Framework: Fetal Alcohol Spectrum Disorder (FASD): A framework for action

An immediate challenge is ensuring that the vision and broad goals of the Framework are clearly understood and embraced by governments, organizations, families and communities across Canada. While the Framework reflects the views of hundreds of individuals and organizations, captured during national consultation efforts in 1999 and again in 2002-2003, it is clear that communities across the country are at varying levels of understanding, commitment and capacity for action.

B. About FASD

What it is...

Fetal Alcohol Syndrome (FAS) is the leading cause of developmental disability among Canadian children. FAS was first established as a medical diagnosis in 1973. Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term increasingly used to describe the spectrum of disabilities (and diagnoses) associated with prenatal exposure to alcohol. FASD is not itself a diagnostic term; rather the diagnoses under the FASD umbrella include:

• Fetal Alcohol Syndrome (FAS)
• partial FAS (pFAS)
• Alcohol-Related Neuro-developmental Disorder (ARND)
• Alcohol-Related Birth Defects (ARBD).

While preventable, FASD is a complex, multi-faceted, public health and social issue that affects Canadians in all walks of life, in all regions of the country. In some First Nations and Inuit communities, given the history of colonization and devaluation of culture, rates of FASD may be higher than the national average.

How it happens...

A mother's use of alcohol during pregnancy affects the developing fetus, causing a range of serious physical and mental defects. The impact of alcohol varies with the amount, timing and frequency of alcohol consumed, and depends on a number of other factors, including the genetics of the fetus and mother, and the overall state of health of the mother as well as other social, economic, physical and environmental factors.

Ideally, FASD-related diagnoses are made by a trained, interdisciplinary clinical team using established criteria.

What's been done...

Since the early 1980s, a patchwork of awareness campaigns and activities has grown to support women at risk of using alcohol during pregnancy, as well as to meet the needs of people and communities affected by FASD. Research, monitoring and evaluation of individual initiatives have also increased.

A starting point for more action...

At the same time, many people affected by FASD do not receive adequate and consistent support and services. The lack of an integrated national strategy, standardized diagnostic and screening tools and comprehensive epidemiological research, has meant that progress toward consistent and effective prevention and support has been slow. This Framework for Action is a starting point for coordinated, collaborative action.

C. Vision for the Future

Imagine a world in which...

... individuals, families/caregivers and communities across Canada protect children from prenatal exposure to alcohol because they are supported and informed in a way that recognizes and reflects their health, social, economic and ethno-cultural circumstances and needs... a world in which FASD is effectively prevented in all communities across Canada.

Setting the Stage for Future Action on FASD

"My daughter is getting the help she needs in school, my boss is letting me work from home some days, and now our whole family is functioning well again."

Mother of a child with FASD

Individual and collaborative action is required in all sectors, at all levels - federal/national, provincial/territorial and community. Future effort needs to build on the excellent work done to date, focusing on prevention, meeting current needs of people with FASD, and strengthening and expanding the system of supports, services and resources.

Possible strategies include...

• Developing and disseminating clear, easy-to-understand information about the impact of FASD on individuals, families, communities and society for use by community organizations, individuals, families and caregivers
• Developing and disseminating clear and current information about FASD for professionals in all sectors (including health, education, justice, law enforcement, corrections, child welfare and social services) positioned to help prevent FASD in a non-judgmental and ethno-culturally sensitive manner
• Ensuring that information is presented in a way that is ethno-culturally appropriate (and/or adaptable) for the needs of a variety of ethno-cultural groups, including Aboriginal individuals, families and groups working with Aboriginal people
• Promoting an understanding of and compassion for people affected by FASD and their families, improving awareness of their need for protection and support, as well as respect for their rights...

2. Develop and Increase Capacity

To increase capacity to identify and meet the needs of children, youth, adults and families affected by FASD, as well as women who may use alcohol during pregnancy. Increasing capacity includes drawing together the resources, skills and knowledge that already exist at all levels - in families, communities, regions, governments, private industry and non-government organizations - and filling in gaps with additional training, sharing of best practices, knowledge and other resources.

Possible strategies include...

• Developing and increasing capacity for prevention, treatment and support across the sectors that work with people with FASD and their families - including health, education, justice, law enforcement, corrections, family and child welfare
• Improving evaluation, reporting and disseminating of best practices, lessons learned and experiences that will improve community capacity - these could include lessons learned in health, education, law enforcement and other sectors
• Building community capacity to meet the needs and rights of the individual affected by FASD, taking into account the broader community in which they live
• Increasing community capacity to access supports and services for women with alcohol use problems, with priority given to providing supports for pregnant women who may use alcohol during pregnancy...

3. Create Effective National Screening, Diagnostic and Data Reporting Tools and Approaches

To develop and disseminate national guidelines for screening and diagnosis of FAS and related disabilities that make up FASD. This work must go hand-in-hand with efforts to improve community capacity for screening and diagnosis of FASD. Guidelines and tools need to be appropriate for children, adolescents and adults, taking into account gender, diversity and community needs. An important aspect of this goal is the establishment of mechanisms for reporting the incidence and impacts of FASD.

Possible strategies include...

• Developing and promoting a national, standardized system for monitoring and gathering data on the incidence and prevalence of FASD, along with tools for screening that are multi-disciplinary, age- and culture-appropriate in nature
• Creating training materials and opportunities for key groups to support appropriate and correct use of screening and diagnostic tools (e.g., education, social service, child welfare, corrections, law enforcement)
• Providing widespread access to guidelines and tools by community groups and organizations, as well as by federal, provincial and territorial governments and agencies
• Improving access to diagnosis for rural and isolated remote communities...

Possible strategies include...

• Learning more about the impact of FASD on the individual and family, throughout the lifespan
• Expanding the knowledge base to inform activities in prevention, treatment, support and protection of people with FASD
• Including people affected by FASD in research aimed at identifying action and best practices (i.e., participatory research)
• Establishing mechanisms for sharing research results and best practices that promote the use of current information in community-based prevention, treatment, support and related training...

5. Increase Commitment and Support for Action on FASD

To secure commitment from the full range of stakeholders to take action to prevent FASD and to support and treat people with FASD and their families and communities. This includes coordinating their efforts and contributions to shape a strong, comprehensive system of inter-related, complementary services and supports.

"There needs to be recognition of the huge loss of human potential and stress to families and communities."

Participant from British Columbia in the FASD Consultations, 2003

Possible strategies include...

• Identifying leaders and champions in all sectors and at all levels
• Establishing mechanisms for forging and supporting partnerships among existing service and support providers and funders
• Identifying gaps in support, service and funding and developing mechanisms for attracting new partners to fill gaps
• Developing approaches for monitoring and coordinating effort, activity and funding...

E. The Path Ahead - from Framework to Action

This Framework for Action brings together the advice, experience and expertise of a diverse array of organizations and individuals. Consultations in 2003 highlighted three key issues that provide stepping stones to the future:

• There is widespread, whole-hearted commitment in all sectors and all regions of the country that now is the time to make a concerted effort to prevent FASD and to support people affected by this disability. While much excellent work has been done in various communities and in many sectors, much more can be achieved with a common vision and goals in sight.
• Community capacity, priorities and strengths vary - calling for flexible approaches that provide the supports that the community needs and that can be provided and/or tailored to take action. Each community and sector needs to develop plans for action that build on local needs, strengths and networks, while drawing on a growing national body of tools and knowledge. Similarly, communities and organizations need to share their experience, expertise and other resources, making them accessible to all.
• Planning and action at all levels, and in all sectors, need to be guided by common principles that will ensure consistent approaches while maintaining the flexibility essential to successful outcomes. The guiding principles (see sidebar) established for the Framework for Action provide a checklist that all organizations and initiatives can follow to achieve the vision and goals of this Framework.

F. Where to next? What to Expect, What to Do...

This Framework for Action is a dynamic tool - it provides a starting point for further discussion, for action and for change. The Framework draws together the essence of what has been done to date and what needs to be done in the future to affect change and achieve the vision and goals described here. The following are ideas, suggestions and options for taking action. Clearly, much work has been done in many jurisdictions - the Framework is intended to be used as a guide for those new to the issues, as well as by those already active.

On the federal government front...

Much of the activity at the federal level will continue to focus on developing and strengthening the coordinating functions that ensure access to tools, expertise and resources across the country. In addition to forming the basis for action plans at the federal level, the Framework will be used to guide interdepartmental work to address gaps and issues not currently undertaken in other sectors, including:

• Development of national guidelines for screening, and diagnosis of FASD, and the collection, analysis and reporting of incidence, prevalence and economic impact data through evidence-based research and consultations across sectors;
• Expanding scientific and social science knowledge relevant to prevention of FASD and effective support for those affected across sectors, and providing tools and expertise for evaluating interventions and developing best practices information;
• Building the evidence base and establishing mechanisms for knowledge exchange across sectors and communities - ensuring that research and evaluation results are available and accessible to inform future planning and action; and
• Increasing awareness of FASD among professionals across the array of sectors that work with people, families and communities affected by FASD. Efforts will address the needs of professionals and frontline workers in health, justice, policing, corrections, education and child and family services.

At the provincial and territorial level...

Consultations demonstrate that there is strong interest across the provinces and territories in addressing FASD. Coalitions have been formed that bring together sectors and organizations that have not traditionally worked collaboratively on FASD issues - in some provinces and territories, developments have been focused on defining the problems and challenges and on sharing information, while in others, activity has been underway for some time, resources are committed and prevention and support services are thriving.

The Framework for Action provides common ground for all provincial and territorial jurisdictions, regardless of their current activities, as they commit to future action on FASD and, in many cases, build on the extensive planning and activity already undertaken. In particular, the 2003 consultations suggest several directions to be taken at the provincial/territorial level:

• Establishing and strengthening coalitions and networks that span sectors and communities, and that bring together experience and resources;
• Reinforcing province-/territory-wide plans that work toward the vision and goals of the Framework - while taking into account the stage of readiness for action unique to each jurisdiction; and
• Enabling provincial and territorial organizations to contribute to, and draw on, the growing body of knowledge, expertise and tools to prevent FASD and support those affected by the disability.

In the community...

Work at the community level will be depend on the unique needs of each community, its level of readiness for action, and on the existing knowledge, relationships between organizations and current work on the FASD front within the community.

The Framework provides common ground for all communities across the country. While the results of consultations show that communities are at various stages of consensus, collaboration and action; there is clear and widespread commitment to the vision and goals of the Framework. Each community or local coalition needs to identify its own next steps - some of the possibilities are set out below:

• Community-wide discussions on FASD, the Framework for Action and its use in the community - this approach can widen the circle of people and organizations who understand the issues and are committed developing options. Gathering all points of view and reaching consensus can provide a strong foundation for future action. Each community needs to consider the guiding principles, the vision and goals - and how the community or network can adopt and act on them.
• Conducting a needs assessment - many communities have not gone through the important exercise of assessing needs and priorities for action. Again, by bringing to the planning table a cross-section of organizations, each with strengths, capacity and ideas, communities can take into account the views, knowledge and experienced of a range of interests and expertise - an important first step in planning effective action.
• Planning and taking action - preparing action plans designed to meet communities needs - including needs for awareness building and training - through collaboration across sectors and with other communities. Using the Framework's vision, goals and guiding principles, communities can prepare an action plans, with shorter-term goals and commitments.
• Sharing expertise, knowledge and results - as mechanisms for collecting and disseminating knowledge, results of evaluation and best practices are put in place at the national level, communities need to ensure that their experience is readily accessible by others.

G. A Closing Word

The Framework for Action on FASD represents the contributions of a great number of people and organizations committed to preventing FASD and improving the lives of those with this disability. There is widespread understanding among those who participated in consultations that FASD is a very complex issue, one that calls for a flexible, broad and inter-sectoral approach.

Understanding and addressing the context of FASD, including factors that contribute to the role of alcohol in society, the use of alcohol during pregnancy and even perceptions about the value of women and children in society is crucial. These are important issues that are fundamental to achieving a world without FASD. At the same time, tangible steps can be taken to reduce the incidence of FASD, to improve awareness among professionals and the public, and to improve the quality of life of people living with FASD, their families/caregivers and communities. The Framework for Action provides a tool for this practical work.

Keeping the discussion going, integrating new ideas, approaches and results of work will keep the Framework for Action relevant into the future. The Public Health Agency of Canada will continue to gather feedback through its current and expanding networks.

Send your feedback, views and ideas to:
FASD Team
Division of Childhood and Adolescence
Centre for Healthy Human Development
Public Health Agency of Canada
Address Locator 1909 C2
Tunney's Pasture
Ottawa, ON
K1A 0K9

DCA.public.inquiries@phac-aspc.gc.ca

A Wide Network of Interest and Expertise

Interest in and commitment to participating in a national FASD initiative have been widespread. Many sectors bring expertise and interest to efforts to prevent FASD and to support those affected by the disability. The importance of working across sectors is clear from looking at only a few examples of the contributions and interests of a number of sectors:

Child and Family Welfare - one focus of interest is on meeting the needs of women who may use alcohol during pregnancy, at the same time ensuring the safety of children...

Corrections - provide training and support to ensure the safety, appropriate care and rehabilitation of those affected by alcohol in institutional settings, and prevent the "revolving door" in and out of the prison system...

Employment - improve the prospects of finding and maintaining employment by people with FASD, and assist employers with their understanding of the issues surrounding FASD, of the special considerations needed for employees with this disability and of their worth as employees...

Education - educators can help to ensure that people with FASD participate to their full capacity in school by developing and sharing tools, adapting programs and training for educators as well as educating young people regarding the impact of alcohol use during pregnancy...

Health - health promoters bring, for example, skills in helping women and families understand the impact of alcohol use during pregnancy... medical professionals contribute to diagnosis and medical treatment... traditional healers are part of the partnership in effective health promotion...

Justice - not only is the justice system concerned with ensuring that the rights of those affected by FASD are respected, it is interested in increasing awareness of FASD among justice professionals so that justice is applied fairly in accordance with particular circumstances, that responses to wrong-doing are meaningful in light of special needs, and that community-based supports are used to help reintegrate people with FASD into the community...

Police Services - one area of interest and ongoing work is ensuring that officers are trained and knowledgeable in effectively responding to FASD-related behaviours when working with people in the community, especially in investigative settings, and making appropriate referrals when working with people with suspected FASD who come into conflict with the law or who are at risk of such conflict - either as victims or as the accused...

While not "sectors", both families/caregivers and grassroots organizations are essential partners in achieving the vision for FASD. Families/caregivers offer some of the best insights into the supports and services needed by people with FASD - at the same time, they feel the impact of FASD and themselves need supports. Grassroots organizations can be responsive to individual and family needs, can understand the culture of the community and can offer a high degree of accessibility - geographically, ethno-culturally and economically. These local organizations need support as well, including adequate funding and access to research, best practices, tools and up-to-date information.