Fetal Alcohol Spectrum Disorder (FASD) is a lifelong disability that affects many individuals and whānau across Aotearoa New Zealand. However, there is still limited understanding of the financial and emotional toll it places on those caring for tamariki with FASD.

"Our review of international research found very few studies that measured these costs — and none that focused directly on New Zealand families. This gap is concerning, especially given a recent report by the New Zealand Institute of Economic Research estimated that the cost of FASD is at NZD$4.8 billion in 2023 alone. Despite the scale of this estimate, there remains little research on the real, everyday impacts experienced by caregivers.

"Our findings highlight that caregivers often face significant out-of-pocket expenses for healthcare, education, lost work opportunities, and mental health support — all while feeling largely unsupported. International research shows that nearly 90% of caregivers would like more help. Strengthening access to affordable respite care, mental health services, and caregiver support groups in New Zealand could make a real difference. Investment in these services is critical to reducing the burden on whānau and enabling caregivers to live fulfilling lives while raising children with FASD.