Summary Report National Thematic Workshop on FASD

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5 Identifying Priorities

The second day began with a review of the main themes of discussion from Day One and an overview of the task for the final day of the workshop - identifying national priorities for FASD within the NFSUA.

For this activity, participants had been asked to identify national priorities for FASD within the NFSUA and to share their priorities with the larger group (in preparation for a group ranking task). Somewhere between the explanation of the task and the group reporting of the priorities, the understanding of the task changed for some of the participants and led to discomfort with the activity. As the groups reported their priorities, it began to look like an action plan for an integrated FASD initiative rather than priorities for linking FASD with the NFSUA. When queried, the groups stated that they felt that FASD already had a framework and that it was well thought out and developed through a consultative process. They wanted to see an action plan developed for the FASD Framework. They felt that while it was critical that the frameworks be linked, they wanted the FASD Framework to move toward an action plan and not wait for the NFSUA to be developed and finalized. The delegates who stated that they would like to be involved in developing the FASD Action Plan wanted some assurance that this would happen.

The issues and concerns were processed through large group discussion and the groups proceeded with a modified final task. However, the intent to identify priority areas remained; thus, participants identified four priorities for integration within the NFASUA:

1. Prevention
2. Policy
3. Intervention and Management
4. Community and Families

All participants ranked items (through multi-voting) within each priority area and the results are summarized below:

Priority: Prevention

1. Conduct research to learn which prevention measures actually affect behaviour, for whom, and where, and then link to education, policy and funding.
2. Develop a strategy to address the stigma of addictions so that FASD can rise to the level of a public health issue and be treated and funded accordingly.
3. Provide professional training/education for physicians, nurses, health professionals and social workers based on evidence (be sure to use consistent information and messaging, customize for targeted audiences, and include cross training).
4. Give priority for treatment of pregnant women (including children) with low barriers for access to treatment (expand treatment options, including after care).
5. Screen, identify and engage pregnant women, not only addicted women. (N.B. The last three items received the same number of votes, hence the identical rank.)

Priority - Policy

1. Prepare a business case for FASD, including incidence/prevalence, cost analysis/cost benefit, and communication for comprehension among all stakeholders.
2. Develop partnerships with all stakeholders to create clear roles, responsibilities and clear action plans - federal/provincial/territorial mechanism for communication and work, knowledge transfer.
3. Develop a fund and prioritize a research agenda intended to fill gaps, which is practice-based.
4. Designate FASD as a disability across all sectors.

Priority - Intervention and Management

1. Create lifespan accessibility and eligibility for services based on all FASD diagnoses that are culturally- and language-sensitive.
2. Develop and provide cross-jurisdictional professional training for comprehensive case management.
3. Find out what works and share this with other jurisdictions.
4. Provide adequate funding to meet service needs.
5. Change existing legislation to support the needs of individuals with FASD.

Priority - Community and Families

1. Develop core funding strategies for community groups.
2. Recognize the importance of family-based care and provide seamless services for families and individuals through the lifespan.
3. Empower communities to build capacity with mentorship, support and training as needed.
4. Facilitate national networking among families and communities.
5. Provide a range of promotional tools to raise awareness in communities.

6 Recommendations for Integrating the Frameworks

The afternoon discussion was an extension of the morning discussion. Participants were invited to join one of four groups (prevention, policy, intervention and management, or community/families) to discuss in greater detail messages and recommendations to the CCSA, PHAC and Health Canada around integration of the two frameworks. Each of the groups offered some broad considerations for the three organizations to contemplate as the process moves forward.

For the Community/Family group, participants urged that a set of core values be developed, around which the NFSUA will be implemented, especially with respect to implementation of community services. Group members also commented that it is necessary to develop national standards for training on FASD. One of the areas where participants would like to see more emphasis is that of the important and unique role of fathers. This group also suggested that the term "FASD" be specifically mentioned in the mission, vision and values of the NFSUA.

The Prevention group thought that the goals and strategies from FASD: A Framework for Action set the baseline for action and should be integrated into all areas of the new emerging NFSUA. One of the suggestions for the new Framework was that it should identify ways to create a sustained focus on supporting mothers and promote cooperation between addiction/substance agencies and child protection agencies. Additional linkages that would be important include strategies that address polydrug use, tobacco and prescription drugs. A final word from the group related to leadership: their recommendation was that the NFSUA activities should be guided by multisectoral leadership, including Health Canada, service providers, researchers, provincial and territorial decision makers, experiential women (i.e. birth mothers), the CCSA and the alcohol industry. The entire process should be guided by values and principles similar to those developed and followed by individuals and organizations currently involved in FASD work.

The Intervention and Management group had six core messages. The first was simply a statement of recognition that individuals with FASD are present throughout the service system; they are clients who have complex needs that must be addressed and not ignored. Participants noted that treatment services must recognize the unique needs of individuals with this organic brain disability - it is permanent and irreversible and intervention strategies must accommodate this fact. In order for intervention and management strategies to be effective, prenatal alcohol exposure histories must be taken and that information must be valued throughout all points of contact with the client. When addressing addiction issues with people who have FASD, professionals must know that there is the possibility of change and improvement and the addiction must be addressed not separately, but within the context of the disability. The group also noted that the Framework must recognize that pregnant women who present for treatment must be provided priority service within an appropriate service delivery model. To sum up their comments, the Intervention/Management group reinforced that individuals with FASD who are using or abusing substances require lifelong treatment and a multidisciplinary case management approach. The NFSUA must recognize this and provide for it.

7 Closing Remarks

Michel Perron thanked participants for their presence and hard work, and most of all for their openness, respect and genuine interest. He indicated that the objective of getting everybody together for a meaningful exchange of ideas had been reached and that he felt the meeting was a success.

He invited participants to extend the dialogue that began with this workshop with other colleagues, organizations and the FASD network across Canada. He emphasized that champions are needed to make progress on the issue and that the people present were these champions. Mr. Perron ended by thanking the different individuals who had made the meeting a success.

Mary Johnston echoed Michel's comments and stated that PHAC will be working to take the messages from this workshop forward in its planning over the next few months. She acknowledged the dedication of individuals and organizations in the room, and those who were not able to attend, and extended the Agency's appreciation for everyone's commitment to FASD.

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