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

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

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

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


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

Mini pow wow honours mothers and late FASD advocate

THUNDER BAY— The Honouring Mothers Fetal Alcohol Spectrum Disorder (FASD) Awareness Day 11th Annual Mini Pow Wow, held Sept. 9 in Thunder Bay, featured an honour song for the late Dave Fulton to acknowledge his work with FASD.

“He is the original person who started FASIN, the Fetal Alcohol Support and Information Network, in Thunder Bay,” says Lynda Banning, fetal alcohol spectrum disorder regional program worker for Northern Superior Region with the Anishinabek Nation. “He retired five years ago and moved to southern Ontario and passed away, so we wanted to honour him because when he was here in Thunder Bay, he and his wife would participate in this event annually.”

Judy Kay, FASD worker with Children’s Centre Thunder Bay, says Fulton and his wife Margie started up FASIN about 20 years ago to help support parents who were raising children with FASD.

“About 20 years ago, there was not too many services out there for parents,” Kay says. “So Dave and Margie started FASIN to support parents in their journey to raise their children. The [FASD Awareness Day] planning committee thought about Dave and his wife Margie and all of the work they had done in Thunder Bay for parents and wanted to honour him with the honour song.”

Northern Superior Anishinabek Nation Regional Deputy Grand Council Chief Edward Wawia says it is important to support FASD Awareness Day because “our children are the future.”

“We have to get the message out there mainly to the mothers that are having alcohol or drug problems to get treatment, and at the very least, stop drinking [alcohol] until their child is born and continue [abstaining] after if they are breastfeeding,” Chief Wawia says. “With all due respect, get out and look after your children, look after yourselves and bring up your children right because we depend on them for our future.” (Read more…)

Re-post from Anishinabek News, by Rick Garrick, September 17, 2019

Conversation boosts honesty over drinking in pregnancy, study finds

A “conversational approach” is the most successful way of encouraging honest disclosure of drinking habits by pregnant women, a new study says.

This contrasts with previous research that had recommended midwives should use formal screening tools, such as structured questionnaires.

The new study, from Stirling and Edinburgh universities, said it was important to build trust.

It said the questions had to be flexible and not simply asked verbatim.

It is estimated more than 40% of women in the UK consume alcohol during pregnancy, despite there being no known safe level in terms of the health of their unborn child.

International guidelines recommend the use of alcohol screening and brief interventions (SBIs) in antenatal care to identify drinking and offer support to women to reduce the risks.

Typically, SBIs involve a short conversation with a midwife, while women who are drinking more heavily can be offered specialist support.

However, few studies have investigated their implementation.

Dr Niamh Fitzgerald, of Stirling’s Institute for Social Marketing, led the study.

She said: “Midwives used several strategies to facilitate honest disclosures, including taking a positive tone in conversations and exploring drinking habits prior to pregnancy or prior to when women realised they were pregnant.

“It was felt that these approaches helped build a trusting relationship between pregnant women and midwives and improved disclosure rates.”

Dr Fitzgerald said the study noted a decline in disclosure that coincided with the inclusion of additional, separate, questions about parenting capacity.

She said this raised the possibility that other questions, asked at the same time as alcohol screening, may affect disclosure rates.

On several occasions, midwives found reported alcohol use elicited through standard questions was lower than expected given the known levels of alcohol use in their local area.

Alcohol use in pregnancy can cause harm to the developing foetus, including growth restrictions, low birth weight, pre-term birth, and foetal alcohol spectrum disorders. (Read more…)

Midland mother knows how fetal alcohol spectrum disorder affects families

Debbie Simpson, a midland mother knows how FASD affects families. Her five-year-old stepson Dante Edmonds was diagnosed was FASD in March. He also lives with attention deficit hyperactivity disorder (ADHD).

Simpson also cares for 15-month-old Kanye McDanial-Kamara, who, while too young to diagnose, is already showing signs of a developmental disorder.

“All kids living with FASD end up with all different kinds of diagnoses before they are diagnosed with FASD,” said Simpson.

Simpson, Dante and Kanye marched around town on Sept. 9 — International FASD Awareness Day — to raise awareness about the disorder and the struggles that come along with it.

Her tour of the downtown included stops at Wendat Community Programs, town hall, the Southern Georgian Bay OPP detachment, MP Bruce Stanton’s office and MPP Jill Dunlop’s office.

“My goal is to bring awareness about FASD and to try and stop the stigma my boys have been subjected to,” said Simpson.

Fetal alcohol spectrum disorder is a term that describes the effects to an individual who was prenatally exposed to alcohol.

Although the risk is higher with heavy alcohol use, any amount of alcohol may affect or harm a developing baby. Alcohol exposure during the first trimester — perhaps before a woman even knows she is pregnant — can cause major birth defects.

Around four per cent of Canadians, more than 1.1 million people, live with FASD.

Common effects include memory difficulties, speech and language problems, impulsive behaviour, social difficulties, sensory challenges and physical problems.

“When Dante becomes upset about something, he can’t find the words he needs to use to be able to say that he is upset. He will go into a meltdown and start kicking and knocking things over,” said Simpson.

She would like to see more FASD supports and services brought to the north Simcoe area. Even if it’s something simple like a support group.

“I feel we have made a difference, but we need more supports here,” said Simpson. (Read more…)

From Research to Impact: How Efficient Are Our Health Interventions?

The challenges associated with neurodevelopmental disabilities can be complex, and families often access a wide range of specialized clinical, educational, and community-based interventions to help their children. But the reality is money is limited and competition to fund these interventions and services can be stiff. How efficient are our health interventions?

Being able to prove the efficiency and effectiveness of interventions is one way to ensure these critical resources are available for children with neurodevelopmental disabilities.

For example, if researchers can show that by accessing early interventions children with autism will use fewer resources later in life—thereby saving money in the long term—governments might be more invested in making these early interventions available.

The Health Economics Research Program supported by Kids Brain Health Network (KBHN) is focused on doing assessments in order to inform the allocation of funding, services, and supports for kids with neurodevelopmental disabilities.

“By realizing that the health system has a finite budget and you can only spend on so many things, economic evaluations provide some information around decisions on what to fund and what not to fund,” explains Dr. Jennifer Zwicker, director of Health Policy at the University of Calgary’s School of Public Policy, and lead of the Health Economics Research Program.

Most recently, Dr. Zwicker and her team completed a study looking at tools typically used to assess the value of interventions, which often informs resource allocation in health care systems. The study found that many of these tools have not been properly used or validated when looking at interventions specific to children with brain-based disabilities.

“The problem is this really limits our ability to do really robust evaluations,” says Dr. Zwicker. “I think the real implications of that are how do you make a case in government about funding or not funding something when you can’t even really do the evaluation in a meaningful way.”

While these findings don’t suggest that doing these critical evaluations is impossible, Dr. Zwicker says the work highlights a gap that needs to be addressed to ensure children and their families are able to access the supports and services they need.

The Health Economics Research Program has also been looking at the cost and health outcomes associated with several ongoing KBHN-supported projects as a way of providing context to the value of specific projects.

For example, Dr. Zwicker and her team have been working with KBHN investigators to articulate the value of FASD screening tools, including eye tracking and biomarkers. Factors for consideration will include the cost of administering the tools, their specificity, and their sensitivity in comparison to other methods already being used. (Read more…)

Making alcohol more accessible is a bad move

From The Waterloo Region Record, by Mary K. Cunningham, September 10th, 2019

Making alcohol more accessible is a bad move, the provincial initiatives to make it easier to buy beer and wine will increase the rates of fetal alcohol spectrum disorder.

So Rick Rabba, president of Rabba Fine Foods, sees alcohol sales in his stores as good for business?

It probably is good for his bottom line but as another part of Ontario’s headlong, ongoing, foolish rush to, in his words, “increase choice, convenience and fairness for those who enjoy alcohol and modernize beer and wine retailing,” the results are proving to be increasingly negative. Making alcohol more accessible is a very poor decision on the part of both the Wynne and Ford governments. Here’s why.

The rate of fetal alcohol spectrum disorder (FASD) in Canada has been shown to be much higher than what those of us who work in the field thought. More access to alcohol will increase it further. FASD is now recognized by experts as our most prevalent birth defect, bar none. In fact, studies from 2014-18 clearly show increased FASD incidence rates of two to four per cent (variation by study sample) and we are starting to realize that FASD or permanent brain damage caused by pre-birth exposure to alcohol in the womb probably surpasses all of the other common birth defects put together. Do we really want more FASD out there, especially when it is largely preventable?

Do our Ontario alcohol purveyors know that at least 40,000 children in Ontario’s schools have FASD? Do they want to add to this problem? Probably not. Junior kindergarten to Grade 4 students with serious behaviour problems are classic, textbook FASD. Students and educators getting hurt at school, classroom chaos and dropping test scores are just three of the many school problems caused by FASD. These children are damaged, not bad. None of this is their fault. To make matters worse, most educators (not all of them) and the Ontario Ministry of Education have no expertise in supporting and intervening with FASD effectively. In Waterloo Region, we wonder why the rates of homelessness have soared. Really? And yet our provincial government increases the availability of wine and beer. (Read more…)