Call for National Plan to Combat Fetal Alcohol Spectrum Disorders (FASD)

18 January 2012: Australia’s leading alcohol research and education body has called for a comprehensive Commonwealth-led National Action Plan to tackle Fetal Alcohol Spectrum Disorders (FASD) – the most common preventable cause of birth defects in Australia.

In Australia there are currently no national prevention strategies to inform people of the risks of alcohol consumption during pregnancy, there is no formal diagnosis structure and services for people with FASD are minimal or non-existent.

Foundation for Alcohol Research and Education (FARE) Chief Executive Michael Thorn said that a national strategy for the prevention and management of FASD is long overdue and vitally important.

“For too long FASD has been the ‘invisible disability’; at worst ignored, at best addressed in an ad-hoc manner which has resulted in critical gaps in the prevention, intervention and management of FASD,” Mr Thorn said.

FARE today released its joint submission (together with the Public Health Association of Australia) to the Parliamentary Inquiry into Foetal Alcohol Spectrum Disorders.

Late last year the Minister for Families, Housing, Community Services and Indigenous Affairs, Jenny Macklin, and the Minister for Health and Ageing, Nicola Roxon, asked the House of Representatives Standing Committee on Social Policy and Legal Affairs Committee to inquire into and report on the incidence and prevention of foetal alcohol spectrum disorder.

The joint submission calls for funding of the first ongoing national public education campaign to promote the National Health and Medical Research Council’s guidelines to reduce health risks from drinking alcohol, as well as for mandatory health warning labels for alcohol products sold in Australia.

“Australia risks lagging behind similar countries, such as Canada, in preventing and managing FASD. This is disappointing as FASD is preventable, and people born with FASD have it for life”, Mr Thorn said.

FARE also recommends funding of a full-scale FASD prevalence study in Australia, improved screening for FASD, and the adoption of a national standardised diagnostic tool for FASD.

In addition, FARE recognises that far more needs to be done to support people with FASD and their families and carers, including recognising FASD as a disability and ensuring people diagnosed are provided with a treatment and management plan tailored to their needs.

Mr Thorn urged the Inquiry to recommend a national plan as a matter of priority.

“This year, we have a historic opportunity for the Commonwealth Government to take the lead in the efforts to significantly reduce alcohol-related harms and make a substantial difference in the lives of people with FASD”, Mr Thorn said.

– ENDS –

Michael Thorn is available for interview.

Media Contact: Sam North, phone: 0407 941 447

The submission is available for download at www.fare.org.au/wp-content/uploads/2011/07/FASD-Inquiry-Submission.pdf

Foundation for Alcohol Research & Education (FARE): FARE – formerly the Alcohol Education and Rehabilitation Foundation – is an independent, charitable organisation working to prevent the harmful use of alcohol in Australia. Since 2001, FARE has invested over $115 million in research and community projects to minimise the impact of alcohol misuse on Australians. Through our national grants program and commissioned research, the FARE has established itself as a leading voice on alcohol and other drugs issues. We work with community groups, all levels of government, police, emergency workers, research institutions and the private sector to address alcohol-related problems. For further information visit our website: www.fare.org.au

Facts about Fetal Alcohol Spectrum Disorders (FASD)

1. There is currently no known safe level of alcohol consumption during pregnancy. For this reason the National Health and Medical Research Council recommended that ‘not drinking during pregnancy is the safest option’ (1).
2. Alcohol consumption during pregnancy can cause irreversible damage to the fetus, resulting in conditions referred to as FASD; a non-diagnostic umbrella term for the range of disabilities that result from prenatal alcohol exposure (2, 3).
3. FASD are the leading preventable cause of non-genetic, intellectual disability in Australia. While there is no cure for FASD, early detection and intervention can assist individuals, their families and carers to develop coping strategies and mechanisms for everyday life (4, 5).
4. FASD are often described as an ‘invisible’ disability (6) as individuals may not exhibit any of the facial or physical characteristics associated with the condition. However prenatal alcohol exposure can result in problems with behaviour, impulse control, memory, speech and language development, impairment of vision and hearing and difficulty with judgment and reasoning (7).
5. People with FASD are more likely to experience mental health issues, alcohol and drug problems, trouble with the law, disrupted school experience and exhibit inappropriate sexual behaviours. Due to underlying brain damage, people with FASD can often struggle with day-to-day living, managing money and sustaining regular employment4 and are also believed to be over-represented in the criminal justice system (8,9). In Australia FASD is not recognised as a disability, and this precludes those with impaired mental functioning from receiving the help and support they require to manage their condition.
6. The prevalence of FASD in Australia is largely unknown due in-part to a lack of agreed diagnostic criteria and clinical guidelines, a lack of understanding about FASD among the medical profession and lack of routine screening of women about their alcohol use during pregnancy.
7. Prevalence rates for FAS, which is one of the conditions within the spectrum, are between 0.06 and 0.68 per 1,000 live births in the general population. Among Indigenous Australians, FAS is estimated to be between 2.76 and 4.7 per 1,000 births (10).
8. FASD is overrepresented among people experiencing disadvantage, with factors such as lower socioeconomic status, malnutrition, higher age of mother, loss of traditional culture and level of education all contributing to higher rates of FASD (4).

References

(1) National Health and Medical Research Council. (2009). Australian guidelines to reduce health risks from drinking alcohol. Canberra: Commonwealth of Australia.

(2) Barr, H.M. & Streissguth, A.P. (2001). Identifying maternal self-reported alcohol use associated with Foetal Alcohol Spectrum Disorders. Alcohol: Clinical and Experimental Research, 25, 283-287.

(3) Nguyen, T.T., Coppens, J & Riley, E.P. (2011). ‘Prenatal alcohol exposure, FAS and FASD: An introduction.’ In E.P. Riley, S Clarren, J Weinberg & E Jonsson (Eds.) Fetal Alcohol Spectrum Disorder: Management and Policy perspectives of FASD (pp.1-13). Weinheim, WILEY-VCH Verlag GmbH & Co. KGaA.

(4) O’Leary, C. (2002). Foetal Alcohol Syndrome: A literature review. National Alcohol Strategy 2001 to 2003-04 Occasional Paper. Canberra: Commonwealth Department of Health and Ageing.

(5) Streissguth A., Bookstein F., Barr H., Sampson P., O’Malley K, and Young J. (2004). ‘Risk factors for adverse life outcomes in Foetal Alcohol Syndrome and Foetal Alcohol Effects.’ Journal of Developmental and Behavioural Pediatrics, 25(4), 228-238.

(6) Russell, V. (2008). Living with Foetal Alcohol Spectrum Disorder: A guide for parents and caregivers. Drug Education Network Tasmania, Communities for Children & Stronger Families.

(7) Alcohol, Pregnancy & FASD website (2011). Telethon Institute for Child Health Research.

(8) Riley, E. Clarren, S., Weinberg, J. and Jonsson, E. (Eds) (2011). Fetal Alcohol Spectrum Disorder: management and policy perspectives of FASD. Wiley-Blackwell, Germany.

(9) House of Representatives Standing Committee on Aboriginal and Torres Strait Islander Affairs (2011) Doing Time – Time for Doing – Indigenous Youth in the criminal justice system. Chapter 4: the link between health and the criminal justice system. Commonwealth of Australia.

(10) Peadon, E., Fremantle, E., Bower, C. and Elliott, E. (2008). ‘International Survey of Diagnostic Services for Children with Foetal Alcohol Spectrum Disorders’, BMC Pediatrics 2008, 8:12.

On the 16th January 2012 the Department of Health released the draft document which will be used by the federal and state governments to map the reform of Australia’s mental health system for the next 10 years.

The Russell Family Fetal Alcohol Disorders Association (rffada) represents over 700 individuals and organisations from around Australia. Many of the people and organisations on our database understand the deep-rooted relationship between Fetal Alcohol Spectrum Disorder (FASD) and mental health.

Statistics extrapolated from Canada and the United States (because we have none of our own to date), finds that there could be more than 200,000 affected individuals in Australia. Of those 200,000 people, 98% will have mental health problems (sources for this information available on request).

The rffada suggests that without incorporating information relating to the following dot points, the needs of a significant proportion of the Australian mental health community and their families will not be met.

1. The importance of the nine months prior to birth in relation to the overall physical and mental health of the individual
2. Ninety eight percent of people prenatally affected by alcohol will have a mental health condition
3. Over 451,000 children were identified by the ANCD as living in families where drug and alcohol consumption is problematic
4. That the current dual-diagnosis model (drugs and/or alcohol and mental health) become a tri-diagnosis model incorporating FASD as the third diagnosis
5. The understanding that FASD is an organic brain injury often overlooked as the primary disability under which a variety of ensuing conditions occur, one of which is mental health
6. Information provided by parents and carers must be taken into consideration as part of the assessment process e.g. that the individual has no insight into his or her needs; that the individual requires certain support etc.)
7. The expectation that people can make an educated and informed decision because they say they can
8. While people with FASD can relate the name of their disability and even the co-occurring conditions, they are unlikely to be able to accurately describe the services, supports and programs which can best support them and progress them to the next level
9. While people over 18 are considered to be adults, adults with FASD may be operating at the developmental age of a 12 year old

Unless Fetal Alcohol Spectrum Disorder is named as one of the leading causes of mental health conditions in Australia, those families currently living with FASD will not receive the support they need.

While the parents and carers of children with Autism receive acknowledgement, understanding and compassion: acknowledgement that their job is a hard one; understanding that parenting a child with Autism takes a huge emotional toll and compassion for the grief and loss experienced; parents and carers of children with FASD receive the contrary.

They experience a lack of acknowledgement that they are dealing with a child with a disability – the reason is twofold: Firstly because the child looks ‘normal’ and talks well; and secondly because only 2% of medical professionals feel comfortable dealing with FASD.

They experience a lack of understanding of how difficult it is to parent a child with FASD since they are seen as ‘bad’ parents since the child’s behaviour is seen as a parenting problem not a brain injury — and instead of compassion, they experience guilt, shame and fear.

Russell Family Fetal Alcohol Disorders Association

30th January 2012

I thought I would share with you my favourite quote:

To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and to endure the betrayal of false friends; to appreciate beauty; to find the best in others; to leave the world a bit better whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you have lived. This is to have succeeded.

— Ralph Waldo Emerson

FASD Events

There will be a community consultation by the House Standing Committee on Social Policy and Legal Affairs in Cairns on the 31st January at the Sebel – 8.30am

FASD on Facebook

Join our Facebook page for strategies interventions and support here.

FASD on YouTube

Have a look at the rffada’s channel on YouTube for information on strategies, being a birth parent, strategies for teachers etc rffada@YouTube

FASD on the Internet

rffada website is at http://rffada.org

FASD News

1–2 Drinks a Week Can Raise Miscarriage Risk

According to a new study from Denmark, light drinking in early pregnancy increases the risk of miscarriage. Article, My Healthy News Daily, January 18, 2012

Homes declared alcohol-free in Kimberley study

ABC Online. It comes as researchers complete a world-first study into foetal alcohol syndrome in the Kimberley. The study was initiated by Aboriginal women in the …

New Links Found Between Drinking During Pregnancy And Fetal Alcohol Syndrome

KPBS SAN DIEGO — UC San Diego researchers have discovered new links between drinking during pregnancy and fetal alcohol syndrome. Their new study identifies a particularly sensitive time of a woman’s pregnancy. The research involved 992 women…

Fetal Alcohol Syndrome risk higher at end of 1st trimester

abc7.com (KABC Photo) LOS ANGELES (KABC) — The risk of a fetus developing fetal alcohol syndrome is the greatest toward the end of a woman’s first trimester of pregnancy, according to a study released Wednesday by University of California, San Diego…

Alcohol not safe at any time during pregnancy

Gant Daily

To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and to endure the betrayal of false friends; to appreciate beauty; to find the best in others; to leave the world a bit better whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you have lived. This is to have succeeded. Ralph Waldo Emerson

San Diego, CA, United States (AHN) – A study on Fetal Alcohol Syndrome has found there is no safe amount of drinking during pregnancy. The study appeared online Jan. 16, ahead of publication in the April print issue of the journal Alcoholism Clinical …

New Study: It’s Still Not Okay To Drink Alcohol While Pregnant

“[O]ne of the challenges has been determining what are the windows of risk and the patterns in timing and quantity of alcohol use, and this [study] addresses that,” Tom Donaldson, president of the National Organization on Fetal Alcohol Syndrome in…

Youth bail service proving successful: Burch

The after-hours bail support service aims to keep young people out of custody. (ABC TV)

The ACT Government is claiming success with a new program aimed at keeping young people out of custody.

Alcohol-Related Birth Defects and the Law:

How Should Attorneys & Judges Respond to Fetal Alcohol Spectrum Disorders (FASD)? A free Continuing Legal Education Program, will be held on Friday, February 3rd at the 2012 American Bar Association’s Midyear Meeting in New Orleans, Louisiana. For more information and to register visit the link above.

Banff XLIV: Fetal Alcohol Spectrum Disorders: Challenges in Practice, Research and Policy

The Fetal Alcohol Spectrum Disorders: Challenges in Practice, Research and Policy conference will be held on March 18-21, 2012 in Banff, Alberta Canada to discuss many of the issues surrounding alcohol-use during pregnancy. Conference Announcement, University of British Columbia, January 2012

Online FASD Courses

The CDC’s Arctic FASD Regional Training Center is now offering a series of three intensive one-credit courses online through the Department of Psychology at the University of Alaska Anchorage. Course, Arctic FASD RTC, January 2012

Study: No alcohol intake safe during pregnancy

A new study suggests that the alcohol risk to a fetus is highest in the late first trimester. Article, USAToday, January 16, 2012

SDSU researchers develop an assessment tool to identify birth defects

Leading FASD expert, Dr. Eugene Hoyme and South Dakota State University have collaborated to develop a standardized assessment tool to identify birth defects in infants. Article, Medical Express, January 16, 2012

Drink Think projects targets the city’s new mums and dads

The Drink Think project of Ireland provides education to expecting and new parents about the dangers of alcohol-use during pregnancy.

Thanks for your support

Anne

Should FASD be recognised as a disability by the Department of Families, Housing, Community Services and Indigenous Affairs? (Currently it is not)

98% of the votes said “Yes”, that FASD should be recognised.

Rffada News

Don’t forget we have a free call number for advice on FASD 1800 rffada

FASD News

“Study finds Early Start program could save US billions in health costs.”  December 20th, 2011

It’s a Matter of Justice – 5th National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder

Fitzroy children centre of Foetal Alcohol Disorder study
Pediatrician James Fitzpatrick of Australia is leading an investigation in to FASD in children of the Fitzroy Valley.

Article, Science Network of Western Australia, December 16, 2011

Analysis of fetal meconium can reveal gestational alcohol exposure
A recent study of fatty acid ethyl esters (FAEEs) and ethylglucuronide (EtG) in meconium at hospitals in seven Italian cities has revealed that fetal alcohol exposure is underestimated in Italy.

Article, EurekAlert, December 15, 2011

Pregnancy and alcohol don’t mix
Due to the recent push for alcohol and pregnancy warning labels on alcoholic beverages, physicians in Australia are recommending that women abstain completely from alcohol use during pregnancy.

Article, Central Western Daily, December 14, 2011

FASD Events

Inquiry by the House Standing Committee on FASD

The Inquiry’s first port of call on their trip around Australia is Cairns on the 31st January.

They will be based at the Sebel Townhouse and will commence at 9am. Please attend if you can. Those parents and carers who do not wish to speak in front of others have been given confidential time to discuss their issues. Please attend. This is such a crucial Inquiry for FASD on Australia. Thanks. If you need more information please email me.  Anne.

The 5th International Conference on Fetal Alcohol Spectrum Disorder

Research: Results and Relevance Integrating Research, Policy, and Promising Practice Around the World

Conference Dates: February 27 – March 2, 2013
Conference Location: The Westin Bayshore, Vancouver, BC

Call for Abstracts is now open Deadline For Abstract Submissions: May 31, 2012

The National Drug and Alcohol Research Centre is currently seeking families

including foster and adoptive families who care for children affected or suspected of being affected by FASD, to take part in an extremely important research project. If you are such a family (or you are a service provider working with such a family) would you please seriously consider being involved as the information you provide will be used to assess what services are needed to assist families caring for children with FASD. The survey can be conducted over the phone at a time convenient to you and all information given in the survey will be confidential. All participants will go into a draw to win an iPad.

If you are interested in participating please call Courtney on 02 9385 0282 or email Courtney [dot] breen [at] unsw [dot] edu [dot] au.

2012 Upcoming Festivals – Mamapalooza Spring Festivals

May 7–13, 2012, Sydney Australia @ Tap Gallery

Mothers of the world take note — Sydney will be on the map in 2012 with a great Festival of Arts celebrating Mamapalooza ‘the Aussie way!’

veemalnar [at] gmail [dot]com

mobile: 0402 036 082

Download PDF of 2007 media coverage on FASD

This document (2MB PDF) contains a package of some of the news items from the 2007 campaign for Fetal Alcohol Spectrum Disorder and alcohol and pregnancy which was a national media campaign run jointly with the rffada.

Merry Christmas and a Happy 2012

From the board

Sonia Berton — President
Anne Russell — Secretary
Gary Johnson — Treasurer

The rffada will continue to do its best for FASD in Australia in the New Year. We have certainly begun to tip the balance in Australia with the House Standing Committee on Social Policy and Indigenous Affairs preparing an inquiry on FASD and the labelling issue move slowly forward.

In the minds of those of us who follow the progress of this condition in Australia we are pleased that it is receiving the level of attention and support that it has over the last 6–9 months.

Thanks to all of you who support the rffada. As a birth mother of two children with the condition I will not stop until Australia has the following:

1. A national media awareness campaign for the prevention of FASD
2. Alcohol and pregnancy education in all high schools
3. Training implemented for the employees of all services likely to be visited by a person with FASD
4. Early intervention funding similar in nature to the Better Start Initiative
5. Ongoing government funding for the rffada to begin some of the projects we have outlined in our strategic plan (not quite ready for comment)

It’s a big job but knowing that we have the support of so many does make a big difference.

Thanks

Merry Christmas and Happy New Year