faseout project 2006: fetal alcohol spectrum disorder: best practices

FASEout Project 2006: www.faseFASEout Project 2006: www.faseout.caout.ca

Fetal Alcohol Spectrum Fetal Alcohol Spectrum Disorder: Best Practices Disorder: Best Practices


People affected by FASD are People affected by FASD are found within health, education, found within health, education, justice and social service justice and social service sectors and receive sectors and receive inconsistent messages and inconsistent messages and often inadequate supportoften inadequate support

There is a clear need for a There is a clear need for a collaborative approach to collaborative approach to implementing current Best implementing current Best PracticesPractices


What are Best Practices?What are Best Practices? Meeting the needs of people who may Meeting the needs of people who may

be affected by FASD and ensuring that be affected by FASD and ensuring that preventionprevention of FASD is a component of of FASD is a component of everyday service deliveryeveryday service delivery

Statements based on scientific evidence Statements based on scientific evidence and/or on the perspectives of and/or on the perspectives of consumers, expert practitioners and consumers, expert practitioners and educators - Health Canada (2001)educators - Health Canada (2001)


Best Practices Best Practices (cont’d)(cont’d)

In 2000, the Canadian Centre on Substance In 2000, the Canadian Centre on Substance Abuse undertook a Situational Analysis Abuse undertook a Situational Analysis Project on FAS/FAE for Health CanadaProject on FAS/FAE for Health Canada

Literature reviews, research and national Literature reviews, research and national program interviews were conducted and program interviews were conducted and Best Practices for FAS/FAE and the Effects Best Practices for FAS/FAE and the Effects of Other Substance Use During Pregnancy of Other Substance Use During Pregnancy (Health Canada, 2001) was created(Health Canada, 2001) was created


Best Practice StatementsBest Practice Statements

Best Practice statements were Best Practice statements were developed for:developed for: PreventionPrevention IdentificationIdentification InterventionIntervention


PreventionPrevention

Prevention activities address issues up to Prevention activities address issues up to the birth of the childthe birth of the child

are intended to promote health and are intended to promote health and prevent alcohol/drug use during prevent alcohol/drug use during pregnancypregnancy

prevent conception while substances are prevent conception while substances are usedused

reduce harm arising from substance use reduce harm arising from substance use during pregnancyduring pregnancy


Primary PreventionPrimary Prevention

Activities undertaken with aActivities undertaken with a

healthy population in order tohealthy population in order to

maintain or enhance physicalmaintain or enhance physical

and/or emotional healthand/or emotional health


Secondary PreventionSecondary Prevention

Activities aimed to address Activities aimed to address a problem before it a problem before it

becomes becomes severe or persistentsevere or persistent


Tertiary PreventionTertiary Prevention

Activities for individuals inActivities for individuals in

whom the condition haswhom the condition has

already developedalready developed


IdentificationIdentification

Activities that involve Activities that involve screening, referral and screening, referral and diagnosisdiagnosis of newborns, of newborns, adolescents or adults adolescents or adults affected by prenatal affected by prenatal substance usesubstance use


DiagnosisDiagnosis

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


InterventionIntervention

Activities intended to prevent or Activities intended to prevent or reduce reduce the harm associated with the primary the harm associated with the primary and secondary disabilitiesand secondary disabilities

Intervention activities are specific to Intervention activities are specific to infancy, childhood, adolescence and infancy, childhood, adolescence and adulthoodadulthood


Best Practice StatementsBest Practice StatementsPrimary PreventionPrimary Prevention

Limit the availability of alcoholLimit the availability of alcohol

Use warning labels and postersUse warning labels and posters

Develop school wide substance use Develop school wide substance use prevention programs as a means of prevention programs as a means of preventing or delaying substance use preventing or delaying substance use

among youthamong youth


Best Practice ActivitiesBest Practice ActivitiesPrimary PreventionPrimary Prevention

Public awareness campaignsPublic awareness campaigns Warning signs and labelsWarning signs and labels Information disseminationInformation dissemination Public education workshopsPublic education workshops Community-based projectsCommunity-based projects


Best Practice StatementsBest Practice StatementsSecondary PreventionSecondary Prevention

Routine screening of all pregnant women for Routine screening of all pregnant women for use of alcohol in various settings, including use of alcohol in various settings, including justice, housing and healthjustice, housing and health

Training on FASD for physicians and health Training on FASD for physicians and health professionals working with women who have professionals working with women who have substance use problemssubstance use problems

Use cognitive-behavioural intervention Use cognitive-behavioural intervention methods with women with early-stage alcohol methods with women with early-stage alcohol problemsproblems


Best Practice StatementsBest Practice StatementsTertiary PreventionTertiary Prevention

Combine prenatal care with Combine prenatal care with substance abuse programmingsubstance abuse programming

Promote gender specific substance Promote gender specific substance abuse treatment programsabuse treatment programs

Advocate for services with a single Advocate for services with a single point of access addressing social and point of access addressing social and health needs of pregnant women health needs of pregnant women with substance use problemswith substance use problems


Best Practice StatementsBest Practice StatementsTertiary Prevention Tertiary Prevention

(cont’d)(cont’d) Intensive case management of Intensive case management of

serviceservice

Openness to intermediary harm Openness to intermediary harm reduction goalsreduction goals

No evidence to support the use of No evidence to support the use of punitive measures, such as punitive measures, such as mandated treatmentmandated treatment


Best Practice ActivitiesBest Practice ActivitiesSecondary and Tertiary Secondary and Tertiary

PreventionPrevention Programming specific to women who are Programming specific to women who are

pregnant and using substancespregnant and using substances Routine screening to identify women who are Routine screening to identify women who are

at risk of having a baby born with FASDat risk of having a baby born with FASD Women centred substance abuse treatment Women centred substance abuse treatment

programs for women who are pregnantprograms for women who are pregnant ““One stop” programmingOne stop” programming Home visitation case managementHome visitation case management


Best Practice StatementsBest Practice StatementsIdentificationIdentification

Diagnostic services enhanced through Diagnostic services enhanced through specialized training, telemedicine and traveling specialized training, telemedicine and traveling clinicsclinics

Routine screening of maternal alcohol use Routine screening of maternal alcohol use during prenatal careduring prenatal care

Supportive atmosphere when discussing Supportive atmosphere when discussing substance abuse problems with pregnant substance abuse problems with pregnant womenwomen


Best Practice ActivitiesBest Practice ActivitiesIdentificationIdentification

Accessible multidisciplinary Accessible multidisciplinary diagnostic servicesdiagnostic services

Standardized clinical guidelinesStandardized clinical guidelines FASD - specific clinicsFASD - specific clinics Psychosocial assessment servicesPsychosocial assessment services Physician training specific to FASDPhysician training specific to FASD


Best Practice StatementsBest Practice StatementsIntervention - InfancyIntervention - Infancy

Use of a multidisciplinary team to address the range Use of a multidisciplinary team to address the range of complex needs for infants affected by FASDof complex needs for infants affected by FASD

Long-term, stable living environments where Long-term, stable living environments where caregivers have FASD specific information, training caregivers have FASD specific information, training and supportand support

Low staff-child ratio programmingLow staff-child ratio programming

Access to early educational interventionsAccess to early educational interventions


Best Practice ActivitiesBest Practice ActivitiesIntervention - InfancyIntervention - Infancy

Infant development programs Infant development programs designed specifically for infants designed specifically for infants with FASD (low staff-child ratio, low with FASD (low staff-child ratio, low sensory activities, etc.)sensory activities, etc.)

Support for caregivers of infants Support for caregivers of infants with FASDwith FASD

Home visitation case managementHome visitation case management


Best Practice StatementsBest Practice StatementsIntervention - ChildhoodIntervention - Childhood

Caregivers of children with FASD benefit Caregivers of children with FASD benefit from ongoing support and advocacy for from ongoing support and advocacy for medical, educational and psychological medical, educational and psychological issuesissues

Children with FASD benefit from an Children with FASD benefit from an Individualized Education Plan (IEP) Individualized Education Plan (IEP) involving a range of collaborating involving a range of collaborating professionalsprofessionals


Best Practice StatementsBest Practice StatementsIntervention - Childhood Intervention - Childhood

(cont’d)(cont’d) Learning environments should be adjusted Learning environments should be adjusted

for children affected by FASD - calm, quiet, for children affected by FASD - calm, quiet, routine, structure, etc.routine, structure, etc.

Individualized curriculums should include a Individualized curriculums should include a focus on functional skills for independent focus on functional skills for independent living (problem solving, social interacting, living (problem solving, social interacting, etc.), behaviour management strategies etc.), behaviour management strategies and developing realistic expectations of and developing realistic expectations of the childthe child


Best Practice ActivitiesBest Practice ActivitiesIntervention - ChildhoodIntervention - Childhood

FASD specific school programs - FASD specific school programs - adjusted curriculum and classroom adjusted curriculum and classroom requirementsrequirements

Life-skills programs to include Life-skills programs to include information on the consequences of information on the consequences of drinking during pregnancydrinking during pregnancy

Multidisciplinary case management Multidisciplinary case management teams for ongoing supportteams for ongoing support


Best Practice StatementsBest Practice StatementsIntervention - Intervention - AdolescenceAdolescence

Adolescents benefit from basic Adolescents benefit from basic socialization and communication socialization and communication skills, tailored vocational counselling skills, tailored vocational counselling and employment supervisionand employment supervision

Tailored programming for substance Tailored programming for substance abuse treatment, mental health abuse treatment, mental health services and within the correction services and within the correction systemsystem


Best Practice ActivitiesBest Practice ActivitiesIntervention - Intervention - AdolescenceAdolescence

Programming specific for youth Programming specific for youth affected by FASD (job readiness, affected by FASD (job readiness, alternative sentencing, supported alternative sentencing, supported employment, alternative training)employment, alternative training)

Supportive housing for youth affected Supportive housing for youth affected by FASD (group homes)by FASD (group homes)

Substance abuse treatment programs Substance abuse treatment programs designed for youth affected by FASDdesigned for youth affected by FASD


Best Practice StatementsBest Practice StatementsIntervention - AdulthoodIntervention - Adulthood Consistent case management and Consistent case management and

advocacy for adults (and their advocacy for adults (and their children)children)

Substance abuse programs, Substance abuse programs, employment training, mental health employment training, mental health and correctional services tailored and correctional services tailored for adults affected by FASDfor adults affected by FASD


Best Practice ActivitiesBest Practice ActivitiesIntervention - AdulthoodIntervention - Adulthood

Supportive living environments Supportive living environments (external brain managers)(external brain managers)

Tailored employment programsTailored employment programs Programs within the correctional Programs within the correctional

system directed for adults affected by system directed for adults affected by FASDFASD

Support for family members Support for family members supporting an adult affected by FASDsupporting an adult affected by FASD


Implementation Guide:Implementation Guide:What is it?What is it?

a guide based on principles from a guide based on principles from Health Canada’s Health Canada’s Best Practices and Best Practices and Situational Analysis for FAS/FAE and Situational Analysis for FAS/FAE and the Effects of Other Substance Use the Effects of Other Substance Use During PregnancyDuring Pregnancy (2001) (2001)

a step by step framework for policy a step by step framework for policy and practice modificationand practice modification

a modified lens for looking at FASDa modified lens for looking at FASD


Values Guiding our WorkValues Guiding our Work

Hope…….Hope……. Respect…….Respect……. Understanding……..Understanding…….. Compassion………Compassion……… Cooperation……….Cooperation……….

(Adapted from the Saskatchewan FAS Coordinating (Adapted from the Saskatchewan FAS Coordinating Committee Guiding Principles 2001)Committee Guiding Principles 2001)


HopeHope

Recognize that at whatever point a Recognize that at whatever point a woman can stop or reduce her drinkingwoman can stop or reduce her drinkingin pregnancy, there is hope for her to in pregnancy, there is hope for her to have a healthier childhave a healthier child

Acknowledge that no matter what, Acknowledge that no matter what, supportive intervention is effectivesupportive intervention is effective


RespectRespect

The abilities of individuals affected by FASDThe abilities of individuals affected by FASD

The knowledge of those who parent The knowledge of those who parent individuals affected by FASDindividuals affected by FASD

The rights and capabilities of women and their The rights and capabilities of women and their partners to make obvious choices about their partners to make obvious choices about their health and that of their childrenhealth and that of their children


UnderstandingUnderstanding Stay open to new information and be aware Stay open to new information and be aware

and reflective of your own attitudes and valuesand reflective of your own attitudes and values

Inform yourselves about the issues and on-Inform yourselves about the issues and on-going researchgoing research

Avoid sensationalizing FASDAvoid 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 communityan individual, their family and community


CompassionCompassion

Be sensitive to the needs of Be sensitive to the needs of individuals affected by FASDindividuals affected by FASD

Be open to learning people’s Be open to learning people’s strengths and challengesstrengths and challenges

Be sensitive to the situation of women Be sensitive to the situation of women using alcohol using alcohol

Be open to the individual process of Be open to the individual process of recoveryrecovery


CooperationCooperation

Recognize the importance of Recognize the importance of building partnerships within building partnerships within communities in addressing all communities in addressing all aspects of FASDaspects of FASD


GoalsGoals

Prevent FASDPrevent FASD Assist in development of appropriate Assist in development of appropriate

policy and practice in relation to policy and practice in relation to FASD Best PracticesFASD Best Practices

Increase community capacity to Increase community capacity to provide care and support to those provide care and support to those who are affected by FASDwho are affected by FASD


ObjectivesObjectives

Reduce incidence of FASD through Reduce incidence of FASD through increased awareness and knowledgeincreased awareness and knowledge

Train all staff regarding FASD and its Train all staff regarding FASD and its impacts on children and adultsimpacts on children and adults

Increase public education activities in Increase public education activities in FASD FASD prevention prevention and and interventionintervention


Objectives Objectives (cont’d)(cont’d)

Increase coordination between Increase coordination between disciplines to ensure proper disciplines to ensure proper diagnosis and referral for servicesdiagnosis and referral for services

Support individuals and families Support individuals and families affected by FASDaffected by FASD

Develop a committee dedicated to Develop a committee dedicated to reviewing policy and practice in reviewing policy and practice in relation to Best Practicesrelation to Best Practices


MethodologyMethodology

WatchWatch

Get helpGet help

DoDo


Watch - see the world Watch - see the world differentlydifferently

Become educated about FASDBecome educated about FASD Examine challenges to policy and Examine challenges to policy and

practice implementation and find practice implementation and find strengths within the organization and strengths within the organization and communitycommunity

Make the paradigm shift required to Make the paradigm shift required to view services through the FASD lensview services through the FASD lens


Education - Ask Education - Ask Yourselves...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 Can you collect and review FASD

resources?resources? Can you discuss Best Practices with Can you discuss Best Practices with

families affected by FASD?families affected by FASD? Can you educate community members Can you educate community members

regarding FASD?regarding FASD?


Challenges and Challenges and StrengthsStrengths

Is Federal or Provincial legislation Is Federal or Provincial legislation limiting FASD work?limiting FASD work?

Are costs prohibiting access to services Are costs prohibiting access to services in your community?in your community?

Are consistent messages about alcohol Are consistent messages about alcohol and pregnancy visible in your and pregnancy visible in your community?community?

Are FASD diagnostic services obtainable?Are FASD diagnostic services obtainable?


Challenges and Challenges and Strengths Strengths (cont’d)(cont’d)

Are there already knowledgeable staff Are there already knowledgeable staff regarding FASD in your organization?regarding FASD in your organization?

Are there existing community Are there existing community partnerships?partnerships?

Do you have flexible programming?Do you have flexible programming? Are there strong and committed family Are there strong and committed family

members and support people for members and support people for individuals affected by FASD?individuals affected by FASD?


Paradigm ShiftParadigm Shift

Need to change expectations that all Need to change expectations that all behaviour can be changedbehaviour can be changed

FASD needs to be seen as an invisible FASD needs to be seen as an invisible disabilitydisability

Dependence is a factor of FASDDependence is a factor of FASD People with FASD need things to be People with FASD need things to be

repeated many times and to be repeated many times and to be reminded oftenreminded often


Paradigm Shift Paradigm Shift (cont’d)(cont’d)

Individuals with FASD need to be Individuals with FASD need to be informed of their disabilityinformed of their disability

Support people need to stay involvedSupport people need to stay involved Early diagnosis is key to accessing Early diagnosis is key to accessing

appropriate servicesappropriate services Structure, supervision and simplicity Structure, supervision and simplicity

are keyare key Models of alternative justice should Models of alternative justice should

be usedbe used


Get Help - to take on the Get Help - to take on the tasktask

Form PartnershipsForm Partnerships


PartnershipsPartnerships

Can you join or create a Can you join or create a multidisciplinary FASD committee?multidisciplinary FASD committee?

Can you locate and refer to Can you locate and refer to professionals who have an professionals who have an understanding of FASD in health, understanding of FASD in health, education, social work, mental education, social work, mental health, addictions, justice, health, addictions, justice, employment and housing?employment and housing?


Partnerships Partnerships (cont’d)(cont’d)

Can you locate positive role Can you locate positive role models for FASD in your models for FASD in your community?community?

Can you seek information from Can you seek information from FASD experts?FASD experts?


Do - the work neededDo - the work needed

Review existing policies and Review existing policies and practices and modify them with practices and modify them with regards to FASD regards to FASD

Remain consistent with Best Remain consistent with Best PracticesPractices


Modifying Policies and Modifying Policies and PracticePractice

Can you develop an on-going Best Can you develop an on-going Best Practice committee within your Practice committee within your organization?organization?

Can you review FASD literature and Can you review FASD literature and resources?resources?

Can you review existing policies through Can you review existing policies through the FASD lens?the FASD lens?

Can you hold on-going training sessions Can you hold on-going training sessions on FASD for all staff?on FASD for all staff?


Modifying Policies and Modifying Policies and Practice Practice (cont’d)(cont’d)

Can you modify policies and Can you modify policies and practice?practice?

Can you incorporate FASD Can you incorporate FASD awareness into training for all awareness into training for all activities?activities?

Can you disseminate information to Can you disseminate information to partners in the area?partners in the area?

Can you act as a mentor to other Can you act as a mentor to other organizations?organizations?


Best PracticesBest Practices

As organizations move through each As organizations move through each statement they can ask themselves which statement they can ask themselves which stage they are at (watch, get help, do) and stage they are at (watch, get help, do) and where their target stage will bewhere their target stage will be

Not all organizations will be able to reach Not all organizations will be able to reach the “Do” stage for each Best Practice the “Do” stage for each Best Practice statement, but knowing where to refer or statement, but knowing where to refer or get information is keyget information is key


Action PlanAction Plan

Once organizations understand where they Once organizations understand where they are currently and what their goals are for are currently and what their goals are for the future, Action Plans can be developed the future, Action Plans can be developed to reflect the steps needed to achieve Best to reflect the steps needed to achieve Best PracticePractice

Short term and long term goals should be Short term and long term goals should be established and reviewed on an on-going established and reviewed on an on-going basisbasis


Action Plan Action Plan (cont’d)(cont’d)

Action Plans change and develop as Action Plans change and develop as new information is obtained and new new information is obtained and new programs are developedprograms are developed

An FASD Best Practice Committee An FASD Best Practice Committee within the organization and within the organization and community is key to ensuring that community is key to ensuring that the issues are not ‘lost’the issues are not ‘lost’


ReferencesReferences

Best Practices for FAS/FAE and the Effects of Other Best Practices for FAS/FAE and the Effects of Other Substance Use During Pregnancy Substance Use During Pregnancy (Health Canada, 2001)(Health Canada, 2001)

2000, the Canadian Centre on Substance Abuse 2000, the Canadian Centre on Substance Abuse undertook a Situational Analysis Project on FAS/FAEundertook a Situational Analysis Project on FAS/FAE

Best Practices: Treatment and Rehabilitation for Women Best Practices: Treatment and Rehabilitation for Women with Substance Use Problemswith Substance Use Problems (Health Canada, 2001) (Health Canada, 2001)

Preventing Substance Use Problems Among Young Preventing Substance Use Problems Among Young People: A Compendium of Best PracticesPeople: A Compendium of Best Practices (Health Canada (Health Canada 2001)2001)

Enhancing Fetal Alcohol Syndrome (FAS)-related Enhancing Fetal Alcohol Syndrome (FAS)-related Intervention at the Prenatal and Early Childhood Stages Intervention at the Prenatal and Early Childhood Stages in Canadain Canada (Canadian Centre on Substance Abuse, 2001) (Canadian Centre on Substance Abuse, 2001)

faseout project 2006: fetal alcohol spectrum disorder: best practices

Documents

faseout project

prevention of fasd

pregnancy slide

pregnancy health canada

educators health canada

current best practices

best practices contd

substance use