FASD ONE

Health Survey Adults with FASD

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This health survey was developed by 3 adults with FASD, [Myles Himmelreich, CJ Lutke , Emily Travis]and has been approved by Ed Riley and Joanne Weinberg who have gone over it with them several times to get everything in order.  The results will be presented by the three adults in a plenary session at the Vancouver FASD conference in April (7th National Biennial Conference on Adolescents and Adults with FASD – Research on Adolescents and Adults:  If Not Now, When?).   There will be a panel of researchers following them who will reply to the findings.  The survey is pretty comprehensive, and Ed feels this will be the very first time anyone has tried to gather this kind of data.  It actually came about as a result of a large group of adults with FASD getting together at the last adult conference and comparing notes on physical health issues….and finding that many of them, who had not known each other before, had many of the same problems.   It may well help to shape research directions as so very many have or are developing significant health problems as they become adults, and at ages much younger than would be expected, and they need to be addressed.

The survey is completely anonymous and has been designed with software that allows multiple responses from the same computer, so that those who do not have one can use one from someone else (ie: multiple replies from one computer).

It is suggested that parents could probably do this survey for adult kids they know well, especially for those who are not able to do this type of survey.  Since the survey does not track ANYTHING like IP addresses, emails, etc. they can rest assured no one will know who they are.  The whole reason this conference focus is research is that the adults have been telling us that we need to pay attention to them – that they do not “stop” at 18 – and that there is more to their lives and this disability than just “brain”.  Here is the link to the survey:

http://fluidsurveys.com/s/HealthSurveyAdultsFASD/

Hope you can help.  This can go out absolutely anywhere and to anyone who can access adults.  The more replies to this that are obtained, the greater the impact on researchers.  The survey software handles all the collation of results, etc., so a large number of responses is not an issue.  We haven’t given a deadline for replies, but obviously, the sooner we get them, the better before the end of January.

Fetal alcohol spectrum disorder: a guideline for diagnosis across the lifespan

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Podcast by Dr. Valerie Temple and Dr. Christine Loock for Fetal alcohol spectrum disorder: a guideline for diagnosis across the lifespan
Released today!!
Read the full guidelines

Podcast: https://soundcloud.com/cmajpodcasts/141593-guide
20:07   Diagnosis of fetal alcohol spectrum disorder is essential to
improve outcomes for affected individuals and families, and to inform pre-pregnancy counselling to prevent future cases. This guideline from the Canada Fetal Alcohol Spectrum Disorder Research Network provides evidence-based recommendations for best practices in the diagnosis of this condition.

In this podcast, two of the authors of the guideline explain what to
look for in clinical practice. Dr. Valerie Temple is a clinical
psychologist at Surrey Place Centre in Toronto, and Dr. Christine Loock is a developmental pediatrician at Children’s and Women’s Health Centre of British Columbia, with an academic appointment at UBC.

Full guideline (open access): www.cmaj.ca/lookup/doi/10.1503/cmaj.141593
<http://www.cmaj.ca/lookup/doi/10.1503/cmaj.141593>

http://www.cmaj.ca/content/early/2015/12/14/cmaj.141593

CMAJ [Canadian Medical Association Journal] News Fetal Alcohol Spectrum Disorder Guidelines

First published December 14, 2015, doi: 10.1503/cmaj.141593
CMAJDecember 14, 2015 cmaj.141593

1. Show PDF in full window
<http://www.cmaj.ca/content/early/2015/12/14/cmaj.141593.full.pdf>
2. » Full Text (PDF)
3. Online Appendices
<http://www.cmaj.ca/content/early/2015/12/14/cmaj.141593/suppl/DC1>
4. Earn CME Credits
<http://www.cmaj.ca/content/early/2015/12/14/cmaj.141593/suppl/DC2>
5. Podcast
<http://www.cmaj.ca/content/early/2015/12/14/cmaj.141593/suppl/DC3>
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
The links to resources and services listed above are not necessarily approved or endorsed by FASD ONE.

Ontario government is committed to developing the province’s first FASD strategy

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Ontario “…the government is committed to developing the province’s first FASD strategy and will be announcing the new measures by early next year…”

http://ottawacitizen.com/news/local-news/provincial-fetal-alcohol-report
Ottawa Citizen
News – Local news

Public largely ignorant of damage alcohol can cause unborn babies, says report
Chris Cobb, Ottawa Citizen

Published on: September 22, 2015 | Last Updated: September 22, 2015 10:56 PM EDT

[Photo]  Poster from the Fetal Alcohol Spectrum Disorder Coalition of Ottawa.

The public needs educating about the effects of alcohol on unborn children in an effort to stem the growing number of  babies born with brain damage, says a new, groundbreaking provincial report.

The report into Fetal Alcohol Spectrum Disorder (FASD) is the result of 25 roundtable meetings across the province, organized by the Ontario Ministry of Children and Youth Services and led by Durham MPP Granville Anderson.

Anderson, parliamentary assistant to Minister Tracy MacCharles, re-iterates throughout the report that a massive public education campaign is necessary.

“Many women and men are unaware of the risks of alcohol use before, during and after pregnancy,” said Anderson. “Children and youth affected by FASD are more likely to have mental health issues, substance abuse problems, and social and behavioural problems.”

A spokesman for MacCharles told the Citizen on Tuesday that the government is committed to developing the province’s first FASD strategy and will be announcing the new measures by early next year.About one in 100 Canadians is affected by FASD — 130,00 Ontarians. Researchers say the number is an underestimate because of widespread ignorance about the condition among physicians, who misdiagnose the disorder, and biological mothers who fear the stigma that might result from admitting they drank alcohol during their pregnancies.

Most FASD sufferers have attention deficit disorder, which researchers say is often diagnosed and medicated as a single, non alcohol-related disorder.

Those with FASD-related attention deficit often don’t respond well to medication such as Ritalin.

According to the report, alcohol consumed by pregnant women is among the leading causes of cognitive and developmental disability in Canadian children.

One myth that experts say needs discrediting is that FASD only damages the brains of babies born to alcoholic mothers.

Timing is often more important that quantity, they say, so even casual drinkers can put their babies at risk.

FASD cost Canada at least $1.8 billion in 2013 — the latest figure available and, coincidentally, the same amount as the Liquor Control Board of Ontario’s profit during the 2014-15 fiscal year.

LCBO, which intermittently has had short-lived FASD education efforts — including the 2014 ‘Baby Bump’ campaign and in-store fundraisers — hands all its profit over to the government. The LCBO warrants only passing mention in the report despite its near monopoly as the province’s alcohol seller.

MacCharles’ spokesman said the ministry is now “exploring potential opportunities for collaborative work” with the liquor board.

“Without exception,” writes Anderson in his report, “there is a great demand for an integrated Ontario FASD strategy. (Families) have waited a long time for action … we need to start talking about FASD and how we can decrease its prevalence in Ontario.”

Among Anderson’s recommendations are:

  • A policy aimed at eliminating stigma surrounding FASD.
  • Tailor-made services that help victims from childhood through senior years.
  • Increased screening to improve and increase early diagnosis.
  • A joint strategy that involves health, justice, education and social services sectors.

FASD advocates say doctors and teachers need help in understanding FASD and schools need to offer special programs to FASD children who are often disruptive and unruly.

ccobb@ottawacitizen.com
twitter.com/chrisicobb

FASD Provincial Roundtable Report from the Parliamentary Assistant to the Minister of Children and Youth Services

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“…Ontario hosted province-wide roundtable sessions…
Read the FASD Provincial Roundtable Report from the Parliamentary Assistant to the Minister of Children and Youth Services….”

http://www.children.gov.on.ca/htdocs/English/topics/specialneeds/fasd/index.aspx
Ontario Ministry of Children and Youth Services
[on Sept. 9, 2015]
Fetal Alcohol Spectrum Disorder
What is fetal alcohol spectrum disorder?

Fetal Alcohol Spectrum Disorder (FASD) is among the leading causes of cognitive and developmental disability among children in Canada.  It is caused by maternal ingestion of alcohol during pregnancy. Approximately 1 in 100 hundred Canadians are affected by FASD.

Ontario is committed to supporting children and youth with complex and special needs to ensure that every child has the best possible start in life.  As part of this commitment, we are working to improve the experiences and outcomes for individuals affected by FASD across their lifespan.

To guide our work we established an expert group of FASD researchers and clinicians. Interviews are being conducted with a number of key stakeholders from across Canada to seek evidence-based feedback and expertise to inform the strategy.

FASD Provincial Roundtable Report

Ontario hosted province-wide roundtable sessions to engage with service providers, advocates, families, caregivers and individuals affected by FASD. We listened to the challenges they faced and learned about what they believe is required to better meet their needs.

Read the FASD Provincial Roundtable Report
http://www.children.gov.on.ca/htdocs/English/documents/topics/specialneeds/fasd/FASD_Roundtable_Report.pdf [31 pages]
[Fetal Alcohol Spectrum Disorder Provincial Roundtable Report] from from the Parliamentary Assistant to the Minister of Children and Youth Services. The report provides a summary of what we heard through our engagement.

The province-wide roundtable sessions have now concluded. We would like to thank all those who participated.

Programs and Services

Aboriginal Fetal Alcohol Spectrum Disorder and Child Nutrition Program

The Aboriginal Fetal Alcohol Spectrum Disorder and Child Nutrition Program is a program provided by Aboriginal organizations across the province for families with children and youth who may have been affected by alcohol before birth.

Learn More

Special Needs Strategy

Launch of new initiative in Ottawa for people affected by Fetal Alcohol Spectrum Disorder

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Ottawa, September 9, 2015 – Citizen Advocacy Ottawa is launching a two-year project with an overall aim to increase capacity to identify and meet the needs of children, youth, adults and families affected by Fetal Alcohol Spectrum Disorder (FASD).

Determining how many Canadians are living with FASD is difficult as, although FASD is present from birth, individuals are often not diagnosed until later in life when symptoms related to learning disabilities and a range of social problems emerge. In 2006, Health Canada estimated that approximately 1% of the population is affected, but this is a significant underestimation. However, despite the large numbers of people affected by this permanent brain injury, there is no strong, comprehensive system of inter-related, complementary services and supports for individuals and their families affected by FASD.

Citizen Advocacy Ottawa has hired three coordinators, with strong and diverse backgrounds in the FASD arena, who will draw together resources, skills and knowledge that already exist within the partnering/funding agencies, social services sector, institutions, families and community at large. The Fetal Alcohol Resource Program will concentrate on:

education to professionals (including health, education, justice, law enforcement, corrections, child welfare and social services),

  • community development leadership to assist existing resources in building their capacity to respond to and support individuals affected by FASD and their families and
  • service navigation by providing coordinated access to support services to individuals affected by FASD.

Funding and support for the project is provided by Citizen Advocacy Ottawa, NeuroDevNet, Children’s Aid Society, Children’s Hospital of Eastern Ontario and donor-directed funds through the Community Foundation of Ottawa.

“We are very excited to be able to launch, on International FASD Awareness Day, this much needed service for the many people in Ottawa affected by Fetal Alcohol Spectrum Disorders. Our dynamic FASD team will develop a plan that builds on local needs, strengths and networks, while drawing on a growing national body of tools and knowledge.” said Brian Tardif, Executive Director, Citizen Advocacy. “With this initiative Ottawa is at the forefront of increasing capacity for the children, youth, adults and families affected by FASD in Ontario.”

September 9th is International FASD Awareness Day when people all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and the lifelong challenges of individuals and families who struggle with Fetal Alcohol Spectrum Disorders. The first FASD day was celebrated on 9/9/99.  This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol.

Citizen Advocacy Ottawa is a small but powerful registered charity and is one of the few organizations that support people of all ages across the disability spectrum and their families – those with physical, intellectual, developmental, psychiatric and age-related disabilities.

For more details or to schedule an interview with Brian Tardif please call 613-761-9522 ext. 225:btardif@citizenadvocacy.org

Or Andrea Podruski, Program Manager, 613-761-9522 ext. 229:apodruski@citizenadvocacy.org
https://www.facebook.com/FARP09092015

An Opportunity to Promote Canada’s Low Risk Alcohol Drinking Guidelines…

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http://tinyurl.com/n6pwwuu
Project Health
Region of Waterloo Public Health

Fetal Alcohol Spectrum Disorder (FASD) Awareness Day: An Opportunity to Promote Canada’s Low Risk Alcohol Drinking Guidelines

September 9th is Fetal Alcohol Spectrum Disorder (FASD) Awareness Day. On this day we remind all women and men that there is no safe time, no safe amount and no safe kind of alcohol consumption in pregnancy.

FASD is the term used to describe a lifelong disability of permanent brain damage and birth defects caused by prenatal exposure to alcohol.

FASD is:
• The leading cause of developmental disability among Canadian children
• Estimated to affect 1-2% of Canadians.  Experts working in the field feel the number is much higher as most people affected by FASD are never
diagnosed
• Costing Canada 5.3 billion dollars a year

Why Is Prevention Necessary?
Research reports that 40-50% of pregnancies are unplanned, therefore women may be drinking before they know they are pregnant. The Centre for Addiction and Mental Health found that generally 22% of drinkers exceed Canada’s Low Risk Alcohol Drinking Guidelines. They also found that the average number of drinks consumed per week increased from 3.3 (1996) to 4.6 (2009) and that this increase was especially prominent in women drinkers aged 18 to 29 years of age, women in their reproductive years. Therefore, prevention efforts are critical in decreasing the risk of FASD.

Studies show that women are more likely to drink in pregnancy if their partner drinks or nags them about drinking. It is important that males understand that there is no safe time, no safe amount and no safe kind of alcohol consumption in pregnancy. Therefore, to prevent FASD the greatest impact will occur if we focus on all people in their reproductive years.
Encourage partners of pregnant women to be supportive and ask how they can help to ensure an alcohol-free pregnancy. Click here for additional information and tips for partners of pregnant women: How to Support Your Partner.

What can your workplace do?
• Promote FASD Awareness Day (Sept. 9, 2012) with posters, email blasts, displays and brochures. See http://fasday.com/ for more details.
• Post and promote information on alcohol free pregnancies. Seewww.alcoholfreepregnancy.ca for more details.
• Post and promote Canada’s Low Risk Alcohol Drinking Guidelines.
• Borrow the Mocktails for Mom display from Region of Waterloo Public Health to demonstrate alternative beverage options (click here for details).

If you would like more information on Fetal Alcohol Spectrum Disorder or Canada’s Low Risk Alcohol Drinking Guidelines, please contact Project Health atprojecthealth@regionofwaterloo.ca or call 519-883-2287.

Be Safe Poster

Mocktails for Mom

References:

Burgoyne W. Implications for Ontario: Awareness of FASD in 2009 [Internet]. Toronto (ON): Best Start Resource Centre; 2009. Available from:http://www.beststart.org/resources/pdfs/implications_report_09.pdf

Burgoyne W. Supporting change: Preventing and addressing alcohol use in pregnancy [Internet Handbook]. Toronto (ON): Best Start Resource Centre; 2002. Available from:
http://www.beststart.org/resources/alc_reduction/pdf/participant_hndbk_june05.pdf

Finer L, Zolna M. Unintended pregnancy in the United States: Incidence and disparities.   Contraception [Internet]. 2011 Nov;84(5):478-485. Available from:http://www.ncbi.nlm.nih.gov/pubmed/22018121

Ialomiteanu A, Adlaf E, Mann R, Rehm J. Addiction and mental health indicators among Ontario adults 1977-2009. Toronto (ON): Centre for Addiction and Mental Health (Can); 2011.

Oliver C, White H, Edwards M. Fetal alcohol syndrome: A hopeful challenge for children, families, and communities. Ottawa (ON): Health Canada; 1998.

Parkes T, Poole N, Salmon A, Greaves L, Urquhart L. Double exposure: A better practices review on alcohol interventions during pregnancy. Vancouver (BC): British Columbia Centre of Excellence for Women’s Health; 2008.

Tough S, Clarke M, Clarren S. Preventing fetal alcohol spectrum disorders, preconception counseling and diagnosis help [Internet]. Toronto (ON): Motherisk; 2005. Available from: http://www.motherisk.org/women/updatesDetail.jsp?content_id=737

September 9th is International FASD Awareness Day

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The 9th  day of the 9th month – Fetal Alcohol Spectrum Disorder (FASD) Awareness Day

September 9th is International FASD Awareness Day.  The month and day were selected to highlight the 9 months of pregnancy which are a time when a women should abstain from drinking alcohol.  The first FASD Awareness Day was first celebrated on September 9th, 1999.

According to the Public Health Agency of Canada, “it is estimated that FASD affects approximately one percent of the Canadian population.”

FASD is preventable by avoiding alcohol during pregnancy and education is the key.  If a woman is pregnant or is planning to become pregnant in the near future, she should not drink alcohol.  No amount or type of alcohol is considered safe.  There are many organizations and associations that support FASD prevention and awareness.

To name a few:

FASworld.com

Canadian Centre on Substance Abuse

Canadian Foundation on Fetal Alcohol Research

Motherisk.org

Public Health Agency of Canada

You can learn more about the founders of International Fetal Alcohol Spectrum Disorders (FASD) Awareness Day in this clip by CBC news. The feature starts in at 17 minutes.

Another handy piece of information to know of is Canada’s new guidelines for Low-Risk Alcohol Drinking

A few Resources:

Be Safe: Have an Alcohol-free Pregnancy – printer-ready handouts – available in 11 languages!

Brochure: Aboriginal Pregnancy and Alcohol

Great alcohol-free drink recipes: Mocktails for Mom

Fetal Alcohol Spectrum Disorder  – Health Canada

Fetal alcohol spectrum disorder  – CPS Canada

Some American institutions have created an Awareness Day Packet that contains some information that you can distribute and share.

Brantford’s Camp Unity is no longer one-of-a-kind.

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Brantford’s Camp Unity is no longer one-of-a-kind.

The innovative local summer camp that caters to children and youth with fetal alcohol spectrum disorder has spawned a partner in Halton Region. Camp Unity Halton offered a four-week program at a Burlington elementary school this summer, modelled after the camp operated by Woodview Mental Health and Autism Services and its local community partners.

http://www.brantnews.com/news-story/5803099-imitation-indeed-sincere-flattery-for-camp-unity/