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Welcome to rffada

The Russell Family Fetal Alcohol Disorders Association (rffada) is a national not-for-profit health promotion charity dedicated to prevention and 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.

On this site you will find a range of support resources and information relating to Fetal Alcohol Syndrome Disorder, or FASD.

The Russell Family Fetal Alcohol Disorders Association (rffada) Strategic Plan is based on four key priorities.

    1. Prevention
    2. Support
    3. Training and Education
    4. Research and Projects

FASD Forum - May 10 2016

Perspectives on Fetal Alcohol Spectrum Disorder: The Invisible Disability

On Tuesday May 10th 2016

Venue: Bendat Parent & Community Centre, 36 Dodd St, Wembley, overlooking Lake Monger

Registration begins at 8:30am

 

FASD is the leading, preventable cause of brain damage in utero. It can cause a range of developmental, cognitive and behavioural problems, which can appear at any time during childhood and last a lifetime. Women’s Health & Family Services presents a one day conference on FASD covering topics such as prevention, assessment, practical skills for AOD workers, current FASD programs and lived experience.

Cost:         General $150        WANADA Members   $125       Student/Concession:  $100                                      
Keynote Speakers:

 

Adelle Rist is a National Educator with NOFASD Australia. She has worked in the arena of Community services for more than a decade and has experience working in specific roles as a Counsellor/community worker. This includes working with adolescents, adults and families within the Alcohol and other Drug sector, Mental Health and Community/youth development within Local Governments. All of these roles have had community education and health promotion as key responsibilities in this unique area of health.

 

Carol Bower has qualifications in medicine, epidemiology and public health. Her research has a strong focus on investigating causes and effects of birth defects, on translating research findings into public health policy and practice and on evaluating the effectiveness of that translation. A leading example is research on prevention, diagnosis and management of Fetal Alcohol Spectrum Disorders (FASD). Major current research projects are: FASD in juvenile justice; and the development of a national Centre of Research Excellence –Reducing the Effects of Antenatal Alcohol on Child Health – REAACH.

 

Louise and Craig have two grown daughters, 28 and 25, with families of their own. They have been fostering for 15 years and have been raising their current group of children for 10 and 8 years respectively. Their 8 year old SGO (guardianship) daughter was diagnosed with full FASD when she was 3 years old and this began their journey of discovery, trials, closed doors and lack of support and understanding. When they found their Paediatrician, and got their daughter on the right medications, it was literally life changing and they want to support other families to make sure they have the knowledge and advice they wish they had at the beginning.

 

Anne Russell is the mother of two children with Fetal Alcohol Spectrum Disorder (FASD). In 2000, she first identified her youngest son had FASD. As she learned more about the condition she identified traits in her oldest son. Both her children have been diagnosed and both are now adults. Anne has worked solidly for the last 16 years to help raise awareness of the condition and to help families living with FASD. For the first 12 years, she worked with NOFASD as the birth mother contact and in 2011 successfully lobbied the government for funding for NOFASD to continue its work. In 2010, Anne was a Queensland finalist in the Australian of the Year awards. Currently she is a member of the NOFASD Parent Advisory Group, the FASD Consortium and the Collaboration for Alcohol Related Development Disorders at the University of Queensland. Anne has featured in a variety of media interviews and stories including Statewide, The Project and television news items on every channel. More recently, she was featured in a 4 corners report on FASD.

 

Raewyn Mutch is a Consultant Paediatrician with extensive experience working with multidisciplinary teams across specific clinical areas in paediatrics. She has advanced postgraduate clinical and research skills in respiratory medicine, infectious disease, international health, adolescent medicine, developmental medicine and social and cultural determinants of health. She is currently employed in 3 areas: as a paediatrician at the Refugee Health Service at Princess Margaret Hospital; Child Development Services providing review, intervention and complex multi-disciplinary team assessments including for Autism and Fetal Alcohol Spectrum Disorder (FASD); and as post-doctoral fellow with the Alcohol And Pregnancy and FASD Research Group at the Telethon Institute for Child Health Research.

 

Sharynne Hamilton is a Ngunnawal woman from Canberra. Sharynne has worked in the area of Parental and Family engagement for more than 20 years and is a founding member of The Family Inclusion Network in WA (FINWA). Sharynne joined the Telethon Kids institute in August 2015 to undertake the Qualitative research aspect of the Banksia Hill Detention Centre FASD project.

 

 

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PATCHES Paediatrics FASD clinics – Perth, Kimberley’s, Pilbara

 

PATCHES Paediatrics has commenced operation of Perth’s first FASD diagnosis and treatment service. Having provided comprehensive multidisciplinary FASD clinics in Kimberley’s Fitzroy Valley since 2014, PATCHES is now offering this service in Perth and outer metropolitan centers, including within the WA Justice system. The service is open to receiving referrals from the Justice System, Child Protection Services, Schools and Health services. PATCHES specialises in improving access to FASD assessment and treatment among young people in hard to reach places, including remote Aboriginal communities in the Kimberley and Pilbara and the urban model in Perth.  The key to PATCHES is to simplify a complex process of referral and multidisciplinary assessment. The team brings together a group of professionals that may include a paediatrician, psychiatrist, neuropsychologist, occupational therapist, speech pathologist and social worker as a ‘one stop shop’ for multidisciplinary assessment.  This process results in a single, simple to understand and practical diagnostic and treatment report allowing parents and caregivers to better understand their child’s strengths and weaknesses.  The FASD Clinic is coordinated by the Robin Winkler Clinic Director, Associate Professor Carmela Pestell, in collaboration with PATCHES Paediatrics/Telethon Kids Institute Director, Dr James Fitzpatrick – Paediatrician.  In addition to our neuropsychology clinic, we offer regular outpatient specialised multi-disciplinary assessment clinics for children and adolescents at risk for FASD. We work closely with the PATCHES team to provide a multidisciplinary assessment clinic for children aged from birth to 18 years, based on internationally accepted FASD diagnostic guidelines. In order to claim Medicare rebates for the FASD assessment parents will need a referral from their General Practitioner (GP) or medical specialist. The required paperwork to give your GP can be provided to you from the PATCHES team. In addition to the Medicare rebate, there is a gap fee which can be discussed with PATCHES. Referrals from parents, the Department of Child Protection and Family Support, as well as the Health Department are welcome. For more information or to book an appointment please contact either:

Robin Winkler Clinic
  (08) 6488 2644                            OR
  This email address is being protected from spambots. You need JavaScript enabled to view it.

Patches Paediatrics
  (08) 9489 7932
  This email address is being protected from spambots. You need JavaScript enabled to view it.

 

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Latest papers from Jerrod Brown

pdfFST-1.3-FASD-A-Review-for-Criminal-Justice-and-Legal-Educators.pdf157.05 KB

pdfFASD_and_differential_diagnosis_and_therapeutic_challenges.pdf1.9 MB

pdfFST-1.3-FASD-and-Art-Therapy-An-Exploratory-Review.pdf283.86 KB

pdfFST-1.3-FASD-in-the-Criminal-Justice-System-Invisible-in-Plain-Sight.pdf118.09 KB

pdfFST-1.3-Social-Dysfunction-A-Key-Deficit-in-Adults-with-Suspected-and-Confirmed-FASD.pdf166.6 KB

pdfFST-1.3-What-Forensic-Professionals-Need-to-Know-About-FASD.pdf249.19 KB

  

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This video from founder, Anne Russell is a plea to Mr Turnbull to provide Australians with a national media campaign on FASD to raise awareness that no alcohol is safest for the unborn child. Please share. Too many people and organisations are suggesting that those who maintain that abstinence during pregnancy is the safest option are over reacting. That is the very reason we need to say more than alcohol and pregnancy don’t mix  --- we need to show people why.

 

The CDC recently released its guidelines on alcohol and pregnancy - if you are drinking use contraception, if you are not using contraception, dont drink!  Some people have not understood such seemingly harsh guidelines.  Watch this video before you decide to drink.

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Fetal Alcohol Spectrum Disorder [FASD] impacts on education, mental health, drug and alcohol supports, offending, the criminal justice system and many other social supports.

FASD prevalence studies from overseas (we don’t have our own yet) seem to indicate that there are around 500,000 people in Australia who, if they were to be diagnosed, would be found to have FASD.  The education system is in a unique position where students with undiagnosed FASD will be taught throughout their childhood and adolescence.  Education system is of particular concern because of the propensity for children with FASD to develop secondary disabilities which are often worse than the primary injury to the brain.

It will be difficult for teachers to manage students with the physical brain injury that is FASD without understanding that the sensory processing, mental illness, learning disabilities, speech problems and behaviour are not within the control of the student.  It would be much easier for both teacher and student if the teachers were trained in the identification and interventions required for people with FASD.  Evidence based teaching specifically developed for neuro-typical students will leave children with FASD behind and create more behavioural issues in the classroom.  Because students with FASD whether diagnosed or not do not have neuro-typical brains, they require a different teaching approach.  This approach will not ‘hurt’ children without FASD but will make a big difference to the learning and behaviour of children with this condition.

Particularly in Australia, because FASD is not often diagnosed, people with FASD will develop secondary disabilities through frustration and disappointments secondary to the primary disability, the brain injury.  This typically occurs during young adolescence.  Children with FASD are expected to manage school life (social and academic) in the way that a neuro-typical student might, and is likely to continually ‘fail’.  They will be the students who are in the Principal’s office over and over again and seem not to learn from their mistakes.  Secondary disabilities such as mental health problems, substance abuse, trouble with the police, expulsion or suspension, leaving school early and other issues can be prevented or alleviated if the people around the student with FASD understands that he or she has a physical brain based condition.   They are likely to be referred for a diagnosis of ADHD, Autism or Asperger’s. These conditions are often misdiagnosed instead of FASD or they are co-morbid with FASD.

For example, children with FASD may have the following history:

  • Learning  problems at school
  • Significant behavioural problems
  • Have been diagnosed with ADHD, ADD, ODD, RAD, or other ’alphabet soup’ type      diagnoses
  • Suspended or expelled from school
  • Not doing well academically even though they seem quite intelligent
  • Can talk very well
  • Using drugs and |or alcohol
  • Agree with you or nod they understand but you get the feeling its only because they want to get out of your office not because they really understand
  • Have been in trouble with the police
  • May have a history of inappropriate sexual behaviour
  • Suicide ideation
  • Don’t do their homework
  • Truancy regularly
  • Can be angry and violent
  • Have depression |anxiety but are also very difficult to diagnose because they      can be observed to be depressed and suicidal one day yet seem happy the      next or vice versa
  • When one thing goes wrong “everything is wrong”
  • They may exhibit immature behaviour when they are stressed or under pressure
  • Have a dysfunctional family environment where mum and dad both use drugs or      alcohol (this is not necessarily the case with children with FASD because      the majority of mothers with children with FASD will be social drinkers)
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    While this information is specific to teachers, children with FASD grow up and will often cycle around services.  Because of the issues which developed in their childhood and teenage years, they are likely to have the following problems:

    1.         Mental illness
    2.         Drug or alcohol use or abuse
    3.         Relationship problems
    4.         Unstable accommodation
    5.         You will see them over and over
    6.         They are likely to be in crisis much of the time
    7.         They may not attend appointments
    8.         Have been in trouble with the police
    9.         They did not finish school
    10.      They may not be living with their family of origin

    For more information about FASD or to discuss training options please contact Anne on 0412 550 540 or at This email address is being protected from spambots. You need JavaScript enabled to view it. .

     

    New Review of FASD Literature Identifies Hundreds of Co-Occurring Conditions

    January 29, 2016

     

    Researchers at the Centre for Addiction and Mental Health (CAMH) in Toronto, Canada have published a review which identifies more than 400 distinct disease conditions that may co-occur in people with an FASD.

    Published online on January 5th by the journal The Lancet, the article examines the results of more than 125 studies. A total of 428 potential co-occurring conditions are identified, affecting nearly every system of the body, including the central nervous system, vision, hearing, the heart, circulation, digestion, and musculoskeletal and respiratory systems. While the association with FASD does not necessarily represent a direct cause-and-effect link, many of these disorders have been shown to occur more often among those with FASD than in the general population.

     

    To read an online summary of the article, click here

     

     

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    Do you live in Kalgoorlie and have an interest in being part of a FASD support group?

    Face to face FASD support groups are springing up all over Australia.  Kalgoorlie residents who have children with FASD would like to establish a group but they need more interested people.  This group has now progressed to the point where the group's organiser is looking for appropriate dates and times for the first meeting. 

    Could you please choose all the time slots and days that suits you by clicking the link  http://doodle.com/poll/n4uht2qp2vcnubxh and choose your preferred date and time. 

     

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    Research on the fathers' use of drugs and alcohol at conception on fetal outcomes

     

    This is information provided to me by a Canadian PhD student who has been working on epigenetics and the severity of FASD

     

    1) http://www.tandfonline.com/doi/abs/10.1080/19768354.2013.865675

    2) http://www.ncbi.nlm.nih.gov/pubmed/15223537

    3) http://journal.frontiersin.org/article/10.3389/fgene.2014.00154/full

     

    These are also worth reading and the dots can start to be connected:

    1) http://www.the-scientist.com/?articles.view/articleNo/44696/title/Obesity-Alters-Sperm-Epigenome/

    2) http://epigenie.com/sperm-mirna-drives-intergenerational-stress-response/

    3) http://epigenie.com/more-insights-into-sperm-epigenomics-histone-methylation-takes-it-solo-transgenerationally/

     

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    FASD in the News

     

    https://www.facebook.com/abc4corners/videos/10153262227525954/

    https://www.facebook.com/abc4corners/videos/10153262230860954/

    https://www.facebook.com/abc4corneers/videos/10153260754665954/

    http://www.abc.net.au/news/2015-11-02/mothers-in-anguish-over-childrens-foetal-alcohol-disorders/6900562

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    FASD Screening Tool

     

    The rffada has prepared an informal non-medical screening tool to identify people with FASD.  The questions in this tool are based on my research both personal and academic into the condition over the last 15 years as well as my experience as the mother of two children with FASD.  The material in this form offers information only and is not evidence-based. Only a doctor can give medical advice and | or make a diagnosis.  FASD can vary in severity and affect those with the disorder throughout their lives. Some people may have just one or two problems; others may have many. The types of problems experienced by people with FASD can also change as they become older.  A positive response to all these questions still may not mean FASD as there are other conditions which also have these same signs, symptoms and history however if it looks and sounds like FASD treat it like FASD and use FASD-friendly interventions and strategies.

    pdfFASD_Screening_Tool__-_under_18.pdf812.01 KB

    pdfFASD_Screening_Tool__-_over_18.pdf740.73 KB

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    Objectives of the rffada

    What our government MUST do immediately to assist parents and carers give their children with FASD the best possible opportunity in life

    • Prepare and televise a national education campaign developed in consultation with parents and carers of children with FASD 
    • Acknowledge FASD as a disability 
    • Research mainstream prevalence and incidence rates of FASD and allocate resources accordingly 
    • Legislate for warning labels on all alcohol products to alert women of dangers of drinking during pregnancy 
    • Educate all health professionals in recognising, assessing and referral of patients with possible FASD 
    • Expand multidisciplinary diagnostic centres across the nation in conjunction with research monitoring and evaluation using the Gold Coast diagnostic clinic as the exemplar 
    • Provide FASD specific services and programs for those diagnosed with FASD and |or make FASD training mandatory for all staff likely to come into contact with people with FASD and their families 
    • Ensure all teachers can informally identify children likely to have FASD and understand their needs and interventions which will reduce likelihood of children acquiring secondary disabilities at school 
    • Recognise human rights of individuals with FASD and provide appropriate services and advocacy for those caught up in justice system.

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    The Pledge

    Stamp out the Stigma of birth mothers of children with FASD (Fetal Alcohol Spectrum Disorders)

    Petition text:

    I pledge to work to Stamp out the Stigma of birth mothers of children with FASD.  I join the rffada, NOFAS and the NOFAS Circle of Hope in supporting this campaign, and I believe:

    • Blaming and shaming birth mothers of children with FASD serves only to stigmatize women and their families and does not help to prevent FASD.  Having the courage to speak out as a birth mother and share one’s story takes courage and DOES help to prevent FASD. 
    • Women who drink alcohol during pregnancy and have a child with FASD nearly always fall into three categories:
    • They suffer from the disease of alcoholism and are unable stop drinking alcohol on their own
    • They are not aware that they are pregnant 
    • They are unaware or are misinformed about the risks of alcohol to their unborn baby
    • The stigma of birth mothers increases society’s indifference to FASD and is a major barrier to helping individuals living with the disorders. 
    • Women who use alcohol during pregnancy should be provided with appropriate medical intervention, support, and resources to recover from the disease of alcoholism 
    • When writing or talking about individuals living with FASD, people-first language should be used, placing the person before the disability.
    • When writing or talking about FASD, language describing the biological basis of FASD should be used (FASD is associated with prenatal alcohol exposure) instead of language describing a behavioural basis (FASD is associated with a woman’s consumption of alcohol during pregnancy). 
    • The NOFAS Circle of Hope peer-mentoring program exists to help women cope with their grief and remorse. Empowerment and support helps keep moms sober and helps to prevent FASD. 
    • Healthcare professionals are vital to FASD prevention and ending the stigmatization of birth mothers. They should ask female patients about their alcohol use in an open and non-judgmental manner. 
    • Incarcerating women does not prevent FASD. It increases stigma, ignores the possible lack of early awareness of pregnancy, and can prevent appropriate treatment for alcoholism and addiction. 
    • Biological, adoptive, and foster parents, caregivers, and everyone can be part of the FASD solution by learning about the disease of alcoholism and addiction, listening to the personal stories of birth mothers, and supporting the mission of the NOFAS Circle of Hope.

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    Criminalising Alcohol Consumption during Pregnancy

    The rffada does not support the criminalisation of alcohol consumption during pregnancy. The rffada strongly empathises with the many Australians living with FASD and their need for access to services, the staff of which have been trained in the delivery of FASD-friendly programs, interventions and strategies. The rffada advocates for FASD to be recognised by the government as a disability and urges governments at all levels to invest in interventions and direct assistance to individuals with an FASD. However, the rffada does not support the premise that an individual with a FASD is a victim of a crime and, therefore does not support any form of compensation that has the effect of criminalising alcohol use during pregnancy. 

    Paraphrased from a statement written by NOFAS

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    Study confirms dangers of fetal alcohol exposure

    Research led by Biology PhD student Ben Laufer, right, under the supervision of Biology professor Shiva Singh, has confirmed earlier findings that exposure to even low levels of alcohol during pregnancy impacts gene expression and molecular alterations in the brains of newborns.

    "Even a single binge dose of alcohol, at any time during pregnancy, results in alterations in gene expression and associated FASD-related (characteristics)," Laufer said.

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    AMA Alcohol Summit

    The Summit culminated in eight recommendations forming a Plan of Action for the Australian Government however, none mentioned FASD other than acknowledging it as one of the many effects of alcohol use.

    The rffada respectfully requests that the AMA considers the inclusion of a more robust and action orientated recommendation specifically for FASD comprised of 3 parts:

    1. An ongoing, national educational campaign which offers details on the benefits of abstaining while pregnant, before conception and while breastfeeding. Combined with this message will be details of the condition itself citing symptoms, signs and characteristics. This message will be given in such a way as to avoid panic but inform the public. A campaign such as this will serve to provide the audience [which will consist of a broad range of population, from teenagers to medical professionals], with a consistent message
    2. Have FASD acknowledged as a disability by the federal government.
    3. Reduce the frequency of mis-diagnosis of FASD so that children do not have multiple diagnoses which ignore the brain-based cognitive impairment of prenatal exposure to alcohol

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    Thank you to Fetal Alcohol Syndrome Information Network

    Peggy Oba and her family organisation The Fetal Alcohol Syndrome Information Network have made a welcome donation to the rffada. Thank you Peggy and family, this will mean printed brochures and posters to distribute to organisations and additional support for our parents and carers

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