(en anglais) Policy Action Paper: Toward a Standard Definition of Fetal Alcohol Spectrum Disorder in Canada

Toward a Standard Definition of Fetal Alcohol Spectrum Disorder

Language is a powerful tool which has been used to celebrate people, but also alienate populations of people. Individuals with disabilities have been faced with discrimination and stereotypes that separate them from the rest of society, including individuals with FASD. Using language that highlights the strengths and abilities of the individual, as opposed to only focusing on the challenges they face, allows society to change its perspective on FASD, and remove perceived limitations placed on individuals with FASD.

CanFASD has created a common definition of FASD to be used by Canadian governments, service agencies, and researchers. The standard definition aims to alleviate stigma and improve understanding of FASD, create consistent messaging, and change the societal perspective of FASD toward a strengths-based, whole-body approach.

CanFASD recommends the following definition when writing FASD policy or addressing services to individuals with FASD:

“Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe impacts on the brain and body of individuals prenatally exposed to alcohol. FASD is a lifelong disability. Individuals with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills to reach their full potential. Each individual with FASD is unique and has areas of both strengths and challenges.”

Read the full paper here to learn more about the importance of language and how we crafted our definition.

(en anglais) A court for people with FASD ‘a terrific’ idea: Friedberg

 A court for people with FASD?

Picture of Matthew Friedberg, advocate for a court for people with FASDA Manitoba court that specifically caters to people with fetal alcohol spectrum disorder (FASD) is a great idea that could work in Ontario, says Toronto criminal lawyer Matthew Friedberg.

“Any court that’s going to address these issues in a more acute way is a really terrific thing,” Friedberg, partner with Caramanna Friedberg LLP, tells AdvocateDaily.com.

According to a CBC News story, while it’s not known how many people in Canada have FASD, “Health Canada says it’s the leading known cause of preventable developmental disability in the country … research suggests that up to one-quarter of inmates in federal corrections facilities could have the disorder.”

The special Manitoba court, which sits one day a week, is smaller and quieter than usual courtrooms, the story states, with fewer distractions and visual images “to make sure offenders understand what’s going on.”  (Plus d’infos…)

(en anglais) Toronto Public Health releases report on risks associated with increased access to alcohol

Risks associated with increased access to alcohol.

The Province of Ontario recently announced changes to how alcohol is sold in Ontario. Evidence shows that increasing access to alcohol is associated with increased consumption and potential for alcohol-related risks. Following a request from the Board of Health, Toronto’s Medical Officer of Health has prepared a report for the July 8 Board of Health meeting and this report is now available as part of the meeting’s agenda.

Recent data shows that approximately four in five Ontario adults have consumed alcohol in the past year and the drinking trend in Toronto is similar. The average number of weekly drinks consumed increased from 3.3 in 1996 to 4.9 in 2017. Alcohol consumption patterns in Ontario are changing, especially among women, who are consuming nearly 90 per cent more alcohol today than two decades ago. Men still have higher rates of alcohol consumption, but women are catching up. (Plus d’infos…)

L’Ontario ajoute d’autres services de santé mentale et de lutte contre les dépendances à Ottawa

Le système de santé mentale et de lutte contre les dépendances de l’Ontario est déconnecté et l’accès aux services de qualité est inégal, ce qui rend difficile pour les patients et les familles de s’y retrouver au milieu d’un système très complexe et d’obtenir les services dont ils ont besoin. C’est pourquoi le gouvernement pour la population de l’Ontario protège ce qui compte le plus en ajoutant des services de santé mentale et de lutte contre les dépendances sur le terrain dans les écoles, les collectivités et les centres de santé. (Plus d’infos…)

(en anglais) Make Fetal Alcohol Spectrum Disorder a Priority for the 2020 Federal Budget

Fetal Alcohol Spectrum Disorder (FASD) must be a priority for the 2020 Federal Budget!

On June 13th, the House of Commons Standing Committee on Finance posted a news release inviting Canadians to share their input regarding the next federal budget. CanFASD urges you to make a submission in support of the CanFASD Research Network and the work that we do.  FASD is a major public health issue that affects over 1.4 million Canadians – more than autism, cerebral palsy and Down’s Syndrome combined.  Canada needs to do better on all fronts – awareness, prevention, diagnosis and interventions and supports.  Take this opportunity to let the Government know that Fetal Alcohol Spectrum Disorder (FASD) must be a priority for the 2020 Federal Budget.

You can find the link for submissions here. The deadline for submissions is Friday August 2nd at 11:59pm EST.

(en anglais) Adults with FASD – Priorities for Research

Adults with FASD – Priorities for Research

In 2018, at the 8th International Research Conference on Adolescents and Adults with FASD, held in Vancouver, BC, about 40 adults living with FASD met with researchers. We talked about what they needed to know and have in place so they could participate in research. We discussed what collaborative research is and the group indicated that they would like to be part of the development of research projects. They liked seeing research led by adults with FASD, such as the health survey completed by Myles Himmelreich, C.J. Lutke and Emily Travis.

Participants in the discussion had been subjects in research, but indicated that they had not received much information about the studies after they were completed. Adults in the group indicated that they wanted to participate in knowledge translation of the research. They could make sure that the research information would get into the hands of people with FASD in a way that they can understand. As part of the session, participants developed a list of their research priorities. (Plus d’infos sur Adults with FASD – Priorities for Research…)

(en anglais) ‘He looks so normal’: When it comes to FASDs, there’s no such thing as predictability

FASD and Alcohol Exposure

Plenty of parents argue with their teenagers about chores, schoolwork, and video games. Megan is one of them. Like other parents, the Kenai Peninsula mom sometimes clashes with her oldest son over video games, arguing with his siblings, and putting away his laundry. But at Megan’s house, there’s more than just teen angst at work. She sometimes watches her son get abusive and out of control. She sees him struggle to communicate. She braces herself for outbursts.

And she knows it’s not his fault.

Megan parents one of the unknown number of Alaska children who experience what’s known as a fetal alcohol spectrum disorder, or FASD.  “Some days are fine,” she said. “Others are a disaster.” (Plus d’infos….)

(en anglais) Mental Health and FASD – Still Fighting for a Future: Exploring 15 Years of Progress on FASD in Canada

Fighting for a Future-2004 and Are we still fighting for a future-2019
The first ‘Fighting for a Future’ Symposium held in 2004 identified six areas that needed action for change and needed further research and support for individuals with FASD. They were: 1) Homelessness, 2) Finances,  3) Physical and Mental Health, 4) Education, Programming and Employment, 5) Legal Actions and Addictions and 6) Family Support.1 During the 8th International Conference on FASD held in Vancouver early this year, CanFASD presented the progress of these six areas over the last 15 years, asking the question ‘Are we still fighting for a future?’.2 Shana Mohr, a training coordinator with the FASD Network of Saskatchewan who is also a parent and a member of the CanFASD Family Advisory Committee, presented an overview of the progress made in terms of Mental Health for individuals with FASD. In this blog post, we summarize the contents of the Mental Health section of the Are we still fighting for a future? presentation. (Plus d’infos…)

(en anglais) Canadian FASD Mentoring Project

Have you heard of the Canadian FASD Mentoring Project?
The purpose of this project is to raise awareness of FASD by providing workshops to Aboriginal Head Start sites in Urban and Northern communities (AHSUNC) across Canada. A group of FASD mentors from across Canada has been trained to deliver these workshops. During the workshops, mentors will share information about alcohol, pregnancy, FASD, and strategies for working with individuals who may have FASD and their families.

Canada has 134 Aboriginal Head Start Urban and Northern off-reserve sites in Canada. These sites provide community-based early intervention, preschool, or daycare services to Indigenous children and their families.

Many ASUNC projects are located in remote areas where on-site training is particularly hard to come by. Having FASD Mentors travel to these communities is a valuable opportunity.

(Plus d’infos sur le Canadian FASD Mentoring Project…)

(en anglais) F words in Childhood Neurodisability

Childhood Neurodisability – FASD

The 21st century is witnessing a sea change in our thinking about ‘disability’. Nowhere are these developments more apparent than in the field of childhood disability, where traditional biomedical concepts are being incorporated into – but expanded considerably by – new ways of formulating ideas about children, child development, social‐ecological forces in the lives of children with chronic conditions and their families, and ‘points of entry’ for professionals to be helpful. In this paper, we have tried to package a set of ideas, grounded in the World Health Organization’s International Classification of Functioning, Disability and Health (the ICF), into a series of what we have called ‘F‐words’ in child neurodisability – function, family, fitness, fun, friends and future. We hope this will be an appealing way for people to incorporate these concepts into every aspect of clinical service, research and advocacy regarding disabled children and their families. (Plus d’infos….)