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||Issue #9, May 2014
Dear Members & Supporters,
This month in "The
This month, NOFASD Australia attended the National Family Week event at the Devonport Playhouse [Tasmania] on May 16th. The theme for NFW 2014 was ‘Stronger Families, Stronger Communities’. This year's theme highlights the important role families play as the central building block of our communities, and that community wellbeing is enhanced by family wellbeing. Our national educator, Adelle Rist, has a fun time hanging out with the families in attendance - it was a great opportunity to talk FASD to parents/grandparents/carers, health services and community.
We also bring to you, in the Special Interest section of this newsletter, information about the Disability Support Pension and how it has been affected by the release of the latest Federal Budget. We encourage you to share your thoughts and/or concerns about how these changes might affect you and/or your family - you can contact us on Facebook or email Terri at firstname.lastname@example.org
- your anonymity will be respected.
NOFASD Australia is consistently surprised and overwhelmed at the amount of news that is released surrounding FASDs every month from all corners of the globe, yet FASDs remain constantly ignored or not considered a major concern. The number of women continuing to drink in pregnancy, despite the warnings and research supporting the benefits of an alcohol-free pregnancy, is of epidemic proportions. While research is important, resources and support for women and girls of the dangers is paramount to reducing the number of children affected by FASDs.
A reminder that NOFASD Australia is on Facebook and Twitter [@NOFASDAustralia], so feel free to follow us there, where we regularly post resources and ‘food for thought’. We also encourage you to share the NOFASD Community newsletter with your family and friends.
Until next time,
Social Media & Administration Officer
Of Special Interest
The Federal Budget was released on the 13th May 2014. Amongst many cuts and changes were alterations to the Disability Support Pension.
From the 1st July 2014, Disability Support Pension recipients under the age of 35 with an assessed work capacity of eight or more hours a week will be required to participate in activities that will help them find and keep a job.
Eligible DSP recipients will be required to have a participation plan which includes compulsory activities with a focus on employment.
Do you have concerns about how the 2014 Federal Budget will affect you and/or your family? Share your voice with us – email email@example.com [anonymity respected] or post on our Facebook page.
Articles regarding the Disability Support Pension cuts:
Budget 2014: People on disability support pension to have ability to work reassessed
Thousands of Australians on the DSP will have their ability to work reassessed under welfare change to be introduced in the budget. The Treasurer’s office has confirmed thousands of people under the age of 35 will be assessed by independent doctors appointed by the Government. Social Services Minister Kevin Andrews told the ABC on Friday that many on the disability support pension have the capacity to work, but there is little incentive. The Federal Opposition has criticised the decision to reassess young disability pensioners, with Labor’s health spokeswoman, Catherine King, saying the changes will make life difficult for young people with a disability. Read more…
Disability Advocacy Network Australia (DANA) Media Release – 14 May 2014
Disability advocates have grave fears that the human rights of Australians with disabilities will be in a much weaker position after this Budget. Read more…
|From My Desk
Well... it has been 9 weeks since I started in my role as National Educator, and in this short time I have become a wild, crazed FASDs evangelist! (A person who attempts to build a critical mass of support).
From the plastered billboards in our cities to the local footy club beer stands, alcohol is part of Australian life. But sometimes the good times come at a cost. When we hurt ourselves or the people we love, alcohol is usually involved. Building community understanding and knowledge of FASDs through education is vital for prevention. At the beginning of an information/education session I ask and encourage the participants if they will join me in the “pay it forward” FASD revolution, this requires them to initiate a “Did You Know?” FASD conversation with a work colleague, partner, family member or friend. It is a fabulous opportunity for us to all join together to spread the FASD message! The education sessions I have facilitated to health professionals and parents/carers have been very well received with a number of participants indicating FASD is NEW news to them, and they now have very real and grave concerns for their communities. In discussion with participants some said they will start using the information/knowledge to educate and inform others.
NOFASD has recently had the opportunity to participate in National Youth Week and National Families Week; I facilitated a Health Promotion eye-catching visual display at each of these events hoping to lure people to our display for a FASD conversation! (Check out our Facebook page for the images). I am pleased to advise my plan worked and provided us with great exposure to a large volume of people within the youth and general community.
In my journey as National Educator I plan to continue to learn and grow my knowledge of FASDs, I will educate our communities about FASD and support those people (children, adolescents and adults) living with FASD, as knowledge and understanding can help us all work together.
National & NZ News
Equality, Capacity and Disability in Commonwealth Laws
A discussion paper called Equality, Capacity and Disability in Commonwealth Laws (DP 81) was released on 22 May 2014. This is the second consultation document in the Australian Law Reform Commission’s Inquiry into Commonwealth laws and legal frameworks that deny or diminish the equal recognition of people with disability before the law, and their ability to exercise legal capacity. Read more...
$4 Million for New Unit to Help Mums Beat Addiction
The Victorian Coalition Government will invest $4 million in the 2014-15 Victorian State Budget to build a new 4-bed residential unit to help new mother beat drug or alcohol addiction. Minister for Mental Health Mary Wooldridge said the facility was the first of its kind to be built in Victoria, ensuring that women and children have a safe and supported residential environment for withdrawal. Read more...
New alcohol rehab to be built in Katherine
The Northern Territory’s newest multi-million dollar Alcohol Mandatory Treatment facility will be built in Katherine’s Chardon Street, as part of the NT Government’s plan to tackle alcohol abuse across the NT. “Having an Alcohol Mandatory Treatment facility in the town means people can access the treatment they need to get off the grog, while remaining close to their family and cultural ties, which is very important in the rehabilitation process,” says Willem Westra van Holthe, member for Katherine. Read more…
Alcohol, drug rehab service to open in Murray Bridge
An Aboriginal alcohol and drug rehabilitation treatment service is to open in Murray Bridge in the coming months. The program will include a support service centre on Third Street and drug and alcohol-free residential accommodation facilities. Read more...
Dementia in Aboriginal and Torres Strait Islander people
The results of a prevalence study of dementia in the Indigenous population of the Northern Territory over 45 years of age show that they experience dementia at a much higher rate compared with other Australians. There are another number of factors across the life span of Aboriginal and Torres Strait Islander people that are likely to affect this disturbing trend. With higher rates of problematic alcohol misuse generally being reported in Indigenous Australians, the role of such alcohol misuse in the increasing prevalence of dementia is of particular concern. The contribution of fetal alcohol syndrome as a cause of intellectual disability is also being increasingly recognised in WA and the NT. Read more...
‘3000 babies affected' by mothers’ drinking
Children with fetal alcohol syndrome are being all too commonly misdiagnosed, leading to health complications and wasted resources. Leading paediatrician Zoe McLaren spoke about the lack of specialists at the Royal Australasian College of Physicians (RACP) congress held in Auckland on the 19th May, stating that because of New Zealand’s high drinking rates, high rates of unplanned pregnancy and rates of drinking during pregnancy, FASD was a major concern but little in the way of resources had been invested in the training of specialists and awareness-raising. Read more...
Save the Date – University of Auckland symposium
Save the date for an FASD symposium on Friday 5th September 2014, hosted by the University of Auckland. Invitation and registration form will follow shortly.
Foetal Alcohol Spectrum Disorder meeting in Darwin
Doctors and health workers have been meeting in Darwin today to discuss the complex issue of Foetal Alcohol Spectrum Disorder.The condition is more prevalent in Territory indigenous communities, but health professionals say better resources and information could lower the number of children born with the disease. View video clip...
Women Want To Know
The Foundation for Alcohol Research and Education (FARE) is launching a new campaign that encourages health professionals to talk about alcohol with women who are pregnant or planning pregnancy. The Women Want To Know campaign will include a range of resources for health professionals and brochures for women that lay out the facts about alcohol and pregnancy. The campaign will be launched by Assistant Minister for Health, Senator the Hon Fiona Nash at the Royal Prince Alfred Hospital, Sydney on Tuesday 1st July. Read more...
The Perfect Love Story – Healing the Scars of FASD with our Love
An intensely personal story written by Claire Gyde to provide insight into family life when FASD is part of the journey. Designed as a quick read, the author acknowledges that many of the issues they have personally experienced are not unique in the adolescent world of FASD, and many other parents and caregivers will instantly identify with much of what has been written. A story based in New Zealand. Available for purchase from FASD-CAN NZ for $12.00. Read more...
Treatment Improvement Protocol (TIP) #58 – Addressing Fetal Alcohol Spectrum Disorders
Treatment Improvement Protocol (TIP) #58, Addressing Fetal Alcohol Spectrum Disorders (FASD), is now available for download from the SAMHSA Store. The first TIP to deal directly with the topic of FASD, TIP 58 provides best-practice guidelines for preventing and addressing FASD in behavioural health settings. Read more...
Starting a Conversation: Bringing together what we know about sexual and reproductive health issues for women with FASD
Slides from a presentation by Yvonne Inguz, RM RN BA MPH from Flinders University and Deborah Rutman, Ph.D. School of Social Work, University of Victoria and Nota Bene Consulting Group, presented at the 6th National Conference on Adolescents and Adults with FASD, held in Canada in April 2014. Read more...
Weighted Lap Bags Now Available from The Coffee Apple
'The Coffee Apple' is an online store stocking local suppliers’ handmade and unique toys and gifts. New to their store this month are weighted lap bags from supplier, Sensory Matters.
Weighted lap bags are used in many home, clinical, school and work environments for those living with, but not limited to, Sensory Processing Disorder, Autism, ADHD, ADD, Anxiety, FASD and Restless Leg Syndrome. They are helpful for the child who is unable to sit still in their chair, constantly fidgeting/squirming as they are seated, easily distracted, unable to focus on the task they have been set, or to sit quietly and listen to the subject being discussed. Read more...
6th National Conference on Adolescents and Adults with FASD – Papers now available
Presentations from the National Conference on Adolescents and Adults with FASD held in April in Vancouver are now available to download. Read more...
Social Studies of Addiction Concepts Research Program
Find out about the activities of Curtin University’s Social Studies of Addiction Concepts Research Program. Contains new posts on SSAC’s June Research engagement forum, SSAC’s forthcoming research colloquium on addiction to be held at Vancouver’s Interdisciplinary Social Science conference, and SSAC in the media. Read more...
Guidelines for identification and management of substance use and substance use disorders in pregnancy
These new guidelines from the World Health Organisation contain recommendations on the identification and management of substance use and substance use disorders for health care services which assist women who are pregnant, or have recently had a child, and who use alcohol or drugs or who have a substance use disorder. They have been developed in response to requests from organizations, institutions and individuals for technical guidance on the identification and management of alcohol and other substance use and substance use disorders in pregnant women, with the target of healthy outcomes for both pregnant and their fetus or infant. Read more...
Great Alcohol & Pregnancy Fact sheet from Organisation of Teratology Information Specialists
This sheet talks about the risks that exposure to alcohol can have during pregnancy. With each pregnancy, all women have a 3% to 5% chance of having a baby with a birth defect. This information should not take the place of medical care and advice from your health care provider. Read more...
International News and
EUFASD Alliance says drinking pregnant women should be helped, not punished.
Epigenetics in Fetal Alcohol Disorders: IPA Finds the Signal in the Noise
At Western University, scientist Ben Laufer is making strides in demonstrating the rampant genome-wide changes related to fetal alcohol syndrome and related disorders, a group of diseases that have been difficult to study due to heterogeneity in exposure and subsequent symptoms. By using QIAGEN’s Ingenuity Pathway Analysis (IPA), he has proven that widespread epigenetic changes once written off as biological noise are in fact effects of alcohol exposure during fetal development. Read more...
New project launched to prevent Fetal Alcohol Syndrome (South Africa)
The Foundation for Alcohol Related Research (FARR) has officially launched a new three year project in Wolseley, the Western Cape, in order to drive Fetal Alcohol Syndrome Disorder (FASD) awareness and run prevention programmes such as the Health Mother Healthy Baby © (HMHB) Programme. Read more...
Breaking Bad Habits During Spring Break: Why Alcohol And Pregnancy Continues To Be A Problem
Spring break 2014, which, for some, actually fell at the end of winter this year, is in full swing. Many students are back to school. For some students, Spring break means it’s time to let loose on a warm beach, usually with one (or many) alcoholic beverages. In the case of a young woman who went on holiday to the Caribbean after particularly stressful semester at college, she returned to school and, missing her period, called the MotherToBaby service. She was frantic after recalling the amount of alcohol she had consumed during her seven days in the sun. Read more...
“Everything in moderation” does not apply to drinking alcohol while pregnant (USA)
Despite 40 years of scientific research demonstrating the clear risks of drinking during pregnancy, many women and their doctors are still not convinced that there is no safe level of alcohol during pregnancy. Alcohol is a teratogen that causes birth defects much like another well-known teratogen, thalidomide, albeit at lower rates. Alcohol causes miscarriage, physical deformities, cardiac anomalies, microcephaly, and brain damage. Read more...
Alcohol & Me: ‘It’s a human tragedy’ (USA) [Video]
As a state senator 25 years ago, John Binkley filed several bills to combat fetal alcohol syndrome in Alaska. His effort had a lasting impact in many ways. Now, teachers must undergo training on the disorders and every alcohol-serving establishment must post a warning to pregnant women. Read more...
‘I know I made a difference’: A report from the frontlines of Alaska’s battle with FASD (USA)
The Daily News will publish the next two installments of our ongoing fetal alcohol syndrome coverage on Saturday and Sunday, including a look at how, despite success in reducing rates across Alaska, the state has missed many opportunities to combat the disability. Read more...
B.C. boosts help for autistic adults (Canada)
Staff training, more job opportunities and improved access to housing and health care head a list of planned improvements to a B.C. government program that supports adults with autism and fetal alcohol spectrum disorders. Read more...
The Hatch Family – Can one mom’s devotion to her kids overcome lifelong FASD struggles? (USA)
As part of the State of Intoxication series, a Daily News photographer and reporter spent nine months following the Hatch family. Read more...
Addicted and Pregnant: “The Most Heart-Wrenching Experience of my Life” (USA)
A firsthand account from a former drug and alcohol addict, Kari Ann Rinker, from her pregnancy to sobriety and beyond. Read more...
Attention problems may be overreported in children with fetal alcohol syndrome disorder (Canada)
Researchers from McGill University have suggested that there may be an overreporting of attention problems in children with FASD, simply because parents and teachers are using a misplaced basis for comparison. They are testing and comparing children with FASD with children of the same physical or chronological age, rather than with children of the same mental age, which is often quite a lot younger. Read more...
Victorian Order of Nurses selected to operate fetal alcohol spectrum disorder centre of excellence (Canada)
The provincial government selected the Victorian Order of Nurses, a non-governmental organization, to operate the provincial fetal alcohol spectrum disorder centre of excellence after a request for proposals process. “This organization is a solid partner that has been providing excellent health and social services for more than 100 years in our province and will ensure efficient and cost-effective service delivery to patients,” said Health Minister Hugh Flemming. Read more...
Parents of children with fetal alcohol syndrome find lack of resources in out-state Minnesota (USA)
First of a two-part series on fetal alcohol spectrum disorder, its cost of the state and how state funding impacts access to community-based healthcare services.
Renee Feist’s adopted daughter, Claire, was having trouble in school and at home, needing constant supervision. Claire would either explode or shut down, reacting to nearly any given situation with extreme emotion, constantly overwhelmed by the smallest of things. Claire, now 14, is one of more than 50,000 Minnesotans struggling with FAS and the spectrum of disorders that accompany it. Read more...
Why alcohol marketing targeting women has public health researchers concerned (USA)
“We’ve seen a shift in the culture of women’s drinking and there’s a big marketing piece of that,” said David Jernigan, director of the Centre on Alcohol Marketing and Youth at John Hopkins University. Excessive drinking is much more common among men, but last year the Centres for Disease Control and Prevention made the point that binge drinking among women is an under-recognised problem. Read more...
Tina Bills: The Dangers for Children of Parental Alcohol Use (Canada)
Because alcohol is legal, its use is often overlooked as a serious problem. The sad thing about alcohol is it very rarely affects just the drinker. In too many cases, the negative effects on children – especially those of women who drank during pregnancy – can last a lifetime. Read more...
Complexities in understanding attentional functioning among children with fetal alcohol spectrum disorder
K.A. Lane, J. Stewart, T. Fernandes, N. Russo, J.T. Enns & J.A. Burack, Frontiers in Human Neuroscience, 7 March 2014
Parental reports of attention problems and clinical symptomology of ADHD among children with fetal alcohol syndrome disorder (FASD) were assessed in relation to performance on standardized subtests of attentional control/shifting and selective attention from the Test of Everyday Attention for Children (TEA-Ch; Manly et al. 1998). The reported symptomatology for the majority of the children with FASD were consistent with a diagnosis of ADHD, combined type, and only one child had a score within the average range. These reports are consistent with the finding that the children with FASD demonstrated difficulties with attentional control/shifting, but inconsistent with the finding that they outperformed the TD children on a test assessing selective attention. Read more...
Seizures in fetal alcohol spectrum disorders: Evaluation of clinical, electroencephalographic, and neuroradiologic features in a pediatric case series
F. Nicita, A. Verrotti, D. Pruna, P. Striano, G. Capovilla, S. Savasta, M.V. Sparta, P. Parisi, G. Parlapiano, L. Tarani & A. Spalice, Epilepsia [The Journal of the International League Against Epilepsy], 9 May 2014
Seizures are observed with a frequency of 3-21% in children with fetal alcohol spectrum disorders. However, clinical, neuroradiologic and electroencephalography (EEG) features are poorly described. In this study, 13 patients with FASD and epilepsy or seizures were identified retrospectively from the databases of seven Italian pediatric neurology divisions. Results of this study conclude that EEG and clinical follow-up are recommended in children with FASD and epilepsy, since severe conditions requiring aggressive treatment, such as ESES, may develop. Read more...
Second-hand drinking may increase support for alcohol policies: New results from the 2010 National Alcohol Survey
T. K. Greenfield, K.J. Karriker-Jaffe, N. Giesbrecht, W.C. Kerr, Y. Ye & J. Bond, Drug and Alcohol Review, 24 April 2014
The harms of second-hand smoke motivated tobacco control legislation. Documenting the effects of harms from others’ drinking might increase popular and political will for enacting alcohol policies. We investigated the individual-level relationship between having experienced such harms and favouring alcohol policy measures, adjusting for other influences. Studies that estimate the impact of harms from other drinkers on those victimised are important and now beginning. Next, we need to learn how such information could affect decision makers and legislators. Read more...
Maternal Alcohol Consumption during Pregnancy and the Risk of Orofacial Clefts in Infants: a Systematic Review and Meta-Analysis
J.C. Bell, C. Raynes-Greenow, R.M. Turner, C. Bower, N. Nassar & C.M. O’Leary, Paediatric and Perinatal Epidemiology, 6 May 2014
The terotogenic effects of maternal alcohol consumption during pregnancy include anomalies of craniofacial structures derived from the cranial neural crest cells. The presence of specific craniofacial anomalies contributes to the diagnosis of fetal alcohol spectrum disorders. Cleft lip and palate (orofacial clefts [OFCs]), also derived from the cranial neural crest cells, are common congenital anomalies but their relationship with prenatal alcohol consumption is unknown. While no association between alcohol consumption during pregnancy and OFCs in infants was found, the influence of study design, particularly in relation to alcohol exposure measurement and OFC ascertainment cannot be ignored. Read more...
Drinking before and after pregnancy recognition among South African women: the moderating role of traumatic experiences
K.W. Choi, L.A. Abler, M.H. Watt, L.A. Eaton, S.C. Kalichman, D. Skinner, D. Pieterse & K.J. Sikkema, BMC Pregnancy & Childbirth, 5 March 2014
South Africa has one of the world’s highest rates of fetal alcohol spectrum disorder (FASD) and interpersonal trauma. These co-occurring public health problems raise the need to understand alcohol consumption among trauma-exposed pregnant women in this setting. Since a known predictor of drinking during pregnancy is drinking behaviour before pregnancy, this study explored the relationship between women’s drinking levels before and after pregnancy recognition, and whether traumatic experiences – childhood abuse or recent intimate partner violence (IPV) – moderated this relationship. Results suggest that women with traumatic experiences are more likely to exhibit risky alcohol consumption when they become pregnant, regardless of prior risk. Read more...
Association Analysis of Fetal Alcohol Syndrome and Hypertension Status in Children, Adolescents and Young Adults [Thesis]
J. Cook, ScholarWorks @ Georgia State University, 16 May 2014
The prenatal transference of alcohol that leads to FAS and FASDs might also be contributing to an increased likelihood of hypertension in youth. Additionally, factors such as stress influenced by familial instability, an increased likelihood of developing congenital and conotruncal heart defects, and a reduction in nephron count might be leading to an increased likelihood of hypertension in FAS-affected youth.
The results of this study shows that the univariate relationships between FAS status and hypertension status, as well as medication use and hypertension status, proved to be statistically significant. FAS status significantly predicted hypertension status after accounting for sex, race/ethnicity, medication use, and obesity status. Read more...
Prenatal ethanol exposure differentially affects hippocampal neurogenesis in the adolescent and aged brain.
J. Gil-Mohapel, A.K. Titterness, A.R. Patten, S. Taylor, A. Ratzlaff, T. Ratzlaff, J. Helfer, B.R. Christie, Neuroscience, 15 May 2014 [Epub ahead of print]
Exposure to ethanol in utero is associated with a myriad of sequelae for the offspring. In this study we show that significant deficits in adult hippocampal neurogenesis are apparent in aged animals following prenatal ethanol exposure. Deficits in hippocampal neurogenesis were not apparent in younger animals. Surprisingly, even when ethanol exposure occurred in conjunction with maternal stress, deficits in neurogenesis did not occur, suggesting that the capacity for neurogenesis is highly conserved early in life. These findings are unique in that they demonstrate for the first time that deficits in neurogenesis associated with prenatal ethanol consumption appear later in life. Read more...
Long-term genomic and epigenomic dysregulation as a consequence of prenatal alcohol exposure: a model for fetal alcohol spectrum disorders
M.L. Kleiber, E.J. Diehl, B.I. Laufer, K. Mantha, A.C. Hoque, B. Alberry & S.M. Singh, Frontiers in Genetics, 15 May 2014
This review integrates recent data that has progressed our understanding FASD as a continuum of molecular events, beginning with cellular stress response and ending with a long-term ‘footprint’ of epigenetic dysregulation across the genome. It reports on data from multiple ethanol-treatment paradigms in mouse models that identify changes in gene expression that occur with respect to neurodevelopmental timing of exposure and ethanol dose. Read more...
|Remember to visit our events page on our website for a full listing of upcoming events.
NDIS Community Forums
The National Disability Insurance Scheme is hosting various Community Information Sessions and Forums around New South Wales and South Australia in June 2014. To see if one is near you soon, please visit the NDIS Events page.
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.
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. Keynote speakers include June Oscar, Chief executive of the Marninwarntikura Women's Resource Centre in Fitzroy Crossing, who will discuss: Erasing spaces of blame and shame: Alcohol restrictions and FASD in the Fitzroy Valley, Kimberley . For more information and registration, click here.
FARE – Launch of Women Want to Know Campaign - Sydney
DATE: 1st July 2014
DETAILS: Women Want to Know is a campaign that encourages health professionals to talk about alcohol with women who are pregnant or planning pregnancy. The campaign includes a range of resources for health professionals and brochures for women. Assistant Minister for Health, Senator the Hon Fiona Nash will launch Women Want to Know.
To be held at Kerry Packer Auditorium, Building 89, Level 4, Royal Prince Alfred Hospital, Missenden Rd, Camperdown. Find the flyer here.
Australian Childhood Foundation – Childhood Trauma: Understanding the Basis of Change and Recovery - Melbourne
DATE: 4th – 8th August 2014
DETAILS: In this unique event, the Australian Childhood Foundation has assembled thought leaders in interpersonal neurobiology, trauma and therapy in a conference format that promises to engage, challenge and integrate perspectives about working with children, young people and families. The conference has three separate components, each offering options for participants to follow their own interests and plan a program that is specific to their learning objectives. For more information and to register, click here.
NOFASD Australia is supported by funding from the Australian Government
under the Health System Capacity Development Fund.