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CanFASD: The National FASD Database

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“This is the first time that Canada has had enough data to begin to really understand our FASD population – we have relied on data from other countries in the past.  Now we can see what the clinical profiles are for our own population affected by prenatal alcohol exposure, what their service needs are, and where and how we can put education, programs, and policies into place to meet the specific needs for Canadians.”

  • Jocelynn Cook, CanFASD Research Lead

CanFASD was recently in the news for its groundbreaking, comprehensive FASD database, the first of its kind in the world. Led by CanFASD Research Lead Dr. Jocelynn Cook, the National FASD Database provides key insights into the profile of Canadians assessed for FASD and highlights the demand for access to FASD clinical services across the country. Earlier this month, CanFASD announced the project in a news release, which was covered by many national news outlets.

The Database provides an integrated and coordinated approach to collecting information and characterizing the FASD population in Canada. Key information is collected on the challenges, strengths, and needs of Canadians who are assessed for FASD across the lifespan.

The Database has been active since the fall of 2016 and now has over 1,100 records from 25 participating clinics across 9 provinces and territories in Canada. Data is collected in a wide variety of areas, including:

  • Referral information
  • Demographics
  • Use of screening tools
  • Living situation
  • Family history of FASD
  • Other prenatal exposures, such as tobacco, cannabis, opioids, and cocaine
  • Sentinel facial features of FASD
  • Specific brain impairments
  • Individual strengths
  • Mental health history
  • Medications
  • Adverse outcomes
  • Formal FASD diagnosis
  • Other diagnoses and health issues
  • Support recommendations

Implications for Practice and Policy

The Database provides a wealth of information which has important implications for FASD policy and service delivery:

  • Gives us a better understanding of the specific difficulties, strengths, and outcomes across the lifespan that are experienced by people with prenatal alcohol exposure
  • Collects information about the demographics of people assessed for FASD, categories of FASD diagnosis, specifics of physical and neurobehavioural test results, and recommendations for interventions
  • Allows us to identify various trends and patterns related to FASD in Canada
  • Provides a structure for active communication and collaboration among all programs in Canada that provide FASD assessment and diagnostic services
  • Allows us to collect important information about individuals who are assessed for FASD but do not receive a diagnosis

“Collection of standardized data on children assessed for neurodevelopmental disorders across the country will provide evidence related to risk factors, interventions, and short and long-term outcomes. Comparisons in diagnoses made per capita and variations or similarity in treatment recommendations across jurisdictions will be highly useful in providing information to governments in developing improved policy and programming. This data will also provide important information to develop effective prevention messaging and interventions and supports for families.”

  • Kathy Unsworth, CanFASD Managing Director

The systematic and country-wide collection of FASD-related information allows us to understand the profile of Canadians with FASD, and better link interventions with areas of need. This information is also critical in helping us to identify gaps in practice and policy to better support individuals with FASD as well as the families and communities that support them.

The National FASD Database is supported by funding from Kids Brain Health Network and the Public Health Agency of Canada.

If your diagnostic clinic is not yet participating in the National FASD Database, we would love to have you join the project. Please contact Kathy Unsworth at kathy.unsworth@canfasd.ca for more information.

Stay tuned for more information as the Database continues to grow!

August 7th, 2018 Meeting Agenda

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Good morning everyone! Hopefully, you are out rocking your red shoes and helping us to educate and support our community in regard to Fetal Alcohol Spectrum Disorder.

Our next meeting date is Tuesday, August 7th, 2018 and we hope to see everyone there! Please click the agenda to download a PDF copy! August 2018 Agenda

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What Forensic Professionals Need to Know About FASD

This article is from Volume 1, Issue 3: FASD Special Edition of Forensic Scholars Today, a quarterly publication featuring topics from the world of forensic mental health. Click to view or save a PDF of this article.

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Fetal alcohol spectrum disorder (FASD) is a permanent, lifelong condition, resulting from exposure to alcohol in utero. Affecting between 2-5% of the population of the United States, FASD is a public health issue that results in impaired social, educational, vocational, and cognitive functioning.

These impairments sometimes result in difficulty functioning in accordance with the standards set forth by the United States criminal justice system. Not only are individuals with FASD significantly more likely to come into contact with law enforcement at some point in their lives, but most individuals with FASD are not diagnosed prior to their entrance into the criminal justice system.

There is currently no consensus as to whether FASD should be treated as a mitigating factor in sentencing or as an aggravating factor related to future dangerousness and the need for incapacitation or long-term supervision. Accurate and reliable screening of this population is, hence, a clinical and research priority.

The following are 12 key points that you are advised to take into consideration when discussing the topic of FASD in the criminal justice system.

  1. Difficult to Detect: Individuals with FASD may be difficult to identify, as morphological signs are not always present and cognitive deficits are difficult to detect using even standardized intelligence measures.
  2. Communication Deficits: Individuals with FASD may have difficulties cooperating with law enforcement officials due to receptive issues that could interfere with interviewing and their understanding of Miranda rights. Further, they may have difficulties assisting legal counsel in the development of a viable defense, resulting in a lack of competency to stand trial and/or understand their sentence.
  3. Superficial Talkativeness: The propensity for individuals diagnosed with FASD to be charming and talkative may lead law enforcement officials, lawyers, and judges to overestimate their level of competence and understanding of proceedings.
  4. Misinterpretation of Callousness: In some cases, behaviors resulting from FASD symptoms can be mistaken as a choice rather than a result of the disorder. The social and cognitive deficits of individuals with FASD may contribute to the misinterpretation of their alleged criminal behavior as premeditated or manipulative.
  5. Learning Problems: Individuals with FASD experience decision-making deficits that make it difficult for them to learn from past experiences and prospectively avoid dangerous people and situations. Such deficits are coupled with impulsivity and an inability to think strategically about decisions. Hence, FASD affects an individual’s ability to understand society’s norms and to behave within those norms.
  6. Inappropriate Sexual Boundaries: Individuals with FASD commonly experience problems with boundary awareness that result in inappropriate sexual encounters.
  7. Poor Memory: Individuals with FASD have significant problems in retrieving and communicating their memories, contributing to issues such as confabulation, false testimony, and false confession. The characteristic suggestibility of these individuals combined with a wish to please others may result in fabricating stories or overrepresenting abilities.
  8. Executive Functioning Deficits: Individuals with FASD have significant problems with attention, planning, and following social rules, resulting in a higher likelihood of contact with the criminal justice system and difficulties in complying with the requirements of community supervision (e.g., probation and parole).
  9. False Confession: Individuals with FASD experience social and cognitive deficits that result in disproportionately higher risk of false confession during interrogation and mistaken pleas during trial.
  10. Importance of Structure: Individuals with FASD perform better in well-structured settings with established schedules and behavioral norms. However, dynamic settings with less structure tend to result in considerable stress.
  11. Importance of Simplicity: Individuals with FASD perform better when tackling one task at a time, especially when tasks do not involve reliance on previous experience to complete.
  12. Problems With Treatment Adherence: Individuals with FASD may require specialized treatment given their social and cognitive deficits. However, treatment may be discontinued if not legally mandated.

As a permanent form of brain injury, FASD cannot be cured, only managed. And an essential first step in the management of FASD is its accurate and reliable measurement. This said, there is currently a lack of validated FASD screening instruments for use with forensic populations, especially adult offenders. Law enforcement, forensic mental health, correctional, and legal professionals are encouraged to work with researchers in this regard to help collect data that may aid to fill this important void.


Biographies

Jerrod Brown, M.A., M.S., M.S., M.S., is the Treatment Director at Pathways Counseling Center, Inc. Pathways provides programs and services benefiting individuals impacted by mental illness and addictions. Jerrod is also the founder and CEO of the American Institute for the Advancement of Forensic Studies (AIAFS), and the lead developer and program director of an online graduate degree program in Forensic Mental Health from Concordia University, St. Paul, Minnesota. Jerrod is currently pursuing a doctoral degree in psychology.

Jay P. Singh, Ph.D., is an internationally recognized researcher, author, public speaker, and educator in the field of forensic mental health. Having published over 45 journal articles, books, and chapters on research conducted in over 50 countries, Dr. Singh has lectured at Harvard University, Yale University, Columbia University, Cornell University, Brown University, Dartmouth College, and the University of Pennsylvania. Dr. Singh is Professor of Epidemiology & Violence Risk Assessment at Molde University College in Norway.

Retrieved from https://online.csp.edu/blog/forensic-scholars-today/fasd-forensic-professionals

In The News: Breaking the cycle, Edmonton woman plans alcohol-free parties at local clubs

Kaitie Degen is the founder of Sober Saturdayz. (Supplied by Kaitie Degen)

 

As a child, Katie Degen knew what alcohol abuse looked like. 

Her mother, who had struggled with addictions since age 15, found she was unable to care for her daughters, and sent them to live with grandparents in Kelowna. 
The grandparents, unable to afford both girls, placed Degen in foster care, where her unstable life continued. 
Drinking alcohol was “just something that always kind of went hand in hand with me throughout my life,” Degen said in an interview Friday with CBC Radio’s Edmonton AM.

Now 26, Degen said she knew she wanted to break the cycle.

“When I first started drinking less, I just really didn’t know what to do during the day,” she said. “I just would wait around until the night.” 

Sober Saturdayz

Degen is the founder of Sober Saturdayz, an initiative she’s introducing in Edmonton with an event at El Cortez on Aug. 25 (tickets for the event can be purchased online). 

She got the idea of organizing alcohol-free parties at venues across the city from her own friends. 

Kaitie Degen, pictured with her dog, started Sober Saturdayz because she wanted to live a more productive life and help others to do the same. (Supplied by Kaitie Degen)

 

“We all have this frustration,” she explained. “We wanted to socialize, but it had come to a point where we just didn’t know how to socialize without booze or substances.

“You can’t just be staying up late drinking every night for the rest of your life.” 

Degen, studying acupuncture at Reeves College, said support for the initiative was almost overwhelming at first, then began to dwindle. 

“What I realized is, people kind of have created this social anxiety without booze,” Degen said. 

She said she found people feared they would be left out if they didn’t imbibe. 

Redefining sober 

Through Sober Saturdayz, Degen hopes to redefine what it means to be sober. 

“You don’t have to be totally sober all the time,” she said. “Sobriety is personal. It’s different for everyone.” 

To Degen, sobriety is more about managing consumption.

“There really is no one to teach you how to use alcohol and things like that,” she said. “You’re told not to use it your whole life, and all of a sudden, OK, you can use it, and people binge. And then it gets to a point where it’s like suddenly, it’s a problem.” 

While Sober Saturdayz are intended to be alcohol-free, Degen said she hopes they offer people the confidence to make decisions about their own limits. 

Retrieved from https://www.cbc.ca/news/canada/edmonton/kaitie-degen-sober-saturdayz-1.4745501

IMPORTANT INFORMATION: Our Participation in the K-Days Parade

We have received the details concerning our participation in the K-Days Parade! If you have registered to walk with EFAN please take note of some important details!

  • We are entry #114
  • Please be at our assigned area not later than 9:30 am.
  • Access to our entry point is at 104 Ave and 105 St. Parking will be limited.
  • Please plan accordingly to park and walk to our meeting point.
  • The staging area will be on 108th street, and we line up according to our number (so look for #114)!
  • The event goes rain or shine so please dress for the weather.
  • Don’t forget to wear your shirt, hat, red shoes, umbrella, and whistle.
  • Bring water and snacks.
  • We cannot stop during the parade, a forward motion must be maintained!
  • The parade starts around 108 st and travels down Jasper Ave to 101 St (approximately 1.4 km).
  • If you have any question please email Lisa at lisa@rogozinsky.org
  • If you need assistance the morning of the parade please text Lisa at 780-919-0354

For more details about the parade please check out the Entrants Parade Day Manual: 2018 K-Days Parade – Entrants Parade Day Manual

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A Day in the Life of a Child With Executive Functioning Issues

Some kids have a really tough time getting organized and starting tasks. Planning, focusing and using working memory can be big challenges too. Use this visual guide to see how executive functioning issues can affect a child’s daily life.

By The Understood Team

Retrieved from https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/executive-functioning-issues/a-day-in-the-life-of-a-child-with-executive-functioning-issues

8 Magic Keys to Successful FASD Interventions: REPETITION & CONSISTENCY

Repetition – Individuals with FASD have chronic short-term memory problems; they forget things they want to remember as well as information that has been learned and retained for a period of time. In order for something to make it to longterm memory, it may simply need to be re -taught and re-taught.

Consistency – Because of the difficulty individuals with FASD experience trying to generalize learning from one situation to another, they do best in an environment with few changes. This includes language. For example, teachers and parents can coordinate with each other to use the same words for key phrases and oral directions.

Retrieved from http://haltonfasd.ca/wp-content/uploads/2015/09/8-Magic-Keys-to-Supporting-FASD.pdf and http://wrapschools.ca/support-4-students-success-cg.php

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