Canada's Drug Strategy - Situational Analysis : Fetal Alcohol Syndrome/Fetal Alcohol Effects and the Effects of Other Substance Use During Pregnancy

4. Respondent Opinions

4.1 Challenges and Gaps²

The challenges and gaps that are reported are ordered according to how frequently they were mentioned by key informants. Table 5 provides the frequency and a rank order of times mentioned. A brief synopsis of these themes and recommended actions is outlined below.

4.1.1 Professional and Frontline Workers’ Knowledge

The most frequently identified gap was the lack of practitioner knowledge on FAS/FAE and its implications for practice across disciplines. Individuals also spoke of the need for training and professional development. More specifically, some professionals:

• Lack the knowledge and skills necessary to identify individuals with FAS/FAE
• Tend not to understand the full nature of FAS/FAE, including how to effectively cope with and manage behaviours
• Tend to not always work effectively with parents of children and youth who are affected with FAS/FAE; an
• Need to learn how to advocate within systems and across disciplines/systems of care

Professionals in the education, addictions, medical and justice systems were identified as needing training on this issue. The need for training for physicians to help them identify and provide advice to women with substance use problems and diagnose FAS/FAE was identified.

Specific expertise in mental health issues (e.g., depression, sexual behaviours and knowledge of services available for referral purposes) as they pertain to persons with FAS/FAE is lacking.

4.1.2 Identification Services

The lack of identification services (in particular medical diagnosis and neurodevelopmental/behavioural/psychological assessment) for adolescents and adults was mentioned often. Even where services exist, coverage and access are uneven and often do not extend to rural and remote communities.

There were calls for comprehensive diagnostic services and several informants stressed the importance of neurological/psychological assessment. This assessment is important since it helps to build a clearer picture of the capabilities of the person with FAS/FAE.

Coordinated team assessments by the appropriate combination of physicians, psychologists, occupational therapists, physiotherapists, speech therapists and mental health workers were recommended. Once a diagnosis has been made, follow up (i.e., intervention/care planning and putting services into place) was identified as the next course of action.

4.1.3 Services for Adolescents and Adults

Services for adolescents and adults with FAS/FAE and related effects are less developed in most jurisdictions. The lack of services for adolescents and adults includes:

• diagnosis/assessment
• life skills training, including financial management, vocational and employment training, and opportunities to secure employment
• addiction treatment services that take into account the nature of FAS/FAE
• transition planning services for those able to move from dependency to adult living
• recreational programs/services; an
• supportive adult living arrangements and housing

Throughout the justice system, appropriate services for persons with FAS/FAE and related effects were mentioned as a gap often. Examples of needed justice services include alternative sentencing options, court procedures, and correctional programs, as well as programs that provide supportive supervision.

If a person with FAS/FAE has an IQ over 70, the lack of services across systems is exacerbated. It is important that services be determined by a diagnosis of FAS/FAE rather than by IQ.

4.1.4 Support for Caregivers/Parents

Respondents felt that parents and other caregivers are not being involved enough in decisions concerning their child. Similarly, there is a perception by parents that their skills and knowledge are not valued.

Foster, birth and adoptive parents need training and education on parenting a child with FAS/FAE. They need support with behaviour management, identifying areas of difficulty for the child, working with systems to access services, and advocating effectively for services. As well, there is a need for more mutual support for parents, (e.g., support groups and parenting programs) and better coordination of parent support, advocacy/action groups across the country. Most parent groups still work in isolation.

Respondents identified the lack of respite services for parents/caregivers, saying that these services must address the differing needs of parents and family. Support services are also needed for overall management of FAS/FAE issues, such as ongoing crises. The need for a national parent network was also identified.

4.1.5 Community Attitudes

Several informants spoke of the guilt, fear, and shame attached to acknowledging the presence of FAS/FAE in a community. They stressed that it is difficult to act on FAS/FAE issues if the community denies that FAS/FAE is a problem.

Respondents noted that there is still a social acceptance of alcohol consumption during pregnancy. It is difficult to promote abstinence or minimal use of alcohol during pregnancy if the social norms support drinking by women who are pregnant.

Respondents noted diverse public opinion concerning the most appropriate ways to work with pregnant substance-using women and birth mothers.

Many Canadians are still unaware of FAS/FAE and its causes and consequences. The need for a national public FAS/FAE awareness campaign was highlighted.

Respondents also identified the need to remove the stereotypes associated with children with FAS/FAE and society’s perception of what constitutes a disability. These misperceptions were seen as contributing to the difficulty of putting appropriate interventions in place.

4.1.6 Identification and Treatment Services for Women

There is a lack of identification, support and appropriate treatment services for women at risk of alcohol and other drug use during pregnancy. Prenatal screening to identify high-risk levels of use during pregnancy, particularly by health professionals, is not routinely done. As well, there was a call for more effective programs to engage high-risk women and address their health, family, economic and social issues during pregnancy and after a child is born.

A lack of women-centred treatment services and aftercare programming that address women’s concerns was clearly identified. These include: care for their children while they are in treatment, fear that their children might be taken away, personal shame and guilt, and societal blame.

There is a lack of treatment models/programs to address substance use problems among individuals with FAS/FAE. Individuals with FAS/FAE are at risk for substance use problems, but often drop out of treatment programs because of their memory deficits, learning disabilities and inability to engage in cognitive or insight-based therapy.

4.1.7 Public Education Systems

A number of gaps were identified in the programs and services of public education systems across the country. Respondents in the eastern provinces reported that there is less professional development and teachers’ knowledge on FAS/FAE. Teachers need to be trained in behavioural management and to learn more effective strategies to deal with children affected by FAS/FAE. The need for a supportive educational environment, including setting realistic expectations in the classroom, was identified. Respondents also noted that education systems need to give greater attention to promoting positive values and attitudes towards children with FAS/FAE.

Education policies regarding assistance for children with FAS/FAE are lacking. Some informants requested that a specific FAS/FAE designation within special-needs education funding be allocated. It was suggested that parents’ roles be recognized in the education planning for their children from K-12. Developmental assessment tools to more accurately determine the abilities of children with FAS/FAE are also needed.

4.1.8 Financial and Human Resources

Funding is fundamental to address the need for programs, services, training, coordination of efforts and support for community initiatives. Professionals often work pro bono.

Funding should be available for short- and long-term pilot projects and ongoing programs that maintain best practice interventions. Intensive long-term support throughout childhood, adolescence and adulthood is often required for those with FAS/FAE or related effects.

4.1.9 Mobilizing Communities

Respondents spoke about the challenges of getting and keeping a diverse group of people with different agendas focused on the main goals and tasks at hand. The complex and long-term nature of the problem also makes it difficult to keep up the momentum and motivation. Understanding the capabilities and varying stages of readiness of communities to address the issue requires particular expertise on the part of those wishing to mobilize communities.

4.1.10 Mechanisms for Sharing Information and Networking

Notwithstanding the National FAS/FAE Information Service operated by the CCSA, there is a need for more mechanisms to share information across the country. There also needs to be greater opportunities for networking and generating ideas on how to collectively address pressing issues.

4.1.11 Research

There is currently little Canadian data on the incidence and the prevalence of FAS/FAE. A lack of information regarding the incidence of FAS/FAE within specific groups was also noted. The ability to track changes in rates was noted as a deficiency. Data on prevalence of children affected by other substance use is less available.

FAS/FAE-related research activities are very limited. In particular, more research was called for in relation to the effectiveness of medications for children with FAS/FAE.

There is a need for more program evaluation and mechanisms for researchers to collaborate and to share findings.

4.1.12 Integrated Service Delivery

The importance of coordinated and integrated service delivery, coordinated care planning, and case management was stressed by the respondents. Comprehensive and coordinated services are needed across the life span. The inherent systemic problems facing affected persons and their families are exacerbated for those whose IQ is over 70; as well, services available for children past the age of six are not equally available or accessible within provinces/territories or across the country.

4.1.13 Other

Other challenges and gaps were identified less often:

• There is a general lack of public awareness and knowledge on FAS/FAE, its causes and the pervasiveness of the problems associated with FAS/FAE in our communities. There were calls for greater emphasis to be placed on public education and awareness. Coordination of such campaigns could be a joint effort of the various levels of government
• FAS/FAE is a complex issue, cutting across many disciplines and requiring collaboration from many systems. It is neither easily recognized nor understood by the public and professionals alike
• The need for increased national coordination as well as a national framework was identified.
• There are numerous difficulties in providing needed services to small, remote communities spread across a large geographic area. For example, when children go to larger urban centres for services (e.g., diagnosis and assessment), their communities are seldom equipped to provide required follow-up care on their return
• While there are now more materials available to support FAS/FAE initiatives than ever, few have been translated into French

4.2 Provincial/Territorial Priorities as Identified by Key Informants³

The priorities do not necessarily represent official government policy, but reflect the individual’s perspective (i.e., parent advocate, health professional, community based person or government employee), the depth and breadth of their knowledge regarding FAS/FAE issues, and how connected they are to decision-makers within government and/or community organizations.

Priorities were placed into groupings and Table 6 illustrates the most frequently cited priorities by province or territory: professional development and training; prevention; provincial strategy and support; public/community education; identification; and intervention.

4.3 Elements of Progress and Success⁴

According to the key informants, the following are elements for success:

Leadership and Partnership

guides the development of FAS/FAE activities.

Collaboration

presents common messages, coordinated initiatives, shared expertise and learning.

Coordination

establishes a focal point for FAS/FAE work, increases momentum, reduces duplication and gaps, and increases likelihood of sustained effort.

Table 6: Provincial/Territorial Priorities as Identified by Key Informants

Community Planning

works within a common framework and with common purpose to strengthen local leadership, builds advocacy, and increases coordination.

Ongoing Public Awareness

develops broader public and political understanding of the nature of FAS/FAE-related effects and the importance of sustained commitment.

develops broader public and political understanding of the nature of FAS/FAE-related effects and the importance of sustained commitment.

contributes to increased public and professional understanding of the issues.

Professional Practice and Awareness

enhances pre-service and continuing education on the range of FAS/FAE-related issues leading to a broadened capacity for care and treatment of pregnant women.

4.4 Recommended Federal and Provincial/Territorial Roles⁵

Table 7 highlights roles identified by respondents for federal/provincial/territorial governments in relation to FAS/FAE and the effects of other substance use during pregnancy.

4.5 Summary of Key Respondent Perspectives

FAS/FAE is preventable, but the circumstances that bring a woman to use alcohol or other substances during pregnancy are complex. Addressing this issue requires a sustained commitment from all stakeholders. This includes commitment, coordinating activities, direction on policy and practice, and making resources available. At the community level, a high degree of inter-agency collaboration to ensure that complex cases receive coordinated support is required. At the program level, commitment includes programming sensitive to client need.

Key Respondents have noted that further work is needed in the following areas:

Information:

• access to information
• continuous public education campaigns
• widely available communication tools, such as videos, tele-medicine, internet, for the whole community

Adolescents and Adults:

• appropriate employment training programs and supportive living options for adolescents and adults and seniors
• leisure and recreation

Parents, Caregivers and Advocacy:

• support for parents/caregivers such as respite care, telephone helplines
• support for advocacy activities of families and caregivers
• support for a national parent network

Adoption:

• review of the adoption system in light of FAS/FAE
• provide adoptive parents with the necessary financial support and access to services

Planning and Coordination:

• consistent leadership
• coordination of activities
• a provincial coordinator in all provinces

Professional Activities:

• regional/provincial conferences across the country
• interdisciplinary professional training and development
• professional training for physicians

Service Delivery:

• early interventions
• standardized screening, diagnosis and assessment tools
• access to screening, diagnosis and assessment
• continuity of care across the lifespan
• appropriate treatment for clients in correctional facilities
• appropriate treatment for clients in the mental health system
• appropriate treatment for clients in the education system

Alcohol/Drug Treatment:

• priority access to alcohol and drug/treatment for pregnant and high-risk women
• culturally sensitive, harm reduction approach to treatment
• pre-treatment planning
• ancillary services (childcare, transportation)

Research

• prevalence and incidence studies
• development of evidence for program planning

Policy

• organizations need to address the specific needs of FAS/FAE clients in terms of policy

Progress has been made, but more is required to bring FAS/FAE-related activities to the point where programming reflects the full spectrum of need across the country and across the life stages.

2 This section is a summary of responses to question 2, “What are the challenges?” and question 4, “Where are the gaps and missing pieces?”

3 This section is based on question 3 of the key informant survey, “Have priorities been identified?”

4 This section is based on question 5 in the key informant survey, “ Where has progress been made?” and question 6, “What is working and why? How is it sustained?”

5 This section is based on question 7 in the key informant survey, “What changes would you recommend for activities in your jurisdictions and why?” and question 8, “What (if any) role should the federal government play with respect to substance use during pregnancy in general? Specifically related to FAS/FAE?”