(en anglais) Why Dr. Brian Goldman bought cigarettes for his underage son who has FASD

On Friday, Dr. Brian Goldman found himself making a difficult decision.

In the interest of harm reduction, he wrote on Twitter, « I bought my first pack of cigarettes. Not for me. For my son. »

Goldman’s son is 17, and he has fetal alcohol spectrum disorder (FASD).

The condition can make learning from past experiences tough, and hinders a person’s ability to make good long-term choices, said Goldman, the host of White Coat, Black Art and an emergency room physician in Toronto.

Goldman spoke with Metro Morning host Matt Galloway about what compelled him to buy those cigarettes for his son, and the challenges of raising a child with FASD.

Here is part of their conversation.

Why did you buy cigarettes for your son?

It’s complicated, for many reasons. My son, a couple years ago, was diagnosed with fetal alcohol spectrum disorder (FASD). We adopted both of our children from orphanages in Russia. It was a highly personal thing. There are many different kinds of harm reduction. I could have bought him a Juul. I could have bought him a vape. But I thought that it would be very easy to turn him into the equivalent of a three-pack-a-day smoker with the nicotine levels that you can acquire, and I didn’t want him to get used to that and comfortable with that, so that if he received vape liquid from other people he would graduate onto other things.

The thing about a cigarette is that you smoke them, there’s a finite amount of nicotine in it, and there’s only so much he can afford. There’s only so much that he’s going to be able to acquire on his own. So there is some limit there. I suppose if he became the equivalent of a pack-and-a-half or a pack-a-day smoker, I might consider switching him, you know, buying him a vape. There are other harms. As an average teenager with fetal alcohol spectrum disorder, he’s got the full range of issues that kids face. (Read more…)

Re-post from CBC Radio, by Kirsten Fenn, November 12, 2019

Alcoolisation foetale : l’implication polémique des alcooliers

L’association SAF France, qui lutte contre les troubles causés par l’alcoolisation fœtale, vient d’annoncer un partenariat avec les alcooliers pour diffuser ses messages de prévention. Cet accord hérisse certains médecins et associatifs, qui y voient un problème éthique majeur.

C’est une nouvelle qui fait grincer des dents. L’association Prévention et Modération, qui réunit des organisations professionnelles de la filière alcool (brasseurs de France, fédération des spiritueux, fédération des vins d’apéritif) vient de conclure un partenariat avec l’association SAF France pour contribuer à la sensibilisation des femmes aux Troubles Causés par l’Alcoolisation Fœtale (TCAF). SAF France regroupe des experts de ces troubles (familles, travailleurs sociaux , gynécologues obstéticiens, pédiatres…).

But affiché des alcooliers : amplifier la communication du message  « zéro alcool pendant la grossesse », notamment à l’occasion des éditions du SAFTHON, l’opération de sensibilisation de l’association qui vise à récolter des fonds contre le TCAF.

Un soutien financier des alcooliers à SAF France

2.000 entreprises et 15.000 salariés de la bière, des spiritueux et des vins d’apéritif entendent ainsi contribuer à la prévention de ces troubles qui concerneraient 2% de la population. « Nous sommes partenaires avec SAF France, explique Alexis Capitant, porte-parole de Prévention et Modération. SAF France fait des choses très bien, mais manque de moyens. Dans les faits, nous leur versons une subvention pluriannuelle pour les aider à développer leurs actions, sans intervenir dans ces actions. Ce qui revient à faire du mécénat. »

Denis Lamblin, président de SAF France confirme la nature du lien entre son association et les alcooliers. « Nous avons reçu 250 000 euros pour 2019-2020, de la part de Prévention et Modération. Mais la convention qui nous lie est très claire et sans compromis. Leur seule demande, c’est que leur logo soit associé aux plaquettes et aux différents outils. »

Pour lui, les digues éthiques sont bien étanches. « Nous avons un comité scientifique indépendant et c’est nous qui dictons les messages de santé. Les experts font les propositions et les syndicats alcooliers leur donnent les moyens de les diffuser. Nous leur avons rappelé que ce n’était pas à eux de faire de la prévention, mais qu’ils pouvaient nous aider à en faire avec les gros moyens dont ils disposent. » (Lire plus…)

Republication de France Info, le 22 octobre 2019

(en anglais) Which Drug Is Actually The Most Harmful?

If someone asked you to bet on the drug that causes the most harm, which one would you pick?

Fentanyl, a drug 50 to 100 times more potent than morphine – so powerful, even, that it can cause an overdose in a single breath? Or crack cocaine, with nasty side effects that include paranoia, organ failure, seizure, and death?

The correct answer is neither of the above. According to a paper recently published in the Journal of Psychopharmacology, the most harmful drug is alcohol.

A team of 25 experts came to this conclusion after scoring 22 drugs on 16 criteria, using a scale of 0 to 100. In this case, 0 represented « no harm » and 100 signified « most harm ». The analysis was based on a similar study conducted in the UK in 2010 but had been adapted for an Australian context.

As with the original study, nine criteria were based on harms to the drug user. Think: drug-specific mortality, dependence, drug-related impairment of mental functioning, and loss of relationships. While the remaining seven were based on harms to others. For example, injury, crime, economic cost, and community. The criteria were then weighted to produce a final score.

The analysis found that the drug most harmful to the individual was fentanyl, with a part score of 50 (out of 50). The runner-up was heroin (45), followed by alcohol (41), crystal meth (24), and tobacco, or cigarettes (14).

But when harm to others was factored in, the list changed. Alcohol came top (combined score 77), followed by crystal meth (66), heroin (58), fentanyl (51), and tobacco (32). Straddling the bottom was kava (combined score 3), e-cigs (3), LSD and mushrooms (5), antipsychotics (7), and ecstasy (7).

Interestingly, both UK and Australian studies found alcohol to be the most harmful drug. In this study, it scored especially high on the criteria of economic cost, family adversity, injury, drug-related morbidity, and drug-specific morbidity. (Read more…)

Re-post from IFL Science!, by Rosie McCall, May 15, 2019

(en anglais) Campbell: Hiring qualified disabled workers is good for business – and society

October is National Disability Employment Awareness Month. It’s the official month every year for celebrating and recognizing workplace contributions of people who have a disability and the business successes they help create. But it is significantly more than that.

It represents a critical opportunity for all businesses to examine their recruitment strategies and make improvements. Statistics show many companies are still missing out on a vast untapped pool of employees: skilled people who have a disability.

The time for sourcing the disability talent pool is now. In 2013, the Conference Board of Canada projected the labour shortage could be one million people by next year. And according to a 2014 Miner Management Consultants report, it could be almost two million by 2031.

Then why isn’t business sourcing the disability talent pool more? The national employment rate of people who have a disability is 59 per cent, compared to 80 per cent of people without a disability.

As a nation, we’re really good at making our education system accessible for students who have a disability. In Canada, 50 per cent of people who hold a university degree have more than one disability. So do 67 per cent of people with trade certificates or college diplomas. But to what end are we making our universities and colleges accessible? Because the post-graduation roadblocks are up.

« Why isn’t business sourcing the disability talent pool more? The national employment rate of people who have a disability is 59 per cent, compared to 80 per cent of people without a disability. »

There’s a lack of career support services within our post-secondary institutions for graduating students who have a disability. On top of this, the unemployment rate of university or college graduates who have a disability is twice that of their non-disabled counterparts. And even when they are hired, there’s a huge wage gap. A 2015 study by the University of Guelph noted that just two years after graduation, graduates who have a disability earn $4,000 less than non-disabled graduates. (Read more…)

Re-post from Ottawa Citizen, by Jeannette Campbell, October 7, 2019

De faux diagnostics pour obtenir des services

Des pédiatres se contraignent à poser de faux diagnostics pour que les enfants atteints du trouble du spectre de l’alcoolisation fœtale (TSAF) obtiennent un minimum de services au Québec.

Selon le plus récent avis public émis par la Direction nationale de la santé publique du Québec (2016), 4 % des naissances seraient affectées par le TSAF.

Pourtant, au Québec, selon tous les intervenants contactés par Le Journal, aucun service spécifique n’est offert aux personnes souffrant de ce trouble.

C’est l’absence d’un tel service qui convainc des professionnels de la santé de ne pas reconnaître le TSAF pour plutôt diagnostiquer un trouble du spectre de l’autisme (TSA) ou même un trouble de déficit de l’attention et hyperactivité.

Ce faisant, les enfants obtiennent davantage de services avec ces troubles qui peuvent s’apparenter au TSAF, par ses symptômes.

« Parfois, on va poser des diagnostics en fonction de l’aide dont le jeune a besoin. Pour obtenir des services d’accompagnement dans une école, par exemple, auxquels [les personnes atteintes du TSAF] n’auraient pas accès », a indiqué la pédiatre à l’Hôtel-Dieu de Lévis Valérie Labbé.

« Pas surprenant »

Le pédiatre au Centre Hospitalier Beauce-Etchemin, Pierre-C. Poulin, abonde dans le même sens.

« Ce n’est pas surprenant. Le diagnostic de trouble de l’autisme permet d’obtenir plusieurs services, comme l’intervention intensive avec un éducateur. Sans compter l’aide substantielle obtenue à l’école. »

De plus, comme les traits faciaux caractéristiques du TSAF ne sont présents que dans 20 % des cas, son dépistage est loin d’être aisé au Québec. Sans parler de l’absence de clinique spécialisée dans ce domaine dans la province.

« Il y en a pourtant 46 dans le reste du Canada », a déploré Louise Loubier-Morin, mère adoptive d’une femme atteinte du TSAF et directrice du SAFERA, un organisme de prévention du syndrome de l’alcoolisation fœtale.

« Ça fait 20 ans qu’on essaie de rentrer au ministère de la Santé et des Services sociaux pour leur demander de se pencher sur la question, et il n’y a rien qui se fait. » (Lire plus…)

Republication d’Actualité Santé, par Jérémy Bernier, le 21 octobre 2019

(en anglais) Researcher to study Canada’s success in preventing fetal alcohol spectrum disorder

It takes a village to raise a child and an entire community to support pregnant women to grow healthy babies, says one University of Queensland researcher. This researcher is to study Canada’s success in preventing fetal alcohol spectrum disorder (FASD).

Associate Professor Deborah Askew’s newly awarded Churchill Fellowship will allow her to learn from urban First Nations communities in Canada and Alaska about how they have successfully reduced rates of FASD.

Dr Askew said FASD prevention strategies needed culturally appropriate and community-focused solutions.

“It is easy to blame the victim in all spheres of life,” she said.

“With FASD, it’s too easy to say that it is the woman’s fault and she shouldn’t be drinking alcohol. That’s part of the issue, but in reality, all of society is responsible for raising healthy children.”

Dr Askew said the Fellowship would allow her to bring back to Australia knowledge of successful programs that are working in Canadian and Alaskan First Nations urban communities, rather than having to start a new program from the ground up.

“A lot more work could be done in Australia,” she said. “FASD is not specific to Aboriginal and Torres Strait Islander people, but the hurt and trauma associated with the ongoing negative impact of colonisation, discrimination and racism means that some people use alcohol to dull the pain. And where there is a lot of alcohol, FASD will be there too. »

“Some amazing community-led programs have been established in Western Australia’s Kimberley region, but there are few programs in urban areas that have been published so that others can learn from them.”

Dr Askew said Canada had recognised the link between the Indian Residential School system, intergenerational trauma and the array of social ills plaguing the First Nations today, including fetal alcohol spectrum disorder.

“This echoes Australian policies that similarly took Aboriginal and Torres Strait Islander children away from their parents – the Stolen Generations. » (Read more…)

Re-post from The university of Queensland Australia | UQ News, October 16, 2019

(en anglais) Friday Night Heroes: Kirtland football player overcomes disabilities to inspire teammates, family

Kirtland football player overcomes disabilities: Nate Fellinger started plowing through expectations by playing several different sports, and he’s become incredibly popular around town.

KIRTLAND, Ohio — There’s a football player in Kirtland making big strides both on and off the field.

He struggles with a disability, but is teaching so many lessons.

You can usually find 17-year-old Nate Fellinger on the football field on Saturday mornings, behind a crowd filled with Hornet pride. He’s always loved the game.

« Running, tackling, getting other people, getting in the game, the usual. That’s what I like about football, » Nate said.

But getting to the field hasn’t been an easy road for Nate. He was born with fetal alcohol syndrome, and more than two months early. His future was anything but certain.

« We really didn’t know if he was going to come home from the hospital at all, » Nate’s mom, Kathy Fellinger said. « The nurses warned us not to expect too much for him. »

They were wrong: The Fellingers adopted him anyway, and Nate started plowing through expectations by playing several different sports. He’s become incredibly popular around town.

« Everybody knows Nathan, » Nate’s dad Steven Fellinger said. « They cheer him on, they make him feel wanted, they make him feel as part of the team. »

A team, Nate’s coach says, wouldn’t be the same without him.

« It’s not just that he’s on the team, but he’s contributing, he’s working hard, he’s making us better. I just want him to give his best every day, » Hornets Junior Varsity Head Coach Jeff Eckles said. « They know he loves the game. He’s got a passion for the game, and it makes them just want to work that much harder. »

His parents are forever touched by his ability to uplift his teammates and always bring positive vibes to practice. (Read more…)

Re-post from WKYC Studios, by Lindsay Buckingham, October 12, 2019

(en anglais) It’s Time for a National Disability Strategy

It’s time for all governments provincial, territorial and federal to work together to build a strategy to meet the needs of people with all disabilities at all ages and all needs.

We are asking candidates to support a National Disability Strategy that:

  • Ensures every child, youth and adult with a disability in Canada is supported and afforded equal opportunities in life.
  • Actively consults with disability self-advocacy groups to plan the National Disability Strategy with self-advocates as lead advisors of their needs in coordination with organizations who advocate for and provide services
  • De-siloizes autism and developmental disability services and fully integrate services for disabled people in the same portfolios that address other disabilities (such as employment and housing).
  • Includes supports for Service Transitions, Housing Strategy, Income Supports, Employment and Training
  • Independently collects data and studies best practices in other jurisdictions (NOT “data” by providers with a financial stake);
  • Audits all service providers and gives priority to those that support human rights, equity and self-determination—not segregation.
  • Enables Access and Accommodations for Augmentative and Alternative Communication (AAC) and American Sign Language (ASL)
  • Presumes competence –  a person with a disability has the ability to think, learn and understand
  • Simplify and widen access to the Disability Tax Credit to support more disabled people and their families
  • Begins with a firm launch date within 100 days of this election.  It’s time.

National Disability Strategy must include specific actions not just research and ideologies.

The Time is Now

Federal and provincial governments need to work together to ensure that the needs of  children, youth and adults with all disabilities whether physical, developmental, cognitive or psychological. Disabilities such as but not limited to Down Syndrome, FASD, Autism, Cerebral Palsy, Muscular Dystrophy, Chromosome Abnormalities and many other rare and unique diagnosis. We need all election platforms to advocate for a National Disability Strategy which is inclusive of ALL disabilities. (Read more…)

Re-post from National Disability Strategy, October 11, 2019

(en anglais) Pathways program helps those with fetal alcohol disorder

Nearly four percent of Canadians – or roughy 1.4 million people – are affected by Fetal Alcohol Spectrum Disorder.

A lifelong disability that’s often described as invisible, because only 10 per cent of those diagnosed have facial features that indicate FASD, individuals affected by the disorder can suffer from impairments ranging from diminished motor skills, poor attention skills and memory, a lack of language, curtailed cognitive ability or even significantly reduced executive functioning, making day-to-day living extremely challenging if not impossible.

Caused by prenatal exposure to alcohol, FASD is a condition that has flown under the radar for many years, partly because it is a spectrum disorder – no two individuals diagnosed with FASD experience the same challenges, making it difficult to clearly identify – as well because mothers have traditionally faced plenty of stigma when admitting to using alcohol during their pregnancy.

Even though FASD is two-and-a-half times more common than autism, public awareness is low and the stigma associated with the condition still remains.

Pathways Health Centre for Children resource worker Amber Arnold hopes to change that reality by speaking, creating programs and holding events to make Sarnia-Lambton into what she calls an FASD-informed community.

Arnold was hired to run Pathways’ FASD Resource Hub, as part of a provincial initiative launched in April 2018 to support families across Ontario deal with the disorder.

While Ontario was one of the last provinces to have a strategy in place to deal with people impacted by FASD, Arnold said it’s a case of better late than never.

“The goal of the strategy is to raise awareness about FASD … and to provide a range of resources and support for individuals and families who have received diagnoses or for those who suspect FASD,” she said.

“Our goal is to make Lambton County an FASD-informed community, providing access to support services and just kind of identifying that people who have FASD can be fully functioning members of society,” Arnold added. “We all have strengths and weaknesses; it’s just a case of putting the right supports in place for these people.” (Read more…)

Re-post from Sarnia & Lambton This Week, by Carl Hnatyshyn, October 10, 2019

(en anglais) FASD AWARENESS DAY 2019

While the movement started as International Fetal Alcohol Spectrum Disorder Awareness Day on September 9, 1999, it has grown over the last 20 years to many towns, cities, provinces, states and countries recognizing an awareness week and many are using the entire month to increase awareness. Even though we need to continue to spotlight and raise awareness and advocate year round, I thought it would be interesting, as the month wraps up, to highlight just a few of the incredible FASD awareness day 2019 events and activities I saw on-line.

It seemed this year there was more going on than ever before.

[… ]

Whether your day started with the quiet reflection of a bell concordance, or ended shining a light of red (Hamilton, Ontario) to remember that FASD is real….

We hope that you found support, inspiration and a sense of belonging. The day was magical – even the night – when Niagara Falls reflected Red Shoes Rock Red.

So if you feel alone and like you don’t make a difference, you do. FASDay started from an idea of one person to remind people to go alcohol free for nine months of pregnancy. One adult with FASD started to wear red shoes to remind himself that it was okay to be different … different is good … and it gave him confidence to start conversations. And now both these ideas have come together and spread across the globe. We absolutely have a long way to go, but if the indications of the coming together and awareness of this year are any foretelling of the year ahead, we know that Fetal Alcohol Spectrum Disorder will no longer be invisible. We will get the prevention and support that is needed.

The stories behind some of these events truly encompass what the movement is about. From Mackie’s Mom:

« We have a tradition to walk around the school square each year to raise awareness about FASD. To symbolize the end of the 99 day campaign where Mackie is telling the world about FASD. Today he was joined by his friends and teachers and others who rock their Red Shoes. » (Read more…)

Re-post from Our Sacred Breath, September 29, 2019