The Loop - Nofasd Australia - Issue #7, March 2014

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NOFASD Australia
Issue #7, March 2014
Dear Members & Supporters,
Below are our key areas covered to keep you in The Loop,
This month in "The Loop"

This month NOFASD Australia warmly welcomes Adelle Rist to the team.  Adelle joins NOFASD Australia as National Educator and comes from a background in community development, health promotion and counselling having worked with young people in the alcohol and other drug sector, young people and adults in the area of mental health, and in local government.  
Adelle views the community service sector as a challenging environment, with many who seek help coping with multiple issues that impact on their health and general wellbeing.  She brings commitment, energy and enthusiasm to her work.  She is passionate about advocating on behalf of people who need a voice, has a strong commitment to social justice, and will continue to dedicate her time and effort to making a difference in other peoples' lives.
Adelle lives in North West Tasmania with her husband and a little old dog named Dizzy.  She is a mother of two adult sons who have “flown the coop”.  Adelle indulges in sharing conversation and food with friends who make her laugh, and high on her list of priorities are her health and wellbeing, enjoying runs on the beach and reading to keep both her mind and body fit.

In the January issue of The Loop, NOFASD Australia made mention that the International Charter on Prevention of FASD had been accepted for publication in The Lancet.  The Charter has now been published online  and represents an important milestone for the global community working together to  prevent FASD.

A reminder that NOFASD Australia will soon be implementing a YouTube channel, and would appreciate anyone willing to share their stories about living with FASD contacting us.  We feel that the use of short film to tell the stories of people living with FASD or of those working with individuals and families living with FASD will be a very powerful advocacy and awareness raising tool.  

NOFASD Australia is happy to announce it has joined Twitter, with the account @NOFASDAustralia, and we invite you to follow.
Please also remember to ‘Like’ NOFASD Australia on Facebook and share with your friends and family, as well as letting them know about the NOFASD Community newsletter.

Until next time,

Terri Baran
Administration Officer
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Of Special Interest

The most recent story in the media this month is that of Rosie Fulton, a 23 year old Aboriginal woman, living with FASD, who has been incarcerated in a NT prison without charge for the last 18 months.  NOFASD Australia CEO, Vicki Russell, shares her thoughts...

Just thinking… 

FASD is an unregistered, under-recognised and under-diagnosed condition with health, social, cultural, economic and judicial implications. As such, notionally proposing incarceration as the solution to ‘care’ for Rosie-Anne or as a prevention initiative to reduce the number of alcohol exposed pregnancies falls very short of an empathic and rationale understanding of FASD or why women use alcohol.  

Co-occurring media reports have raised attention this month in northern Australia. The first concerns the plight of Rosie-Anne, a 23 year old woman with a diagnosis of FAS, incarcerated for months without conviction. The second concerns an exploration of possible legislation to restrain women who use alcohol in pregnancy in patterns of high risk. The former story concerns a child exposed to alcohol in utero and the second story is the story of ‘some’ mothers, like Ms G in Canada. This was a case which failed “to deal with the systemic and social causes of alcohol and other drug use including violence, sexual assault, poverty, low self-esteem and lack of control” over their own lives. Tait (2002) notes how “discrimination worsens the situation for women from marginalized groups.”  

Rosie-Anne’s story is a sad indictment of a community response to some of our most vulnerable people. FASD means impairment in memory, reasoning, learning, development, speech and language. I am not the first to suggest that traditional cognitive-behavioural/learning theory approaches will not act as a deterrent to future unwanted behaviour by those living with FASD. The logic is simple - the ‘behaviour’ is symptomatic of a physical brain-based condition. We cannot see the brain and yet changing behaviour is the benchmark for management. We need knowledge of the FASD condition but we also need an improved understanding of FASD so that we can then accommodate brain difference. We need to expand the options available to the courts based on more realistic expectations of those living with FASD and this may mean considering 24/7 supervised supervision orders, orders written and explained in concrete language and lacking complex language and nuance; and community sentencing orders which reflect visual learning strengths more typical of those living with FASD. 

In respect to women who use alcohol in pregnancy, we have not addressed the question of gender. Are we interested in girls and women and their alcohol use across their lifespan or only during pregnancy?  Are the rights of women and unborn children to be free from trauma, victimisation, marginalisation protected in our actions? Restraining women who are pregnant and drinking adds an additional layer of trauma and another barrier to help-seeking. If actioned, how will girls and women’s behaviour be monitored? At the discretion of police; upon a notification to child protection; by mandatory reporting by bar and bottle shop staff? 

Has appropriate and qualified diagnosis and assessment been undertaken on women who drink at very high risk in pregnancy to ensure she herself is not affected by intergenerational use of alcohol. If so, it more than likely that parenting is about cannot parent safely rather than won’t parent safely. So, how about we have a conversation about safe, child welcoming and inclusive alcohol and other substance use residential therapeutic communities and interventions like the Parent-Child Assistance Program, University of Washington?  

Of 239 binge alcohol drinkers served by PCAP in seven counties…62 had a subsequent pregnancy. If all 62 mothers continued to drink, approximately 13 mothers (21%) would have a child with FAS, resulting in total lifetime costs of $33.2 million. Instead, only 18 mothers enrolled in PCAP continued to drink during the subsequent pregnancy, resulting in four children who may have FAS. This difference represents $23.6 million in lifetime cost savings.

Vicki Russell, CEO NOFASD Australia

Links to media articles are listed below in the 'FASD in the Media' section of the newsletter.

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National & NZ News

Australian equestrian Sarah Sherwood selected to represent QLD at the Special Olympic National Summer Games
For the first time, equestrian has been included in the Australian National Games, to be held in Melbourne on October 20.  Sarah Sherwood, 21, who lives with FASD and is the RDA QLD State Dressage Champion and QLD Para-Equestrian State Dressage Champion, is hoping to be selected to represent Australia in the sport in the World Games in 2015.
To attend the Melbourne Games, Sarah needs to raise $3,500 – if you, or anyone you know, would be happy to assist Sarah with sponsorship, please visit our website for details.
NOFASD Australia wishes Sarah every success in her representation in October, and her pursuit to attend the World Games.

Research to look at FASD rates among young offenders (Audio)
New research is set to provide a better picture of those affected by FASD in the WA prison system.  The Telethon Institute for Child Health Research was last month awarded more than $1.4 million in funding to screen young offenders for FASD, and provide training and FASD education for those working in the criminal justice system.  Chief Investigator for the project, Winthrop Professor Carol Bower, says clear data is needed for a fuller understanding of the rates of people with FASD in prisons.  Read more...

Inquiry into the harmful use of alcohol in Aboriginal and Torres Strait Islander communities
The Federal Government has set up a federal inquiry into the harmful use of alcohol in Aboriginal and Torres Strait Islander communities. One of the Terms of Reference includes investigating “The implications of Foetal Alcohol Syndrome and Foetal Alcohol Spectrum Disorders being declared disabilities” For further information about the Inquiry and how to make a submission visit the Inquiry website here.  

Latest video from Disability Care Australia: A Strong Voice: Self-Advocacy Webinar – 27th February 2014
The third webinar from the National Disability Insurance Agency, “A Strong Voice” is now available for viewing on their website.  The panel of guests discuss ways that self-advocacy has helped them make informed choices about their reasonable and necessary supports and achieve their personal goals.  The next webinar will be held on the 20th March, named “Women with Disability, the NDIS and the Broader Community”.  Read more...

FARE Annual Alcohol Poll 2014
The Foundation for Alcohol Research and Education have released the results from their Annual Alcohol Poll that examines what Australians drink and what they think about alcohol. 
One very worrying result from the poll revealed that only 50% of Australians are aware of FASD and only 67% believe that zero standard drinks in pregnancy is safest to avoid harms to the fetus.  Read more...

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FASD in the Media (Australia & NZ)
Drinking alcohol during pregnancy targeted as NT Government considers rights of unborn child
The Northern Territory Government is considering legislation that could see pregnant women prosecuted or restrained if they drink dangerously because they are infringing on the rights of unborn children.  Attorney-General John Elferink says the fact that a large number of children are growing up in the NT with foetal alcohol syndrome is a “real problem”.  Read more...

Protecting unborn babies from alcohol-related harm 
Aboriginal women in Australia have shown how communities can take action to protect their women and babies from alcohol-related harm in pregnancy.  Read more...

Many unfit to plead but left in jail
Many of the men and women in West Australian jails are so brain-damaged by fetal alcohol syndrome they could have been found unfit to please, says Chief Justice Wayne Martin.  Chief Justice Martin wants finite terms so that mentally impaired accused cannot be held for longer than they would have been if found guilty of the crimes with which they are charged.  And yesterday he welcomed the Barnett government’s plans to build “declared places” as alternatives to jail for any prisoners such as Rosie Fulton who have been found to lack the capacity to plead to any charge.  Read more...

‘Lack of action’ on harmful use of alcohol in Indigenous communities
Kimberley Aboriginal Law and Culture Centre says governments have failed to act on multiple recommendations to curb the harm alcohol does in Indigenous communities.  Read more...

Support for pregnant mothers who drink is lacking
The case of Rosie Anne Fulton, a 23 year old Aboriginal woman who has been held in a Kalgoorlie jail without conviction for 18 months, hit the headlines this week and highlighted the problems associated with foetal alcohol spectrum disorder, also known as FASD. Read more…

Opinion piece from Senator Nova Peris - To stop the violence we need to stop the grog
“Let's stop the rivers of grog.  Let's stop the violence.  It can be prevented.  The evidence is clear.  Let's take action now.  Let's do it together.”  Read more...

FASD reaching pandemic proportions in NZ
New Zealand health groups say Foetal Alcohol Spectrum Disorder is reaching pandemic proportions, with high numbers of people living with the disorder undiagnosed.  Read more...

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The First Peoples Child & Family Review
The First Peoples Child & Family Review has dedicated this entire issue [Vol 8, No 1] to the topic of FASD and Indigenous peoples.  A number of fascinating studies.  Read more... 

The Better Safe Than Sorry Project: Preventing a Tragedy
Susan Rich is a psychiatrist, who heads this campaign and says, “I have recently seen a 10th person with Fetal Alcohol Spectrum Disorder (FASD) awaiting a possible death sentence and work with a forensic psychologist who has evaluated approximately 60 of these individuals over the past several years.  Read more... Video from Susan

Mother’s little helper: The social network helping women beat the bottle
Busy mum Kate Baily used to enjoy a glass of wine. And then another one. Her friends all seemed to be doing the same but Kate knew something was wrong – and then she discovered Soberistas, an online community that changed her life.  Read more...

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Latest Research

Current Research:  Improving the management of youth with fetal alcohol spectrum disorders in the justice system (WA)
The aim of this study is to evaluate the feasibility and effectiveness of two interventions to improve the identification and management of young people with Fetal alcohol spectrum disorders (FASD) in the justice system.  Read more... 

The International Journal of Alcohol and Drug Research
The open-access International Journal of Alcohol and Drug Research has released a second special issue on Fetal Alcohol Spectrum Disorders (FASD), with the intention of increasing awareness of the negative effects of alcohol use in pregnancy and improving prevention, treatment and care for those living with FASD. Read more...

Alcohol consumption during pregnancy and birth outcomes: the Kyushu Okinawa Maternal and Child Health Study
Y. Miyake, K. Tanaka, H. Okubo, S. Sasaki and M. Arakawa, BMC Pregnancy and Childbirth, 20 February 2014
A recent meta-analysis showed no relationships between light to moderate alcohol consumption during pregnancy and the risk of low birth weight (LBW), preterm birth (PTB) or small-for-gestational-age (SGA).  The researchers here present the first epidemiological study on this topic in Japan.  The results of this particular study showed that maternal alcohol consumption of 1.0g or more per day during pregnancy was significantly positively associated with the risk of PTB but not LBW or SGA.  Further investigations are required to ascertain whether the positive association between light to moderate alcohol consumption during pregnancy and the risk of PTB is replicated in other populations, especially Asian populations.  Read more...

Maternal and Neonatal Plasma MicroRNA Biomarkers for Fetal Alcohol Exposure in an Ovine Model
S. Balaraman, E.R. Lunde, O. Sawant, T.A. Cudd, S. E. Washburn, R.C. Miranda, Alcoholism: Clinical and Experimental Research, 3 March 2014
Plasma or circulating miRNAs have potential diagnostic value as biomarkers for a range of diseases.  Based on observations that ethanol altered intracellular miRNAs during development, the researchers tested the hypothesis that plasma miRNAs were biomarkers for maternal alcohol exposure.
The research showed that shared profiles between the pregnant subject and the child suggest possible maternal-fetal miRNA transfer.  Circulating miRNAs are biomarkers for alcohol exposure during pregnancy, in both mother and child, and may constitute an important shared endocrine biomarker that is vulnerable to the maternal environment.  Read more...

Meeting the Needs of Children with Foetal Alcohol Spectrum Disorder Through Research Based Interventions
J. Gunn, New Zealand Journal of Teachers’ Work, Volume 10, Issue 1, pp148-168, 2013
This systematic review addresses the research question:  What interventions are most effective in supporting the Special Educational Needs of primary aged children with Foetal Alcohol Spectrum Disorder (FASD).  Four peer reviewed journals were systematically searched, identifying 11 studies that met inclusion criteria.  This review summarises and appraises the intervention outcomes of these studies and provides a cross-study analysis of results.  Further research into effective interventions is needed to develop a strong evidence base to guide parents, educators and other professionals working with children with FASD.  Read more... 

Maternal alcohol intake prior to and during pregnancy and risk of adverse birth outcomes: evidence from a British cohort
C. Nykjaer, N.A. Alwan, D.C. Greenwood, N.A.B. Simpson, A.W.M. Hay, K.L.M. White and J.E. Cade, J Epidemiol Community Health, 10 March 2014
Evidence is conflicting regarding the relationship between low maternal alcohol consumption and birth outcomes.  This paper aimed to investigate the association between alcohol intake before and during pregnancy with birth weight and gestational age and to examine the effect of timing of exposure.  Approximately 1,300 pregnant women aged 18-45 years completed questionnaires before pregnancy and for the three trimesters separately.  Even women adhering to the guidelines in the first trimester were are significantly higher risk of having babies with lower birth weight, lower birth centile and preterm birth compared to non-drinkers.  Read more... 

Playfulness and prenatal alcohol exposure: A comparative study.
J.L. Pearton, E. Ramugondo, L. Cloete and R. Cordier, Aust Occup Ther J. 19 February 2014.
South Africa carries a high burden of alcohol abuse. The effects of maternal alcohol consumption during pregnancy are most pronounced in poor, rural communities. Earlier research suggests that children with prenatal alcohol exposure have poor social behaviour; however, to date, no research has investigated their playfulness. This study investigated the differences in playfulness of children with and without prenatal alcohol exposure.  Read more...

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Upcoming Events

For a full listing of upcoming events please visit our events page on our website.  If you have an FASD-related event you would like published in our newsletter, please email Terri at [email protected].

NDIS Community Forums 
The National Disability Insurance Scheme is hosting various Community Forums around New South Wales in April 2014. The Forums are intended to provide detailed information about the NDIS, how to become involved with the Scheme and provide an opportunity to meet members of the local NDIS team and ask questions. We assume that Forums will be held in other states and territories in the coming months – to see if one is near you soon, please visit the NDIS Events page.  

Venue: Belmont 16’ Sailing Club, The Parade, Belmont 
Date: Tuesday 1st April 2014
Times: 10am – 12pm

Venue: East Maitland Bowling Club, Cnr New England and Banks St, East Maitland
Date: Wednesday 2nd April 2014
Times: 2– 4pm and 5:30– 7:30pm

Venue: Newcastle Jockey Club, Darling St, Broadmeadow
Date: Thursday 3rd April 2014
Times: 10am – 12pm (A Provider Forum will also be held at this location between 1 – 3pm this same day)

To see if you are able to access assistance from the National Disability Insurance Scheme, use the My Access Checker available on the NDIS website. 

2014 Network of Alcohol and other Drug Agencies (NADA) Conference – Sydney
DATE: 12th - 13th May 2014
DETAILS: The 2014 NADA Conference: Diversity Driving Innovation in the non-government drug and alcohol sector will focus on service responses to people with problematic substance use and complex health and social needs. Hear from experts in the field, as well as the practice wisdom of other service providers. The concurrent sessions will be interactive with opportunities for conference participants to actively work with issues/topics being presented and networking with a diverse range of stakeholders and professionals from organisations providing these services to people with problematic substance use. For more information and registration, click here.  

National Indigenous Drug and Alcohol Conference – Melbourne
DATE: 4th – 6th June 2014
DETAILS: The National Indigenous Drug and Alcohol Committee (NIDAC) anticipates this event will be the largest gathering of indigenous people working in the drug, alcohol and related fields, to take place in Australia. The conference aims to bring indigenous and non-indigenous workers and stakeholders together from across Australia to celebrate the great work that is being done to address harmful indigenous alcohol and drug use. It will also see a number of Australia's most prominent leaders in the field presenting workshops over the two and a half days. For more information and registration, click here

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International News and Media
Dr Sterling Clarren Announces Retirement
After almost 40 years in the field of Fetal Alcohol Spectrum Disorder (FASD), Dr. Sterling Clarren will be retiring in April 2014.  As one of the very first clinicians to recognise that alcohol exposure during pregnancy caused neurological damage, Dr. Clarren was an instrumental force in developing the field of FASD from its' infancy and has been a world leader in research on this issue.  He has dedicated his life to understanding the complexities of FASD and advancing the science, using that evidence to improve diagnosis, develop interventions, increase awareness and change outcomes for those living with this disability.  Read more... 
NOFASD Australia thanks Dr. Clarren for his dedication to this field, and wishes him all the best in his retirement.

An End to Alphabet Soup: FASD and Changes in the DSM5 (USA)
Published on March 3, 2014 by Ira J. Chasnoff, M.D. in Aristotle's Child
Individuals affected by exposure to alcohol have a diagnostic code in the DSM 5.  Read more... 

FASD program big success at Dryden school (USA)
Children with Fetal Alcohol Spectrum Disorder have been given a rare opportunity at Open Roads School in Dryden. The school is home to a ground-breaking FASD program that began this school year. Teacher Chona Dufresne talked about how her classroom differs from the rest of the classrooms at Open Roads.  Read more...

Alcohol Near Start of Pregnancy Linked to Premature Babies (UK)
Women who drink before they conceive or during the first three months of pregnancy might be at increased risk of having a premature or small baby, new research finds.  Read more...

One in Four Miscarriages could be prevented, according to new research (UK)
Experts have found that being underweight or obese before conception, working nights, drinking alcohol during pregnancy and lifting heavy loads could all increase the risk of losing an unborn child.  They added if women cut these risks, 25 per cent of miscarriages could be avoided.  Read more... 

Ad campaign targets alcohol and pregnancy (USA)
The Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) has recently launched a new  campaigns to raise awareness about the importance of refraining from alcohol during pregnancy.  The ad features pictures of women of all ages, sizes and cultures with pregnant bellies protruding through the “O’s” in the words Love, Hope and Joy.  Watch the ad

Our View: Break silence about FASD, make awareness universal (USA)
Deb Evensen of Homer has worked in education about Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorders (FASD) for 30 years.  She’s still working for a wider awareness of those cruel afflictions, which are 100 percent preventable – but when not prevented, last for life.  She has tremendous hope, both for better care and prevention.  Read more... 

A diagnosis can change the life of a child with FASD (USA)
Most children and especially most adults with fetal alcohol syndrome disorder will never be diagnosed.  “Probably 1 percent of individuals who are walking around the state of Alaska right now who have this disability, 1 percent are getting a diagnosis and the other 99 percent are not,” said Marilyn Pierce-Bulger, a nurse practitioner and member of the diagnostic team for Anchorage-based Assets Inc.   Read more...

Alaska Senate passes sweeping crime bill (USA)
With a possibility of building an expensive prison within three years staring them in the face, the Alaska Senate unanimously passed a sweeping crime bill Friday [March 14] hoping to stem Alaska’s rising inmate population.  The bill directs the Alaska State Department of Corrections not only to do assessments on incoming prisoners, but to specifically look for those suffering from fetal alcohol syndrome.  Read more...  

Pregnant women’s rights under attack?  Legislation, conference address concerns (USA)
A routine prenatal checkup for a Wisconsin mother-to-be that led to an arrest and involuntary 78-day stay at a treatment center is pushing the state into the national spotlight for the first federal test of its fetal protection law.  Read more...

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NOFASD Australia is supported by funding from the Australian Government under the Health System Capacity Development Fund.

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