Ontario and Waterloo Region Take Action on Fetal Alcohol Spectrum Disorder (FASD)

August 01, 2025

For many years, community groups addressing FASD and the impact of this disorder have been urging the government of Ontario to take action on FASD. “Action is needed to: prevent this lifelong disorder; make accurate diagnostic services available to all citizens; and to implement evidence based support services to prevent the negative outcomes of those affected with FASD”, states Karen Huber co-chair of the Waterloo Region FASD Action Group.

These advocacy efforts paid off in September 2014, when Premier Kathleen Wynne directed the Ministry of Children and Youth Services (MCYS) to create a provincial strategy to address FASD. MCYS immediately established an advisory group and began conducting round table conversations across the province to get the advice from those affected with FASD as well as experts in the field regarding an integrated strategy for FASD in Ontario. Many people in Waterloo Region have been active in this process.

At the same time, the Waterloo Region FASD Action Group realized the need to do things differently for FASD locally. A Community of Practice (COP) was created to guide action. Representation in the COP includes health, social services, education, addictions, the criminal justice system, developmental services, housing and those living with FASD. Waterloo Region and our coordinated system for those living with FASD is recognized across Ontario for our innovative efforts and programs. In addition, Lutherwood secured funding to help coordinate a local strategy and Carizon and the Waterloo Region District School Board (WRDSB) created two classrooms for youth 8-12 years and 13-17 years of age affected with FASD who have difficulty fitting into a regular classroom. Other programs have been created such as: a FASD diagnostic team; Reach for It – a recreational program involving police services; a drop in support service for caregivers and professionals; and programs aimed at the prevention of FASD. For a full list see FASD Services in Waterloo Region (attached).

Fetal Alcohol Spectrum Disorder (FASD) is the term used to describe the range of permanent birth defects caused by alcohol use in pregnancy. FASD does not look the same in each person, it is difficult to diagnose, and the full effects may not be apparent until a child is older. A baby’s brain develops throughout pregnancy, and brain damage can occur at any time if alcohol is consumed. Permanent brain damage is the biggest risk, when mothers drink in pregnancy and it results in an irreversible lifelong invisible disability.

Provincial action is needed to prevent unnecessary suffering by those affected with FASD. FASD, the leading cause of developmental disability is estimated to affect 130,000 people in Ontario. People with FASD are 10-19 times more likely to be incarcerated, 95% experience mental illness and are much more likely to drop out of school. The return on prevention efforts are substantial with studies finding that spending $150,000 on prevention will save $1.5 million dollars in treatment.

September 9th is FASD Awareness Day. Focussing on prevention will have the biggest impact on reducing FASD and it is important to remember:

  • If you are trying to get pregnant, think you might be pregnant, or you are pregnant, the safest choice is to be alcohol free
  • If you drink alcohol, consult your health care provider about always using a reliable form of birth control to prevent an alcohol exposed pregnancy
  • If you have questions about alcohol use visit www.rethinkyourdrinking.ca
  • If you have concerns about your alcohol or substance use, consult your healthcare provider, or talk with a counsellor

We can reduce the incidence of prenatal alcohol exposure and FASD through mindful use of alcohol. Just because it is legal, does not make it safe.

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Media Contact: Kirsten Keil-Mehlenbacher, Region of Waterloo Public Health, 519-575-4400 ext. 2244

This Press Package has been prepared in partnership with Carizon Family and Community Services, Developmental Services Resource Centre, KidsAbility, KWC FASD Consulting, Lutherwood, Paula Stanghetta & Associates Inc, people living with FASD and the Region of Waterloo Public Health and Emergency Services,

Backgrounder

Did you know?

  • FASD Is the leading cause of developmental disability in Canada
  • FASD affects 1-2% of Canadians. Experts feel the rate is higher as diagnosis is difficult
  • FASD costs Canadians 5.3 - 7.6 billion dollars every year in care
  • Investing $150,000 on FASD prevention saves $1.6 million in treatment – huge return on investment
  • Diagnosis of FASD is limited, difficult and often not funded, resulting in a cost of $3000-5000
  • People with FASD are 10-19 times more likely to be incarcerated and 95% suffer with mental illness

Fifty percent of pregnancies are unplanned so waiting until a woman is pregnant to make her aware of the dangers of drinking in pregnancy is too late. Women need to be aware, monitor and control their drinking habits before they are pregnant.

From 2003 to 2010, women aged 25-34 years experienced the fastest increase in risky drinking of any age group and gender and this age group accounted for over 62% of births in Canada. In fact, when the new definition of risky drinking for women is considered, consuming 3+ drinks per occasion once a month or more, 50% of women aged 15-44 drink alcohol at risky levels. Considering this, and the high rate of unplanned pregnancies it underscores the importance of educating women about the dangers of drinking alcohol before and during pregnancy.

What Can You Do?

  • Ensure everyone around you knows the real risks of drinking in pregnancy
  • If you are a woman who drinks, or you have sex with women who drink, always use reliable birth control to prevent an alcohol exposed pregnancy
  • Find out about Canada’s Low Risk Alcohol Drinking Guidelines and follow them to decrease the risk of FASD, chronic disease and a potential addiction to alcohol
  • Assess your own drinking habits at www.rethinkyourdrinking.ca

What Can Ontario Do to Decrease the Rate of FASD?

  • Ensure all health care providers discuss the dangers of alcohol use in pregnancy
  • Create an integrated strategy to address FASD. Western provinces have organized approaches to address FASD, and they have realized savings and improved outcomes with this approach
  • Ensure alcohol pricing increases as inflation increases
  • Ban the sale of alcohol in convenience and grocery stores. In areas with a high density of alcohol outlets studies have found the rate of problems associated with alcohol use increases significantly.
  • Ensure all establishments selling alcohol post the provincial sign warning about the dangers of drinking in pregnancy in a prominent place as required by Ontario law (Sandy’s Law).
  • Encourage more alcohol-free events in communities, universities and colleges
  • Raise awareness at universities, colleges and high schools about the dangers of drinking. Drinking increases the risk of alcohol exposed pregnancies, future addictions and chronic diseases

What Can You Do to Help Those Affected with FASD?

  • Educate yourself about FASD and the impact on your community
  • Talk to policy makers about the need to increase resources for FASD
  • Talk to and offer support to a parent/caregiver supporting a child/adult with FASD

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FASD Fact Sheet
Frequently Asked Questions

Services for Pregnant or Parenting Women Involved with Alcohol and/or Drugs
Services for Pregnant or Parenting Women Involved with Alcohol and / or Drugs

Increasing Awareness and Service
Increasing FASD Awareness and Service in Waterloo Region and Ontario