Kim Milne, the FASD-CAN Principal Advisor and Leigh Henderson, Chair participated in a two-day wānanga in Wellington in November which brought together key leaders from parent/whānau organisations/groups within the disability sector for conversation, connection, and input into core government ministries and directions.
This event was funded by Te Pou and involved members of the Office of Disability Issues (ODI) Caregiver Group. FASD-CAN has been a member of this group for two years and has valued the participation, which provides a conduit to government policy decisions, the sharing of knowledge around disability and caregiving issues, and a network where we can all help others to help our loved ones to lead better lives.
FASD-CAN Chair Leigh Henderson took some notes on the meeting.
• We met with the new CE of Whaikaha, Paula Tesoriero. Paula talked about progress to date in development and roll-out of the Ministry, the challenges it faces while getting up and running, and gave some direction around how our collective voice as parents and whānau would have input. The extension of Disability Support Services is definitely on her radar.
• Nigel Ngahiwi from Kāpō Māori Aotearoa led the group through some Treaty training within the context of disability, which provided a useful benchmark for us. We believe that FASD-CAN is on the right pathway to honour our Tiriti commitments, but we have a way to go.
• Matt Frost, ODI, talked about the report to the United Nations on New Zealand’s compliance with the United Nations Convention on the Rights of Disabled People and the recent hearing in Geneva. The critical issues for our community were the supplementary report on FASD (an amended version of the report prepared in 2020 by the Children’s Commissioner and the Disability Commissioner for the Prime Minister) as well as the right to education of disabled people.
New Zealand is the first country to take the issue of the rights of people with FASD to the UN. However, the recommendations in relation to FASD for the NZ government are limited to ensuring that FASD is included in the Enabling Good Lives roll-out. Also of concern are the recommendations to phase out special education facilities. The government has until March 2023 to report back on how they will address the recommendations raised by the hearing. On the more general topic of the process, the group raised the need for increased involvement of whānauin this process.
• We heard from the Ministry of Health/Te Whatu Ora team tasked with writing the new national disability strategy. The team spent over an hour listening to the group’s collective concerns and making extensive notes! Health is a major pain point for many whānau, and we raised the multiple issues and challenges we face at present.
This was a great experience for Kim and I to spend time with others within the disability sector. Most of us run on the smell of an oily rag, we are all time poor with never enough time or funding to meet the need, and we are all highly passionate about making things better for families. Through this partnership we can have each other’s concerns amplified and feel stronger than working in isolation.