FASD is a complex issue that affects all Canadians and requires our full attention. Unfortunately, every year in Canada, children are condemned to live with permanent disabilities caused by prenatal alcohol exposure. These disabilities will last their entire lives and may worsen without adequate support. During the Committee’s study, a 17-year-old with FASD provided moving testimony describing the many difficulties he has faced because of FASD, but also the interventions that have helped him overcome them.[148] The Committee also heard parents of children with FASD tell their stories – touching stories that attest to their strength, courage and resilience.

Risky alcohol consumption among women of child-bearing age is on the rise in Canada. This is a troubling trend that calls for concerted action from all stakeholders in the fight against FASD, from governments, NGOs and researchers to the many people who work with individuals with FASD. Developing an effective response to FASD also requires involving Aboriginal communities in finding solutions. Their involvement will ensure that solutions are rooted in their beliefs, traditions and cultural practices.

Understanding the issues surrounding FASD is an important first step, but the witnesses agreed that, to genuinely address them, governments need to make a strong commitment and take concrete action. As Ryan Leef told the Committee, “[i]t doesn't all fall under the purview of the federal government. Nonetheless, the federal government can take a role in engaging in those discussions and providing either the necessary financial support, legislative support, or the networking that can often be realized by federal counterparts in this role.”[149]

In 2003, the Minister of Health issued a national framework for action on FASD entitled Fetal Alcohol Spectrum Disorder (FASD): A Framework for Action. It had five objectives:

• (1)  increase public and professional awareness of the issue;
• (2)  develop and increase capacity;
• (3)  create effective national screening, diagnostic and data reporting tools;
• (4)  expand the knowledge base and facilitate information exchange; and
• (5)  increase commitment for action on FASD.[150]

Many of the recommendations made by the witnesses who appeared before the Committee are consistent with these objectives. This final chapter details the Committee’s comments and recommendations regarding the main issues witnesses raised during the study. Since jurisdiction over health care and justice matters is shared by the federal, provincial and territorial governments, the recommendations adopted by the Committee concern only those aspects that fall under federal jurisdiction. Ultimately, the Committee’s recommendations are intended to reduce the number of people with FASD, improve the lives of those who suffer from the disorder and better address their needs to ensure they do not develop secondary disabilities.

5.1 BILL C‑583

At the meetings of the federal, provincial and territorial ministers of justice and public safety held in 2009, 2010, 2011 and 2012, the participants discussed access to justice for individuals with FASD. In 2010, they decided to make this issue a priority and engage in a dialogue with the Canadian Bar Association to find solutions from an access-to-justice standpoint.

In 2013, the Canadian Bar Association adopted a resolution entitled “Accommodating the Disability of FASD to Improve Access to Justice.”[151] Following on the Association’s 2010 resolution on the same issue, this resolution urged the federal government to amend the Code and other legislation according to five principles: FASD should be defined in law; the courts should have the power to order assessments; FASD should be made a mitigating factor in sentencing; the courts should have the power to make orders approving external support plans for individuals with FASD; and Correctional Service Canada should be required to accommodate individuals with FASD who are sentenced to prison for two years or more.

Bill C‑583, An Act to amend the Criminal Code (fetal alcohol spectrum disorder), drew on the Canadian Bar Association’s resolutions. One of the bill’s provisions would have enabled courts to order assessments of accused to determine whether they have FASD.

Studies tend to show that many offenders with FASD go undiagnosed. As a result, courts do not take their condition into account. While it would be better to diagnose individuals before they come in contact with the criminal justice system, experts agree that courts should be able to order assessments of accused when it is suspected that they may have FASD. As mentioned above, while section 34 of the Youth Criminal Justice Act (YCJA) authorizes courts to order that a young person with FASD be assessed at any stage of proceedings, the Code contains no provision authorizing courts to take such action. Bill C‑583, which was withdrawn from the Order Paper by Mr. Leef, attempted to correct this issue. Although some youth court judges have used section 34 to order FASD-specific assessments, a close examination of these cases indicate that courts used a combination of the section 34 assessment power and the guiding principles of the YCJA (example: rehabilitation and reintegration). 

Bill C‑583 also proposed adding a paragraph to section 718 of the Code to make FASD a mitigating factor in sentencing, where it was determined that FASD symptoms contributed to the commission of the offence. On this point, Wenda Bradley argued as follows:

FASD should also not be considered a mitigating factor, but instead an essential factor of consideration for a person before the courts. Respecting persons with FASD, by recognizing the effect this physical disability has on their lives, is critically important. Ensuring that an assessment is available through this amendment for persons before the court would enable an understanding of the functional deficits that underlie real-life problems associated with prenatal alcohol exposure. It is important to recognize that FASD is not a fixable, psychological disorder but is in fact a permanent organic brain disability.[152]

Some witnesses who appeared before the Committee noted the need for an appropriate assessment. They also unanimously said that the organic brain damage caused by FASD – which affects an individual’s abstracting abilities, memory, information processing, comprehension of social rules and expectations, and ability to link cause and effect – must be taken into account in assessing accused at every stage of the process.[153]

However, some witnesses believe that specifically recognizing FASD-related disorders in the Code would be discriminatory. The Regina FASD Community Network said the following on this subject:

Naming FASD specifically in the Criminal Code could serve to further stigmatize and criminalize FASD. While some individuals with FASD have contact with the criminal justice system many do not. Moreover, there is a need to understand that contact with the justice system can be as witness and victims of crime. There is a need to help make the justice system better equipped to help individuals with a wide-range of disabilities. But naming FASD in the Criminal Code is likely to further create associations between FASD and criminality which will only serve to further stigmatize this condition.[154]

As stated by the Canadian Academy of Psychiatry and the Law[155], in a letter to the Committee, the Minister of Justice and Attorney General for British Columbia argued that it would be discriminatory for any reform to recognize FASD but no other cognitive or functional impairments. She noted the following:

British Columbia has legitimate concern for individuals with FASD in the criminal justice system, but our perspective is that any proposals for reform should also consider the needs of those with mental disorders, or suffering from other cognitive disabilities, functional impairment and development delay, which may lead to, and impact their involvement with the justice system.[156]

In light of these considerations:

Recommendation 1

The Committee recommends that more resources be allocated to crime prevention and diversion programs for individuals with fetal alcohol spectrum disorder.

5.2 PREVENTION AND AWARENESS

5.2.1 Upstream Investment

The testimony and briefs provided to the Committee revealed the need to focus on upstream prevention. The evidence heard was consistent on one point: individuals with FASD need help before they become involved in the criminal justice system. As the sponsor of Bill C‑583 said during his appearance, prevention “starts with investments and support in education, social support, housing, employment opportunities, skills development [and] health care.”[157] As noted above, allocating resources upstream is a good investment, as research shows that, without appropriate support, people with FASD are more likely to end up in the child welfare system, develop various health problems – including mental health disorders – live in poverty or be homeless, suffer from addictions, get into trouble with the law and wind up in prison.

The Committee heard that prevention initiatives must be based on research findings and operate on several levels. It is important to establish initiatives that inform the public about the risks of alcohol consumption during pregnancy and to take measures that specifically target women who are at greater risk of having children with FASD, such as giving pregnant women with substance abuse problems priority access to addiction services. Finally, prevention efforts must also aim to improve the lives of individuals with FASD, for example, by increasing access to diagnostic services and tailored support services, and providing postnatal support to new mothers to improve their health and that of their children.

5.2.2 Awareness Campaigns

During the study, a number of witnesses argued that greater public awareness of FASD is required. Better awareness appears to be vital to addressing the general lack of knowledge about FASD and its effects and eliminating confusion about how much alcohol is safe to drink during pregnancy. This confusion persists even though research has clearly shown that even low or moderate alcohol consumption can damage the fetus.

Awareness of FASD is a key factor in reducing its incidence and ensuring interventions are better tailored to people with the disorder. A number of proposals were put forward during the study. For example, one recommendation was to make professionals who work with women who are pregnant or trying to conceive more aware of the importance of openly discussing health and pregnancy issues, including drug and alcohol consumption and violence.

Some witnesses also lamented the major gaps in awareness efforts. Notably, Chief Cameron Alexis pointed out that “[a]wareness in the first nations communities is lacking.”[158]

Professor Cook argued that “[g]eneral education about FASD and its implications plays a critical role in influencing attitudes, approaches, interactions and understanding between front line individuals, affected individuals and their caregivers.” She also maintained that “[t]hese changes can improve experiences and outcomes.”[159]

Considering that a growing number of women of child-bearing age are drinking excessive amounts of alcohol and that half of pregnancies are unplanned, some witnesses called on governments to launch public awareness campaigns right away.[160] Keeping in mind that a woman’s ability to change her alcohol consumption is affected by underlying factors such as poverty and violence, as well as access to support services, Dr. Andrew told the Committee the following:

I'm all in support of awareness prevention campaigns through posters, coasters, or whatever it takes, but there have been really good studies that show awareness of the harmfulness of drinking during pregnancy does not necessarily change the behaviour. The stories of my birth mothers are horrendous. We have looked broadly at the social determinants of health. They are living in poverty and in domestic violence. They are in situations where even if they desperately want to change behaviour, they cannot without help. That's where we need those high-risk mother programs to actually bring them into harm reduction and a therapeutic environment.[161]

To reduce the economic and social costs of FASD, governments must speak with one voice. The federal, provincial and territorial governments need to work together to inform the public and the people who work with those who suffer from FASD that it is a serious but preventable problem and that the quality of life of its victims can be improved.

In light of these considerations:

Recommendation 2

The Committee recommends that the federal government work with the provinces and territories to encourage the development of a fetal alcohol spectrum disorder awareness campaign targeting the general public and specific populations vulnerable to FASD.

5.2.3 Increased Investment in Training for Criminal Justice System Officials

As some witnesses revealed, the FASD training received by officials in the criminal justice system is clearly inadequate. During her appearance, Elspeth Ross made the following observation:

The RCMP had some good training a few years ago from Ottawa and from Manitoba. They were even training judges at one point, but that's all finished now. I've looked at this for a long time, and it seems to be going.... That's my conclusion.[162]

During the study, the Committee also learned that Correctional Service Canada currently provides no FASD-specific training to its staff. Its training covers mental health disorders in general.[163] The Committee is concerned about this situation and, like several witnesses, recognizes that training is vital to both reducing the incidence of FASD and better addressing the unique needs of people with the disorder.

A number of witnesses suggested that FASD training be mandatory for all justice system stakeholders. For example, Elspeth Ross made the following remark to the Committee:

Lawyers, judges, court and probation workers, police officers, social workers, and prison guards all need training and continuing education [on FASD].[164]

In light of these considerations and the federal government’s areas of jurisdiction:

Recommendation 3

The Committee recommends that Royal Canadian Mounted Police and Correctional Service Canada officers receive training on fetal alcohol spectrum disorder as part of their standard training.

5.3 CRITICAL LACK OF RESOURCES

Many of the witnesses who appeared before the Committee deplored the great disparity in resources for FASD in Canada, particularly for diagnostic capacity and community support services. To improve the quality of life of people with FASD, no matter where they live, and to prevent them from developing secondary disabilities, the Committee was urged to acknowledge the pressing need to increase access to diagnostic and assessment services. The members of the Canada FASD Research Network described current diagnostic capacity as follows:

While there are an estimated 380,000 people currently living with FASD in Canada, there is presently a capacity to perform only 2000‑2500 assessments for FASD (in children and adults combined) each year. Wait times for accessing a community diagnostic clinic after referral extend from at least six months to over one year. Most provinces and territories presently have no appropriate diagnostic teams or clinicians who are able to assess adults.[165]

While the Committee is aware that some progress has been made in this area in recent years, it nonetheless believes, like many witnesses, that more capacity is required across the board to meet the needs of individuals with FASD.[166] Canada must open new assessment clinics.

Recommendation 4

The Committee recommends that Correctional Service Canada continue to evaluate community-based best practices to screen offenders for FASD and that FASD be built into the existing mental health evaluation upon admission to a penitentiary.

Recommendation 5

The Committee recommends that Correctional Service Canada consider strategies to help the integration and rehabilitation of individuals with fetal alcohol spectrum disorder who are sentenced to two years or more in prison.

5.4 URGENT NEED FOR DATA COLLECTION AND FURTHER FASD RESEARCH

Canada is fortunate to have prolific FASD researchers. As Professor Pei pointed out to the Committee, Canada is a leader in the field, but a great deal of work remains to be done:

We are being looked to, and I think that's a double-edged sword. To say we are a bit of the leaders, it means that we are on the public stage and people are looking to see how we respond. I think that puts more of an onus on us to respond appropriately.[167]

Like witnesses such as Elspeth Ross, Professor Pei said she would like to see stronger national leadership on FASD. Such leadership could reduce provincial and territorial disparities in the way services are delivered and support networks are created, and improve our knowledge and interventions.[168]

During his appearance, Ryan Leef underscored the important work of NeuroDevNet in identifying FASD biomarkers. The Committee was told that the Government of Canada invested $1.1 million in NeuroDevNet for work on FASD and autism.[169]

NeuroDevNet's Fetal Alcohol Spectrum Disorder (FASD) Research Group is examining gene-environment interactions, predictive biomarkers, and the relationship between structural alterations in the brain and functional outcomes. A fundamental question to be addressed in this research project is how genetic and environmental factors interact with gestational alcohol exposure to produce neurobehavioural and neurobiological deficits in children.[170]

The Committee encourages the continuation of this research and, like the witnesses, hopes it will lead to a more accurate way of identifying those who have FASD and offer better-targeted prevention options. The Committee agrees with the witnesses that research is what will enable us to better understand the factors underlying the many manifestations of FASD, better focus our interventions and combat FASD in a more effective and coherent way.

The Committee also learned about the vital work being done by the Canada FASD Research Network. This organization recently created a centralized database for FASD data from across the country. The database currently contains the files of 289 individuals with FASD. Professor Cook noted the following in her brief:

In Canada, there is a paucity of information on this population, which is desperately needed to build effective, cost-efficient and accessible programming. This data is available in the diagnostic clinics that evaluate and diagnose these patients, but needs to be collected succinctly and using standard mechanisms.[171]

The Committee congratulates the Canada FASD Research Network and, like the witnesses who appeared before it, recognizes that providing standardized data to all researchers is an important step toward finding effective solutions.

For these reasons:

Recommendation 6

The Committee recommends that the federal government work with the provinces and territories, and key stakeholders such as the Canada FASD Research Network, to support innovative research to improve our understanding of fetal alcohol spectrum disorder; inform us about the disorder’s risk factors and protective factors; and help improve health outcomes.

Recommendation 7

The Committee recommends that the federal government work with the provinces and territories to encourage standardized data collection on fetal alcohol spectrum disorder in Canada.