Lack of FASD services has devastating impact on Guelph couple

Lack of FASD services has devastating impact on Guelph couple

A Guelph couple who adopted their son when he was three-weeks of age were forced to surrender their parental rights of their son in an effort to ensure their son would receive supportive services for his FASD diagnosis.  The couple and their son, who remain unnamed, lived as a family unit for fourteen years.  During this time, the adoptive parents revealed that they experienced many difficulties with their son’s violent outbursts.  After attaining a diagnosis of FASD for their son when he was a toddler, the couple felt confident that they would be able to access supportive resources for their son.  The couple was devastated to discover the lack of supportive services available to them.  They found that the only supports available to them came as a result of their son’s “autistic tendencies” and failed to address behavioural concerns stemming from the organic brain injury resulting from FASD.

Ultimately, the couple felt compelled to terminate their parental rights, thereby making their son a Crown ward.  Feeling unable to cope with the developing behaviours of their son compounded by the lack of social supports, the couple approached Children’s Aid and the recommendation to them was to follow through with terminating their parental rights to their son.  The son has been placed in foster care and will be moved into a treatment group home where he will have access to FASD services.

This case highlights the lack of accessibility to services for individuals and families affected by FASD.  Though the access to services was mediated by the intervention of the state, the process of accessing these services meant removing an adolescent from his home and from his family.  The question then remains: how do we allow for families to access services for children with FASD diagnoses while maintaining their involvement with their children?  And if the supports exist, what is their value to the families who could benefit from them if they are inaccessible outside of state intervention?  This is one instance of individuals who have been failed by the existing supports for those with FASD diagnoses, and signals a need for more accessible resources in communities across Canada.

-Alexandra Johnson

FASD: The missing diagnosis


By: Sue Gaberiel, Cheboygan Daily Tribune, 24 October 2014

Accessed on: 27 October 2014

Commentary by: Robyn Morin

This article is the fourth edition of a four part series created to provide education and strategies for some behaviours that are associated with Fetal Alcohol Spectrum Disorder (FASD).

The author starts with a simple four step procedure that a child will experience within a classroom when preparing for an assignment. A child of average functioning will be able to successfully complete all four steps. A child with FASD will complete the first step, become distracted with something in their desk and will be unsuccessful in completing the assignment.

The author emphasizes a common behaviour associated with FASD known as “confabulation.” Confabulation “is filling in with what seems logical, because you can’t remember what actually occurred.” This is much different than lying where one will lie to cover up something they did in order to not be held responsible. At times, individuals with FASD are accused of lying when in fact it is confabulation.

Throughout the article, the author tells a story of a young girl with FASD and provides examples of her daily life in regards to step by step instructions and confabulation. The point is to illustrate strategies such as requests and one step instructions. When teachers, parents or supports use one step directions, the individual can be successful in completing a task. When you continuously use a multitude of one step instructions, an individual will be able to successfully perform these one step instructions from memory thus creating success.

The author ends the article stating that no amount of alcohol is safe while pregnant and FASD is 100% preventable; “If you are female and are going to drink alcohol, do not have unprotected sex, if you have unprotected sex, do not drink alcohol.”

CAMP UNITY: Help for children with Fetal Alcohol Spectrum Disorder

CLICK HERE TO ACCESS ARTICLE: CAMP UNITY: Help for children with Fetal Alcohol Spectrum Disorder

By: Michelle Ruby, Brantford Expositor, 21 July 2014

Accessed on: 25 July 2014

Commentary by: Krystal Glowatski

While the discussions around prevention are more popular than ever, one initiative is focusing on intervention. In Brantford, ON Camp Unity is being offered for the fourth summer. The camp takes in youth ages six to 18 who live with cognitive disabilities such as FASD. The overall goal of the camp is to fill the gap in learning caused by the summer break.

Campers do not have to be diagnosed to participate in the camp, although camp director Nicole Schween states that approximately half of the campers are diagnosed, while many display other problematic symptoms associated to FASD such as ADHD, learning disabilities, and behavioural issues.

The camp features lessons in an informal manner such that campers don’t necessarily realize they are “learning.” Many life skills are taught such as how to use technology, cooking, gardening, arts and crafts, and physical activities. From personal discussions with CBO workers in the world of FASD, it sounds like the campers strengths are being identified, rather than their weaknesses – an effective strategy that has been recommended time and again.

Additionally, the camp feature signs such as caution tape and stop signs, providing clear direction to campers. There is also a room where campers can go to calm down. While this space isn’t described in detail, to be effective with a child living with FASD, such a room should be minimal in stimuli.

While prevention is an important aspect in the approach to FASD, there is no way to 100% prevent FASD in today’s society. Initiatives like this are extremely important in helping those who do have FASD. The event hosted by Dr. Michelle Stewart that was held in Regina, SK in April 2014 focused on how to work with those who have FASD. We will soon be releasing the final report from the workshop titled “FASD at the Frontline: Dialogue and Strategies for New Outcomes,” which will feature many recommendations brought forth by our presenters and participants at this event. If you work at the frontline or know someone living with FASD, stay tuned for an informational and useful final report coming soon!

Cost of FASD will snowball: Ontario nurses

Cost of FASD will snowball: Ontario nurses

By: Craig Gilbert (London Community News), 14 Jan 2014

Accessed on: 14 Jan 2014

Commentary by: Krystal Glowatski

On Monday, two nurses from the Registered Nurses Association of Ontario (RNAO) presented a case to the Select Committee on Developmental Services, composed of MPPs from all three parties who must put together a report and recommendations for the legislature regarding a comprehensive strategy for children and adults with intellectual disabilities.

The message from the nurses was clear: Prevention is key; if Ontario doesn’t “get out in front of fetal alcohol spectrum disorder (FASD)… we’ll all pay a lot more down the road.”

The nurses made a point to highlight the extent of FASD costs and problems – both problems for the individuals and larger social problems.  They recognized that FASD isn’t only a health issue but also an education and justice issue.  Liberal MPP Soo Wong stepped in to highlight this point by stating, “You might label little Johnny as a behavioural problem when in fact he has a medical condition…  And it’s preventable.  Teachers are not familiar with this term and are therefore not properly supported in the classroom.  It’s not just about the health sector.  It clearly is an education, a justice issue: they intertwine.”

While BC, Alberta, Saskatchewan, and Manitoba have already created comprehensive strategies for dealing with FASD and mental health issues Ontario has yet to do so.  The nurses are calling on the government to set this into motion now.

Currently, FASD Ontario Network of Expertise’s (ONE) website states they are drafting one.

In these projects there is often a heavy focus on prevention.  But what about all of the individuals who have already been diagnosed?  Or worse yet – those who have FASD but don’t even know it.  What should be done about individuals who are in dire need of assessment, diagnosis, and services?

John Allen Rubio defense fails in attempt to recuse judge

John Allen Rubio defence fails in attempt to recuse judge

Mark Raegan, The Brownsville Herald (November 5th, 2013)(Accessed November 9th, 2013)

Commentary by Shauna Makie

Senior State District Judge Manuel Bañales ruled Tuesday, November 5th, that there was not sufficient evidence of prejudice to recuse 370th State District Court Judge Noe Gonzales of Hidalgo County. Gonzales was responsible for overseeing the case of John Allen Rubio, convicted of killing and decapitating three children in 2010 while under his care. The case was re-evaluated by Rubio’s habeas lawyer David A. Schulman regarding the impartiality of Gonzales to provide funding for an evaluation of possible Fetal Alcohol Spectrum Disorder diagnosis for his client. Mitigation specialists told Schulman that if Rubio suffered from FASD, the implications on his behaviours could be used to mitigate against the death penalty. It was the delay of funding which sparked Schulmans intentions to have Gonzales recused. Schulman said that by the time the funding had been approved by Gonzales, the experts had other obligations that further delayed their abilities to provide a proper diagnosis for Rubio.

Due to the severity of the case outcome being the death penalty, Bañales had agreed to hear the case, even though he—and Gonzales—believed that the court administration challenges do not support sufficient cause for deep-seated antagonism or favoritism regarding Gonzales’ final decision. In the closing of the case, it was ruled that there was not sufficient evidence to recuse Gonzales; and although the writ was submitted incomplete, and Rubio had attained some form of cognitive delay diagnosis, the case remained definitive and his fate left in the hands of the executioner.