Appendix: Fetal Alcohol Spectrum Disorder (FASD): A framework for action – Consultations on the draft framework for action

Appendix: Consultations on the Draft Framework for Action

A. About the Consultation Process

In late fall 2002 to early fall 2003, Health Canada undertook consultations and discussions with organizations across the country to discuss a draft Framework for Action on FASD. The early draft, entitled "A National Framework for Action on FAS/FAE", was prepared by Health Canada and shaped by the National Advisory Committee on FASD, Regional staff and the Interdepartmental Working Group on FASD. The document took the form of a consultation workbook and was distributed both electronically and in paper version directly to over 15 national organizations with current or prospective interest in addressing FASD. Staff from Health Canada's Division of Childhood and Adolescence met with each group to present the draft framework and discuss initial reaction and suggestions for improving and strengthening it. For the most part, discussions of the draft framework were included as one component of a broader meeting.

The consultation process was developed collaboratively and participants were identified through the existing networks. In particular, Health Canada Regional staff, in collaboration with members of the National Advisory Committee on FASD, drew on the diverse communities of organizations and individuals they work with across the provinces and territories, resulting in a rich and diverse cross-section of expertise, experience and knowledge. As well as professional expertise, the contributions of parents and foster parents were captured in many of the consultation discussions and are reflected in the Framework.

In addition, a number of organizations met with representatives of their own networks, often within a region of the country, or within a community of interest (e.g., Aboriginal representatives). Finally, the draft Framework for Action was disseminated electronically and feedback was provided by many who reviewed the document independently and offered suggestions and insight on behalf of their organization or themselves. In total, it is estimated that over 500 people met to discuss the Framework and the issues surrounding Fetal Alcohol Spectrum Disorder, representing a rich diversity of interests in FASD, a broad spectrum of organizations and individuals and a strong interest in making a difference in the lives of people living with FASD.

The following highlights capture key points made during the consultation discussions, as well as advice and ideas offered through written submissions - from the organizations consulted, and from interested individuals in those groups who took the time to review and submit feedback to Health Canada. While highlights of feedback are presented here briefly, the substance of the advice offered is reflected in the revised Framework for Action - the preceding section of this report.

In general terms, there is widespread agreement on many issues - the consensus on the need for a Framework, the need for action at all levels and across all sectors is clearly evident. At the same time, consultation results show the importance of a Framework for Action that encourages and facilitates local flexibility in addressing the complexities of FASD.

B. Feedback and Advice on the Process

Stakeholders welcomed the Framework - based on specific comments and overall tone of many of the consultation sessions, participants were generally pleased to have an opportunity to shape the draft Framework into a document that will inspire and guide action in communities across the country.

At the same time, participants offered constructive feedback and advice on the consultation approach and process, and advice for future consultations on the issue of FASD. By far the most frequently offered advice is to ensure that the consultation process be more inclusive and community driven. In particular, many stakeholders suggested that Aboriginal groups and community-based groups be at the centre of future consultations, and that people with FASD and their families be active participants as well.

Connect with communities and families living these lives.

More specifically, comments suggest that:

The consultation process must include key groups...

  • Persons directly affected by FASD and their families/caregivers
  • Aboriginal organizations, communities, and governments
  • Women of child-bearing years, especially those with alcohol/drug dependencies
  • Community-based groups and service providers, including ethno-cultural groups

The consultation process needs to be community driven. In particular...

  • Recognize that this is a community problem for which everyone has to take ownership
  • Ensure that local/regional needs and priorities are taken into account
  • Encourage innovative approaches related to the assessment of needs and opportunities of different types of communities

Look at the determinants of health to see who should be included at the national, provincial, regional and local levels - education, social services, justice, finance, housing, health services and health professionals, gender groups, poverty coalitions, etc.

Participants in future consultations should include...

  • First Nation, Inuit and Métis governments, other Aboriginal organizations, and community groups and leaders at the national, regional and local level
  • Community-based groups and service providers - NGOs, social service agencies/providers, frontline workers, health care workers, educators, police, etc.
  • People who are living with FASD and their families/caregivers
  • Key provincial/territorial government departments - education, health, justice, human resources, community development and family services, social services, corrections

C. Feedback and Advice on the Draft Framework

The draft Framework included a variety of elements, including rationale for the Framework, an overview of activity to date, the consultation process, an overview of FASD, as well as four substantive components of a Framework - scope, guiding principles, vision and goals. Comments and suggestions were offered on all four of these substantive components, and many stakeholders made general comments that could apply to any or all of the scope, principles, vision and goals. To the extent possible, comments and ideas have been grouped into these four components, below.

Improve the scope...

Stakeholders expressed various views about the scope of the draft Framework - while many thought the initial scope was appropriate, others thought it was too broad (e.g., deals with too many target groups, too many issues), while some thought it was too narrow (e.g., it should deal more generally with alcohol use in our society, or it should include alcohol and drug use, or it should include alcohol use by breastfeeding mothers).

Perhaps the strongest and most consistent advice offered about the scope concerned the lack of separation of the core "needs" - namely, prevention of FASD, improving the quality of life of those with FASD (and their families), and addressing gaps and inadequacies in the systems for both prevention and support.

Other key points about the scope advise that the revised Framework:

  • Be offered as a document to facilitate and help communities to take action, rather than direct their work
  • Clearly support the needs of women, children and families - ensuring that women are not targeted as the "problem"
  • Identify roles and responsibilities for various groups as action plans are developed (others cautioned against this, as such an approach would be too directive and not flexible enough to accommodate ethno-cultural needs and approaches)

Create a positive vision...

"FASD is not just a women's issue or an Aboriginal issue - we are all invested in finding solutions."

Participant from Alberta in the FASD Consultations, 2003

With respect to the vision, many suggested that the revised Framework include a vision that is more positive (showing where society could be, not focusing on how to get there), one that:

  • Balances the need to prevent FASD with the need to support women who are at risk for having a child with FASD and the need to support those with FASD and their families
  • Recognizes the need for system change (across all sectors with a potential role in preventing FASD and supporting people with the disability)
  • Provides more specific references to and/or examples of the ideal is that is being sought after through the Framework and action

Streamline and clarify the goals...

The consultation results show that, in general terms, the spirit and content of the initial eight goals are well supported. At the same time, suggestions were offered for expanding the content of the initial goals, while reducing unnecessary duplication. Collectively, the advice offered calls for fewer goals that are more comprehensive and that are supported by examples of how the goals could be achieved (with examples of strategies or action that can be measured). It was also suggested that some of the goals would more appropriately be included as guiding principles. Many of the comments suggested that the goals as presented in the draft Framework were too cryptic to be well understood by the diversity of groups that will need to share a common understanding of what needs to be done in prevention, support and system improvements.

Other comments and suggestions about the goals include:

  • Ensuring that women, children, families/caregivers and communities "see themselves" in the goals
  • Specific reference to adults with FASD, including that FASD is a life-long disability
  • Recognition that achieving the goals will require financial resources
  • Avoid using the term "surveillance" as it suggests "watching women to see if they are drinking"

Strengthen the guiding principles...

The guiding principles in the draft Framework were seen by many of those who commented on them as being more relevant to the consultation process than to the action that needs to take place. Stakeholders advised that the guidelines be revised to provide clear, broad principles that focus on inclusiveness, compassion and respect, and ethno-cultural appropriateness.

"We need to emphasize that with appropriate supports, people with FASD are working, going to school and living fulfilled lives. We need to give hope."

Participant from Alberta in the FASD Consultations, 2003

Draft framework as a whole...

Several called for inclusion of the need for dedicated funding and even more specific information particularly on supports and services needed in the vision, goals and throughout the Framework. Looking down the road to implementation of action plans, some also suggested that new organizations need to have the chance to receive funding. Other frequent comments that span the entire Framework and that stakeholders believe need to be reflected in the document include:

  • Sensitivity to those affected by FASD and their families
  • The need to address head-on the social stigma of drug and alcohol use
  • Appreciation and understanding of the underlying causes of FASD (root causes and "determinants of health")
  • The importance of keeping in mind the best interests of those directly impacted by FASD
  • Adoption and use of the term Fetal Alcohol Spectrum Disorder as the "umbrella term", as such terms as FAE (incorrectly) imply less severe conditions
  • Providing concrete ideas for each part of the framework - communities will need help exploring ways to use the Framework effectively as they develop local plans
  • Even though it is a Framework (and not an action plan), keep it action-oriented ("going somewhere") and clearly inclusive
  • Recognition that a federal/provincial/territorial group must be created and effective - particularly to address the secondary disabilities dealt with (prevention, support and services) by provincial ministries (e.g., education, corrections, social services)
  • Recognition of the need to develop a "business case" for FASD prevention - factual information that presents the social and economic costs of FASD
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