The Loop - e-news
National Organisation for Fetal Alcohol Spectrum Disorders Australia.
[ Issue #22, June 2015 ]
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Dear Members & Supporters,
This month in “The Loop”

FASD has continued to appear in the New Zealand media this month, following the case of Teina Pora and his convictions being investigated and quashed by the International Privy Council.  We can only hope that the media continues to pay attention to FASD and the everyday challenges those living with FASD face.

 

International FASD Awareness Day is just around the corner, and like every year, the Frontier Regional FASD Training Center has released their fantastic packet full of useful materials for hosting your own event or simply raising FASD awareness.  Find the link to the packet in our "Of Special Interest" section of this newsletter.

 

Some great resources and research coming from all corners of the globe have also been published recently; I invite you to explore and encourage you to share with your family, friends and colleagues through Facebook, Twitter, and of course through joining our community.

 

Until next time,

 

Terri Baran
Social Media & Administration Assistant 


NOFASD Australia does not necessarily agree with the articles below. They are provided for interest purposes only.

 
From My Desk...
A three-year contract with the Commonwealth Department of Health has enabled NOFASD Australia to provide support and deliver a range of services over the past 3 years. This contract concluded on the 30th June; however, a 6 month extension has been granted for a continuation of services at least until December 31, 2015. As can be appreciated, there is uncertainty of NOFASD Australia in 2016 and beyond, and to date multiple attempts to secure a meeting with the Federal Minister for Health to discuss the future implication of a government decision on funding has not been achieved. For those who might consider writing a supportive letter, please forward your thoughts by email to admin@nofasd.org.au or by post to PO Box 448, Wynyard, Tasmania 7325.

In the past three years, 130 plus education and training workshops to 7,700 participants were delivered by NOFASD Australia in communities across Australia. NOFASD Australia attended 180 meetings with an estimated 640 community members also present. Building service provider knowledge, understanding of the impact of FASD for individuals and families has increased the capacity of organisations to better meet the needs of those living with FASD. The flow on effect of education, training and consultancy is estimated to have improved support to more than 14,000 families. Advocacy and support has been offered to approximately 480 families via the 1300 number and the online inquiry service. Over 90% of those who responded to the recent NOFASD Australia Annual Review reported an excellent or good response in their contact with NOFASD and found the information they were seeking on the NOFASD Australia website valuable. The number of 'hits' recorded on the website totalled 77,105 (recording began in September 2013 when the new website was launched) and an independent review by the Australian Drug Information Network in 2014 awarded the website with a 5-star rating. We have Facebook, Twitter and a Blog accessible through our website. In the 3 years, 27 e-newsletters have been published and circulation suggests newsletters reach over 164,000 readers. Over 12,000 NOFASD Australia-specific print resources have been circulated and this total does not include what may be downloaded from the NOFASD Australia website.

In June NOFASD Australia delivered a combined total of 11 education and training workshops to 224 participants. We travelled to Wagga Wagga to present separate workshops to teachers, parents and service providers and to Telopea, Maitland, Coffs Harbour, Alstonville and Grafton in NSW for single workshop sessions. Two workshops were presented in Alice Springs and 2 sessions (via teleconference) were offered to the remote township of Marree in SA.
NOFASD Australia is increasing support for community-led initiatives to prevent FASD and support those living with the problem recognising that change will happen 'at a grassroots level' where local knowledge can contribute to a national directory of professional and allied health and other services across the nation. Community development is complimented by 20 active national partnerships all working at prevention across the three levels of raising community awareness, targeted prevention for those at increased risk of alcohol use in pregnancy and early intervention for those recognised at risk for fetal alcohol exposure.

A report from the Australian Institute of Health and Welfare (AIHW) "estimated 321,531 people (average age 34 years) used disability support services under the National Disability Agreement—a 9% increase since 2009–10, and a 3% increase since 2012–13." According to the report, 55% had an intellectual or learning disability and community support services include therapy support, early childhood intervention, behavioural or specialist interventions, and counselling. For the full publication of the range of support services provided under the National Disability Agreement, click here. These kinds of figures lead to reflection on the future numbers of individuals who might be included with increased capacity for FASD diagnosis. In respect to the National Disability Insurance Scheme, many parents are expressing concern about accessibility. Whilst a diagnosis of FAS is clearer, the level of uncertainty concerns diagnosis and assessment in the absence of physical indicators of FAS, that is, the neurodevelopmental conditions within the fetal alcohol spectrum. Work on this issue is in progress and it seems an assessment determining impairment in at least three brain areas with confirmed maternal alcohol use will be required. Developing submission documents in support of consideration of the complete spectrum is being led by Telethon Institute for Kids and is progressing.

Vicki Russell
CEO
Of Special Interest
September 9 is International Fetal Alcohol Spectrum Disorders (FASD) Awareness Day. This day was chosen so that on the ninth day of the ninth month of each year, the world will remember that during the nine months of pregnancy, a woman should abstain from alcohol. The first awareness day was celebrated on 9/9/1999.
Every year, Frontier Regional FASD Training Center produce a packet of materials to help others plan their FASD Awareness Day activities.
National News and Media
In 2013–14, an estimated 321,531 people used disability support services under the National Disability Agreement—a 9% increase since 2009–10, and a 3% increase since 2012–13, according to a report released today by the Australian Institute of Health and Welfare (AIHW).
The report, Disability support services: services provided under the National Disability Agreement 2013–14, shows that about three-quarters of service users receiving services under the National Disability Agreement (NDA) in 2013–14 were younger than 50, with an average age of 34. More than one-half (55%) of service users had an intellectual or learning disability (44% as their primary disability).

Fetal alcohol spectrum disorder kids 19 times more likely to cause trouble [NZ]
Youth with fetal alcohol spectrum disorder are 19 times more likely to get into trouble with the law than other people, a district health board says. And among those in foster care, the prevalence of the disorder ... is 10 times the rate in the general population, the Northland DHB says, following a forum on the links between the disorder and the justice system. 

Up to 3,000 children are born every year with Foetal Alcohol Spectrum Disorder. Health and community workers across Northland are concerned at the growing number of young people who are being diagnosed with Fetal Alcohol Spectrum Disorder (FASD). At a forum on 'FASD and Justice' held in Whangarei ... concerns were raised about the suspected number of children that may be affected by their mothers drinking during pregnancy in the region. 
Resources
Public keynote address by Dr.Gabor Maté, opening event for the Regional FASD Conference "Hope in Action - A Caring Community", held in Smithers, B.C., February 7-9 2012.

Here, broken up into two parts, is a terrific infographic detailing the essence of what we know about neuroplasticity and how it works. It was created by the folks at Alta Mira, a San Francisco-area rehabilitation and recovery center.  

The harms experienced by people who misuse alcohol and other drugs (AOD) are well documented however those around them can also be affected. This fact sheet looks specifically at the harms that children may experience when a parent is affected by AOD dependence. It also provides advice for workers and organisations to strengthen their family sensitive practice. 

An array of useful information and resources for parents and parents-to-be, medical professionals, teachers and siblings. 

A resource for teachers. The development of this resource has been informed by many people who have given their time, shared their insights and provided information and perspectives gained from their experiences working with children and their families living with FASD. The resource was researched and developed by Jane Weston and Sue Thomas who acknowledge the inspirational work being done to address such complex needs and improve outcomes across the Kimberley. 
International News and Media
The Canadian justice system is one step closer to recognising the potential impacts of fetal alcohol spectrum disorder. This week the Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) was acknowledged by the Parliamentary Standing Committee on justice and Human Rights as a 'vital' contributor in its report on Bill C-583, An Act to Amend the Criminal Code.

Researchers discuss FASD and criminal justice [Canada]
Although many people living with Fetal Alcohol Spectrum Disorder (FASD) are not violent, that segment of the population still has a high incidence of involvement with the criminal justice system. "We know that people with FASD are overrepresented — both as offenders, but also as victims — within the justice system. And, we know that in many places around the country, people with FASD are also overrepresented among those who are incarcerated," said Amy Salmon, executive director of The Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD). 

One of the UK's leading experts in child health is calling for stronger warnings on alcohol to alert women to the dangers of drinking while pregnant. Sir Al Aynsley-Green said exposure to alcohol before birth was one of the "most significant" causes of childhood brain damage. His call for tougher labelling was backed by delegates at the British Medical Association annual conference. Sir Al has called for all UK governments to raise public awareness. 

In three weeks, Kathryn White's son Chris will turn 18 . There will be a little birthday celebration – and a hint of depression. The milestone officially makes Chris an adult, and that will make it hard for his parents to find the shelter and counselling he needs. Kathryn and her husband, Shaun, took in Chris and his younger brother as foster children when the boys were 5 and 3, and adopted them a few years later. Their mother was an addict, and both children were born with fetal alcohol syndrome – which damages the brain in utero, causing stunted growth, mental deficits and behavior problems. 

A Calgary woman says she also had problems getting vital health information from Alberta's adoption services about fetal alcohol spectrum disorder. Susan and Bill Smith, whose real names are being withheld to protect the identity of the children in their care, told CBC News that they didn't find out the two girls they adopted had FASD until after the process was complete. The story, which was published on Monday, spurred feedback from families who say they've gone through a similar experience. A Calgary woman, whom CBC has also agreed not to name for privacy reasons, says she started the adoption process for two teenage boys back in 2013. 

Liberal leader David Swann says adoptive parents need to have all possible information about any medical conditions the children may have prior to adoption, including fetal alcohol spectrum disorder. Swann says there needs to be a review of the policies dealing with medical disclosure in adoption cases. His call follows a report by CBC news that a Calgary couple were unable to deal with behavioural problems in their two adopted daughters as a result of undisclosed fetal alcohol syndrome disorder (FASD). 

Concern over the high number of Foetal Alcohol Syndrome cases in the Cape Winelands has prompted the provincial government to allocate millions of rand to organisations working to combat substance abuse. In a briefing to the Standing Committee on Social Development today, the Department of Social Development in the Western Cape revealed that R92 million has been allocated to the Substance Abuse Programme in the Western Cape, of which R56 million will be transferred to NGO partners.

Stacey Ningiuruvik-Turner's office at the Tulattavik health centre in Kuujjuaq is full of toys, but her work is far from child's play. Seated on a shelf are three life-size baby dolls, each in a sleeper. Their facial expressions tell of different health scenarios: the baby on the left shows the features of an infant exposed prenatally to drugs; the baby on the right shows the features of fetal alcohol spectrum disorder (FASD); the baby in the centre is considered healthy. Her job is to visit homes, schools and daycares in Nunavik's largest community to deliver educational materials on healthy pregnancy and caring for babies and toddlers. 

Much has been said about what wasn't accomplished before the May 18 legislative session deadline, but it's worth noting some important things were accomplished in the final flurry of the session. Among the successes was [the approval of] funding aimed to help drug- and alcohol-addicted pregnant women and new mothers, as part of the Health and Human Services Omnibus bill.

Stella was 19 when she discovered she has foetal alcohol syndrome. "I found out in a horrible way, to be honest," she says. She had taken her boyfriend to meet her father for the first time. Stella and her father had only limited contact, but her boyfriend hoped that he might help to explain some of Stella's erratic, unreliable behaviour, and asked him upfront, "What's wrong with your daughter? Why is she the way she is?" "That's when he paused, and he breathed, and he said it," Stella says, still distressed at the memory of the conversation. "I was shocked. I asked, 'Why wasn't I told about it?' He said he didn't want me to dwell on something like that.

Pediatric specialist Dr. Marna Schwartz's passion for helping kids is really taking her places. Really. She's joined SouthEast Alaska Regional Health Consortium as a traveling physician to provide care in the region's smaller communities. ... Though she's available to see all patients, 0-18, Schwartz has some specialized training in working with children experiencing autism and fetal alcohol spectrum disorders. 

Drawn to northern Alberta, former Texas pastor offers guidance to fetal alcohol victims [Canada]
A pastor for nearly 20 years, Clay Hilton awoke at home in Texas one night and felt an unusual calling. He was in the process of helping establish a church near Dallas, but suddenly found himself drawn to northern Alberta. For little more than two years, Hilton has served as house parent and mentor at the only facility in the region specifically designated for men diagnosed with or suspected of having fetal alcohol spectrum disorder.

Alcohol During Pregnancy Is a Recipe for Disaster, Experts Say [Rwanda]
Alcohol causes more than 200 diseases among its addicts as well as devastating effects to unborn children, according to experts. "The baby's body is formed during the first three months hence alcohol consumed during this period can result in physical abnormalities in the child like neural tube defects and the most severe result of alcohol use is fetal alcohol syndrome (FAS), a lifelong condition characterized by poor growth, abnormal facial features and damage to the central nervous system," Dr David Mwesigye, a gynaecologist, said. 

Coon Rapids couple named 'Changemakers' [USA]
The Arc Greater Twin Cities has honored Jeff and Nancy Beyer of Coon Rapids with its "Changing Policies" Changemaker Award. The award was presented at The Arc's volunteer celebration and annual meeting on May 1. The Changemaker Awards recognize individuals or organizations for making a difference for people with intellectual and developmental disabilities and their families. The Beyers have six children, including two adopted adult children with Fetal Alcohol Spectrum Disorder. They have been very active in educating policymakers about issues families face when a member has FASD and advocating for legislation proposed by The Arc and the Minnesota Organization on Fetal Alcohol Syndrome.

If you're looking for the next great read, then look no further. Linda Rosenbaum's new book Not Exactly As Planned is full of heartbreak and triumph as she navigates the rocky road of adoption and raising a son with fetal alcohol syndrome. This critically acclaimed book talks about her son Michael, who was born with fetal alcohol syndrome, and his battle with alcohol abuse long before he's old enough to take a sip.

Gabe VanNest rushed past the picnic table on his back porch, clutching a popsicle in his hand. He stepped to the edge of the porch, took a short run forward and leaped head-first, tucking his chin and swinging his legs over his head, which sent him crashing into a soft blue pad the size of a queen mattress. "That's a crash pad," said his adoptive mother, Tammi VanNest. "He has lots of energy all the time, so stuff like that is really beneficial for him." Gabe, 9, and his sister Jerica, 7, have fetal alcohol spectrum disorder, which causes social, behavioural and mental challenges. Both have severe anxiety.
Latest Research
Finegersh A., Rompala GR., Martin DIK. and Homanics GE., Alcohol, 30 March 2015, doi: 10.1016/j.alcohol.2015.02.008
Alcohol-use disorder (AUD) is prevalent and associated with substantial socioeconomic costs.  While heritability estimates of AUD are ~ 50%, identifying specific gene variants associated with risk for AUD has proven challenging despite considerable investment.  Emerging research into heritability of complex diseases has implicated transmission of epigenetic variants in the development of behavioral phenotypes, including drug preference and drug-induced behavior.  This review presents an overview of epigenetic inheritance in the context of paternal ethanol exposure and suggests future studies to identify specific effects of paternal ethanol exposure on offspring behavior and response to ethanol.

Gauthier TW., Mohan SS., Gross TS., Harris FL., Guidot DM. and Brown LAS., PLoS ONE, 15 May 2015, doi: 10.1371/journal.pone.0126552
The accumulaton of fatty acid ethyl esters (FAEEs) in meconium of term newborns has been described as one potential biomarker of maternal alcohol use during pregnancy. FAEEs accumulate in multiple alcohol-exposed fetal tissues and in the placenta. This study concluded that nearly one-third of premature pregnancies were alcohol-exposed, and that elevated placental FAEEs hold great promise to accurately determine maternal alcohol use, particularly heavy use, in pregnancies complicated by premature delivery. 

Taplin S., Richmond G., and McArthur M., ANCD Research Paper, October 2014
This report describes policies and practices across Australia, reviews the literature on the identification of maternal alcohol and other drug use, and identifies 'best practice' in the management of substance-using pregnant women. The outcomes of this project will provide valuable findings to inform policy and practice in relation to maternal alcohol and other drug use nationally.
Upcoming Events
Your Shout : Action on Alcohol Conference – Ringwood East, Victoria
DATE: 23rd July 2015
DETAILS: Liquor licensing and planning regulation is complex and the breadth in which local government can apply Victoria's planning and legislation has limitations. This one day conference will: showcase key research into alcohol supply and related harms; identify challenges faced by those who seek to reduce the availability and impact of alcohol; suggest prevention and regulatory strategies that can reduce the harm caused by alcohol; and outline how stakeholders can influence the availability and misuse of alcohol. 

DATE: 18-21st August 2015
DETAILS: This Conference will bring together basic scientists, clinical scientists and medical practitioners from the international community to present and discuss the latest findings on alcohol, drugs of abuse, other CNS-acting drugs, and the treatment of alcohol and drug use and other addictive disorders.

DATE: 8-11th November 2015
DETAILS: This year's conference will address a diverse range of issues including co-existing mental health and drug problems, aetiology, policy innovations, emerging psychoactive substances, responding to First Peoples' needs and addressing drug related harms.
The Conference, to be held at the Pan Pacific Hotel in Perth, will feature an exciting program of international and national speakers. The Conference program will explore the individual, cultural, political, social and other contexts critical to effective prevention and treatment, through poster presentations, symposia, keynotes and concurrent sessions.

Second National Complex Needs Conference – Canberra, Australian Capital Territory
DATE: 17-18 November 2015
DETAILS: The Public Health Association of Australia (PHAA) – in conjunction with the National Complex Needs Alliance (NCNA) – invites you to participate in the second Australian conference to showcase successful programs/approaches in addressing complex needs - with the broader purpose of identifying what works and how. The first conference in 2013 was a huge success - leading to the establishment of the NCNA. It has long been acknowledged that people with complex needs often fall through the cracks in service delivery – between national and jurisdictional service delivery, between government and non-government services, and between services delivered by different portfolio agencies. This conference seeks to identify and showcase successful collaborative efforts in service delivery, with a view to informing whole-of-government approaches to policy and program development.
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