Good morning – I would like to thank you all for supporting those people living with FASD in Australia. Thank you to those people who introduced colleagues and friends to the rffada.
It’s a shame that the majority of the news below is from overseas. If you have FASD news from your organisation please let me know and I will send it around the rffada database. The NPY Women’s Council recently won awards for their poster, DVD and other FASD material. Let’s advertise the good work that we are doing in Australia in alcohol and pregnancy and FASD. Let me know, I will send it around in our newsletter and then place it on the rffada website.
The House of Representatives (Federal) Standing Committee on Social Policy and Legal Affairs Chaired by Member for Moreton Graham Perrett has today announced an Inquiry into Fetal Alcohol Spectrum Disorders (FASD). The Inquiry was referred to the committee by Ministers Jenny Macklin and Nicola Roxon Submissions by interested persons and organisations that address the terms of reference are due by 9 December 2011.
For further information go to http://www.aph.gov.au/house/committee/spla/fasd/index.htm
Member news update
Since last update we now have over 560 organisations and individuals on our database supporting the rffada, FASD and those living with FASD – thank you.
We are looking for parents and carers of people with FASD in the Ipswich area. If you would like to connect with other parents and carers in this area please return email me. Thanks. Anne
The Russell Family Fetal Alcohol Disorders Association (rffada) is a not-for-profit health promotion charity with no government funding dedicated to ensuring that individuals affected prenatally by alcohol have access to diagnostic services, support and multidisciplinary management planning in Australia and that carers and parents are supported with a “no blame no shame” ethos.
Terminology for use by professionals when discussing FASD and birth parents
The rffada has been asked to prepare a document which outlines the most appropriate language to use when discussing alcohol and pregnancy and fetal alcohol spectrum disorder. When discussing pregnant women and alcohol consumption the most appropriate language is that which takes the blame from pregnant women and places it on alcohol. For example language which states, “when a pregnant woman consumes alcohol”, places a measure of blame on the pregnant woman. If we use language which focuses the listener and reader on the alcohol, “when alcohol is consumed while pregnant” we will have more acceptance of the fact that mothers and fathers are not to be blamed or shamed should they deliver a child or children with FASD. If we take steps to reduce the blame now, more birth mothers will feel confident in speaking up about the condition. Hundreds of books, tens of thousands of research and scholarly articles and untold public health reports have been generated in the last thirty years. Yet one voice has been mostly silent, the voice of the birth mothers themselves1. The rffada recommends this way of speaking about alcohol and pregnancy to all who have cause to discuss this condition and its implications.
Posters — all have been distributed however a .pdf version is available for download on rffada.org
Brochures — this brochure has been developed in collaboration with GET A GRIP teenz™ and Training Connections Australia and can also be downloaded here.
Flyer — This flyer has also been developed in conjunction with and and is located in the same place.
National Disability Insurance Scheme
The rffada has made contact with Senator McLucas and the Queenslandand Western Australia State Coordinators of the NDIS regarding the inclusion of FASD in this scheme. The rffada wishes to ensure that there are places for individuals with FASD even though we agree in principal with the NDIS.
Characteristics and behaviors of mothers who have a child with fetal alcohol syndrome Leading experts on FASD, including Louise Floyd of the Fetal Alcohol Syndrome Prevention Team of the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention (CDC), reveal the results of a four-state FAS Surveillance Network study on mothers of children with FAS. Research, Neuro-toxicology and Teratology, October 2011
Number of Indigenous youth in justice system ‘unacceptable’: …annual snapshot of the juvenile justice system has found Indigenous Australians are more than 15 times more likely to be in detention or community supervision than non-Indigenous youths… ABC Online
Wayne State to develop a computer-delivered intervention for alcohol use during pregnancy Researchers at Wayne State University’s Parent Health Lab in the School of Medicine have received funding to develop an online screening, brief intervention, and referral for treatment (SBIRT) program to prevent alcohol use during pregnancy. Article, Eurek Alert, October 26, 2011
Children with Heavy Prenatal Alcohol Exposure Exhibit Deficits when Regulating Isometric Force Researchers at San Diego State University have learned children prenatally exposed to alcohol experience deficits in isometric force production that delay their ability to perform basic motor skills. Research, Alcoholism: Clinical and Experimental Research, October 20, 2011
FASD often an ‘invisible impairment’ Floyd Perras, Director of Siloam Mission of Canada talks about his experience working with a young woman with FASD. Article,Winnipeg Sun, October 18, 2011
Characteristics and behaviors of mothers who have a child with fetal alcohol syndrome Leading experts on FASD, including Louise Floyd of the Fetal Alcohol Syndrome Prevention Team of the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention (CDC), reveal the results of a four-state FAS Surveillance Network study on mothers of children with FAS. Research, Neurotoxicology and Teratology, October 2011
A preliminary study of the neural effects of behavioral therapy for substance use disorders Drug and Alcohol Dependence, Available online 29 October 2011 Elise E. DeVito, Patrick D. Worhunsky, Kathleen M. Carroll, Bruce J. Rounsaville, Hedy Kober, Marc N. Potenza
Research Campus expert lands big grant for fetal alcohol syndrome research Dr. Philip May, a leading expert on FASD and 2011 NOFAS Excellence Award recipient, has earned a nearly nine million dollar grant to study the prevalence and characteristics of FASD in the U.S. Article, Salisbury Post, November 4, 2011
Screen all prison inmates for fetal alcohol syndrome, doctor urges Dr. Albert Chudley, a leading FASD expert from Winnipeg is encouraging prisons to screen inmates for FASD to reduce the number of repeat offenders through getting those affected the assistance they need before and after they are incarcerated. Article,Edmonton Journal, November 4, 2011 Effects Of Alcohol Consumption By Pregnant Moms A recent national survey shows that nearly one third of women consumed alcohol at one point during their pregnancy. Article, Betty Ford Institute, November 3, 2011 Four-fifths of women drank alcohol ‘close to conception’ According to a recent prevalence study from Coombe Women and Infants University Hospital of Dublin, Ireland, 81% of women reported alcohol consumption close to conception. Article, Irish Medical Times, November 3, 2011 145 babies had alcohol withdrawal symptoms New statistics show that over a three year period 145 newborns were born with delirium tremens due to heavy alcohol exposure in the womb. Article, Irish Independent, November 2, 2011
Discrimination – Have you experienced it? – I have experienced this (unintentionally I’m sure) when trying to find support and services for my children – I believe that anyone who is a parent or carer of a child with FASD inAustralia has – what can we do about it? The Raising Children Network website aims to increase awareness of and address discrimination towards parents. Australia has national, state and territory laws to make sure children with disability are not discriminated against, either now or when they are older. If you believe you or your child have experienced discrimination, you can take some fairly simple steps to have your complaint heard.
- What is discrimination?
- What is disability?
- Commonwealth law: Disability Discrimination Act 1992
- State and territory laws
- Which law to use
- Making a complaint about discrimination
The resource is located on the main website and can be accessed at http://raisingchildren.net.au/articles/disabilities_antidiscrimination_law.html.