Health Canada FAS/FAE Initiative
Information And Feedback Sessions

National Synthesis Report (June, 2000)

PDF version 66 Pages - 169 KB

Table of Contents

• Introduction
• General Findings

1. Needs/issues/gaps to address
   
   • Medical
   • Prevention & Awareness
   • Children Birth to 6
   • Children 6 to 18
   • Family
   • Adult Services
   • Aboriginal Issues
   • Women's Issues
   • Training
   • Education
   • Justice
   • Community Capacity Building
   • Policy / Coordination / Collaboration
   • Funding & Sustainability
     
2. Top priorities
3. Role of Health Canada
   
4. Who should be involved
5. Examples of successful partnerships
6. Consultation workbook questions

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Introduction

In the 1999 Budget, the Government of Canada increased funding to expand the Canada Prenatal Nutrition Program including the enhancement of current prevention efforts that address Fetal Alcohol Syndrome and Fetal Alcohol Effects (FAS/FAE). Health Canada's FAS/FAE Initiative received $11 million over three years to be used in the areas of public awareness and education, surveillance, early identification and diagnosis, FAS/FAE training and a Strategic Project Fund.

The FAS/FAE component is a joint initiative involving partnership among different branches of Health Canada including: Health Promotion and Programs Branch (HPPB), Health Protection Branch (HPB) and Medical Services Branch (MSB).

Through the Strategic Project Fund, grants will be administered for programs that focus on strengthening community capacity through prevention, early identification, and integration of services and research. Funding will be for short-term projects only and all projects funded must have national applicability. The Strategic Project Fund will be administered nationally by the Population Health Fund.

Consultations with the provinces, territories, non-governmental organizations, community groups and Aboriginal organizations have taken place across the country. These consultations provided the opportunity for participants to hear about Health Canada's FAS/FAE Initiative, to identify what initiatives are taking place already in the provinces and territories, and to increase collaboration with all groups. The individual consultation feedback summaries were combined in the attached report to form a national profile of FAS/FAE gaps and priorities across Canada. This national synthesis report will contribute to the development of a collaborative National Action Plan on FAS/FAE that builds on current activities.

Specifically, consultations were held at:

• Winnipeg, Manitoba January 26, 2000 • Halifax, Nova Scotia (Atlantic Region) February 9, 2000 • Edmonton, Alberta March 13, 2000 • Montreal, Quebec March 16, 2000 • Saskatoon, Saskatchewan March 21, 2000 • Toronto, Ontario March 24, 2000 • Vancouver, British Columbia March 28, 2000 • Whitehorse, Yukon April 25, 2000

Close to 500 people participated in these consultations, representing a cross section of all levels of government, First Nations, Metis and other Aboriginal groups, Elders, families (birth, adoptive and foster) and community organizations (both rural and urban).

The participants represented a wide variety of backgrounds including the fields of: prenatal health promotion, addictions, medicine, justice, education, childcare, health, employment, residential services, counselling and treatment, support groups, and a variety of community organizations. They gathered to hear about the national FAS/FAE Initiative and to address five specific questions as identified in the Health Canada FAS/FAE consultation workbook (see page 57).

The consultations varied from one-half day to two days during which time the participants were briefed on the FAS/FAE Initiative and time was provided for questions. This was followed by small group discussions to address the five questions in the consultation workbook. Participants divided into small groups with discussion focussing on one of the following topics: training, family, medical, prevention and awareness, children birth-6, children 6-18, Aboriginal issues, women's issues, adult services, or education. The number of group discussions varied at each consultation based on the number of participants and their areas of specific interest.

One person in each group facilitated the discussion while another was designated to record the main points. At the end of the afternoon, a representative from each group presented briefly on the main emerging issues and top priorities related to their topic of discussion followed by the possible role of Health Canada in addressing these needs and gaps. Many participants also answered the questions in the consultation workbook from the perspective of their organization, community or as an individual. A summary of these recommendations, from both group discussions and individual responses, is reflected in the attached report.

The Atlantic Region FAS Forum involved a second day of strategic planning to build on the small group consultation discussions. Additional recommendations and issues arising from the strategic planning discussions were also incorporated in this report.

Two provinces, Alberta and British Columbia, chose a slightly different format. The Alberta consultation involved representatives from the Alberta Partnership on FAS and constituted a general discussion of priorities, recommendations and suggestions for the role of Health Canada and the Federal Government. The Alberta Partnership on FAS representatives anticipated that the specific questions in the consultation workbook would be addressed more fully by their 2000-2001 strategic plan. Workbook responses were provided from a subsequent meeting of the coordinators for the Regional FAS Coordinating Committees.

The British Columbia consultation involved representatives from the Provincial FAS Consultation Group, whose members represent various government ministries, agencies, community groups and families. Their small group discussions were based on a February 2000 survey in which members ranked various areas of activity and chose their top priorities for project development. (The areas of activity were identified earlier at a March 1998 discussion on emerging issues and trends in the province.)

Participant comments and recommendations were often presented in the larger context of what the federal government or what a variety of departments could or should do to address FAS/FAE rather than strictly what Health Canada could do. Some recommendations fall under the jurisdiction of provincial, territorial or municipal governments.

Comments from participants from each of the consultations were condensed into the national synthesis report. For a complete summary of the feedback, please refer to the individual consultation reports.

The attached report is divided into six sections:

1. Needs/Issues/Gaps to address for each specific topic
2. Top Priorities in each area
3. Role of Health Canada in addressing the needs and priorities
4. Other areas that should be involved in addressing FAS/FAE (i.e. other government departments, organizations and groups)
5. Examples of successful partnerships
6. Consultation workbook questions

General Findings

The western provinces and, to a lesser extent, Yukon, have made the most progress regarding awareness, education, training and development of resources. Movement around prevention and awareness education and training has taken place in Ontario, but there are few on-the-ground resources. There was a sense of frustration expressed by some working in the field regarding the lack of political will and acceptance of the seriousness of the issue. Quebec is gaining momentum in its recognition of FAS/FAE, research needs to be done on the cultural connections to alcohol. The Atlantic Region has made recent progress and used their consultation as a platform to build on connections and start the development of a network.

Partnerships and collaboration have already taken place in the western provinces, the largest being the Prairie Northern FAS Initiative. Membership initially included Alberta, Saskatchewan and Manitoba who came together to share best practices, expertise and resource materials, and develop joint strategies to address FAS/FAE. Yukon, Northwest Territories and Nunavut joined the initiative in fall 1999. British Columbia has already developed a number of resources and established networks within the province such as the Provincial FAS Consultation Group.

Leadership & political will across departments

Participants identified a need for clear leadership on the issue of FAS/FAE and coordination and sharing of information and resources at the national level. It needs to be identified what role the provinces are currently playing, what role the federal government will play, whether the federal government can do its initiative in partnership with the provinces, territories and Aboriginal governments, and how they can work together to do the most to address FAS/FAE in Canada. The bottom line is not to reinvent the wheel in this process and to use existing networks as much as possible.

Many commented on the need to cultivate political will in all provinces and territories to provide the focus and necessary funding to effectively address FAS/FAE. Coordinators, who are accountable to move FAS/FAE issues ahead, are needed to take the lead in each province and territory. It will be essential to link these people at the community, regional and national level. It was also suggested that there be a direct service agency developed for affected individuals.

Participants noted that FAS/FAE is an issue that crosses several jurisdictions - health/medical, education, justice, social services, housing, employment-requiring inter-departmental cooperation as well as cooperation between all levels of government. Barriers between government departments must be eliminated. All disciplines will need to work together in a team-management approach. It was noted that one of the first steps should be education as there are different levels of awareness among government departments.

Sharing materials and experience

Because much of the groundwork is already laid out in the western provinces, with resulting priorities and gaps already identified, it was noted that funding is the critical missing element. While the eastern provinces are the least developed in terms of addressing the issue, and, some might argue, the greatest in need as a result, there is concern in the west that monies may be allocated to regions that have not yet established the basics such as provincial and regional networks.

Many participants commented on the fact that many of the needed resources have already been prepared in one province or region and could be used elsewhere. It was suggested that resources and energies be pooled at the national level in the same manner as the Prairie Northern FAS Initiative and that others could learn from the prairie province's experiences regarding what approaches did and did not work.

Communications and information strategies

There was also concern from the west regarding competing messages, e.g. if the Prairie Northern Initiative's already completed communications strategy were to be overlapped by a pending national campaign. Even with a similar message, there would need to be a consistent style and content to avoid confusing the public. It was suggested that the prairie message be tested for possible use as a national campaign.

Many participants noted there are already mixed messages in society regarding the question of a safe amount of alcohol use during pregnancy. They suggested a broad-based national campaign targeted at all members of society with a positive and clear consistent message regarding no alcohol in pregnancy and if planning a pregnancy. It was recommended that social marketers be used to develop a universal slogan as effective as the ‘Don't Drink and Drive' campaign. Furthermore, youth should be involved in preparing a message for that population. It was also noted that plain language materials and resources are needed that are sensitive to both language and culture. Many commented on the need to develop a national directory of services and a central registry to track information and research.

Canadian research & statistics

There was also a call for Canadian research in a number of areas including best practices across all disciplines. Suggestions included evidence-based research on incidence, effective intervention, messaging, survey of the priority population, management and treatment of offenders affected by FAS/FAE, and effective strategies for optimum functioning of affected adults in society among others.

It was noted that the research needs to be coordinated and consistent to be effective, e.g. if each jurisdiction conducts different sets of prevalence studies in different populations, it would not help to form a national picture.

One of the difficulties in building a case addressing FAS/FAE is the lack of statistics on prevalence. However, it was suggested that governments do not want to know the full extent of the problem for fear that the resulting demand for services and resources would be overwhelming.

Diagnosis & demand for services

Across the country, but particularly in the west where more awareness education has taken place, there is a strong concern that increased awareness is leading to a tremendous increase in demand for diagnosis/assessment that far outpaces the parallel development of the necessary supports and services.

Lack of diagnosis or diagnosticians was voiced across the country as well as the need for a consistent standard assessment process for diagnosis. Long waiting lists, for those areas with diagnostic clinics, were also cited. Many commented on the paradox that the need for early identification and intervention for the most hopeful outcomes for affected children is recognized and accepted, yet families and individuals are not able to access diagnosis or must wait months or years while the critical early years pass by.

It was suggested that there be a single point of entry for FAS/FAE with each health authority that provides access to a complete range of services. Participants noted frustration with fragmented services and the need for a holistic approach and individualized care plans.

Many commented on the need to clarify and use consistent terminology, i.e. FAS, FAE, partial FAS, ARBD, ARND. With even doctors using different terms, it is confusing for professionals and especially for families. It was also suggested that while there are concerns about a lack of diagnosis, informal diagnoses and misdiagnoses, there was also the concern of indiscriminate over-labelling.

Youth and adults affected by FAS/FAE often remain undiagnosed or misdiagnosed, many times because they have been adopted or in foster care and the maternal history is inaccessible or unavailable. Many participants, particularly parents, commented on the need to screen all children who come under care and to open the information files to prospective adoptive or foster parents.

It was also noted that in our prevention efforts, we might have presented the picture of those living with FAS/FAE as hopeless. This affects willingness to seek a diagnosis as well as the willingness to foster or adopt an affected child or attempt different teaching or parenting approaches among other things.

Addictions, treatment & root causes

Another barrier to diagnosis identified by participants is the shame, guilt and denial of birth mothers and families that often follows disclosure of drinking during pregnancy. To deal with this, families require sensitive support before, during and after diagnosis. There is also a need to remove the obstacles that keep addicted women from accessing treatment, e.g. a woman should not have to choose between going into an addictions program or being with her children. Family-centred treatment combined with transitional support upon return to the community, and peer support or mentoring programs are needed to stop the cycle of women losing their babies and then replacing them.

Across the country it was noted, however, that FAS/FAE is not just a mother who drinks. Governments and communities need to acknowledge how racism, poverty, sexual abuse and family violence are linked to addictions. We need to recognize that FAS/FAE is more than a women's issue or an Aboriginal issue - it is a societal issue.

We are now seeing intergenerational FAS/FAE in which affected parents are having affected children. In some northern communities, the problem can go back three generations. Parents with FAS/FAE are trying to parent and, in some cases, parenting children affected by FAS/FAE.

Family services & respite supports

The need for support services and qualified/quality respite for all families (birth, adoptive, foster) was identified. Without adequate supports, the multiple roles of parent, advocate and supporter of others can cause families to collapse under the strain. It was also noted that parents are not considered ‘professional' yet they are the experts on their children since their commitment is 24 hours a day, 7 days a week. Parents asked for recognition and validation of their role and to be included in decision-making involving their children. Training in parenting skills and effective approaches are needed, as participants noted that mainstream parenting methods do not work with affected children.

Training across disciplines & professional development

Because FAS/FAE crosses many disciplines, there is a need for training in best practices, including trainthe- trainer, across the board for teachers, teaching assistants, correctional officers, judges, lawyers, caregivers, families, respite workers, addictions workers, child care workers, etc. It was also suggested that professionals undergo sensitivity training to understand and develop non-judgmental approaches.

It was suggested in almost every consultation that FAS/FAE training should be included in the core curriculum of applicable faculties at the postsecondary level, e.g. Law, Social Work, Education, Nursing, Medicine, etc. It was suggested that ongoing accredited professional development should continue once practicing in their field and that it be a mandatory requirement of the respective professional associations.

Teaching strategies, classrooms & Ritalin

Specific school needs cited included the need for practical ready-to-use information for the classroom for all teachers, increased funding for teacher's assistants, classrooms geared to the special needs and abilities of children affected by FAS/FAE and effective strategies for teachers on how to teach affected children. It was suggested that we might need a separate education system with a different environment and different approach, as described by Susan Doctor. It was also suggested that FAS/FAE education should be part of the core curriculum in health and family life/family living programs in schools.

There was great concern across all communities regarding the use, misuse and overuse of the drug Ritalin as a method to control behaviours, particularly for classroom control. Alternative approaches and treatments need to be identified.

It was noted that society does not seem to place a high priority on addressing FAS/FAE and many, including professionals working with affected individuals, do not recognize it as a disability. It is particularly difficult with FAE as it is a hidden disorder. Affected children and adolescents with ‘normal' IQ levels are not provided with the needed services as a result, in spite of the behavioural issues. Instead, they are labelled as ‘bad' kids.

Adolescents & young adults

Even in some regions where there are services and programs for young children, it was noted that there is little to offer adolescents or adults and there is a vacuum of materials for working with adults, as if an affected person outgrows FAS/FAE. There is a need to recognize FAS/FAE as a lifelong disability requiring a continuum of services that adapts to the changing needs as the person ages. For example, school transitions, employment, assisted housing and assisted living.

Perhaps the biggest challenges with adolescents and young adults is keeping them in school, finding employment, keeping families together, keeping them out of jail and finding support living accommodations. It was noted there is a conflict between what adolescents are taught in school, i.e. to become independent individuals contributing to society, vs. the reality that many of them may never be able to live independently. Nonetheless, it was acknowledged that children and young adults affected by FAS/FAE could function with strong supports.

It was noted that adolescents and young adults who are being expected to live independently without supports often end up in correctional facilities where they are supervised 24 hours a day. However, safe placement for individuals affected by FAS/FAE is not the purpose of custody or jails. It was also acknowledged that affected adults cannot necessarily be forced to accept the services they need.

Justice & corrections

Considering the large numbers of incarcerated individuals either diagnosed or suspected to be FAS/FAE, participants noted we might need to rethink the legal system and look at other ways of protecting society and the offenders themselves. It was suggested that every offender, juvenile or adult, be screened for FAS/FAE and that this should be taken into account when sentencing. Alternative justice methods need to be considered, i.e. life skills/community service vs. incarceration. We need to set up the means for affected individuals in the justice system to return to their communities with the proper support system in place to avoid repeat offences.

It was also noted that FAS behaviours require different treatment and programs in correctional facilities and that the Aboriginal community requires the resources to design programs appropriate to their needs. One participant noted the irony that the bright lights and noise of penal institutions are exactly the wrong kind of environment for the sensitive eyes and ears of an affected individual.

Rural, remote and northern issues

Rural, remote and northern areas face specific issues, e.g. difficulty in forming partnerships, accessing or providing services, the expense of travel to see urban clinics and specialists, privacy and confidentiality issues in small communities, isolation, etc. Some communities, particularly in northern areas of the provinces and the Northwest Territories and Nunavut, have fly-in access only.

There was strong direction from Yukon that the territories should be aligned as a northern partnership rather than the current Health Canada linkages, i.e. Yukon in the British Columbia region, Northwest Territories in the Alberta region and Nunavut in the Ontario region. It was pointed out that Yukon, for example, looks to programs in Alaska rather than southern British Columbia for models to follow. It was also noted that northern areas often feel ignored for feedback or participation in provincial/federal consultations.

Recognizing cultural differences & First Nations models

Many participants commented on the need to recognize cultural differences and to incorporate traditional First Nations values, including both language and cultural sensitivity. Aboriginal people should be trained to work with Aboriginal people and any non-Aboriginal service providers should receive training for cultural competency. Treatment should be based on a First Nations model, rather than the medical model, that supports traditional family based approaches to prevention and intervention. It was also noted that Elders have a vital role to play in addressing FAS/FAE within Aboriginal communities.

Participants suggested that more Aboriginal input is needed, rather than a few voices at a consultation or one Aboriginal person on a large committee. There was also a call to break down the jurisdictional barriers between the provinces and the federal governments for on and off reserve support services. There was concern that many professionals automatically ‘write off' Aboriginal children as FAS/FAE.

Community capacity building

Participants commented on the need to recognize and fund community-based programs, and to identify a ‘point-person' in the community committed to FAS/FAE initiatives. It was noted that professionals in many organizations already have too many competing priorities, wear too many hats and are generally overworked. There is also a need for trained members of the community to remain in the community as advocates and educators. It was again noted that community programs are often undercut as soon as they start, or are under-funded and cannot function effectively. Participants expressed the need for long term funding with built-in flexibility and an end to project based funding.

Federal commitment to FAS & project based funding

There were many questions across the country regarding the federal government's commitment to address FAS/FAE. The $11 million over 3 years was deemed as grossly insufficient, particularly since it would be split between different branches within Health Canada and then spread across the country. The cap of $150,000 over 3 years on projects funded by the Strategic Project Fund was also criticized as grossly inadequate. The comment was made that funding dollars need to be substantial enough for future commitments so that people are willing to “jump on the wagon for the long ride.”

Across the country, there is great concern about project based funding (e.g. Strategic Project Fund) as there are already many worthwhile projects that are in jeopardy due to lack of sustainable funding. Too often, community groups spend the majority of their project time searching for partner funding or sustainable funding rather than concentrating on the purpose of their project. Many effective programs die due to project based rather than sustainable funding.

New approaches to raise and distribute funds

In almost every consultation, it was suggested that a tax be levied on alcohol or that a portion of revenue be collected from the sale of alcohol. These funds would provide sustained funding for programs and services for individuals affected by FAS/FAE. Another suggestion was the creation of a foundation to raise and distribute money for programs and resources.

Participants noted that it is much harder to find funding for intervention in the lives of those already living with FAS/FAE, as opposed to prevention and awareness efforts. The suggestion was made that there be some kind of ratio of funding towards prevention and towards supporting families and individuals already living with FAS/FAE.

There was also the suggestion that it would be more effective to apply the entire Strategic Project Fund against one specific area, e.g. training, prevention and awareness, research, diagnosis, or any other area, rather than divvying the money into small time-limited projects, which often ends up pleasing no one.

Fear of raising false expectations

Finally, there was a concern that the consultations would raise false expectations for participants. Because there are so many needs for services, resources and programs for affected individuals, many participants were concerned that communities would think they would get these services as a result. Participants expressed frustration with too much talk and not enough action on the ground.