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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 parents and caregivers 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 CONSULTANTS

The rffada collaborates with and supports the FASD Consultants, a group of people expert in the field of FASD each with  their own unique experience, perspective and expertise. The FASD Consultant's Website can be found at  http://fasdconsultants.com.au/ and the FaceBook group where you can ask questions of each Consultant, identify the specific expertise you need and work directly with the Consultant to discuss training options, consultancy and support services https://www.facebook.com/FASDConsultantsAustralia/.

The FASD Consultant's Flyer can be found pdf

 

SELF CARE RAPID AID MESSAGE SYSTEMS

[S.C.R.A.M.]

KEEPING OUR LOVED ONES SAFE

Providing access to a support network and medical information to front line services via any internet ready device while still maintaining privacy

Craig and Louise Wilson

 

When we began to understand the difficulties that our children would be experiencing, we also realised that other people must have similar issues and needs as we did, so we developed the RFFADA Library. The online library is a Face Book group the only purpose of which is to hold articles in reference to special needs.

We made another leap and realised that knowledge unused is lost. The library was for those people seeking answers, but not everyone who needed this knowledge was looking for it!

It is unlikely that the resource library would allow people with disability [particularly FASD] to communicate their needs to people in authority. We could see that something different was needed to meet the needs of people who had certain types of disability.

Through the RFFADA support group, we became aware of a number of situations where a lack of communication combined with a general lack of understanding, was causing critical incidents and exacerbating what should have been trivial incidents. A better way had to be found to solve the immediate needs of people with special needs such as FASD.

Problem:

With every special need comes the inevitable lack of understanding of how to best support someone in the most appropriate way possible. Strangers [professional or not] did not always have the knowledge they needed to assist someone in a stressful or unique situation.

Solutions:

A: Communicate basic ‘who am I information’ which includes information such as age, where the person lives, even their blood type.

B: Communicate ‘handling instructions’ for times of stress - how to understand and what to

reasonably expect from a person with a particular type of disability.

C: Provide access to ‘my support network’, people who know me ie doctor, friends and family 

D: Medical needs - a full description of clinically verified medical requirements including

medications, diagnoses [including secondary diagnoses], allergies and other conditions. 

E: Calling for help automatically - a message can be sent via SMS and/or email to a nominated person, advising them that something has happened and information has been accessed.

F: Privacy - general information can only be accessed up to a point without the individual’s Medicare number. Calling a contact, allows a person to choose who has access.

G: A full history of activity, including where, when and what type of information was accessed

H: Maintaining currency – General information and settings can be instantly updated on-line by a registered responsible person. A request to change certified medical details can be done at the same time, but a follow up practitioner verification is needed before going on-line.

With SCRAM you have 3 methods to accessing help. A door/window sticker informing first responders about the basic diagnosis faced by the individual inside the house. There is also a dog tag with a QR Code and access number which can be placed around the individual’s neck, on a key chain, or a bracelet. It accesses information via a QR scan, but is not immediately viewable to strangers for stranger danger reasons.

When scanned, a lost child is not only identified, but a message is sent to their next of kin advising that their tag has been scanned along with their location.

For adults, SCRAM also provides a credit card style card with a quick access QR Code [no extra number] that displays a message, provides a photo and name, while also sending a message. Not only providing a relationship contact list and reliable medical details, but also with the ability for the individual themselves to call emergency services with a description of address and a map.

SEND AWAY FOR YOUR S.C.R.A.M CARD BY VISITING

www.SelfCareRapidAidMessage.com

www.facebook.com/scramsystems

or by ringing

(Australia)

04 3269 7983

 

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If you could prevent brain damage in a child, would you?

This was the message I wrote a couple of months ago to see if we could fund the production of the first mainstream prevention message in Australia.

Guess what!!

We have been given the funding to make this happen thanks to My Pathway and several other wonderful people who donated via crowdfunding.

Shooting the video will commence mid-August.  Community Consultation has  identified some key messages needed to be said within this video.  If you have any suggestions or ideas about what the video should look like, please contact me on 0412550540. 

Thank you

Anne Russell

Executive Officer

Russell Family Fetal Alcohol Disorders Association | rffada

M: 0412 550 540 | W: www.rffada.org |A: P.O. Box 6795 | Cairns, QLD, 4870 | E: 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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CDC GUIDELINES 

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 mainsttream studies 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)
  •  

    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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    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 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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