Category Archives: FASD In The News

Lakeland centre trying to fight the ‘invisible disability’

The Lakeland Centre for FASD offers outreach programs for those diagnosed with FASD and their families. SUBMITTED

It’s called the ‘invisible disability’ owing to its lack of any distinct physical features, and it’s back in the spotlight again after the unfortunate overdose death of a patient at the Edmonton Remand Centre last month.

The death of Maxim Baril-Blouin, diagnosed with fetal alcohol spectrum disorder (FASD) at an early age, has raised the issue of how to deal with the illness, a point highlighted by his mother, who was advocating better support for her son at the time of his death.

Almost 500 babies a year a born with this disorder in Alberta, and in total close to 46,000 Albertans fall on some end of the spectrum.

The Lakeland Centre for FASD is thus a boon for those in the region who suffer from this disorder.

Describing the illness, the program manager at the Centre, Lisa Murphy, told The Cold Lake Sun, “FASD is a complex disorder. It affects people differently and many factors play a role in outcomes. FASD is known as the ‘invisible disability’ because unlike many other disorders, few people have any distinct physical features; the challenges are brain based.”

“Many people with FASD struggle with executive functioning, memory, language, and learning. Any woman of child barring age who drinks alcohol, is at risk of having a child with FASD. But the focus should not be on moms, rather how we, as a community support and empower the entire family,” she said.

Murphy added that due to its complexities, it is essential FASD is diagnosed by a multidisciplinary team approach, consisting of a physician, psychologist, occupational therapist, speech language pathologist, and community support.

Patients at the Lakeland Centre for FASD are encouraged to develop personal strength and help fight the debilitating effects of this disorder such as struggles with executive functioning, memory, language and learning.SUBMITTED

“Individuals with FASD require lifelong support, people who understand their individual needs, and a chance to develop their personal strengths. Without supports individuals with FASD can find themselves in many undesirable situations including criminal activity.  And the supports people need are not always available,” she said.

The tragic death of Baril-Blouin, a 26-year-old from Whitehorse, highlighted the lifelong support patients need. He died of an apparent fentanyl overdose at the remand centre. Sylvie Salomon, who adopted Baril-Blouin when he was young, told CBC that he shouldn’t have been in jail in the first place with no one to watch over him. In 2010, then Canadian Bar Association president Rod Snow had asked lawmakers to deal with leniency when those disabled by FASD faced charges.

Giving a peek into their work at the Centre, Murphy said, “The Lakeland Centre for FASD provides lifelong support from prevention to diagnosis to intervention services, across the Lakeland Region. Our outreach programs include post diagnostic supports for individuals diagnosed with FASD and their families, transition to adult services support, and employment support. We run a summer camp for children with FASD, and recently added counselling services to our list of available programs.”

The Centre doesn’t just help the affected, rather it also tries to bring down future victims. “LCFASD also works in prevention; our Mother’s-To-Be mentorship program is an intensive outpatient program supporting high risk women for three years following the birth of their child. The 2nd Floor Women’s Recovery is a 9-bed women’s residential treatment centre, specializing in women who are pregnant or are in child baring years and at high risk of using during pregnancy. The women in our prevention programs do not need to have a diagnosis of FASD,” said Murphy.

Giving an insight into the effectiveness of the program, she added. “It’s important to focus on the little successes.  Our aim is to build support around each of our clients and encourage our community to change traditional support methods.  LCFASD works with over 400 individuals with FASD and their families each year in the region.   Many individuals with FASD with proper support finish high school, maintain employment and have families.  Without an early diagnosis, proper support in school and into adulthood, can result in very challenging situations.”

Talking about the challenges the Centre faces, she said, “About 80 percent of our funding comes from various government departments, the remainder is from fees and donations. Our funding from government has not provided us with an increase in over 6 years.  This has made it very difficult to maintain high levels of service. Every FASD Network in the province is working under the same conditions with no additional funding and growing waitlists.”

Despite the challenges and grim realities, Murphy is optimistic about the future. “Although FASD is still a fairly new term, the dangers of mixing alcohol and pregnancy is not.  Approximately 4% of the population in Canada have FASD, many of whom will not be diagnosed because the diagnostic clinics just cannot keep up with the need.  The highest risk groups include working women, college and university women and women with addictions. Having said that, Alberta is leading the FASD world with its programming.  Which is why we try not to complain too much as we have many more services for individuals with FASD than most other places in Canada.”

Written by Rohit Bhaskar

Retrieved from https://www.saultstar.com/news/local-news/lakeland-centre-trying-to-fight-the-invisible-disability/wcm/fe1a76fb-ee4e-4c51-9122-9a5d5e75dc52

CBC: More supports needed for people with FASD, say advocates

Maxim Baril-Blouin, who had FASD, died of a suspected drug overdose at the Edmonton Remand Centre.(Sylvie Salomon)

 

People diagnosed with fetal alcohol spectrum disorder (FASD) need lifelong supports, but the disorder is often misunderstood, say advocates. 

The recent overdose death of Maxim Baril-Blouin, who had FASD, at the Edmonton Remand Centre has sparked conversations about the needs of people living with the disability. 

Baril-Blouin’s mother was advocating for better supports for her son at the time of his death.

“There is always more demand than what we have to offer, ” said Lisa Rogozinsky, who coordinates the Edmonton and area Fetal Alcohol Network (EFAN).

People with FASD have different needs depending on where they fall on the spectrum, she said. 

“Some of the common areas of impairment that we see are in cognitive ability,” said Rogozinsky. “Attention span, memory, language, their reasoning, judgment, and decision making.”  

About 500 babies a year are born with FASD in Alberta, and about 46,000 Albertans are living with the disorder, according to the provincial government. 

Lifelong supports needed

Local agencies that contribute to EFAN work together to find appropriate services for their clients.

“We basically try to meet a fair amount of the issues that can occur across a lifespan,” said Denise Plesuk, program manager at Catholic Social Services in Edmonton.

The agency offers programs to support people with FASD and their families.

“Some of our programs do have waiting lists, and that’s partly why we’ve expanded into doing more group work,” said Plesuk.

People with FASD need lifelong one-on-one supports, said Rogozinsky, which includes supportive housing.

“We need to provide a sense of belonging to this population that has often fallen through every crack of every system,” she said. 

A tragic case

Maxim Baril-Blouin, who was diagnosed with FASD at a young age, died July 13th at the Edmonton Remand Centre of an apparent fentanyl overdose. 

The 26-year-old man from Whitehorse was court-ordered to live in a supervised environment, but there were no supports for him in the Yukon, said his mother Sylvie Salomon. 

Baril-Blouin had been under the care of a private Stony Plain agency, I Have A Chance Support Services (IHAC) since January. 

He was charged with uttering threats against an employee of the agency on June 19th. 

“They broke all our trust. They failed Maxim big, big time,” Salomon told CBC News. 

Sylvie Salomon says her adopted son Maxim Baril-Blouin suffered from FASD, and needed constant supervision. (Sylvie Salomon)

 

She questions the training and practices of the IHAC employees who were looking after him.

“You take someone in, you shouldn’t put them in jail,” said Salomon. “They knew the challenge, they advertise being able to take care of someone like my son.”

IHAC said they couldn’t comment on Baril-Blouin’s case for privacy reasons.

“We are deeply saddened to learn of the passing of Mr. Baril-Blouin,” wrote executive director Lory Morgan in an emailed statement. “Due to client and employee confidentiality requirements we are unable to further comment.”

FASD and the justice system

People with FASD frequently get tangled up in the criminal justice system, both as perpetrators and victims of crime, said Rogozinsky.

They are particularly vulnerable because their disability is not visible, she added. 

“The justice system is just assuming that this is an individual that is functioning at a completely age appropriate level, which may not always be the case.”

People with FASD also tend to be easily manipulated, said Plesuk.

“Quite often, people with FASD want to please other people and they don’t always understand consequences,” explained Plesuk. “They will often get tangled up with people who will use them to commit crimes.”

They also struggle with understanding what other people are saying, she said.

“They need time to process the information. They need instructions that are very short and concrete, one or two things at a time.”

Supporting expecting mothers

Shaming and blaming expecting mothers who consume alcohol is counterproductive, said Rogozinsky.

“FASD is not a women’s issue, it’s a community issue,” she said. “Let’s make sure we are addressing the reasons behind a woman’s alcohol consumption in pregnancy.”

Complete abstinence from alcohol is the safest route, said Rogozinsky, as it is not known what constitutes a safe level of alcohol consumption during pregnancy. 

People also need to recognize how their own behaviour influences expecting mothers, said Plesuk.

“If we know someone who is pregnant, are we offering them wine? Are we offering them a drink or are we offering them some non-alcoholic choices?” she said. “We often forget about that piece.” 

ABOUT THE AUTHOR

Josee St-Onge

Journalist

Josee St-Onge is a journalist with CBC Edmonton. She has also reported in French for Radio-Canada in Alberta and Saskatchewan. Reach her at josee.st-onge@cbc.ca

Retrieved from https://www.cbc.ca/news/canada/edmonton/more-supports-needed-for-people-with-fasd-say-advocates-1.4756156

CBC: Man who died in Edmonton Remand Centre had FASD, should not have been in jail, says mother

Sylvie Salomon says her adopted son Maxim Baril-Blouin had FASD and needed constant supervision. (Sylvie Salomon)

Sylvie Salomon’s desperate search for her son ended with a phone call Friday morning, informing her that Maxim Baril-Blouin had died in the Edmonton Remand Centre.

“It’s a call that you don’t even think is real. You think it’s a bad joke, of course. But it was real,” said Salomon, who lives in Whitehorse, Yukon.

The cause of death has not been confirmed by Alberta Justice, but an incident report from the remand centre obtained by CBC News indicates that he died of a drug overdose. 

According to the document, Baril-Blouin consumed fentanyl and carfentanil in the early hours of July 13 and was found unresponsive by his cellmate around 7:15 a.m.

“It’s upsetting because somebody should have watched him,” Salomon told CBC News.He was all by himself, no care, no supervision. He paid with his life.”

Sylvie Salomon wants to know how her son, Maxim Baril-Blouin, died in the Edmonton Remand Centre last week. 1:22

The 26-year-old had fetal alcohol spectrum disorder (FASD) and required constant supervision, Salomon said.

She still can’t wrap her mind around the fact that her adopted son had been charged for uttering threats against an employee of the agency responsible for his well-being.

“He should never have been there,” Salomon said of the remand centre. “You don’t put someone with this kind of mental state in jail.”

Court-ordered care

Salomon said she had been trying to locate her son since his arrest on June 19.

She said that for three weeks, Baril-Blouin was transferred back and forth between the Edmonton Remand Centre and the Royal Alexandra Hospital. She knew he was being moved around but was never able to connect with him.

“Everybody kind of said, ‘Don’t worry ma’am, he’s 26,’ ” she said. “That’s unacceptable.”

Maxim Baril-Blouin was diagnosed with fetal alcohol spectrum disorder as a child. He was energetic and impulsive, says his mother Sylvie Salomon. (Sylvie Salomon)

 

In 2013, while in Whitehorse, Baril-Blouin had been found not criminally responsible for unrelated offences because of his FASD.

The Yukon Review Board mandated that he live in a supervised environment.

He lived in Nova Scotia and Ontario under the care of different agencies before moving to Stony Plain, Alta., in January, his mother said.

He had his own apartment and the Yukon Review Board paid for services provided to him by an agency in Stony Plain.

The review board had wanted him to have more independence, Salomon said. But Baril-Blouin began sneaking out of his apartment at night to consume drugs and eventually ended up in hospital, she said.

While he was in hospital, his apartment was broken into and damaged, and the agency moved him into a hotel.

“He became very frustrated,” said Salomon. “It’s not what he’s used to. He needs a schedule, he needs to know when things are happening.”

She believes the unstable situation led Baril-Blouin to lash out at staff of the Stony Plain agency. Police were called when he threatened staff, his mother said.

CBC News has seen an email message from the agency to Salomon explaining the circumstances that led to Baril-Blouin’s arrest.

Remand Centre limbo

On July 11, two days before his death, Baril-Blouin pleaded guilty in an Edmonton courtroom to uttering threats.

Maxim Baril-Blouin loved to fish and had recently got his boating licence, says his mother Sylvie Salomon. (Sylvie Salomon)

 

He was sentenced to 30 days in jail, but received credit for time already served in custody, according to Alberta Justice.

At the time of his death, Baril-Blouin was waiting to be taken back to Whitehorse at the review board’s request, Salomon said.

Instead, Salomon brought home Baril-Blouin’s ashes.

“It’s devastating,” she said.

“We are trying to function, because we need answers, we need to keep going.”

She said she’ll keep fighting for better understanding and support for people who suffer from FASD.

“I hope other parents will come forward, and say, ‘It happened to [my child], too,’ because things need to change.”

ABOUT THE AUTHOR

 

Josee St-Onge

Journalist

 

 

 

 

Retrieved from http://www.cbc.ca/news/canada/edmonton/death-remand-centre-fasd-mental-health-mother-1.4750958

CanFASD: The National FASD Database

Data image

“This is the first time that Canada has had enough data to begin to really understand our FASD population – we have relied on data from other countries in the past.  Now we can see what the clinical profiles are for our own population affected by prenatal alcohol exposure, what their service needs are, and where and how we can put education, programs, and policies into place to meet the specific needs for Canadians.”

  • Jocelynn Cook, CanFASD Research Lead

CanFASD was recently in the news for its groundbreaking, comprehensive FASD database, the first of its kind in the world. Led by CanFASD Research Lead Dr. Jocelynn Cook, the National FASD Database provides key insights into the profile of Canadians assessed for FASD and highlights the demand for access to FASD clinical services across the country. Earlier this month, CanFASD announced the project in a news release, which was covered by many national news outlets.

The Database provides an integrated and coordinated approach to collecting information and characterizing the FASD population in Canada. Key information is collected on the challenges, strengths, and needs of Canadians who are assessed for FASD across the lifespan.

The Database has been active since the fall of 2016 and now has over 1,100 records from 25 participating clinics across 9 provinces and territories in Canada. Data is collected in a wide variety of areas, including:

  • Referral information
  • Demographics
  • Use of screening tools
  • Living situation
  • Family history of FASD
  • Other prenatal exposures, such as tobacco, cannabis, opioids, and cocaine
  • Sentinel facial features of FASD
  • Specific brain impairments
  • Individual strengths
  • Mental health history
  • Medications
  • Adverse outcomes
  • Formal FASD diagnosis
  • Other diagnoses and health issues
  • Support recommendations

Implications for Practice and Policy

The Database provides a wealth of information which has important implications for FASD policy and service delivery:

  • Gives us a better understanding of the specific difficulties, strengths, and outcomes across the lifespan that are experienced by people with prenatal alcohol exposure
  • Collects information about the demographics of people assessed for FASD, categories of FASD diagnosis, specifics of physical and neurobehavioural test results, and recommendations for interventions
  • Allows us to identify various trends and patterns related to FASD in Canada
  • Provides a structure for active communication and collaboration among all programs in Canada that provide FASD assessment and diagnostic services
  • Allows us to collect important information about individuals who are assessed for FASD but do not receive a diagnosis

“Collection of standardized data on children assessed for neurodevelopmental disorders across the country will provide evidence related to risk factors, interventions, and short and long-term outcomes. Comparisons in diagnoses made per capita and variations or similarity in treatment recommendations across jurisdictions will be highly useful in providing information to governments in developing improved policy and programming. This data will also provide important information to develop effective prevention messaging and interventions and supports for families.”

  • Kathy Unsworth, CanFASD Managing Director

The systematic and country-wide collection of FASD-related information allows us to understand the profile of Canadians with FASD, and better link interventions with areas of need. This information is also critical in helping us to identify gaps in practice and policy to better support individuals with FASD as well as the families and communities that support them.

The National FASD Database is supported by funding from Kids Brain Health Network and the Public Health Agency of Canada.

If your diagnostic clinic is not yet participating in the National FASD Database, we would love to have you join the project. Please contact Kathy Unsworth at kathy.unsworth@canfasd.ca for more information.

Stay tuned for more information as the Database continues to grow!

In The News: Breaking the cycle, Edmonton woman plans alcohol-free parties at local clubs

Kaitie Degen is the founder of Sober Saturdayz. (Supplied by Kaitie Degen)

 

As a child, Katie Degen knew what alcohol abuse looked like. 

Her mother, who had struggled with addictions since age 15, found she was unable to care for her daughters, and sent them to live with grandparents in Kelowna. 
The grandparents, unable to afford both girls, placed Degen in foster care, where her unstable life continued. 
Drinking alcohol was “just something that always kind of went hand in hand with me throughout my life,” Degen said in an interview Friday with CBC Radio’s Edmonton AM.

Now 26, Degen said she knew she wanted to break the cycle.

“When I first started drinking less, I just really didn’t know what to do during the day,” she said. “I just would wait around until the night.” 

Sober Saturdayz

Degen is the founder of Sober Saturdayz, an initiative she’s introducing in Edmonton with an event at El Cortez on Aug. 25 (tickets for the event can be purchased online). 

She got the idea of organizing alcohol-free parties at venues across the city from her own friends. 

Kaitie Degen, pictured with her dog, started Sober Saturdayz because she wanted to live a more productive life and help others to do the same. (Supplied by Kaitie Degen)

 

“We all have this frustration,” she explained. “We wanted to socialize, but it had come to a point where we just didn’t know how to socialize without booze or substances.

“You can’t just be staying up late drinking every night for the rest of your life.” 

Degen, studying acupuncture at Reeves College, said support for the initiative was almost overwhelming at first, then began to dwindle. 

“What I realized is, people kind of have created this social anxiety without booze,” Degen said. 

She said she found people feared they would be left out if they didn’t imbibe. 

Redefining sober 

Through Sober Saturdayz, Degen hopes to redefine what it means to be sober. 

“You don’t have to be totally sober all the time,” she said. “Sobriety is personal. It’s different for everyone.” 

To Degen, sobriety is more about managing consumption.

“There really is no one to teach you how to use alcohol and things like that,” she said. “You’re told not to use it your whole life, and all of a sudden, OK, you can use it, and people binge. And then it gets to a point where it’s like suddenly, it’s a problem.” 

While Sober Saturdayz are intended to be alcohol-free, Degen said she hopes they offer people the confidence to make decisions about their own limits. 

Retrieved from https://www.cbc.ca/news/canada/edmonton/kaitie-degen-sober-saturdayz-1.4745501

Global News: First of its kind database aims to reveal how FASD affects Canadians

The Canada FASD Research Network has developed a first of its kind database to track  the disorder.

The Canada FASD Research Network has developed a first of its kind database to track the disorder.

Saskatchewan, like other provinces, does not collect specific data on how many people have fetal alcohol spectrum disorder (FASD).

The Canada FASD Research Network (CanFASD) is launching the first national database, and first globally, on the disorder.

The database will gather information from 25 diagnostic clinics across the country. This information will then be used to lobby governments in the development of healthcare policy.

“This way we can look at many people across Canada and say that this is a condition that affects these areas of brain development and may also affect things like physical impairments like cleft palates or other kinds of health issues,” CanFASD executive director Audrey McFarlane said.

READ MORE: Up to 3% of Toronto-area children could have fetal alcohol spectrum disorder: study

“We think we know about these things right now because of anecdotal information and things that caregivers tell their physicians, but we haven’t been able to collect that information over time to really show whether those are regional differences or whether it’s national.”

Once the information is gathered, McFarlane said it will be able to help physicians see FASD as a whole body disorder instead of just specific brain dysfunction.

Saskatchewan’s Ministry of Health says it is looking forward to being able to use data gathered by the CanFASD database.

READ MORE: University of Saskatchewan expert helps develop first-ever FASD medication guidelines

The FASD Network of Saskatchewan delivers a number of programs to help families affected by the disorder. This year they are receiving an additional $78,000 in provincial funding. Their face-to-face family program will also soon be offered in Regina as well as Saskatoon.

McFarlane said that data will likely be publicly updated every six months so it can start to be revealed exactly how many people have certain mental health issues, physical ailments and if they were exposed to other substances like tobacco and marijuana before birth.

Retrieved from https://globalnews.ca/news/4314642/first-of-its-kind-database-aims-to-reveal-how-fasd-affects-canadians/

CBC: ‘Sobering report’ tracks 53,000 Manitobans’ struggles with alcohol, barriers accessing help

ImageVaultHandler.aspxA robust 25-year study suggests the key to helping Manitobans in the grips of alcohol disorders could be all about more timely diagnoses and removing barriers to prescriptions and treatment so those with addictions can get quicker access to care.

“We’re reaching these people, these individuals too late,” said Dr. Nathan Nickel, lead author of the Health and Social Outcomes Associated with High-Risk Alcohol Use study.

“They’ve already progressed along their disease trajectory and missing them is having fatal consequences.”

Dr. Alan Katz, director of the Manitoba Centre for Health Policy at the University of Manitoba, called it a “sobering report.” It followed 53,000 Manitobans — 64 per cent men, 36 per cent women —  diagnosed with alcohol disorders between 1990 and 2015.

Unlike other studies, this one pooled data on those individuals’ contact not just with the health-care system, but also with child and family services, justice, income assistance and social housing systems.

Those with mental health issues and physical illnesses including liver damage were more likely to be struggling with alcohol addiction than the average Manitoban, as were younger, low-income people.

The research, commissioned by Manitoba Health, showed what past studies have revealed in terms of how much more often those with diagnosed alcohol disorders access hospitals and emergency rooms. The Manitoba subjects were accessing those services five times more often than the general population, said Nickel.

Nickel said he was shocked to find that those diagnosed with an alcohol disorder had a five-times higher rate of dying within one year of being diagnose.

But it’s the early mark these people leave on other forms of social supports that was previously invisible.

Dr. Nathan Nickel is an assistant professor of community health sciences at the Max Rady College of Medicine at the U of M. (Jaison Empson/CBC)

 

“Even four years before someone received their diagnosis they started to use an increasing amount of social services, such as income assistance and social housing,” said Nickel. “In many cases we saw a significant spike in social services use and interactions with the justice system a full year before someone received their diagnosis.

“We saw a very similar pattern when we looked at the emergency department,” he said.

Nickel said those findings point to issues accessing treatment and prescription medication in the early stages of addictions.

Manitoba women in particular have a challenging time accessing treatment quickly, according to the Manitoba Mental Health and Addictions Strategy released in May.

For women, Health Canada defines anything more than two drinks per sitting or 10 drinks in a week as high risk behaviour. The guidelines for men are three drinks in one sitting or 15 per week.

The report, Health and Social Outcomes Associated with High-Risk Alcohol Use, suggests many people struggling with alcohol disorders are falling through the cracks in Manitoba’s health-care system. (University of Manitoba)

 

The World Health Organization has a set of brief interventions it encourages family doctors to offer during patient visits. They include a series of questions designed to identify high risk drinking or harmful drinking.

Manitoba doctors aren’t doing a good enough job of performing that test, Nickel says, and that could be allowing problem drinking to go on below the surface and increase health risks for patients.

Fewer than two per cent of those with diagnosed alcohol disorders were provided medications proven to help reduce alcohol dependency, and the problem was even more stark for the poor.

Low-income people were “far less likely” to be prescribed helpful medications for alcohol disorders compared to high-income Manitobans, Nickel said.

Naltrexone is one of the most common such medications and has the highest success rate of reducing alcohol dependency when paired with behavioural therapy.

Manitoba recently added alcohol to its formulary, which Nickel hopes will mean more of those in the grips of addiction will be able to access medication and reduce some of the associated harms.

Nickel said there are already inter-departmental working groups looking at how to better co-ordinate mental health and addictions services in Manitoba.

He said researchers are also partnering with First Nations to be able to look more deeply into how issues like institutionalized racism and colonialism contribute to alcoholism among Indigenous people.

Retrieved from https://www.cbc.ca/news/canada/manitoba/alcohol-addiction-winnipeg-manitoba-study-1.4720778

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