Families and caregivers struggling to cope with young people affected by foetal alcohol spectrum disorder (FASD) gathered in Whangarei recently to learn more about the disorder, to share their experiences and call for help.
FASD refers to the range of disabilities that can occur when a developing foetus is exposed to alcohol during pregnancy. More than 200 people attending the workshops to learn more about the special needs of its victims, from both clinical and caregiver perspectives.
Many caregivers expressed frustration that FASD was not recognised in its own right as a disability warranting financial support. The hui heard that even when FASD was professionally diagnosed, which it seldom was, a young person would typically also have to be diagnosed with another intellectual problem to be eligible for disability-related support.
Experts and caregivers also voiced concerns that many agencies they dealt with had not been trained in how to respond to young people they suspected of having FASD.
FASD Centre Aotearoa clinical director Dr Valerie McGinn, who has had disabled children within her own family, spoke of how alcohol affected foetal development, and discussed research into New Zealand’s particularly high rates of women drinking while pregnant (resulting in up to 3000 children born with FASD every year).
Consuming alcohol during pregnancy could result in brain damage, as well as health and behavioural issues that could persist for life. Many would need lifetime support just to cope with everyday tasks, she said.
Hui organiser and Northland DHB health promotion adviser Dave Hookway said services to assess children suspected of having FASD had increased in Northland in recent years. If a paediatrician’s diagnosis wasn’t clear, children would be referred to the multi-disciplinary Complex Development Assessment Clinic.
Northland DHB Child Health Centre clinical team leader Karen Faber said that while FASD was not specifically recognised as a disability eligible for financial support, diagnostic teams were currently absorbing comprehensive assessments within their existing funding allocation, bringing increasing pressure to bear on service delivery by Child Health Services and the Child and Adolescent Mental Health and Addiction Service Te Roopu Kimiora.