Source: Hapai Te Hauora
Māori Public Health Organisation, Hāpai Te Hauora, released the Whakakotahitanga Fetal Alcohol Spectrum Disorder Guidelines, alongside the Government who announced its renewed priorities for FASD this morning at Papakura Marae.
Supported by a Steering Group and multiple advisory groups, the approach to developing the guidelines included co-design with lived experience whānau and health professionals. This process highlighted the importance of Te Tiriti o Waitangi, Māori understandings of health, and whānau voice.
Jacqui Harema, CEO of Hāpai Te Hauora, stated that months of research, steering group advice, and whānau interviews have produced a clear mandate from the community that the time to address and support whānau is long overdue.
“Every year, up to 3,000 of our babies are born with FASD. These new guidelines will hopefully establish a clear assessment and diagnosis pathway that will lead to more support. Additionally, today’s announcement by Minister Shane Reti will bring relief to all involved because while FASD is officially recognised as a disability, there is no access to funding to support families.”
A.J. Fitzgerald, District, Family, and Youth Court Judge and Patron of FASD-CAN, highlights the importance of these guidelines for whānau:
“Part of the injustice for those with FASD is that they are the innocent victims of a preventable disability. Another injustice for them, and for the whole community, is that this disability is capable of being well managed with appropriate support and services. If those were provided, the affected people would be able to lead happy, fulfilled lives.”
Tony Kake, CEO of Papakura Marae, quickly agreed to hosting the launch of these guidelines at the marae today, as he has firsthand experience with FASD.
“Our whangai boy came to us as at the age of four. We knew instantly he had issues as his behaviours were not that of a normal four-year-old boy and it wasn’t until he was seven years old that we finally got a formal FASD diagnosis. Fundamentally what works best for our boy with FASD is an environment with structure, routine and minimal changes. He knows he’s safe, he isn’t moving from house to house and that he is loved”.
Mr Kake feels reassured by the new guidelines and the Government refocussing on FASD whānau.
“I welcome any support particularly as he transitions into adulthood because we have hope, we have commitment and a belief that he can change the world – for the better!!!”
Hāpai te Hauora look forward to sharing Whakakotahitanga widely with clinicians and professionals who are committed to supporting whanau with FASD diagnosis. The full document is available to view now at www.hapai.co.nz.
