Summary Report National Thematic Workshop on FASD

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1 Introduction

1.1 Context, Purpose and Agenda

This report provides a summary of the presentations and group discussion heard during the National Thematic Workshop on Fetal Alcohol Spectrum Disorder (FASD) held in Ottawa on March 29 and 30, 2005. The Canadian Centre on Substance Abuse (CCSA) hosted this workshop in partnership with the Public Health Agency of Canada (PHAC). The idea for a national workshop on FASD emerged as a result of several converging events and issues. Within the wider addictions context, the renewal in May 2003 of Canada's Drug Strategy (CDS) provided a much-needed opportunity to develop a comprehensive and coordinated national approach to reducing the harm associated with alcohol and other drugs. As part of this exercise, the CCSA and the Healthy Environments and Consumer Safety Branch of Health Canada were leading a broad consultation on a proposed National Framework for Action on Substance Use and Abuse (NFSUA). The NFSUA would link with other similar efforts, including the National Framework for Action on FASD. As part of the development of the NFSUA, CCSA and PHAC were coordinating and/or leading a series of thematic workshops to add to the collective understanding of key substance abuse issues and to identify key priorities for action among these. In November 2004, the CCSA hosted a national thematic workshop on alcohol policy. At that event, it became evident that, notwithstanding the unique interests of both FASD and alcohol interest groups, several areas of common interest were under-explored. It was felt that the emerging NFSUA would greatly benefit from an FASD-specific workshop aimed at identifying key linkage areas between the two respective Frameworks. A national workshop would aim to address both of these areas.

The objectives of this workshop were (1) to identify and prioritize issues of national significance in FASD as they relate to the development of the alcohol portion of the NFSUA, and 2) to identify areas for linking the National Framework on FASD with the NFSUA. An unstated, but implied outcome of the meeting was the opportunity to build and strengthen national partnerships within the FASD community.

The Workshop Agenda offered a mix of formal presentations and structured small group discussion, leading to large group reaction and summary. The Agenda is found in Appendix 1.

1.2 In Attendance

Of the 52 participants who were invited to attend the workshop, 36 were able to participate. Participants included those with longstanding involvement in FASD, such as individuals living in families with children who have FASD, front-line workers dealing with clients who have FASD, national non-governmental organizations (NGOs), regulatory bodies, practitioners, researchers, academics, and federal and provincial government representatives. In addition, invitations were extended to newer partners who are committed to supporting efforts to address FASD, such as the alcohol beverage industry. The list of participants is found in Appendix 2. Paula Stanghetta, CCSA Associate, provided design, facilitation and note-taking services.

1.3 About This Report

The purpose of this report is to capture the essence of the small group discussion and summarize the key points from the event. It is not intended to be a comment or editorial on the outputs of this consultation. Every effort has been made to stay as close as possible to the participants' own words.

The intent is to circulate the report widely across Canada. It will be sent to those who were unable to attend, and to partners and stakeholders in the FASD network. Readers will be encouraged to share their thoughts about the report, about the event and about what needs to happen to keep the momentum alive.

The authors regret any omissions of significance or distortions that may inadvertently have occurred.

2 Setting the Stage for Discussion

2.1 Opening Remarks

The workshop began with opening remarks from Michel Perron, Chief Executive Officer of the CCSA, who thanked participants for taking the time to participate in the event and who brought a diverse and rich set of experiences to the group.

As Canada's national addictions agency, CCSA has had a long tradition of addressing substance use and abuse issues by working collaboratively with governments, researchers, enforcement agencies, treatment professionals and the private sector. Since the mid- 1990s, it has been involved in the FASD issue by providing information, reference and consultation services through its toll-free service. It has contributed to the development of several key documents on FASD and has more recently conducted a scan of FASD training events across Canada. CCSA is committed to ensuring that FASD is fully integrated into both the public health and addictions landscape and will do that through its three global activities of transferring knowledge, developing policy and building partnerships. Mr. Perron provided an overview of the CCSA and highlighted its commitment to FASD as an issue of national public health significance.

Mary Johnston, Manager of the FASD Team, PHAC, addressed the group with opening remarks that described current work and emerging developments in the newly named "Health Portfolio" that relate to FASD. The Health Portfolio includes the PHAC, the First Nations and Inuit Health Branch (FNIHB), the Canadian Institutes of Health Research (CIHR), the CCSA, the Health Products and Food Branch, and the Healthy Environments and Consumer Safety Branch. Together, these organizations are responsible for the Pan-Canadian FASD Initiative whose mission is to promote and protect the health of Canadians through leadership, partnership, innovation and action in public health.

In addition to the organizations mentioned above, Ms. Johnston acknowledged the wider network of partners that contribute to the FASD initiative, including:

• Human Resources and Skills Development Canada
• Social Development Canada
• Justice Canada
• Indian and Northern Affairs Canada
• Public Safety Canada

Together, these partners are demonstrating a tremendous commitment to ensure that FASD remains high on the government and public policy agenda.

2.2 The National Framework for Action on Substance Use and Abuse

Colleen Ryan, Manager, Canada's Drug Strategy (CDS) Evaluation, Risk Management and Reporting (Canada's Drug Strategy Secretariat - Drug Strategy and Controlled Substances Program - Health Canada) provided an overview of the development to date on the NFSUA. She outlined the consultation process and additional activities that are helping to shape the NFSUA. The purpose of the NFSUA is to provide a visible pan-Canadian structure within which to:

• articulate principles and goals
• set direction and priorities, and coordinate action
• define roles, responsibilities and accountabilities of all partners
• share information about best practices and facilitate evidence-based decision making

At the present time, the NFSUA is in the conceptual stages. Several activities have already occurred that will provide input to it, including the:

• Canadian Addiction Survey
• Canadian Cost Survey
• Northern Addiction Survey
• Canadian Community Health Survey
• CCSA - Substance Abuse in Canada: Current Challenges and Choices
• Workforce Development Survey

An extensive process is well underway and includes preliminary consultations, videoconferences, consultations focusing on corrections issues and thematic workshops (of which this is one). Yet to occur is the Biennial Forum scheduled for June 2005 and the National Addictions Conference planned for November 2005.

Some of the preliminary findings that the process has revealed include:

• the need for integration/linkages (of strategies, approaches, information) at various levels and around different issues
• the need to identify and bridge research gaps and facilitate knowledge transfer
• the need to make alcohol use and its relation to FASD a priority
• the need for addictions to be fully integrated and highlighted as part of the health care system - at policy, programming and service delivery levels

Clearly, much still needs to be done and while there are challenges, there is tremendous momentum and a solid idea of next steps.

2.3 Fetal Alcohol Spectrum Disorder (FASD): A Framework for Action

Mary Johnston reviewed the National Framework on FASD in her presentation. She acknowledged that the document was familiar to most in the room and that many had participated in the creation of the Framework. PHAC is committed to ensuring that the Framework continues to evolve and will be looking at ways to build action plans out of the Framework. The Framework identifies five broad goals:

1. Increase public and professional awareness and understanding of FASD and the impact of alcohol use during pregnancy.
2. Develop and increase capacity in communities.
3. Create effective national screening, diagnostic and data-reporting tools and approaches.
4. Expand the knowledge base and facilitate information exchange.
5. Increase commitment and support for action on FASD.

Encouraging progress has been made since the Framework was released in 2003 and the guideposts it offers continue to support ongoing collaboration and coordination across the country.

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