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NOFASD Australia

Issue #3, November 2013
Dear Members & Supporters,
Below are our key areas covered to keep you in The Loop,
This month in "The Loop"
Last week it was finally time for the Australasian Fetal Alcohol Spectrum Disorders Conference in Brisbane, Australia. The event saw some great presentations from around the country and across the Tasman and brought together parents and carers, researchers, policy makers, service providers and government representatives. We feature some highlights from the conference in the Of Special Interest section below.

We were particularly pleased with the level of interest in both the pre-conference event jointly hosted by NOFASD Australia, RFFADA and Alcohol HealthWatch NZ, and the lunch time event convened during the conference to bring together parents and carers of children and adults living with FASD.

We would like to sincerely thank all those involved for sharing so graciously and contributing towards the development of a Call to Action about the concerns and urgent needs of individuals and families living with FASD. We will share the final draft of the Call to Action in the December newsletter and look forward to updating you on progress as we take the Call to Action to governments, decision makers, the media, schools, health professionals and whoever else we can get to listen. We cannot underestimate the power of storytelling and your experiences play a key role in advocating for action on FASD in Australia and New Zealand.

If you haven’t already, please check out our Facebook page and share the link with your family and friends. Please also encourage your networks to subscribe to the NOFASD Australia Community so that they can receive this newsletter and other important updates.

Until next time,

Leila Picken
National Policy Officer

 

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Of Special Interest
Australasian Fetal Alcohol Spectrum Disorders Conference

The Australasian Fetal Alcohol Spectrum Disorders Conference was held in Brisbane from 19 to 20 November 2013.

A number of great presentations were given over the two days, giving delegates an insight into a range of issues, including FASD prevention, diagnosis, surveillance and research, impact on the criminal justice system, community-led action, FASD in refugee populations and much more.

The plenary session on day one, ‘Time to learn: The Australasian experience so far’, saw presentations from Professor Elizabeth Elliott and Judge Tony Fitzgerald from the Auckland District Court and Youth Court. We invite you to read a New Zealand news article that followed Judge Fitzgerald’s presentation, ‘System failing offenders with alcohol-related brain disability – judge’.

Moving keynote addresses were given on day two of the conference under the theme ‘Time to act: The people’s experiences’. NOFASD Australia Chair and founding member, Ms Sue Miers, gave a powerful presentation on both her personal experience and the growth of NOFASARD to the organisation that we now know as NOFASD Australia, tirelessly advocating for the rights of individuals and families living with FASD. Sue also presented a Call to Action developed by parents and carers at the preconference event held on 18 November 2013.

June Oscar presented on the experience of addressing the issue of FASD in the Fitzroy Valley with a whole of community approach. This presentation was strongly supported by a presentation by Mick Gooda, the current Aboriginal and Torres Strait Islander Social Justice Commissioner, who talked about the Aboriginal and Torres Strait Islander experience more broadly, including the threat of FASD to the preservation of Indigenous culture and knowledge.   

NOFASD Australia hopes that this event highlights the importance of knowledge sharing on the issue of FASD in Australia and that many more conferences and events will be held in the future. The ability to share our knowledge and experiences is crucial to improving community awareness, support for families, and ensuring professional development for service providers.

The Calls to Action resulting from the conference and the pre-conference event for parents and carers are currently in the final stages of drafting and will be featured in the December issue of The Loop.

Watch the opening address given by Senator The Hon Fiona Nash, Assistant Minister for Health.

For coverage of some of the main themes throughout the conference view the following articles from the Crikey health blog, Croakey:

To improve children’s lives, Australia must act on alcohol marketing, pricing and availability 

Petition launched to recognise Fetal Alcohol Spectrum Disorders as a disability
 
Conference spotlights the political and policy challenges involved in tackling Fetal Alcohol Spectrum Disorders
 
“The alcohol industry carries a heavy burden of responsibility for FASD” – and other conference news
 
Finally, some important research findings were released at the conference, including:

The impact of FASD on the Northern Territory child protection system, presented by Prue Walker.

University of Newcastle research reported that eight out of ten pregnant women drink, a figure much higher than previously reported.

 

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National News and Media
Pregnant women getting wrong message about alcohol

This ABC radio broadcast features Professor Elizabeth Elliott speaking to Tony Eastley during the recent Australasian FASD conference. Listen to broadcast


Gold Coast Team Heads to Canada for FASD Training

Two teams of health professionals led by Dr Doug Shelton have received FASD training in North America. NOFASD Australia hopes that this will lead to improvements in diagnosis and management of FASD in Australia. Read more


Australian Justice Reinvestment Project

The AJR Project is an Australian Research Council funded Discovery project that is being run by the University of New South Wales in 2013 and 2014. The research undertaken by the AJR Project will examine the characteristics of Justice Reinvestment programs used in other countries which reduce spending on prisons and reinvest the savings in high crime communities to reduce crime and build community services. It will analyse whether such programs can be developed in the Australian context.

Read the latest AJR newsletter
 

For NOFASD Australia’s position on justice reinvestment in reducing rates of crime in the FASD population please read our submission to the recent parliamentary inquiry on justice reinvestment.

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International News and Media
Fetal Alcohol Syndrome and Educational Strategies

Emory University School of Medicine Department of Psychiatry and Behavioural Science has produced a useful web page on strategies to support children with FAS in the education environment. The information covers giving instructions and assignments, arranging the environment for the student, transition planning, helping the student retrieve and retain information, and helping the child with problems of sequencing. Read more


FASD in America (Part 4) – Educating Students with FASD

In a four-part series, Helen Ramaglia looks at FASD in America. In this article she explores useful strategies for improving the education of students with FASD. Other series segments include FASD in the criminal justice system, the financial impact of FASD, and FASD – A Silent Crisis. Read more

Lego helps children with mental disabilities improve social skills

This article explains the usefulness of lego therapy in improving social skills in children with neurobehavioural disorders, including FASD. Lego therapy was developed fifteen years ago and naturally reinforces social behaviour by encouraging cooperation, working with others in order to build something, and interaction in a socially appropriate way. Read more


Pregnancy Test Kits Plan for Pubs in Scotland

The Scottish Government has launched a two-pronged approach to tackle growing concern about FASD. An information pack has been circulated to all Scottish health boards urging them to spread the message that women should stop drinking alcohol when pregnant. Also, as previously featured in this newsletter, a training programme has been created to help NHS staff spot symptoms of FASD amid concern many children suffer it but remain undiagnosed. The Scottish Government is now also considering implementing the Canadian scheme of putting pregnancy test kits in pubs. Read more 

 

FASD Informed Practice for Community Based Programs

FASD Informed Practice for Community Based Programs developed as a result of recommendations from an FASD consultation meeting in 2012 where Canada Prenatal Nutrition Program (CPNP), Community Action Program for Children (CAPC) and Alberta Health Services (AHS) frontline workers and coordinators recognized the need for practical information and steps to support FASD informed practice. This article from the ‘Keeping in Touch’ e-newsletter based in British Columbia, Canada, may be of particular interest to service providers in Australia. Read more


Improving Awareness and Treatment of Children With Fetal Alcohol Spectrum Disorders and Co-Occurring Psychiatric Disorders

Prepared by The Disability Service Center, JBS International, Inc, this paper aims to increase understanding of the connection between FASD and serious emotional disturbances. This paper highlights both the lack of studies on this issue and the pressing need for specialized interventions that can help address the challenges faced by children with psychiatric disorders within the FASD population. Read more


Yukon MP plans private member bill on FASD

Canadian MP, Ryan Leef, from the Yukon, is drafting a private members bill with the aim of opening up discussion about “how to acknowledge the challenges and unique needs and the broad range of clients with FASD and how that interplays with the justice system.” Read more

 

Saskatoon courtroom dedicated to mental health issues: Docket deals with psychiatric and cognitive disorders in organized, efficient way

A new courtroom in Saskatoon, Canada, is now dedicated to dealing with offenders who have mental health issues and cognitive disorders, including FASD. Read more


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Latest Research
Special Issue of International Journal of Alcohol and Drug Research (IJADR)

The IJADR has recently published the first of two special issues on FASD, edited by Svetlana Popova and Christina Chambers. Topics include prevention, employment outcomes for adults with FASD, screening in treatment programs, service delivery and neuropsychological assessment. Access the Journal

 

Bound by the clock: The experiences of youth with FASD transitioning to adulthood from child welfare care

L Burnside and D Fuchs, First Peoples Child and Family Review, Vol. 8, No. 1, 2013.

This qualitative study focuses on the lived experiences of 20 youth with FASD in Manitoba, Canada, as they prepared for the transition from child welfare care to adulthood or whom had recently left the system. The experiences and insights of these youth highlight the supports and services required by youth with FASD transitioning out of care. Read more
 

What Research Is Being Done on Prenatal Alcohol Exposure and Fetal Alcohol Spectrum Disorders in the Russian Research Community?
S Popova, A Yaltonskaya, V Yaltonsky, Y Kolpakov, I Abrosimov, K Pervakov, V Tanner, J Rehm, Alcohol and Alcoholism (2013), doi: 10.1093/alcalc/agt156, first published online: October 23, 2013.

Although Russia has one of the highest rates of alcohol consumption and alcohol-attributable burden of disease, little is known about the existing research on FASD. The research team located and reviewed published and unpublished studies on FASD in Russia and found a small pool of research exists. Epidemiological data indicates a high prevalence of prenatal alcohol exposure and FASD. The research concluded that more research focused on alcohol prevention and policy is needed in order to reduce alcohol-related harm in Russia, especially in the field of FASD. Read more


Fetal alcohol spectrum disorder diagnosis and intervention: An investigation of professional practice in New Zealand
K Bagley. (2013). (Thesis, Doctor of Philosophy). University of Otago.

This research involves over thirty in-depth semi-structured interviews with health, allied health and social service professionals in New Zealand. Bagley finds that professionals do come into contact with cases of prenatal alcohol exposure, and that many have developed innovative strategies for assisting individuals with confirmed or suspected FASD. However, professionals face numerous systemic and social barriers to properly addressing the issue of FASD in their work and achieving best practice in this area. Read more


It’s time to have the conversation: Understanding the treatment needs of women who are pregnant and alcohol dependent
L Burns and C Breen, National Drug and Alcohol Research Centre, University of New South Wales, report submitted to the Foundation for Alcohol Research and Education.  

This research used a literature review and interviews with key stakeholders to investigate treatments available to pregnant women who have alcohol use disorders and areas requiring improvement. The authors found that there is limited research on effective treatments available for pregnant women with alcohol use disorders and that there has been little progress over the last decade in the treatment and recruitment into treatment of alcohol dependent pregnant women. The research concludes that treatments need to be supportive, multidisciplinary and accommodate the woman and her children. A gold standard approach to treatment should incorporate community education about the chronic and relapsing nature of addiction. Read research summary and download full report 
 

Epigenetics – A New Frontier for Alcohol Research
Alcohol Alert, Number 86, National Institute on Alcohol Abuse and Alcoholism

This Alert describes how alcohol influences epigenetics and how those influences may be associated with illness and disorders, including fetal alcohol spectrum disorders (FASD), cancer, liver disease and other gastrointestinal disorders, brain development, the body’s internal clock, and immune function. It also explores therapies that might be developed to target the changes occurring through epigenetics. Read more   

 

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Upcoming Events
For a full listing of upcoming events please visit our events page on our website. 

National Disability Insurance Scheme Webinar – ‘Breaking Down Barriers’: 10 December 2013, 12.00pm – 1.00pm (AEDT)

The National Disability Insurance Scheme invites people with disability, carers, advocates, support providers and community members to join a webinar about breaking down barriers. Following the International Day of People with Disability celebrations and Breaking Down Barriers to Open Doors theme, three dynamic representatives of the disability community will join together in an inspiring discussion on breaking down barriers, pushing boundaries and forging inclusion through innovation. For more information, to register your attendance, or to submit a question call 1800 800 110 or email engagement@ndis.gov.au. View invitation  

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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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1300 306 238
enquiries@nofasd.org.au

Head Office
PO Box 206, Normanville , SA 5204

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