Ten years after a groundbreaking study revealed record-high rates of FASD in outback Australia, researchers have returned to the Kimberley to see how the children are coping in adulthood.
- A 2009 study was one of the first in Australia to provide firm figures around the rates of children impaired by their mother’s drinking during pregnancy
- There are concerns support is still limited for families living with FASD in regional and remote areas
- The 10-year follow-up study will look at the long-term impacts of FASD, and gaps in services and supports
In 2009, a generation of young children in the Fitzroy Valley communities were assessed for fetal alcohol spectrum disorder (FASD).
It was found one in eight children had physical and mental impairments linked to their mother’s alcohol consumption during pregnancy — one of the highest rates recorded among the handful of studies that have been done.
The local women’s centre, which facilitated the study, has invited researchers back for a 10-year follow-up.
Emily Carter, CEO of the Marninwarntikura Women’s Resource Centre, says it’s being driven by concern that the cohort — now aged in their late teens — is still not getting the support needed.
“We were concerned that the children from the original study — the Lililwan Project — didn’t receive the supports they needed after the study, and as a result are struggling in adolescence,” she said.
“There have been some great initiatives that came from the project, but there’s concern that the health and education systems don’t have the capacity to support the large number of children with chronic complex needs identified in in the study.
“So this will allow us to again capture the voices of young people and their families … with the long-term goal of using the data to improve services.”
Professor Elizabeth Elliot, from the University of Sydney, is leading the study.
She says they’ve started sitting down with same 108 participants, to see how they have fared in the past decade.
“We have started interviewing all the kids we met 10 years ago, and we are interviewing again all of their parents and carers,” Professor Elliott said.
“What we’re finding is that many of these kids — as we found in the initial project, do have concerns about their health and their mental health.”
She says it’s not study for study’s sake — the aim is to secure tangible change.
“Some of them have grown up in difficult circumstances and they acknowledge that, but they do have aspirations.
“I think our key outcome from this study will be to help them fulfil their dreams of working and living independently and making a contribution to their community, so we’ll be looking at their whole range of needs — their needs for community facilities, and their needs for healthcare and mental healthcare.”
FASD impacts people in different ways, but is commonly associated with impaired motor skills, memory, attention span, temper control and social skills.
It impacts families in all strata of Australian society, but in the Kimberley there’s a widespread belief that undiagnosed FASD is fuelling issues with juvenile crime and poor school attendance.
It was hoped the NDIS would be a gamechanger, but Emily Carter says there’s been little improvement to access to specialist services.
“We have a wonderful partnership with the local paediatric and allied health service, but unfortunately they often struggle to diagnose children with FASD without a clinical psychologist,” Ms Carter said.
“There is also no known pathway for helping adolescents and adults who want to be assessed for FASD,”
She says it’s a frustrating situation.
“We know that proper diagnosis early in life and connection to disability services is a strong protective factor against adverse outcomes, like contact with the justice system.
“Why this is not available in the Fitzroy Valley is beyond me — particularly given it’s the only place in the country where we know the true prevalence of FASD.”
The National Disability Insurance Agency, which administers the NDIS, says it’s doing its best to boost services.
It is supporting at least 1,400 Australians in relation to diagnosed FASD.
It recently ran an outreach trip to Fitzroy Crossing, to raise awareness of the funding available to people with a diagnosed disability, which resulted in an extra 20 people being signed on.
Following the clinic, NDIA assistant director Elspeth Jordan said remote access was a priority issue.
“The NDIS is 110 per cent committed to getting services to people in the Fitzroy Valley,” she said.
“We recognise there are challenges in doing that but we are committed to working with the community to actually deliver those plans.
“We want those plans coming to life.”