Gov. Josh Green recently signed a bill into law that establishes a five-year pilot program to help with the diagnosis and treatment of those with Fetal Alcohol Spectrum Disorders, or FASD.
It’s the first state initiative to address the disorder in 14 years. An estimated 71,000 people in Hawaiʻi could be helped by the program, according to the bill.
Jeremy and Terra Daniel are raising a daughter with the disorder.
"Our daughter, you know, people understand that she's maybe not neurotypical when they meet her. And so she gets a little bit more grace, she gets a little bit more compassion," Jeremy Daniel said.
"But some of the hard things in parenting her are — I'll give you some of the heartbreaking things as a parent — sometimes she doesn't understand why people don't want to connect with her, she doesn't understand why she makes an attempt to make a friend and it's not reciprocated."
Terra Daniel explained that FASD is more common than autism, spinal bifida and Down Syndrome combined.
"But any amount of alcohol while pregnant, that is consumed can cause permanent brain damage. So this isn't a stage, this isn't a bad day, this isn't a bad scenario," Terra Daniel said.
"This is permanent brain damage that these kids have to live with every day," she continued.
Dr. Ann Yabusaki founded the nonprofit Hawaiʻi FASD Action Group. She explained how medical guidelines now state that no alcohol is appropriate during pregnancy.
However, she said there isn't currently an organized concerted effort, even at the national level, to establish a diagnostic protocol for the syndrome.
"There are just a few states a handful of states that have diagnostic centers. So we've been pushing her way to please do something be one of those states," she said.
The newly signed bill for Hawaiʻi not only establishes a diagnosis program but raises awareness of the disease, said Jeremy Daniel.
"I don't know that it necessarily will immediately have impact. But I think that creating the awareness of the fact that it is prevalent, that it is an issue that it does contribute to other social issues and social challenges, approximately 1 in 20," he said.
For more information on FASD and to register for the 4th Hawaiʻi Conference on FASD , click here.
This interview aired on The Conversation on Sept. 6, 2023. The Conversation airs weekdays at 11 a.m. on HPR-1.
