FASEout Project 2006: Fetal Alcohol Spectrum Disorder: Best Practices

FASEout Project 2006: People affected by FASD are found within health, education, justice and social service sectors and receive inconsistent messages and often inadequate support People affected by FASD are found within health, education, justice and social service sectors and receive inconsistent messages and often inadequate support There is a clear need for a collaborative approach to implementing current Best Practices There is a clear need for a collaborative approach to implementing current Best Practices

FASEout Project 2006: What are Best Practices? Meeting the needs of people who may be affected by FASD and ensuring that prevention of FASD is a component of everyday service delivery Meeting the needs of people who may be affected by FASD and ensuring that prevention of FASD is a component of everyday service delivery Statements based on scientific evidence and/or on the perspectives of consumers, expert practitioners and educators - Health Canada (2001) Statements based on scientific evidence and/or on the perspectives of consumers, expert practitioners and educators - Health Canada (2001)

FASEout Project 2006: Best Practices (cont’d) In 2000, the Canadian Centre on Substance Abuse undertook a Situational Analysis Project on FAS/FAE for Health Canada In 2000, the Canadian Centre on Substance Abuse undertook a Situational Analysis Project on FAS/FAE for Health Canada Literature reviews, research and national program interviews were conducted and Best Practices for FAS/FAE and the Effects of Other Substance Use During Pregnancy (Health Canada, 2001) was created Literature reviews, research and national program interviews were conducted and Best Practices for FAS/FAE and the Effects of Other Substance Use During Pregnancy (Health Canada, 2001) was created

FASEout Project 2006: Best Practice Statements Best Practice statements were developed for: Best Practice statements were developed for: Prevention Prevention Identification Identification Intervention Intervention

FASEout Project 2006: Prevention Prevention activities address issues up to the birth of the child Prevention activities address issues up to the birth of the child are intended to promote health and prevent alcohol/drug use during pregnancy are intended to promote health and prevent alcohol/drug use during pregnancy prevent conception while substances are used prevent conception while substances are used reduce harm arising from substance use during pregnancy reduce harm arising from substance use during pregnancy

FASEout Project 2006: Primary Prevention Activities undertaken with a healthy population in order to maintain or enhance physical and/or emotional health

FASEout Project 2006: Secondary Prevention Activities aimed to address a problem before it becomes severe or persistent

FASEout Project 2006: Tertiary Prevention Activities for individuals in whom the condition has already developed

FASEout Project 2006: Identification Activities that involve screening, referral and diagnosis of newborns, adolescents or adults affected by prenatal substance use Activities that involve screening, referral and diagnosis of newborns, adolescents or adults affected by prenatal substance use

FASEout Project 2006: Diagnosis Diagnosis is done by medical specialists in conjunction with a multi-disciplinary team including a pediatrician or medical doctor, psychologist, social worker, physiotherapist, occupational therapist and speech therapist Diagnosis is done by medical specialists in conjunction with a multi-disciplinary team including a pediatrician or medical doctor, psychologist, social worker, physiotherapist, occupational therapist and speech therapist

FASEout Project 2006: Intervention Activities intended to prevent or reduce the harm associated with the primary and secondary disabilities Activities intended to prevent or reduce the harm associated with the primary and secondary disabilities Intervention activities are specific to infancy, childhood, adolescence and adulthood Intervention activities are specific to infancy, childhood, adolescence and adulthood

FASEout Project 2006: Best Practice Statements Primary Prevention Limit the availability of alcohol Limit the availability of alcohol Use warning labels and posters Use warning labels and posters Develop school wide substance use prevention programs as a means of preventing or delaying substance use among youth Develop school wide substance use prevention programs as a means of preventing or delaying substance use among youth

FASEout Project 2006: Best Practice Activities Primary Prevention Public awareness campaigns Public awareness campaigns Warning signs and labels Warning signs and labels Information dissemination Information dissemination Public education workshops Public education workshops Community-based projects Community-based projects

FASEout Project 2006: Best Practice Statements Secondary Prevention Routine screening of all pregnant women for use of alcohol in various settings, including justice, housing and health Routine screening of all pregnant women for use of alcohol in various settings, including justice, housing and health Training on FASD for physicians and health professionals working with women who have substance use problems Training on FASD for physicians and health professionals working with women who have substance use problems Use cognitive-behavioural intervention methods with women with early-stage alcohol problems Use cognitive-behavioural intervention methods with women with early-stage alcohol problems

FASEout Project 2006: Best Practice Statements Tertiary Prevention Combine prenatal care with substance abuse programming Combine prenatal care with substance abuse programming Promote gender specific substance abuse treatment programs Promote gender specific substance abuse treatment programs Advocate for services with a single point of access addressing social and health needs of pregnant women with substance use problems Advocate for services with a single point of access addressing social and health needs of pregnant women with substance use problems

FASEout Project 2006: Best Practice Statements Tertiary Prevention (cont’d) Intensive case management of service Intensive case management of service Openness to intermediary harm reduction goals Openness to intermediary harm reduction goals No evidence to support the use of punitive measures, such as mandated treatment No evidence to support the use of punitive measures, such as mandated treatment

FASEout Project 2006: Best Practice Activities Secondary and Tertiary Prevention Programming specific to women who are pregnant and using substances Programming specific to women who are pregnant and using substances Routine screening to identify women who are at risk of having a baby born with FASD Routine screening to identify women who are at risk of having a baby born with FASD Women centred substance abuse treatment programs for women who are pregnant Women centred substance abuse treatment programs for women who are pregnant “One stop” programming “One stop” programming Home visitation case management Home visitation case management

FASEout Project 2006: Best Practice Statements Identification Diagnostic services enhanced through specialized training, telemedicine and traveling clinics Diagnostic services enhanced through specialized training, telemedicine and traveling clinics Routine screening of maternal alcohol use during prenatal care Routine screening of maternal alcohol use during prenatal care Supportive atmosphere when discussing substance abuse problems with pregnant women Supportive atmosphere when discussing substance abuse problems with pregnant women

FASEout Project 2006: Best Practice Activities Identification Accessible multidisciplinary diagnostic services Accessible multidisciplinary diagnostic services Standardized clinical guidelines Standardized clinical guidelines FASD - specific clinics FASD - specific clinics Psychosocial assessment services Psychosocial assessment services Physician training specific to FASD Physician training specific to FASD

FASEout Project 2006: Best Practice Statements Intervention - Infancy Use of a multidisciplinary team to address the range of complex needs for infants affected by FASD Use of a multidisciplinary team to address the range of complex needs for infants affected by FASD Long-term, stable living environments where caregivers have FASD specific information, training and support Long-term, stable living environments where caregivers have FASD specific information, training and support Low staff-child ratio programming Low staff-child ratio programming Access to early educational interventions Access to early educational interventions

FASEout Project 2006: Best Practice Activities Intervention - Infancy Infant development programs designed specifically for infants with FASD (low staff-child ratio, low sensory activities, etc.) Infant development programs designed specifically for infants with FASD (low staff-child ratio, low sensory activities, etc.) Support for caregivers of infants with FASD Support for caregivers of infants with FASD Home visitation case management Home visitation case management

FASEout Project 2006: Best Practice Statements Intervention - Childhood Caregivers of children with FASD benefit from ongoing support and advocacy for medical, educational and psychological issues Caregivers of children with FASD benefit from ongoing support and advocacy for medical, educational and psychological issues Children with FASD benefit from an Individualized Education Plan (IEP) involving a range of collaborating professionals Children with FASD benefit from an Individualized Education Plan (IEP) involving a range of collaborating professionals

FASEout Project 2006: Best Practice Statements Intervention - Childhood (cont’d) Learning environments should be adjusted for children affected by FASD - calm, quiet, routine, structure, etc. Learning environments should be adjusted for children affected by FASD - calm, quiet, routine, structure, etc. Individualized curriculums should include a focus on functional skills for independent living (problem solving, social interacting, etc.), behaviour management strategies and developing realistic expectations of the child Individualized curriculums should include a focus on functional skills for independent living (problem solving, social interacting, etc.), behaviour management strategies and developing realistic expectations of the child

FASEout Project 2006: Best Practice Activities Intervention - Childhood FASD specific school programs - adjusted curriculum and classroom requirements FASD specific school programs - adjusted curriculum and classroom requirements Life-skills programs to include information on the consequences of drinking during pregnancy Life-skills programs to include information on the consequences of drinking during pregnancy Multidisciplinary case management teams for ongoing support Multidisciplinary case management teams for ongoing support

FASEout Project 2006: Best Practice Statements Intervention - Adolescence Adolescents benefit from basic socialization and communication skills, tailored vocational counselling and employment supervision Adolescents benefit from basic socialization and communication skills, tailored vocational counselling and employment supervision Tailored programming for substance abuse treatment, mental health services and within the correction system Tailored programming for substance abuse treatment, mental health services and within the correction system

FASEout Project 2006: Best Practice Activities Intervention - Adolescence Programming specific for youth affected by FASD (job readiness, alternative sentencing, supported employment, alternative training) Programming specific for youth affected by FASD (job readiness, alternative sentencing, supported employment, alternative training) Supportive housing for youth affected by FASD (group homes) Supportive housing for youth affected by FASD (group homes) Substance abuse treatment programs designed for youth affected by FASD Substance abuse treatment programs designed for youth affected by FASD

FASEout Project 2006: Best Practice Statements Intervention - Adulthood Consistent case management and advocacy for adults (and their children) Consistent case management and advocacy for adults (and their children) Substance abuse programs, employment training, mental health and correctional services tailored for adults affected by FASD Substance abuse programs, employment training, mental health and correctional services tailored for adults affected by FASD

FASEout Project 2006: Best Practice Activities Intervention - Adulthood Supportive living environments (external brain managers) Supportive living environments (external brain managers) Tailored employment programs Tailored employment programs Programs within the correctional system directed for adults affected by FASD Programs within the correctional system directed for adults affected by FASD Support for family members supporting an adult affected by FASD Support for family members supporting an adult affected by FASD

FASEout Project 2006: Implementation Guide: What is it? a guide based on principles from Health Canada’s Best Practices and Situational Analysis for FAS/FAE and the Effects of Other Substance Use During Pregnancy (2001) a guide based on principles from Health Canada’s Best Practices and Situational Analysis for FAS/FAE and the Effects of Other Substance Use During Pregnancy (2001) a step by step framework for policy and practice modification a step by step framework for policy and practice modification a modified lens for looking at FASD a modified lens for looking at FASD

FASEout Project 2006: Values Guiding our Work Hope……. Hope……. Respect……. Respect……. Understanding…….. Understanding…….. Compassion……… Compassion……… Cooperation………. Cooperation………. (Adapted from the Saskatchewan FAS Coordinating Committee Guiding Principles 2001)

FASEout Project 2006: Hope Recognize that at whatever point a woman can stop or reduce her drinking in pregnancy, there is hope for her to have a healthier child Recognize that at whatever point a woman can stop or reduce her drinking in pregnancy, there is hope for her to have a healthier child Acknowledge that no matter what, supportive intervention is effective Acknowledge that no matter what, supportive intervention is effective

FASEout Project 2006: Respect The abilities of individuals affected by FASD The abilities of individuals affected by FASD The knowledge of those who parent individuals affected by FASD The knowledge of those who parent individuals affected by FASD The rights and capabilities of women and their partners to make obvious choices about their health and that of their children The rights and capabilities of women and their partners to make obvious choices about their health and that of their children

FASEout Project 2006: Understanding Stay open to new information and be aware and reflective of your own attitudes and values Stay open to new information and be aware and reflective of your own attitudes and values Inform yourselves about the issues and on-going research Inform yourselves about the issues and on-going research Avoid sensationalizing FASD Avoid sensationalizing FASD Be sensitive to the impact of a diagnosis on Be sensitive to the impact of a diagnosis on an individual, their family and community an individual, their family and community

FASEout Project 2006: Compassion Be sensitive to the needs of individuals affected by FASD Be sensitive to the needs of individuals affected by FASD Be open to learning people’s strengths and challenges Be open to learning people’s strengths and challenges Be sensitive to the situation of women using alcohol Be sensitive to the situation of women using alcohol Be open to the individual process of recovery Be open to the individual process of recovery

FASEout Project 2006: Cooperation Recognize the importance of building partnerships within communities in addressing all aspects of FASD Recognize the importance of building partnerships within communities in addressing all aspects of FASD

FASEout Project 2006: Goals Prevent FASD Prevent FASD Assist in development of appropriate policy and practice in relation to FASD Best Practices Assist in development of appropriate policy and practice in relation to FASD Best Practices Increase community capacity to provide care and support to those who are affected by FASD Increase community capacity to provide care and support to those who are affected by FASD

FASEout Project 2006: Objectives Reduce incidence of FASD through increased awareness and knowledge Reduce incidence of FASD through increased awareness and knowledge Train all staff regarding FASD and its impacts on children and adults Train all staff regarding FASD and its impacts on children and adults Increase public education activities in FASD prevention and intervention Increase public education activities in FASD prevention and intervention

FASEout Project 2006: Objectives (cont’d) Increase coordination between disciplines to ensure proper diagnosis and referral for services Increase coordination between disciplines to ensure proper diagnosis and referral for services Support individuals and families affected by FASD Support individuals and families affected by FASD Develop a committee dedicated to reviewing policy and practice in relation to Best Practices Develop a committee dedicated to reviewing policy and practice in relation to Best Practices

FASEout Project 2006: Methodology Watch Get help Do

FASEout Project 2006: Watch - see the world differently Become educated about FASD Become educated about FASD Examine challenges to policy and practice implementation and find strengths within the organization and community Examine challenges to policy and practice implementation and find strengths within the organization and community Make the paradigm shift required to view services through the FASD lens Make the paradigm shift required to view services through the FASD lens

FASEout Project 2006: Education - Ask Yourselves... Can you attend FASD conferences? Can you attend FASD conferences? Can you train all staff about FASD? Can you train all staff about FASD? Can you collect and review FASD resources? Can you collect and review FASD resources? Can you discuss Best Practices with families affected by FASD? Can you discuss Best Practices with families affected by FASD? Can you educate community members regarding FASD? Can you educate community members regarding FASD?

FASEout Project 2006: Challenges and Strengths Is Federal or Provincial legislation limiting FASD work? Is Federal or Provincial legislation limiting FASD work? Are costs prohibiting access to services in your community? Are costs prohibiting access to services in your community? Are consistent messages about alcohol and pregnancy visible in your community? Are consistent messages about alcohol and pregnancy visible in your community? Are FASD diagnostic services obtainable? Are FASD diagnostic services obtainable?

FASEout Project 2006: Challenges and Strengths (cont’d) Are there already knowledgeable staff regarding FASD in your organization? Are there already knowledgeable staff regarding FASD in your organization? Are there existing community partnerships? Are there existing community partnerships? Do you have flexible programming? Do you have flexible programming? Are there strong and committed family members and support people for individuals affected by FASD? Are there strong and committed family members and support people for individuals affected by FASD?

FASEout Project 2006: Paradigm Shift Need to change expectations that all behaviour can be changed Need to change expectations that all behaviour can be changed FASD needs to be seen as an invisible disability FASD needs to be seen as an invisible disability Dependence is a factor of FASD Dependence is a factor of FASD People with FASD need things to be repeated many times and to be reminded often People with FASD need things to be repeated many times and to be reminded often

FASEout Project 2006: Paradigm Shift (cont’d) Individuals with FASD need to be informed of their disability Individuals with FASD need to be informed of their disability Support people need to stay involved Support people need to stay involved Early diagnosis is key to accessing appropriate services Early diagnosis is key to accessing appropriate services Structure, supervision and simplicity are key Structure, supervision and simplicity are key Models of alternative justice should be used Models of alternative justice should be used

FASEout Project 2006: Get Help - to take on the task Form Partnerships

FASEout Project 2006: Partnerships Can you join or create a multidisciplinary FASD committee? Can you join or create a multidisciplinary FASD committee? Can you locate and refer to professionals who have an understanding of FASD in health, education, social work, mental health, addictions, justice, employment and housing? Can you locate and refer to professionals who have an understanding of FASD in health, education, social work, mental health, addictions, justice, employment and housing?

FASEout Project 2006: Partnerships (cont’d) Can you locate positive role models for FASD in your community? Can you locate positive role models for FASD in your community? Can you seek information from FASD experts? Can you seek information from FASD experts?

FASEout Project 2006: Do - the work needed Review existing policies and practices and modify them with regards to FASD Review existing policies and practices and modify them with regards to FASD Remain consistent with Best Practices Remain consistent with Best Practices

FASEout Project 2006: Modifying Policies and Practice Can you develop an on-going Best Practice committee within your organization? Can you develop an on-going Best Practice committee within your organization? Can you review FASD literature and resources? Can you review FASD literature and resources? Can you review existing policies through the FASD lens? Can you review existing policies through the FASD lens? Can you hold on-going training sessions on FASD for all staff? Can you hold on-going training sessions on FASD for all staff?

FASEout Project 2006: Modifying Policies and Practice (cont’d) Can you modify policies and practice? Can you modify policies and practice? Can you incorporate FASD awareness into training for all activities? Can you incorporate FASD awareness into training for all activities? Can you disseminate information to partners in the area? Can you disseminate information to partners in the area? Can you act as a mentor to other organizations? Can you act as a mentor to other organizations?

FASEout Project 2006: Best Practices As organizations move through each statement they can ask themselves which stage they are at (watch, get help, do) and where their target stage will be As organizations move through each statement they can ask themselves which stage they are at (watch, get help, do) and where their target stage will be Not all organizations will be able to reach the “Do” stage for each Best Practice statement, but knowing where to refer or get information is key Not all organizations will be able to reach the “Do” stage for each Best Practice statement, but knowing where to refer or get information is key

FASEout Project 2006: Action Plan Once organizations understand where they are currently and what their goals are for the future, Action Plans can be developed to reflect the steps needed to achieve Best Practice Once organizations understand where they are currently and what their goals are for the future, Action Plans can be developed to reflect the steps needed to achieve Best Practice Short term and long term goals should be established and reviewed on an on-going basis Short term and long term goals should be established and reviewed on an on-going basis

FASEout Project 2006: Action Plan (cont’d) Action Plans change and develop as new information is obtained and new programs are developed Action Plans change and develop as new information is obtained and new programs are developed An FASD Best Practice Committee within the organization and community is key to ensuring that the issues are not ‘lost’ An FASD Best Practice Committee within the organization and community is key to ensuring that the issues are not ‘lost’

FASEout Project 2006: References Best Practices for FAS/FAE and the Effects of Other Substance Use During Pregnancy (Health Canada, 2001) Best Practices for FAS/FAE and the Effects of Other Substance Use During Pregnancy (Health Canada, 2001) 2000, the Canadian Centre on Substance Abuse undertook a Situational Analysis Project on FAS/FAE 2000, the Canadian Centre on Substance Abuse undertook a Situational Analysis Project on FAS/FAE Best Practices: Treatment and Rehabilitation for Women with Substance Use Problems (Health Canada, 2001) Best Practices: Treatment and Rehabilitation for Women with Substance Use Problems (Health Canada, 2001) Preventing Substance Use Problems Among Young People: A Compendium of Best Practices (Health Canada 2001) Preventing Substance Use Problems Among Young People: A Compendium of Best Practices (Health Canada 2001) Enhancing Fetal Alcohol Syndrome (FAS)-related Intervention at the Prenatal and Early Childhood Stages in Canada (Canadian Centre on Substance Abuse, 2001) Enhancing Fetal Alcohol Syndrome (FAS)-related Intervention at the Prenatal and Early Childhood Stages in Canada (Canadian Centre on Substance Abuse, 2001)