day 2022 webinar introduction 

Leigh Henderson, Chair of FASD-CAN, addressed FASD in Aotearoa over the past year and what we may look to in the future.

Around the world, FASD day is commemorated to raise awareness of the largest cause of neurodisability in the Western world. The day – the 9th day of the 9th month of the year – was chosen to raise awareness of the need to avoid consumption of alcohol during the 9 months of pregnancy. At 9.09 we will have a moments silence to mark this.

There are no prevalence data for FASD in NZ but the MOH acknowledges there is evidence that 3-5% of the population have FASD. That means approximately 5 to 8 babies born today will have lifelong brain damage due to exposure to alcohol during pregnancy. In many cases this exposure will have been unintentional – 50% of pregnancies in NZ are unplanned, and 21% of pregnancies are exposed to alcohol in the first trimester.

The majority of these will not result in the severe damage which is recognised as FASD. That diagnosis applies only to those whose cognitive and other aspects of brain function are considerably outside that seen in the general population. Of those diagnosed with FASD, 10% will have an intellectual disability, but all will suffer a range of difficulties in normal day to day life.

Oranga Tamariki recognises that up to 50% of children in care have FASD. The prevalence of FASD in justice settings is also high, but not quantified in Aotearoa. Suicide rates are manifold that of the general population. The reality for many families is far more subtle – they struggle on a day to day basis with the effects of this disorder, but don’t get noticed or supported. This truly is a hidden epidemic.

We will hear today of some of the progress being made in relation to FASD in Aotearoa.

The progress on the FASD action Plan, including work on the development of diagnostic guidelines, from Harsh Vardhan, Te Whata Ora. Janelle Dymus-Kurei from Hapai Te Hauora will talk about research and interventions for the Māori community. There has been increased media coverage of FASD, most notably the investigative documentary ‘Disordered’ – and we will hear more about that from Paula Penfold. We’ll also hear about research being conducted by Prof Anita Gibbs on interventions for FASD and from Tania Henderson on the Hapu Mama project and community work.

We cannot cover everything which has happened this year in a webinar, but a few other developments should be mentioned. Several research projects conducted by Joanna Chu and Jessica McCormack at the Uni of Auckland have identified levels of awareness and understanding of FASD in different professions.

Around the country there have been training sessions for different workforce groups, notably within the justice sector, to address FASD awareness. From the lived experience perspective some of our members report a better understanding of FASD when they unfortunately have interacted with police and the justice system. Awareness is growing!

Last week we were delighted to hear of the appointment of Paula Tesoreiro as CEO of the new Ministry for Disabled people. Paula understands FASD and recognises the need for greater support for those with this disability – we are hopeful of change under her leadership.

For FASD-CAN,  funding we received from MOH and OT has spurred significant organisational growth, enabling us to provide more extensive caregiver support, albeit still heavily reliant on passionate and committed volunteers. Our successes include:

  • a new website
  • our handbook – a comprehensive resource for people in NZ, praised as ‘life-changing’ by some caregivers
  • an ongoing range of webinars on FASD including behaviour, education, justice, interventions
  • an FASD navigator in the Tamaki Makaurau region
  • training courses and workshops for caregivers, support workers, OT social workers
  • a brand new educational resource for learning support staff to be announced at our Hui in October.

But still much needs to be done.

I was asked the other day if I could wake up tomorrow with one of the items on the FASD bucket list being ticked off, what would it be? That was no easy question, because what is the point of diagnosis without support? Or support availability without diagnosis? The threads of need are interwoven, and New Zealand needs a cohesive FASD strategy such as those adopted in some other countries.

FASD is more common than autism, Down’s syndrome and cerebral palsy combined, yet still largely unrecognised and unsupported. So why the inertia? Is the problem too big? Too costly? Does society not care? Do those in positions of power not realise the size and severity and impact of the issue? Is it because of stigma? If we want to change, we need to understand the resistance to change.

The full potential of up to eight children born in NZ today has been stolen from them by exposure to alcohol before they were born. For the estimated 27,000 to 45,000 children under 15 and for those young adults and adults living with FASD in Aotearoa – what do we need to enable them to live their best lives? We need:

  • access to diagnosis
  • disability support
  • caregiver support
  • workforce development
  • access to learning support and accommodation within education settings
  • societal acceptance
  • societal awareness of prevention of FASD.

Last September the Children’s and Disabilities Commissioners published their report to the Prime Minister on the rights of those with FASD. The Health Minister responded at the time that the government was going as fast as it can on reforms. Have we seen any significant policy changes since that time? No.

Two weeks ago New Zealand’s performance against the United Nations Convention on the Rights of Disabled people was presented to the review panel in Geneva. A supplementary report on FASD was included. Will this be the event that will bring about change – we must wait and see.

In March this year the Waitangi Tribunal heard a claim against the Crown for the damage caused by alcohol, including FASD. This provided an airing of the many issues relating to the diagnosis and support of those with FASD in Aotearoa. Is anyone listening?

Let’s see what progress is made in the next 12 months.

 

Leigh Henderson, Chair, FASD-CAN