Summary Report National Thematic Workshop on FASD

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3 Key Messages

3.1 Initial Group Discussion

The opening presentations were intended to stimulate discussion. Participants were then divided into small groups to respond to a series of questions.

The first question participants were asked to discuss was: How should the National Framework for Action on Substance Use and Abuse and the Fetal Alcohol Spectrum Disorder (FASD): A Framework for Action be linked?

Most participants agreed that the two Frameworks should be linked and gave supporting reasons for their viewpoints. One of the realities that made this exercise somewhat frustrating for participants was not having a draft NFSUA to refer to since it is currently in development. Nevertheless, participants embraced the task enthusiastically.

Participants felt strongly that integration of the two Frameworks was critical. They suggested that it should be approached horizontally rather than vertically - that is, integrating and weaving FASD into every element of the NFSUA. This would be better than addressing FASD as a component on its own within the NFSUA. Part of the reasoning for this position is that FASD is a multifaceted disorder, impacting various sectors of society and requiring shared responsibility of many stakeholders to address it adequately. In fact, participants referred to FASD as a public health issue and not simply one of addiction.

Given that the Framework for Action on FASD has already been developed and disseminated, participants suggested that its goals be reaffirmed and used as a building block to identify potential areas for action and integration into the NFSUA.

There was much discussion about the potential to lose FASD under an "addictions" umbrella. The concern here is that participants feel FASD is not solely an addictions issue. In fact, one does not necessarily need to be addicted to alcohol to have a child who is born with FASD. Participants stated that there still is a lack of understanding of FASD, even though the disorder was named over 30 years ago and public and professional awareness has occurred at various levels. Because of these reasons, participants felt that embedding FASD within an addictions umbrella may be too broad a designation and possibly cause FASD to disappear or lose potency as a real public health issue.

Several comments were made about the need to have a national coordinating body, although how this related to integration with the NFSUA was not clearly articulated. It was expressed, however, that a coordinating body would ensure better alignment of support services and the allocation of funding for client services, which is desperately needed.

Participants indicated that questions about FASD need to be incorporated into current national data collection efforts. Existing surveys, consultations and discussions that focus on substance use, abuse and addictions should also solicit feedback on a range of topic areas related to FASD. This would help contribute to our understanding of the national picture of FASD.

Although encouraging progress has been made within the FASD field in terms of diagnosis, particularly with the release of the Diagnostic Guidelines, much needs to be done around supporting individuals post-diagnosis. Participants suggested that those writing the NFSUA consider that communities, individuals and families need support post-diagnosis.

Horizontal integration (as described earlier) of the two Frameworks would also facilitate the opportunity to address FASD holistically - something that is not currently happening consistently in Canada. This would include programs and policies that are focused on breaking the cycle of alcohol abuse, treatment for individuals with FASD and increased supports for women who are alcohol dependent. As the NFSUA is developed, participants suggested that the treatment needs of individuals with FASD be considered.

There was encouragement from the group to identify existing resources that could be used to address FASD on a larger scale (i.e. nationally), and that wherever possible the NFSUA promote the use of resources that have already been developed.

A final comment on integration of the two Frameworks referred to the need to link prevention, intervention and support, and to do so at all levels of government.

The second question was: "Which FASD themes would best link to the NFSUA?"

Participants identified three particular FASD themes that might link best to the NFSUA: diagnosis, prevention and education. With respect to diagnosis, participants recognized that while the Guidelines are "national," there must be a regional flavour or approach when it comes to implementation. There is great diversity across Canada around diagnosis; this must be recognized and worked through if real progress is to be made. Participants indicated that when it comes to prevention and education, a national overall approach is required. Champions are needed to bring all of these areas together for success, and they must be visible and active at both the national and provincial/territorial levels.

The third question was: "What would be the benefits of a coordinated effort (around FASD and substance use and abuse)?"

Participants strongly agreed that there must be coordination between the initiatives in FASD and those in substance use and abuse. Participants were surprised when they learned that FASD was not addressed more prominently during the previous alcohol consultations. There was a sense that this was a significant, yet not totally unexpected, example of how FASD is still seen as an issue that is separate from addictions discussions. There is a responsibility for those within each area to reinforce the connection between FASD and the broader addictions field.

Participants noted that there is still a pressing need for terminology, definitions and vocabulary to be much clearer. This might simplify coordination efforts.

The final question asked whether there is a risk of confusion, duplication of effort and competing priorities, and, if so, how they should be addressed. Although participants thought that there may be a risk of duplication, most agreed that it could be addressed by ensuring that terminology was clear and consistent, by committing appropriate funding and related resources, by seeing FASD as a national public health issue, and by being sensitive to how FASD is integrated into a broader framework. Some of the groups did not respond completely to this question: it may have been a matter of time available to complete the task or a misunderstanding of the task.

3.2 Summary Insights

Participants finished the morning session by sharing insights from the linkages discussion, some of which repeated comments from the initial discussion and others that were broader. Participants reinforced the fact that the FASD Framework is already developed and familiar to those who are working within the FASD area. It contains specific goals and ideas around action to support the goals. The NFSUA is still in the formative stages; thus, this is the best time to look at opportunities to link the two. One of the ways to achieve better linkages is to include FASD as part of the Canadian Addictions Survey. Almost every aspect of the addictions field (practices, training, treatment) presents an opportunity to link into the FASD field and vice versa. Participants acknowledged that communication within the FASD community needs strengthening. All constituents need to identify ways to share their experiences, lessons learned and successes with each other. This is not currently happening, and it is believed it can lead to "silos of silence." Overall, both fields need to be more forthcoming in recognizing the tremendous impact of FASD on our society, our economy, and on those individuals affected by it.

4 A National Tour of FASD

To highlight some of the accomplishments across the country around FASD, several brief presentations were given by individuals who are involved with FASD.

4.1 Diagnostic Guidelines - Dr. Nicole LeBlanc

Dr. Nicole LeBlanc (member of the Sub-Committee of the NAC on FASD that developed the Guidelines) described the development of the Diagnostic Guidelines. Given the recent release of the Guidelines, not all participants had received copies. As a member of the group responsible for developing the Guidelines, Dr. LeBlanc noted that the process involved extensive national consultation. She indicated that the Guidelines are not prescriptive, but are intended to facilitate diagnosis and fill a much-needed gap in this respect. Tasks yet to be undertaken include the dissemination of the Guidelines, establishment of a national data collection system using information from the Guidelines, and training for individuals in the use of the Guidelines. Dr. LeBlanc stressed that diagnosis is very complex and while the Guidelines are a welcome tool, their use will require substantial collaboration among all stakeholders to maximize their usefulness.

4.2 Public Health Agency of Canada/First Nations and Inuit Health Branch - Ms. Mary Johnston

Mary Johnston described the Pan-Canadian FASD Initiative that is part of the Health Portfolio, defined as PHAC, Health Canada branches such as First Nations and Inuit Health Branch, Healthy Environments and Consumer Safety Branch, Health Products and Food Branch and the Canadian Institutes of Health Research, Canadian Centre on Substance Abuse. With PHAC as lead, the Initiative is working with several federal partners, including:

• Human Resources and Skills Development Canada
• Social Development (Homelessness) Canada
• Justice Canada
• Indian and Northern Affairs Canada
• Public Safety and Emergency Preparedness Canada (Crime Prevention Centre, RCMP, National Parole Board, Corrections and Aboriginal Policing)

The Initiative has six main activities: Policy Development; Coordination and Collaboration; Identification, Screening, Diagnosis and Monitoring; Professional Awareness and Education; Public Awareness and Education; and Capacity Building. A parallel initiative is underway in FNIHB with the goal of reducing the incidence of FASD births and improving the quality of life for those affected by FASD.

4.3 Motherisk - Ms. Susan Santiago

Susan Santiago, FACE Research Network Coordinator, provided an overview of the Motherisk Program operating in Toronto and focused on the telephone-based support to callers across Canada. The program offers information and counselling about medications, chemical and other exposures, nausea and vomiting during pregnancy, alcohol and substance use in pregnancy, and HIV treatment in pregnancy. The service receives between 35,000 and 40,000 calls each year. In addition to the phone support, Motherisk provides pediatric FAS assessment and diagnosis and is a founding partner of Breaking the Cycle (community-based program that provides services and support for drug- and alcohol-involved mothers and their children with funding contribution from PHAC). Several research initiatives are in progress as well as an annual FACE Research Roundtable that Motherisk established in 2000 and continues to offer in partnership and sponsorship with The Brewers of Canada and the Canadian Mothercraft Society.

4.4 Fetal Alcohol Syndrome Society of the Yukon (FASSY) - Ms. Judy Pakozdy

Judy Pakozdy of the Fetal Alcohol Syndrome Society of the Yukon (FASSY) described how parents formed the organization almost 20 years ago to address FASD among adults. FASSY currently works with approximately 50 adults who are suspected of having FASD. The organization receives all of its funding from projects and proposals and has no core funding. FASSY is a thriving example of the passion and energy that committed individuals can harness to respond to a need when services and supports are limited or non-existent.

4.5 British Columbia - Ms. Nancy Poole

Nancy Poole, Research Consultant on Women and Substance Use, BC Women's Hospital and British Columbia Centre of Excellence for Women's Health, described five core areas where British Columbia is working to address prevention of FASD by working with women. The work is a combination of research, policy, programs and training. The approach in the province is characterized by collaboration and integration among many initiatives, looking for opportunities to link efforts wherever possible.

4.6 Key Messages - Afternoon Discussion

Although the presentations were only a very small sampling of the type of FASD work across the country, they gave a glimpse into the diverse efforts that are ongoing. Each participant brought a variety of experiences to share. Thus, the afternoon discussion was designed to generate response from the large group around activities/interventions that Canada is "doing well" (and should continue doing), along with activities and interventions that we need to "stop doing." Participants suggested an additional category for discussion called "what we should start doing" and offered many suggestions.

In the doing-well category, participants identified several prevention-type accomplishments that included promoting general awareness of harms of alcohol use during pregnancy; welldesigned primary prevention messages; the Best Start prevention campaign; and bilingual public awareness campaigns. Participants felt that we are doing well in supporting families at the beginning of the life cycle (0-6 years of age) and in prenatal programs. We are doing well in identifying and implementing best practices, and creating and evaluating models for service. When it comes to what we are doing well with respect to women, participants said that differentiating women's treatment services is starting to progress; that we are getting better at engaging pregnant women in care; that treatment is becoming more womancentred; and that we are doing well at outreach to pregnant women. We are building bridges to Aboriginal communities. The Aboriginal HeadStart Program was mentioned as an example of good work with Aboriginal people. CCSA's clearinghouse function was identified as a resource that is meeting a need across Canada. The grassroots movement is strong and growing, as are the supports for families and peers and especially mentorship programs. The guiding partnerships that PHAC has fostered with the provinces and territories seem to be working well. Participants were quick to note that while there are many examples of what is working well, it does not mean that the activities are happening everywhere in Canada or that there is any systematic, coordinated effort to ensure the successes are being replicated for greater impact.

There were plenty of ideas about what we should stop doing around FASD. Most fell into a few broad categories: funding, service delivery, coordination, and awareness/education. On the funding issue, many comments were made about barriers to accessing funding, that funding is erratic, that funding mechanisms deter community collaboration, and that the current trend to fund demonstration projects only is limiting - especially when "successful" projects cannot extend beyond the demonstration phase. One individual noted that we should stop "unfunding" programs that are shown to have impact.

On the service delivery side, participants felt that we need to stop carrying on with "business as usual." This can happen in several ways: when we use IQ as a determinant for services; when we see FASD as an Aboriginal- or women's-only issue; when we continue to reinvent the wheel (by keeping mental health, addictions, violence against women and other similar areas as separate rather than related issues); when we put up barriers to treatment; when we see addiction as something that ends; when we use judgmental approaches; when we do not continue service after the age of 6; and when we fail to stop inappropriate interventions.

In terms of coordination, participants stated that we need to stop having communities develop their own resources and approaches. Perhaps it is time to take a closer look at what works, how it can be adapted for different areas, and then implement and evaluate to determine impact. This can happen only when the current disconnection that characterizes the field (from program delivery to national policy development) is reversed. This disconnect also occurs with respect to FASD curriculum that is being developed in many areas of Canada.

As far as awareness/education efforts are concerned, participants indicated that we must stop inconsistent messages around alcohol use in pregnancy. National, consistent and clear messaging around "how much alcohol is too much" would minimize the confusion around what is safe for women who are pregnant. Some participants thought that the use of posters is ineffective and should be stopped, along with duplication that is occurring around primary prevention messages.

The list of start-doing ideas includes some of the points mentioned in the previous two categories, demonstrating that while some parts of Canada have made progress in certain areas, much needs to be done. Key suggestions included:

• establish a national school curriculum
• develop core competencies for training service providers in all sectors and institute accreditation for trainers
• fund adult diagnosis and services
• implement a national public awareness campaign on FASD
• create a cost/benefit analysis to serve as a foundation for building a business case for FASD
• develop a "standardized" functional assessment
• start collecting reliable Canadian statistics on FASD

Participants stated that we need to start improving communciation with and between levels of govenment on FASD and encouraged all stakeholders to develop long-term plans and visions.

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