FASD-CAN Newsletter Dec 21

A Word From Our Chair ­– December 2021

As I look out of my window, I see an amazing glory of pohutakawa trees. What an uplifting sight, and what a welcome thought that we’re now entering the holiday season!

As the year draws to a close, it’s customary to reflect on the year that was and look hopefully toward the next. Without a doubt it’s been a tough one for many, especially those who did the hard yards during a prolonged lockdown in Auckland. Like many others in the disability community, some of our whānau struggled with the isolation and unavailability of the support they rely on to ease the daily travails of their lives. Some of our tamariki struggled with the lack of routine, social interaction and anxiety about the future. Parents and caregivers had to cope with less time for self-care, and juggling care responsibilities with teaching young ones and even paid work. So it’s time to congratulate ourselves – we survived!

We announced this time last year that we had received our first government funding. This has enabled us to employ a navigator in Tāmaki Makaurau, redesign our website (launch due early 2022), commence a webinar series on FASD which has relevance for those in Aotearoa and prepare a Whānau Direct Grant Scheme for FASD-CAN members. This will be launched along with our new website.

During the year we were fortunate to receive seed funding from Oranga Tamariki to enable us to be in a better position to deliver support and services to those who are caring for individuals with FASD. We used this to build our infrastructure, governance and contract administration (Maureen) and communications (Kathy) to assist the Board, who are all volunteers. We are currently finalising the recruitment of our first employee.

Volunteers are the lifeblood of a charity and this year I’d like to acknowledge the help of many. They helped with the website development, with the navigator recruitment panel, running our annual hui, attended important advocacy meetings with OT and MOH, provided legal advice on contracts, responded to media requests to continue to raise awareness of FASD and provided personal advocacy assistance or advice when enquiries have come in to FASD-CAN. It has been a year of many consultations and government hearings, too – particularly the Abuse in Care Inquiry and the development of the Anti-Violence Strategy. There’s been consultation around the Learning Support action plan and the projects being implemented as the second tranche of the government’s FASD action plan. Sharing the load with volunteers has helped us make our voices heard on many fronts. Thank you to one and all.

As educational intervention for our tamariki with FASD is such an important factor in mitigating the secondary effects of FASD, this year we set up an education sub-committee. We worked together to identify an appropriate resource for schools and provide input into funding of children in education, as well as policy around special schools. This group will help us move forward and represent the interests of those with FASD in the education system. We’re grateful for a donation from the Women’s Christian Temperance Union for a donation to assist with the development of a resource on FASD for schools.

We have recently been advised of the retirement of Christine Rogan from Alcohol Healthwatch. Christine has worked tirelessly for the past two decades to raise the profile of FASD in Aotearoa, the need for prevention and for support. She helped found FASD and has been a fantastic source of knowledge and support for the committee since its formation. We’d like to thank Christine for her unwavering advocacy and support and wish her well in retirement. We will miss her greatly.

A highlight of the year was the release of the report prepared by the Disability Commissioner and the Commissioner for Children for the Prime Minister, which included input from FASD-CAN. The unwavering advocacy of Paula and Andrew for the human rights of those with FASD has been inspiring. We stand by with bated breath for the response to that report.

The absolute requirement for self-care and looking after yourself is a core principle of any training on FASD. For many, the holiday season is a time for rejuvenation, recharging batteries and preparing for the year ahead. For those who anticipate the time to be more challenging, remember that FASD-CAN was set up to encourage connections between caregivers. Our parents and caregivers Facebook group is a good place to go if you are feeling down, want to vent, or simply want some advice. We also welcome it as a place to share successes and highlights – and we have been delighted to read about some of them this year.

Wishing you all the best for the Christmas break and for the New Year.

Kia pai ngā hararei (make those holidays good).

Leigh Henderson
Chair, FASD-CAN