Projet Photo-Voix TSAF

Connaissez-vous un adulte atteint du TSAF en Ontario (Canada) qui aimerait partager sa voix à travers un projet Photo-Voix sur le TSAF ?

Si c’est le cas, veuillez partager l’affiche ci-jointe / les informations ci-dessous et demander leur d’envoyer un courriel (en anglais) à fasd@oursacredbreath.com ou en français (si l’anglais représente un obstacle) à m.gabert@healthnexus.ca avant le 31 octobre.

De plus amples informations seront envoyées aux personnes intéressées / éligibles, mais il s’agit essentiellement d’un projet où vous prenez une photo qui représente un aspect de vous-même et du TSAF. Elle sera accompagnée de vos pensées (mots) sur ce que cette image représente pour vous.

Les images et les significations seront recueillies et partagées (de manière anonyme si vous le souhaitez) pour aider à faire connaître le TSAF.

Ce projet peut exister via une subvention de Nexus santé grâce au gouvernement de l’Ontario, c’est pourquoi seuls les adultes en Ontario sont admissibles. (Les places sont limitées).

Il n’y aura pas de compensation financière, mais vous recevrez une copie encadrée de votre soumission de projet et une copie de la vidéo terminée.

 

(en anglais) 2021 Dr. Sterling Clarren Award Applications Open

CanFASD is pleased to announce that we are now accepting applications for the 2021 Dr. Sterling Clarren FASD Research Award!

The Canada FASD Research Network (CanFASD) Dr. Sterling Clarren FASD Research Award has been named in honour of Dr. Sterling Clarren to recognize his pioneering contribution and leadership in the field of Fetal Alcohol Spectrum Disorder (FASD). The award is presented annually to a Canadian graduate student or early career researcher in recognition of a study that has made a substantial contribution to the FASD field.

For this award, preference is given to studies conducted in the CanFASD priority areas of FASD prevention, diagnosis, intervention, child welfare, and justice, in CanFASD member jurisdictions (British Columbia, Alberta, Saskatchewan, Manitoba, New Brunswick, Northwest Territories, Nunavut, and Yukon). However, studies conducted in other areas of FASD research (e.g., epidemiology, biomedical, animal studies) and other Canadian jurisdictions will also be considered. All studies must clearly integrate FASD research, policy, and practice, and demonstrate relevance to the human dimensions of FASD.

Applications may be submitted by graduate students, post-doctoral fellows, or early career investigators (within 3 years of first Faculty appointment). The research must be complete or near completion (i.e., data collection and analysis phases are complete). Studies may be submitted for publication, in press, or published, however, but will only be considered within one year of publication date.

This year’s applications are due by December 4, 2020. The award recipient will be invited to present their research in the Spring of 2021 and will receive a cash prize of $2,000.

Check out CanFASD’s website to find application instructions and read about previous Dr. Sterling Clarren FASD Research Award winners.

(Source article)

(en anglais) National Poll (UK) Shows Support For Access To Key Information For Diagnosis Of FASD

(London) – A new poll shows that 91% of women and 85% of men believe that children should have access to information about harm done to them in utero to help them get diagnosis and support (only 1% of women disagreed or strongly disagreed and 2% of men). 85% of women and 74% of men believe drinking alcohol in pregnancy should be noted as part of routine antenatal care (only 5% of women and 6% of men disagreed or strongly disagreed). These finding show massive public support exists for the intent of the draft Quality Standard on Fetal Alcohol Spectrum Disorder (FASD) being produced by NICE, the National Institute for Health and Care Excellence. FASD is a relatively unknown neurodevelopmental condition which experts say is more prevalent than autism but often undiagnosed.

According to Joanna Buckard of the National Organisation for FASD, which commissioned the poll, “This poll strongly suggests that framing of these discussions is important. While we understand the limits of this sort of poll, these results reflect what we’ve been hearing from members of the public and experts for years. Information about exposure to alcohol in pregnancy is the first step toward diagnosis and is needed for the more than 90% on the FASD spectrum without the distinctive facial features. Every child with a disability has the right to the correct diagnosis. Having the right diagnosis can be the key to understanding and support. This can be life changing.”

Dr Cassie Jackson of the Centre for FASD in Suffolk said, “Lacking this key information when children come for assessment can mean the difference between receiving a diagnosis that will facilitate appropriate support from services moving forward; and continuing undiagnosed, leaving children and young people potentially misunderstood for a lifetime. Accurate documenting of alcohol use during pregnancy is absolutely necessary for timely and accurate diagnosis.”

(Read more…)

Le CCDUS se voit confier l’actualisation des Directives de consommation d’alcool à faible risque du Canada

Ottawa, 17 septembre 2020 — Le Centre canadien sur les dépendances et l’usage de substances (CCDUS) est à la tête d’un vaste projet collaboratif visant à actualiser les Directives de consommation d’alcool à faible risque du Canada d’ici mars 2022.

Ce projet de 20 mois auquel participeront de grands experts scientifiques, des chercheurs, des spécialistes de la mobilisation des connaissances et des représentants des gouvernements fédéral, provinciaux et territoriaux et d’organisations nationales, sera piloté par le CCDUS et bénéficiera d’un soutien financier de Santé Canada.

Les premières directives canadiennes ont été rendues publiques en novembre 2011 pour aider les Canadiens à prendre des décisions éclairées par rapport à leur consommation d’alcool. Le travail fait permettra d’actualiser les directives pour qu’elles reflètent les plus récentes données probantes et tiennent compte des besoins propres à certains groupes qui risquent particulièrement de subir des méfaits liés à l’alcool, comme les jeunes, les femmes, les aînés et les personnes souffrant de maladies chroniques.

La ministre fédérale de la Santé, Patty Hajdu, a assisté à la première réunion du projet ce jeudi.

Rita Notarandrea, première dirigeante du CCDUS : « Le CCDUS est heureux de piloter ce projet visant à actualiser les Directives de consommation d’alcool à faible risque du Canada d’ici mars 2022. Nous remercions la ministre Hajdu et Santé Canada de financer cet important projet et d’en avoir confié la réalisation au CCDUS.

« Les directives actuelles sont un outil essentiel qui aide les Canadiens à évaluer leur consommation d’alcool et à prendre des décisions éclairées à ce sujet. Depuis leur création en 2011, il y a eu une importante évolution des données probantes sur les effets de l’alcool sur la santé et sur son rôle contributif aux méfaits sociaux. Les nouvelles directives tiendront compte des plus récentes données disponibles et placeront le Canada à la fine pointe de la recherche.

« Ces directives révisées pourraient aider à établir un corpus de connaissances utiles pour l’élaboration de politiques et la sensibilisation du public, mais seront surtout un outil pratique pour la population canadienne », a-t-elle conclu.

(Lire plus…)

(en anglais) What FASD Means to Me

FASD to Caregivers is what is happening in this moment. As my journey over the last 30 years has taken me to many places, from hope to despair and back again, it is hard to say exactly what FASD is to me. At one point it was the all-encompassing changing and managing of the world around my family to ensure some level of success and positivity existed. At other times it was isolation as a family unit to keep my own sanity and (what I believed) my children’s safety – physically, emotionally, mentally and spiritually. As a caregiver, my focus has changed as the seasons in my children’s lives have changed. Thankfully, the extreme challenges of behaviours changed because I learned how to think differently about these behaviours: think brain first.

In hindsight this has always been true. The challenges I have experienced over that last 30 years were challenges until I learned what was happening and how it was being interpreted by my children. So now it is my knowledge and “wisdom”, gained through practice and supporting my children, that determines what the challenge will be. I have control over what I consider “challenging”. If I don’t have the energy to “be on” and “think differently”, then life is definitely more challenging.

Over the years – and doing some caregiving for our 400 plus individuals we have supported through the agency I work with – caregiving took on many different roles. It could be simply managing funds or being the ear that parents need to vent to or run things by. Caregiving means being there no matter what, whether it is your children or those you support, be it individuals or parents. Caregiving is loving unconditionally; riding that rollercoaster of behaviours, addictions, parenting, community and 24/7 needs, hoping that the rollercoaster has time to stop once in a while.

(Read more…)

(en anglais) COVID-19: Back to School Tips for Children with Disabilities

While parents and guardians are normally apprehensive at the start of the school year, this year brings new and never before seen challenges. With the COVID-19 pandemic, parents and guardians are wondering whether to send their children to school or opt for online learning, and if their child will be attending school in-person, what measures are in place to ensure that their child stays safe. These challenges are exacerbated for children with disabilities.

The Ontario Ministry of Education has no comprehensive reopening plan – it is up to each school board to develop its own plan for returning students, including students receiving special education supports and services. It would be best to consult with your school board to see what strategies are being implemented to help students transition back to school.

That being said, no matter what school board your child belongs to, here are some general tips that could be useful to ensure a successful return back to school for a child with a disability:

  1. Contact your child’s school now – don’t wait for the school to contact you! Ideally, you should share your child’s needs with the school before the school year begins, and update them on any changes since the pandemic began. Some factors to consider are:
    • Social interaction;
    • Behaviour;
    • Health and mental health;
    • Learning – such as skills that have been lost or gained;
    • Technology needs – including not having the proper devices for online learning;
    • Remote learning needs – such as issues with virtual platforms; and
    • Needs specific to COVID-19, such as assistance or supports required for social distancing, wearing a mask, or handwashing.
  2. Ask to meet with the child’s teacher, principal or other supports to discuss your child’s needs. Remember that meetings can be held virtually, which provides more flexibility to parents and guardians.
  3. If your child will be attending school in-person, try to coordinate an early visit so that they can get used to their physical surroundings.

(Read more…)

(en anglais) Next Steps for FASD Awareness

Dedicated to improving knowledge and understanding of this disability and celebrating the successes of those with FASD, the month of September is full of events and activities for everyone.

Creative ways to celebrate

Despite the changes a global pandemic brings, people all across Canada banded together to celebrate FASD Awareness Month. From socially distanced awareness walks to viral videos and everything in between, the FASD community has found some very creative ways to raise awareness.

The FASD community takes on the Don’t Rush Challenge in celebration of FASD Awareness Day

Saskatchewan officially proclaims September 9th as Fetal Alcohol Spectrum Disorder (FASD) Day

Foothills Fetal Alcohol Society puts 99 red balloons around their town to raise awareness of FASD

Government House in Newfoundland glows red in honour of FASD Awareness Day

Virtual FASD Awareness Day Pow Wow in Thunder Bay a huge success despite COVID-19 challenges

Face masks in Saskatchewan promote changing the conversation and challenging the stigma surrounding FASD

Federal, provincial, and territorial governments weigh in

We saw a lot of headlines about FASD month in newspapers and online media journals across Canada, including some exciting announcements from federal and provincial governments.

The Government of Canada has officially declared September as FASD Awareness Month. Canada’s Chief Public Health Officer, Dr. Theresa Tam, also acknowledged September as FASD Awareness Month in a public statement. She highlighted the importance of continuing to encourage healthy pregnancies and healthy families during the COVID-19 pandemic and warned of the risks of drinking alcohol during pregnancy.

The Government of Ontario announced $3 million annually in funding to support people with FASD. The investment initiatives include providing more FASD support workers, implementing workshops to help families develop support skills, increased training for service providers, caregiver and family support groups, and a public awareness campaign.

Alberta’s Minister of Community and Social Services, Rahan Sawhey, announced that the Government of Alberta has declared September 9th Fetal Alcohol Spectrum Disorder Awareness Day. Alberta now joins many towns, cities, provinces, and territories across Canada who devote September 9th to FASD Awareness activities. The Minister reminded us that we all play a role in supporting expectant mothers to have healthy pregnancies and she highlighted the work of the 12 FASD Service Networks across the province of Alberta, as well as the work of CanFASD.

(Read more…)

(en anglais) Fetal alcohol spectrum disorder amid COVID-19: Fewer services, potential boost in rates

Fetal alcohol spectrum disorder (FASD) is the leading developmental disability in Canada. Despite its preventable nature, there is concern among FASD researchers about a potential increase in FASD prevalence rates as a result of COVID-19, in addition to the impact the pandemic is having on the community.

FASD is a lifelong disability affecting people who were exposed to alcohol prenatally. In Canada, more people have FASD than autism spectrum disorder, cerebral palsy and Down syndrome combined.

Current rates are conservatively estimated to be approximately four per cent in North America. However, FASD is very challenging to diagnose, and many experts believe that its prevalence is actually much higher.

COVID-19 compounds challenges in this community
Anecdotally, we know that individuals with FASD and their families are facing increased challenges as a result of this pandemic. Caregivers are concerned about a lack of supports, disruption in daily routine and mental health challenges.

Canadians with disabilities have drawn attention to their exclusion from COVID-19 messaging, as well to program cancellations and experiences of social isolation.

While these disruptions can have a negative impact on all individuals, they can have greater consequences for individuals with FASD and their families. People with FASD thrive with consistency and routine, but the pandemic has caused massive changes to our daily lives.

There is also concern about the future impact on mental health. While this body of evidence is still unfolding, parents reported changes in their children’s emotional state in a recent preprint manuscript (a preliminary paper that has yet to be formally reviewed), including difficulty concentrating, boredom, irritability, restlessness and nervousness. Experiences of parenting stress are also higher during COVID-19 among families reporting these emotional changes in their children.

These findings are concerning, especially for families of individuals with FASD who report higher levels of parenting stress compared to families of typically developing children and even those of children with other disabilities.

(Read more…)

(en anglais) Manitoba launches FASD pilot program to help young adults get diagnosed

Manitoba is launching a pilot program to help young adults get access to fetal alcohol spectrum disorder assessment and diagnoses, starting with those who have been involved in the criminal justice system but unable to access special supports that require a diagnosis.

« Our government believes improved access to FASD assessments will provide better outcomes for participating young adults, the justice system and our communities, » Justice Minister Cliff Cullen said in a news release Wednesday.

When the three-year pilot program launches in October, it will connect adults age 18-25 with assessment and diagnosis services from the Rehabilitation Centre for Children, including a multidisciplinary team of experts already responsible for FASD diagnoses for youth in Manitoba.

The first clients are expected to be young adults who are involved in the justice system but couldn’t get assessed for FASD before they turned 18, and were therefore shut out of a provincial court serving young offenders with FASD diagnoses.

Until now, only youth under age 18 have been able to get diagnosed with FASD in Manitoba, with few exceptions.

« People with FASD struggle to understand the consequences of their behaviour, and they often end up involved with the justice system, » said provincial court Judge Mary Kate Harvie, who helped create the province’s current FASD Justice Program, in the news release Wednesday.

« Assessment and diagnosis is the first step in helping to connect those with FASD with the additional supports they need. »

‘Much-needed support’

FASD, or fetal alcohol spectrum disorder, is a diagnosis that describes the impacts on the brain and body of individuals who were exposed to alcohol in the womb. Those impacts range widely between individuals, but can include challenges with motor skills, physical health, learning, memory, attention, communication, emotional regulation and social skills.

The new pilot program is modelled off the province’s existing FASD Justice Program, led by the Provincial Court of Manitoba alongside the Manitoba FASD Centre, the Manitoba Adolescent Treatment Centre and Manitoba Justice, provincial officials say. The program helps connect youths age 12-17 with assessment, diagnosis and support services — and once they’re diagnosed, young offenders can access a special disposition court for people with FASD.

(Read more…)

L’aéroport Pearson devient le premier aéroport au Canada à offrir le programme Cordons de tournesol

« Nous nous efforçons d’être plus inclusifs à l’égard des passagers de tous âges et de toutes capacités afin de leur offrir une expérience de classe mondiale. À cette fin, nous avons lancé le programme Cordons de tournesol pour les voyageurs ayant un handicap invisible. »

Le handicap d’une personne n’est pas toujours visible pour les autres. Les handicaps invisibles peuvent comprendre l’autisme, l’arthrite, la fatigue chronique, la santé mentale, l’ensemble des troubles causés par l’alcoolisation fœtale, les troubles de la parole, les troubles d’apprentissage et autres.

En portant un cordon de tournesol, les passagers pourront signaler au personnel de l’aéroport qu’ils pourraient avoir besoin d’un service supplémentaire ou de plus temps pour effectuer les activités associées à leur voyage dans l’aéroport. Le cordon, qu’on peut voir à distance, offre tout de même une intimité à la personne qui le porte, car elle n’aura pas à divulguer la nature de son handicap invisible au personnel.

C’est à l’aéroport de Gatwick que le programme Cordons de tournesol a vu le jour en 2016. Le programme a par la suite été déployé dans d’autres aéroports et espaces publics en Europe et dans le monde.

Les passagers peuvent se procurer un cordon de tournesol aux comptoirs d’information des aérogares 1 et 3 ainsi que dans la zone des objets perdus de l’aérogare 1 ou en faire la demande avant de voyager par la poste à l’aide de notre formulaire en ligne, au moins 14 jours avant le voyage.

(Article source)