Senate bill for FASD framework trying to fix ‘cracks’ in care for the disorder

A Senate bill originally introduced nearly four years ago is calling on the federal government to produce a framework for fetal alcohol spectrum disorder emphasizing improved and early diagnosis. This can be the difference between “night and day” for families, says one former Senator with lived experience.

A last-minute change in the Senate Social Affairs Committee schedule means that former Senator Daniel Christmas will have to wait to testify. Originally scheduled for June 10, the meeting will now likely take place this fall. But the former parliamentarian—who made history as Canada’s first Mi’kmaw Senator when he served between 2016 and 2023—knows what he’ll be focusing on when discussing Bill S-234, National Framework on Fetal Alcohol Spectrum Disorder Act. 

The bill is sponsored by Independent Senator Mohamed-Iqbal Ravalia (Newfoundland and Labrador), who based the bill’s call for a framework to improve diagnosis and care for fetal alcohol spectrum disorder (FASD) on his 30 years of practising medicine in rural communities. 

Christmas told The Hill Times that he was planning on sharing his family’s story about raising a child with FASD. Christmas said his daughter, whom he adopted when she was just shy of two years old, found it very difficult to control her emotions and would have strong temper tantrums. 

“At first, it was cute, but later on it became more serious … [I would] sit down and talk to her, and she would often tell me, ‘Dad, I don't know what happened, I couldn't stop myself,’” Christmas said. 

Although he and his wife took their daughter to “numerous” health professionals over six years, it was a chance encounter with a fellow parent who worked in social services and knew FASD's symptoms that led the couple to the proper diagnosis. The parent asked Christmas if his daughter, then eight years old, had ever been diagnosed with FASD. 

The little girl is now a teenager who accesses services from a clinic in Elsipogtog, N.B., which specializes in FASD and other neurodevelopmental disorders. This support has included education for the Christmas family on the disorder, and tools to help the teen regulate her emotions. 

Christmas retired from the Senate eight years before his mandatory date in order to focus on raising his daughter after his wife’s death in 2019. 

He told The Hill Times that his upcoming committee testimony would recommend that Canada needs to “expand the capacity” to diagnose people of all ages with FASD. 

Christmas said he’s disappointed the study on Bill S-234 is being pushed back, but, as a former committee chair, he also understands “these things happen.”  

Ravalia told The Hill Times that Christmas is one of the Senators he reached out to in working on the legislation, and that the now-former Senator has been "particularly supportive of the bill."

Ravalia’s bill on its second trip through the Senate 

This is Ravalia’s second attempt to legislate the development of a framework. Bill S-234, introduced in September 2025, is nearly identical to Bill S-253, which was introduced in June 2023, but died on the Order Paper once Parliament was prorogued in January 2025. 

Ravalia’s passion for the subject is based on his 30-year experience of practising medicine in rural Newfoundland and Labrador, where he saw first-hand the difficulties in diagnosing FASD. 

“While we made all kinds of efforts to ensure that we expedited and attempted to get the appropriate diagnosis and supports early in life, given the current state of health care and the wait times, etc., too many people were falling through the cracks,” said Ravalia, who maintains his medical licence and says the issue remains a problem. 

Audrey McFarlane is a long-time advocate with CanFASD, which specializes in the subject. She said the impacts of alcohol on pregnancy have been known since the 1970s, yet there is still a lack of diagnostic capacity for people across the country.

A part of the problem is that FASD doesn’t receive the same level of recognition as other disabilities, according to McFarlane, director of strategic partnerships and initiatives at CanFASD. 

“FASD has always been the underdog in the disability world,” said McFarlane, noting that all disabilities should be recognized but there is a “disparity” in the level of attention received by FASD. 

This is why Bill S-234 is so important, according to the advocate. 

Better education and diagnosis efforts would also contribute to a more “normalized” discussion about the subject, and which in turn can help reduce rates and the stigma around the subject, according to McFarlane.

Women drink alcohol during pregnancy for various reasons, including as a response to mental health problems or a lack of support, or not knowing they are pregnant to begin with, which is why more support for pregnant women is necessary, McFarlane said. 

Another challenge connected to FASD is that, for some, there's a lack of awareness that the disorder is “in fact a real thing,” said Ravalia. 

CanFASD data states an estimated four per cent—or more than 1.6 million—of people in Canada live with the disorder.  

People with FASD can fall into ‘unhealthy systems’ without care: McFarlane

Ravalia said the bill has two particular areas of focus: diagnosis and education-building efforts. 

The bill calls for national standards for prevention and diagnosis of FASD, and measures to help with training and education of health care and other professionals that can help in diagnosis and treatment. 

Christmas said his family benefits from the services of the Eastern Door Centre in Elsipogtog, N.B., which specializes in Indigenous ways of treating and educating community members about developmental conditions related to generational trauma such as FASD.  

He said the clinic has been in place for 20 years, and has made a “huge difference” to the local community and beyond because of its Indigenous-focused interventions. But it relies on grant funding from governments, leading its team “every year to chase dollars to operate,” Christmas added. 

“I'm hoping, as an Indigenous parent, that we find ways to provide resources for more and more clinics across Canada in Indigenous communities and non-Indigenous that could help children, youth, and adults receive the professional help they need,” he said.

“Once that help is available, the quality of life for individuals with FASD dramatically increases. Without that intervention, so many of those kids—mostly youth and adolescents—... end up in correctional institutions."

Ravalia told The Hill Times he has witnessed the "cycle" of what happens when people with FASD don’t receive proper care. This can include marginalization from others, mental health problems, addiction, and legal issues that could lead to incarceration. 

McFarlane said different studies show that anywhere between seven and 50 per cent of people living with FASD land in the justice system. The wide range in this statistic is because of a lack of data, she said. 

“What happens is that when people with FASD are not identified early and then do not receive a diagnosis, they do not have a plan, they're not supported, and they fall into those very unhealthy systems, so they end up homeless, unemployed, on the streets, and involved in substance use and criminal activity,” she said.

But when they receive proper care and support, these individuals can be productive and remain employed, she added. 

To encompass the wide range of issues that FASD encompasses, the bill requires the participation of the ministers of justice, employment and social development, and Indigenous services. The health minister is to lead the work. If the bill is passed, a framework must be developed within 18 months after royal assent, and a report reviewing progress is required five years after the framework is first tabled. 

As for whether the government has indicated it supports the bill, Ravalia said his office has had “very important conversations” with bureaucrats.

“We've not formally been given a green light, but neither have we been given any kind of negativity,” he said. 

Ravalia said PHAC is doing “excellent work” on the subject and noted the agency last year commissioned a report from the Canadian Academy of Health Sciences which discussed challenges with diagnosis, and possible tools and supports for those with the disorder. 

“By and large, its findings support the intent of the [bill’s] proposed framework. … While I am not trying to reproduce what the Public Health Agency is already doing … I feel that we kind of need to bring this together under a single umbrella, as has happened with [federal frameworks for] autism, diabetes, etc.,” Ravalia said. 

McFarlane said she wants to see more leadership from Ottawa on FASD. She said the Canadian Academy of Health Sciences did an “amazing job” with its FASD report, “but from what we can tell, it's been shelved. There's been no action taken on it …  so I think the bill provides the mechanism to help move that evidence into action.”

McFarlane is also urging the Senate Social Affairs Committee to prioritize this study. 

“People's lives are at stake. I don't think that people often think about it that way, but … these folks are not doing very well in society now, and we need to do something,” she said.  

tsanci@hilltimes.com

The Hill Times