CanFASD: Back to School!

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September usually means one thing: it’s time to go back to school! This transition can be particularly stressful for students with FASD, as well as their caregivers and teachers.

Throughout the month of September, we will be posting a Back to School Series, highlighting different issues related to education and FASD.

To kick off the series, we have summarized a recent issue paper below on education and FASD.

Throughout the rest of the month, we will release guest posts from professionals and caregivers with lived experiences, as well as information about alcohol use among post-secondary students.

Back to School #1: Educational Supports for Students with FASD

Students with FASD can benefit in both their school and personal lives with the help of educational supports and individualized education plans (IEPs). Despite educational supports being available in most school systems, current strategies are often outdated, not FASD-specific, and lack the accessible information teachers need to prepare ideal IEPs for students with FASD.

Some of the challenges for students with FASD, parents, and educators include:

  1. Ineffective functional assessments and psychoeducational reports
  • It can be extremely difficult for teachers to find value with the information provided in current functional assessments
  • Teachers claim functional assessments lack comprehensiveness, and focus mostly on the FASD diagnosis, only highlighting weaknesses of the student
  • Assessment reports are often long and filled with technical jargon
  1. Poor teacher education and training on FASD
  • Many teachers are not fully educated on, or do not have the proper resources on, FASD
  1. Disjointed communication between all parties
  • There can be disconnect in the collaboration between all parties involved with intervention for students with FASD
  • When collaboration is sparse, individual program planning becomes disjointed, and the complex needs of the student with FASD are difficult to meet

Evidence shows that positive learning outcomes are more likely with revised strategies and improved educational supports for students with FASD through all levels of diagnosis, assessment, and intervention planning.

Recommendations:

  • Early diagnosis is essential to understand and meet the complex needs of individuals with FASD
  • Improving functional assessments is required to optimize IEPs, and psychologists should gather a more comprehensive overview of the student, individualizing the assessment, highlighting the strengths and skills of the student, and noting how to use and apply these strengths in the classroom
  • Teachers and other educational support staff should be provided with the proper resources, education, and up-to-date training on FASD to ensure that they are equipped to make sound decisions on the best learning styles and student programming
  • Parents and caregivers should have access to FASD educational resources to enhance their knowledge and understanding of the disorder, and to better serve the unique needs of their child at home
  • Stronger communication and collaboration between psychologists, teachers, educational aides, parents, and the community will lead to more effective IEPs, and better sharing of expertise among all parties

For more information on educational supports for students with FASD and current teaching strategies, please refer to the following resources:

Click here to read the full issue paper devoted to this topic.

Visit the CanFASD website for more information and resources related to education and FASD.

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CanFASD Interview #6: The Honourable Larry Bagnell

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Larry-Bagnell

The honorable Larry Bagnell is the member of Parliament for the Yukon, affiliated with the Liberal Party. Mr. Bagnell has been active in politics representing the Yukon since 2000. Currently, he is chair of the Subcommittee on the Code of Conduct for Members of the HoC: Sexual Harassment, Standing Committee on Procedure and House Affairs, and Subcommittee on Agenda and Procedure of the aforementioned standing committee. Mr. Bagnell has been a voice for populations affected by FASD in the Canadian Parliament, as it is an issue he cares deeply about.

What inspired you to start advocating for people affected by FASD through policy in Parliament?

The Yukon is ahead of the rest of the country in making progress to help people with FASD. The Canadian Bar Association (CBA) is also ahead of its time, in recognizing that the treatment of FASD in the justice system is totally inappropriate. They have created some good recommendations. When you have a majority of the lawyers in the country onside, you would think it would be an easy fix. Living in the Yukon, like most places in the world, I can see the prevalence of FASD. Obviously, people with this affliction cannot always help themselves in all situations, so I am trying to help.

Tell us about Bill C-235 which you introduced as a private Members’ Bill in 2016?

Bill C-235 had four elements in it, all of which were recommended by the Canadian Bar Association. First, it allowed a judge to order an assessment of a person charged with an offence, who he/she believed may have FASD affliction. The second component of the bill would allow the judge to take the results of that assessment into consideration in sentencing and dealing with the person charged with the offence. The third component would mandate that correctional institution staff treat people with FASD appropriately for their special circumstances, not just like any other inmate. The fourth element of the bill, would require that a person with FASD not just be released into the public when their sentence was over, but be released with a plan that would help ensure that they do not come back into the system.

Why do you think there is a lack of coordinated support in Parliament for making progress in legislation that seeks to achieve the goals of Bill C235?

In general, a vast majority of Parliamentarians, do not know anything, or know very little about FASD. In regard to this specific Bill, the reason it probably failed is that every single provincial and territorial Justice Minister, with the exception of the Justice Minister of the Yukon, were against the bill. I think they thought it would cost the provinces more for the assessments and training and of their staff in correctional institutions, and for designing successful plans for reintegrating FASD inmates into society. However, what they didn’t realize, is the amount they would save by not having people incarcerated inappropriately in highly expensive jails where they are damaged even more, is much higher for society and the provinces than the initial investment to implement the bill.

As a member of Parliament, how do you support people with FASD in the Yukon and Canada?

As a member of Parliament, I support people with FASD in Canada, by raising awareness about FASD, by lobbying for appropriate treatment of people with FASD through new legislation, by proposing private members bills like C-235, and speaking at national and international conferences on FASD and the justice system.

Bill C-235

Website

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“I am not broken, I do not need fixing” – Myles Himmelreich

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Myles Himmelreich has FASD and is a motivational speaker. Hear this incredibly powerful message from this amazing man and change maker!

The FASD Patient Journey Project, WE NEED YOUR HELP

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What is it the FASD Patient Journey (FASD PJ) Project?

  • The FASD PJ is a project that seeks to enhance services for individuals with FASD and their families.
  • The project team will be visiting key communities throughout Alberta conducting interviews with adults with FASD, parents/caregivers, and service providers to hear about their experiences with FASD services, including addiction and mental health.

Who will the FASD PJ Project be interviewing?

  • We want to interview adults with FASD, parents and caregivers of children with FASD, and FASD service providers.
  • We will not be sharing your personal identification information and your participation in the interview will be kept anonymous.

Where will the FASD PJ Project be interviewing?

  • The FASD PJ Project Team will be interviewing service users and providers in Edmonton and Calgary, and in various communities across Alberta that have a FASD Network.

When will the interviews take place?

  • We will be interviewing throughout the fall of 2018.

How can I participate in the FASD PJ Project?

  • Please let your FASD Network or Clinic know of your interest, or contact Randal Bell at 780-224-5802.

 

In The News: Shame not the solution for preventing Fetal Alcohol Spectrum Disorders, says advocate

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0umzDCrm_400x400Claire Theobal, EDMONTON — On International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day, advocates warn shaming women may be doing more harm than good for at risk mothers and their babies.

“When we focus on FASD as simply being woman drinks alcohol causes FASD, we do a disservice to women as well as to the infants. FASD is a community issue, so awareness really needs to focus on what are the reasons behind a woman’s alcohol consumption while she’s pregnant,” said Lisa Rogozinsky, co-ordinator of the Edmonton and Area Fetal Alcohol Network on Sunday.

According to provincial estimates, nearly nine in every thousand babies in Alberta are born with FASD — around 500 every year — meaning there are more than 46,000 Albertans with FASD.

FASD describes a wide range of physical and mental disabilities caused when a mother consumes alcohol during pregnancy, including physical birth defects, developmental delays, learning disabilities, memory problems, as well as difficulties in communicating their feelings and understanding consequences.

“When we don’t support people with FASD the way in which they need, what we see are these secondary challenges that can be devastating,” said Rogozinsky.

Those with FASD can sometimes struggle with learning from past experience and understanding risks or consequences, making them vulnerable to high risk behaviours.

For children, their symptoms can disrupt their ability to learn and interact with their classmates at school.

In adults, it can cause issues with maintaining employment, addiction, homelessness and trouble with the law.

A 2011 study of Canadian inmates found 10 per cent suffered the effects of FASD despite not having been diagnosed before intake into the prison system.

“People who have FASD, they have brain differences. That means how they learn, how they respond is going to look a little bit different than a neurotypical brain. The more we recognize this, we can support the individual the way they need,” said Rogozinsky.

While messaging that FASD is one hundred per cent preventable is often repeated, Rogozinsky said FASD needs to be treated as a community issue rather than a moral failure on the part of a mother.

“We need to take a social determinant of health perspective when it comes to prevention. Prevention is not about telling women not to drink, it’s about supporting them so that they capacity to abstain from alcohol,” Rogozinsky said.

For example, she would like to see those trying to prevent FASD look at other factors that may influence a woman’s ability to abstain from alcohol during pregnancy, such as homelessness or domestic violence, and provide targeted resources for pregnant women with chronic alcohol addiction issues.
Click here to read the full article.
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CBC: Yukon woman speaks out about living with ‘the invisible disability’ — FASD

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Jessica McMurphy of Whitehorse lives with FASD and works at the Yukon Transportation Museum. She says people need to know more about ‘the invisible disease.’ (Sandi Coleman/CBC)

When Jessica McMurphy of Whitehorse was diagnosed with Fetal Alcohol Spectrum Disorder (FASD) at the age of 20, she saw the diagnosis as a sort of gift.

“It was a gift because I got a lot of added support,” she said.

McMurphy, now 32 years old, credits that support — from organizations like the Fetal Alcohol Spectrum Society of Yukon (FASSY) and the Yukon Association for Community Living — for helping her build independence and find meaningful work.

She just started a new job this summer at the Yukon Transportation Museum, an ideal place for a history buff like her. McMurphy said she and her husband — also diagnosed with FASD — have their own place and pay their own bills.

“Anybody looking at us downtown would probably go, ‘you don’t look like you have a disability.’ Which is why they call it the invisible disability,” she said.

McMurphy said she’s seen a growing awareness of FASD in recent years, but feels there’s still a ways to go. That’s why she’s agreed to be featured in a new awareness campaign being launched this weekend in Yukon, by FASSY and the Association for Community Living. The launch is to coincide with FASD Awareness Day on Sunday.

McMurphy feels that people living with FASD don’t always get the support they need — especially if they’re seen as “high-functioning” individuals.

“A lot of people on social assistance who have disabilities and are on the disability side, after you make so much and you’re doing so well, they go, ‘oh good, you’re doing so well, let’s take that from you now,'” she said.

“Just because it looks like we’re doing really well, don’t pull [those supports] away, because that sets us up for failure.”

10-year FASD action plan

The Yukon government is working on an 10-year Yukon FASD “action plan,” and released the results of a year-long public consultation about what that plan might include last week.

The consultation saw government officials meet with Yukoners who live with FASD, their families, and service providers, in several communities. Those meetings happened between May 2017 and March 2018.

The results echo what McMurphy said — that too often, people with FASD do not receive the support they need, to reach their full potential. Sometimes, it’s because FASD goes undiagnosed or unrecognized.

According to the government’s “What We Heard” document summarizing the results of the consultations, stigma is also an issue.

It says too many Yukoners do not understand what it means to live with FASD, despite its prevalence. In 2016, the Public Health Agency of Canada estimated that between two and five per cent of Canadians live with FASD.

“Lack of awareness and understanding about FASD can lead to prejudice and discrimination toward people living with FASD. We heard that blaming and shaming is being felt in all communities,” the report says.

It’s not clear when the government’s 10-year FASD action plan will come out, although the “What We Heard” document says the government hopes to launch it in the summer of 2018 — which ends next week.

Retrieved from CBC at https://www.cbc.ca/news/canada/north/yukon-woman-fasd-awareness-1.4815244

Fetal Alcohol Spectrum Disorder Awareness Day: Minister Sabir

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To recognize International Fetal Alcohol Spectrum Disorder Awareness Day, Minister of Community and Social Services Irfan Sabir issued the following statement:

 

“Every child deserves the opportunity to live a healthy life and reach their full potential. We all play a role in supporting expectant mothers to have healthy, alcohol-free pregnancies. Our government is dedicated to ensuring people who live every day with the effects of prenatal exposure to alcohol have the supports they need and are fully included in communities, at school and in the workforce.

“We are dedicated in our efforts to raise awareness and educate Albertans on how to prevent FASD. And we want individuals affected by FASD to feel they can reach out for help without fear of shame or stigma. Across the province, there are 12 FASD service networks that offer diagnosis, assessment, prevention and support for those impacted by FASD.

“We remain committed to providing funding to support FASD assessment and diagnosis, prevention and support programs for those living with FASD throughout the province.

“Thank you to the many organizations and individuals leading International FASD Awareness Day events in communities across Alberta. I’m inspired by your dedication, commitment and hard work to make life better for all Albertans.”

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