Fetal Alcohol Spectrum Disorder (FASD) resources are a lifeline for families raising children with the neurodisability. But many Francophone families are cut off, simply because those resources can’t be found in French.

The Fetal Alcohol Resource Program, a KBHN-funded organization, has been providing FASD resources, education for professionals, and service navigation in the Ottawa region since its inception in 2015. While their services were mainly in English, over the past year, they have expanded to offer service navigation and educational resources in French.

“It allows us to make sure that we’re not missing anybody,” says Nancy Lockwood, an FASD Coordinator with FARP. “We find so many times, families have already been searching for FASD resources and they’re already feeling frustrated and isolated and confused. We didn’t want them reaching out to us and having to say, ‘sorry we can’t help you.’ With our bilingual FASD worker, Maude Champagne, we were able to expand our impact.”

In the past year, there have been a lot of movement in Ontario for both the Francophone and the FASD communities. Last year, the Ontario government started to implement the Ontario Fetal Alcohol Spectrum Disorder Strategy, which included the projected creation of an FASD resource hub and hiring of 50 FASD workers, some of whom had to be bilingual.

Additionally, this past July, the Ontario French Language Services Commissioner, Francois Boileau, released his 11th Annual Report, which looked at the projected declining proportion of French-speakers and advocated for more development of Francophone communities and services. The report raised multiple concerns, including concerns that access to services and programs for French-speaking communities would decrease.

This intersection of high-level policies has highlighted a population that is often linguistically isolated, under-resourced: Francophone people living with FASD.

As International FASD Awareness Day approaches on September 9, FARP looks forward to reaching out to those people in its second year of expanding French capacity and outreach. In partnership with the Children’s Hospital of Eastern Ontario (CHEO), they are preparing to provide training, education, and support for more Francophone-heavy communities, including the Prescott-Russell and Stormont-Durdas-Glengarry regions.

“My hope is that when Francophone families want to access services, they will access services that are FASD-informed,” says Maude Champagne, the bilingual FASD worker with FARP. “We really want people to be served in their language and also have a point of contact, like an FASD worker, someone they can call and know they have a voice in French.”

Working to Raise Awareness and Support

FASD is already fighting for more public awareness and education. Champagne, who has degrees in education and social work, says that even there, FASD was never talked about.

“With FASD, they don’t teach the basics, so people have no clue,” she says. “It’s so stigmatized that it’s not talked about. It’s talked about more now, but many individuals don’t know what FASD stands for, they haven’t heard about it, or they think it’s not even real.

“Diagnostics can be very expensive for families, so many of them are not diagnosed. It’s a huge barrier.”

In the meantime, more than a million Canadians are thought to be living with FASD.

According to the Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD), 4% of Canadians are living with FASD. Specifically in Ontario, Dr. Svetlana Popova of the Centre of Addiction and Mental Health led a recent study that suggested that 2-3% of school children in the Greater Toronto Area – regardless of race, religion, or socioeconomic status – have FASD.

Ontario is home to the largest Francophone community outside Quebec, with 4.1 percent, or 550,600 people speaking French as their first language. In Ottawa, where FARP is based, roughly 16% of the residents report French as their first language and around 1% report French as their only language. In regions like Prescott-Russell, located between the City of Ottawa to the west, and the Quebec border to the east, 63% of the population reports French as their first language. Eleven percent of residents there report French as their only language.

Given the prevalence of FASD in Ontario, there are potentially thousands of Francophone people living with FASD.  But there are almost no FASD resources or services in their language.

“Before the federal government published on its website about a year and a half ago, there was not even a consensus on how to say FASD in French,” comments Champagne. “So it was a challenge for me to figure out which term we would use if everyone was using a different term. We worked really hard to make sure everyone was using the same lingo, the same accent, so we’re all on the same page.
“For Francophone communities, their services are more limited and being able to be served in their own language is a barrier. When people make useful, practical tools about FASD, whether it’s booklets or resources or tools, almost nothing is in French.”

“They are a population that hasn’t received as much support as English speaking communities in the past,” comments Lockwood. “Even then, I know that we haven’t had enough support for the English speaking community, but the situation is even more extreme for the French communities.”

Looking to the Future

“I think we wish we always could have been offering service in French, but when FARP first started, we didn’t know of anybody with FASD expertise that could offer bilingual service in Ottawa,” says Lockwood, who has worked at FARP since 2015. “Our goal was that the FARP team could also deliver services in French.”

Now, almost three years later, FARP has branched out to offer more FASD services and education to help fill the gaps in Francophone support. In addition to receiving calls in French, Champagne has also done FASD training programs with several French agencies and schoolboards.

This training is crucial to help people with FASD to receive a range of services that are aware of the neurodisability.

“Let’s say you have a child with FASD and they are struggling with anxiety, you’ll go to a mental health agency,” says Champagne. “If the agency is not trained on FASD, you’ll be given strategies that are not necessarily informed. So what we want to do is train all the agencies so that they know how to respond to families. Because we’re not able to do it all.”

This education and training are key services that FARP is planning to bring to Prescott-Russell and Stormont-Durdas-Glengarry, regions with notable Francophone populations. But there are already challenges. FARP is still looking for a bilingual FASD worker for the Prescott-Russell region, where over half the population speak French as a first language.

“To find someone who is bilingual, has some knowledge of FASD, who lives in a Francophone community and knows it well; it’s hard to find all three things,” says Lockwood. “I know we can find them, but it’s taking a bit longer than we realized.”

As FARP continues to provide resources for this community, they are not alone.

“We’re talking about a sizable population, that there is too much stigma attached to FASD and we know that there aren’t enough resources,” states Lockwood. “So I think it’s really time that we made sure that we’re also building capacity to support French-speaking families living with FASD.

I think we’re just starting to see more opportunities to get people educated on how to support this community in French.”