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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 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

LATEST NEWS

NOFAS WEEKLY ROUNDUP

 

 

     
   

Volume 5, Issue 39

NOFAS News

Photos from NOFAS Gala Event

View photos from the recent NOFAS gala, featuring many leaders in the FASD field, renowned policymakers, ambassadors, and other distinguished guests.
 
Community News
Dog Treat Company Supports People with FASD

Lissie's Luv Yums is an organic dog treat company started by Lissie Clark, who lives with FASD.  Lissie's Luv Yums currently donates a part of their profits to the construction and opening of an FASD home. – KRTV News
 
New Hampshire Mother Honored for FASD Awareness Work
“Joyce Jorgenson, 66, has made it her mission to raise awareness about fetal alcohol syndrome and its prevention, in memory of her son… U.S. Sen. Kelly Ayotte, R-N.H., honored Jorgenson as a 2014 Angel in Adoption at a special ceremony on Capitol Hill in Washington, D.C., last week.” – Sentinel Source
 
Ontario FASD Diagnostic Services Can't Meet the Demand
Medical experts say a lack of diagnostic services in Ontario [Canada] is preventing people with FASD from reaching their full potential.  There are only nine locations in the province where a person can receive a FASD diagnosis for free.” – CBC News
 
Personal Stories
South Dakota Family Cares for Children with FASD

“A family in Newell specializes in the care of children with FASD.  12 little people now call Nora Boesem "Mom".  All were adopted, all fetal alcohol children.” – KOTA News
 
Adoptive Parents Struggle to Get FASD Diagnosis When Birth Mother is Dead
“They feel certain the mother of their three adopted children drank during her pregnancy… they believe it to be true because the children, aged 10, 9 and 5, all exhibit signs of Fetal Alcohol Spectrum Disorder.  But the adoptive parents fear they will never know for sure, because the only person who can confirm the mother drank while pregnant is the mother - and she is dead.” - Hamilton Spectator
 
Public Health/Policy
New FASD Program Builds Bridges Between Children and Police
“A new recreation program in [Canada] is changing the way police officers look at boys with FASD…. Boys Unplugged was launched on Saturday… For the first event, organizers paired ten youth with members of the Waterloo Regional Police and had them build race cars out of cardboard.” – CBC News
 
Research News
Red Wine Harms Fetal Pancreas, According to New Study
Scientists say red wine’s 'healthy' ingredient could harm the unborn child's pancreas. “Resveratrol - an ingredient of red wine once hailed the 'wonder drug' … has now been found to lead to developmental abnormalities in the fetal pancreas- a vital organ in the digestive system.” – Express
 
Alcohol Screening and Brief Intervention: A Clinical Solution to a Vital Public Health Issue This article is written by Nancy Cheal, Lela McKnight-Eily, and Mary Kate Weber of CDC. This piece appears in the September issue of the American Nurses Association’s (ANA) official journal, American Nurse Today for the column, Issues Up Close.
 
Recovery News
The Anonymous People DVD Now on Sale
This is a documentary film about recovery activism.  “The Anonymous People DVD is now 15% off through Faces & Voices of Recovery e-store using coupon code - recmonth14.”
 
Webinars
Child Welfare System and Adolescents with FASD October 2, 2014. 1:00 PM – 2:15 PM CST. “Presented by Sydney L. Gardner, President, Children and Family Futures, Inc. This webinar is especially geared to social workers and public health officials. Guest facilitator, Sydney L. Gardner, President, Children and Family Futures, Inc., will explore the issues that child welfare systems need to address to support adolescents with FASD and their families.”
 
The Impact of Prenatal Alcohol Exposure on the Eye and Vision October 22, 2014, noon – 1:30 pm CDT. “MOFAS will host a fascinating webinar presented by Dr. Ray Areaux an Ophthalmologist and professor at the University of Minnesota. The webinar will explore the impact of prenatal alcohol exposure and conditions, such as optic nerve hypoplasia. The webinar is designed for healthcare professionals.”
 
Webinar: FASD Basics October 29, 2014, 1:30 pm – 3:00 pm CDT. “MOFAS will present the FASD Basics designed to provide an introduction to Fetal Alcohol Spectrum Disorders. This webinar is designed for primary and behavioral health care providers, social workers, educators, and other professional who work with individuals with an FASD and their families.”
 
Events
Grit and Grace - A Professional Symposium on Women and Addiction Treatment October 8th in Minneapolis, MN. November 3rd in Chicao, IL. December 6th in Bonita Springs, FL. “A Professional Symposium on Addiction Treatment for Women Presented by the Hazelden Betty Ford Foundation REGISTER TODAY and receive copies of books authored by symposium presenters—including two just-released titles—as part of your registration package!”
 
Workshop: FETAL ALCOHOL & OTHER NEUROBEHAVIORAL CONDITIONS October 16, 2014. Portland, Oregon. “The workshop will educate you on the current status of research for identification and on a best practices approach for treatment and accommodations. The goal is to increase understanding, reduce frustration, and expand options. Case examples of successful diagnosis, treatment and accommodations are central to this training.”
 
2014 Alberta FASD Conference October 20-21, 2014. Edmonton, Alberta, Canada. “The Government of Alberta invites you to join us in this important multidisciplinary conference focused on FASD and its impact on individuals, families, communities and society at large. The conference will feature keynote presentations by Hayley Wickenheiser, Michael J. Kendrick, Peter Choate and Drew Dudley, and over 35 breakout sessions discussing the latest practices in FASD prevention, assessment and support.”
 
Struggling in School: Making Sense of IEPs, 504s, and Your Child's Right to an Education October 25, 2014. Calverton, Maryland. “Is your child struggling in school? Deciding how to take the next step in supporting your child's education can be a daunting task. Educational jargon, contradictory advice and excessive red tape only make the process more difficult. Adoptions Together has created a training to help clarify the process of helping your child receive an appropriate education.”
 
FASD: A Focus on Congenital Heart Defects November 4, 2014. St. Petersburg, Florida. This CME accredited course will provide current information on effects of alcohol on the developing cardiovascular system in addition to neural effects and the societal impact. Current research and studies will be addressed. Presenters include MOFAS Founder Susan Carlson, JD, Katherine Shea, PhD and NOFAS Vice-President Kathy Mitchell.
 
Conference: FASD and Human Rights November 13-14, 2014. Brooklyn Park, Minnesota. Registration is open for the annual FASD matters conference. This year’s theme is FASD and Human Rights. We have exciting keynotes planned for the event.
 

Please send suggested items for the roundup (events, articles, research) to This email address is being protected from spambots. You need JavaScript enabled to view it.

The content of the NOFAS Weekly Roundup does not necessarily reflect the official positions or views of NOFAS.

The NOFAS Weekly Roundup is edited by Andy Kachor.

 

 

 

Review of CLMIA Act - Discussion Paper released

 

A LONG awaited review of the Criminal Law Mentally Impaired Accused Act (the Act) has formally commenced with the Attorney General releasing his Discussion Paper yesterday.

The Western Australian Association for Mental Health (WAAMH) welcomes the release of the Discussion Paper and is pleased the opportunity for input is finally available.

The paper queries whether custody orders should be mandatory, whether Schedule 1 should be abolished or amended, whether the Act needs a statement of objects and principles, and whether the currently indefinite length of custody orders should be limited.

While pleased these issues have been raised, they should not be subject to debate. Changes must occur to ensure people are not detained under custody orders for longer than they would have been, were they convicted of the offence. Reform must enable the judiciary to make the most appropriate order in the circumstances - the full range of sentencing options available to those without disability or mental illness should be available.

While important processes, such as a right to appear before the Mentally Impaired Accused Review Board and a right to appeal the decisions made, are raised, the Discussion Paper does not go far enough in identifying the need to make the Board’s processes more transparent. People currently have no right to legal representation, no right to appeal or to request a review, and no right to reasons for a decision.

Also canvassed is whether specific provisions need to be made for children and young people.

The paper lacks consideration of some matters of utmost importance. People with lived experience and advocates have long called for change to the ‘executive model’ of decision making, which places release and leave of absence decisions in the hands of the Governor on advice of the Attorney General and the Mentally Impaired Accused Review Board. These decisions are not subject to review, nor appeal. It would be more appropriate if these decisions were made by an independent body, such as the courts.

Also missing from the Discussion Paper is a rights orientation, and legislating to enable the accused to the treatment, support and advocacy needs they and their families may need.

What the paper doesn’t touch on is the need for appropriate services and support for people with mental illness under the Act, but WAAMH is hopeful that these will be identified and funded through the forthcoming Ten Year Mental Health Plan.

WAAMH strongly encourages people with lived experience and the mental health sector to make a submission to the Review.
Submissions close on 12 noon, Friday 12 December 2014.

If you would like more information, to provide input to our work, or to discuss making a submission to the Review please contact Chelsea McKinney at This email address is being protected from spambots. You need JavaScript enabled to view it.
To support you in making a submission, WAAMH is also holding a forum, ‘Not guilty due to unsound mind: Achieving reform of the Criminal Law Mentally Impaired Accused Act’ on 27th October at The Rise, Maylands. Invitations will be sent out soon.

WAAMH is also developing a paper on reforms to the Act, which we will consult you about, and which may assist you in making a submission.
The Discussion paper is available here: http://www.department.dotag.wa.gov.au/R/review_of_the_criminal_law_mentally_impaired_accused_act_1996.aspx
The Attorney General’s media release can be found here: http://www.mediastatements.wa.gov.au/pages/StatementDetails.aspx?listName=StatementsBarnett&StatId=8646

 

 

ABC News

WA Chief Justice Wayne Martin has said it is not appropriate for people with foetal alcohol spectrum disorders (FASD) to be indefinitely locked up under laws for the mentally impaired charged with crimes.

His comments came as Attorney-General Michael Mischin considered a request from disability advocates for a review of the case of an Aboriginal man held in prison for almost 11 years without conviction.

The man, who cannot be named for legal reasons and is known as Jason, was charged with unlawfully killing his 12-year-old cousin in a car crash in 2003, but deemed mentally unfit to stand trial due to brain damage from solvent abuse.

One third of the 30-40 mentally impaired people indefinitely detained in the state's jails are Indigenous, according to the WA Aboriginal Legal Service.

ALS director of legal services Peter Collins has warned that number will rapidly increase because of the prevalence of foetal alcohol spectrum disorders in Aboriginal communities, which he believed was largely undiagnosed.

Justice Martin renewed his support for supervised release orders for people deemed unfit to plead and for a regular review of their status by the courts.

He said Aboriginal people were over-represented among people found unfit to plead and it was likely a significant portion suffered from FASD.

The options for the courts were limited, he said.

Locking them up for the rest of their life is not, I think, an appropriate outcome for people who suffer from a condition which was none of their doing, but comes about because of an excessive consumption of alcohol by their mother before they were born.

Chief Justice Wayne Martin

"We've got the choice between two extreme options. One is indefinite detention and the other is unconditional release," Justice Martin said.

A generation of young people with FASD was already coming through the courts.

"Locking them up for the rest of their life is not, I think, an appropriate outcome for people who suffer from a condition which was none of their doing, but comes about because of an excessive consumption of alcohol by their mother before they were born," he said.

FASDs involve a range of physical, neurological, behavioural, learning and cognitive disabilities caused by a mother's excessive drinking during pregnancy.

 

New laws needed: chief justice

 

Justice Martin said the problem with FASD was it could not be treated.

Instead affected people could be taught techniques to reduce the risk they posed to the community and could be placed in supervised, safe environments, he said.

The ALS and disability advocates, including Developmental Disability WA and First Peoples Disability Network, have called on the WA Government to allow the courts to issue supervised release orders for the mentally impaired.

Justice Martin, who has previously supported this measure, stressed it was up to legislators to introduce new laws.

He said judges and magistrates would find it helpful if there were more options, such as supervised release orders subject to mandatory participation in support programs and drug testing.

"What we're looking for, I think in cases like this, is a solution which best protects the community without unnecessarily interfering with somebody's liberty, having regard to the fact that it's been found they're not fit to undergo the trial process, so they're entitled to the presumption of innocence," Justice Martin said.

The problem with indefinite detention was that people were often jailed for longer periods than they would have been if convicted, he said.

Reviews of whether a mentally impaired accused person remains unfit to plead or stand trial are carried out by the Mental Impaired Accused Board.

Justice Martin supported calls by the ALS for this to change by allowing the same court which made the initial ruling to carry out the review.

There would be finite detention orders and regular two-yearly reviews in open court, where a person was provided with legal representation.

"I think it creates safeguards against somebody, as it were, being detained for a very long period as a result of decisions made by administrative officials, not by courts," he said.

The Mentally Impaired Accused Act is being reviewed and Mr Mischin has indicated people found mentally unfit to plead would be placed in disability justice centres.

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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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Posters and Brochures

If you are pregnant or thinking of becoming pregnant over the holiday season, dont drink.  The consequences could be far more than you could ever imagine.

 

rffada poster

    For a healthy baby, no alcohol while pregnant is safest!

 

If you need more or different information

If there is information on FASD which is not on this website please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it. .   I will source and upload the information that you require.  If you need it then others will too.

Information on this site from volunteers of the rffada is based on experience and is not made by medical personnel unless stated as such.  Additionally,we advise that the information contained in ths site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing health care professional/s.

Thank you

Anne

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