2008 www.faseout.ca

Fetal Alcohol Spectrum Disorder: Best Practices

2008 www.faseout.ca

• 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

2008 www.faseout.ca

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

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

2008 www.faseout.ca

Best Practices (cont’d)

• 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

2008 www.faseout.ca

Best Practice Statements

Best Practice statements were developed for:

– Prevention

– Identification

– Intervention

2008 www.faseout.ca

Prevention

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

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

• prevent conception while substances are used

• reduce harm arising from substance use during pregnancy

2008 www.faseout.ca

Primary Prevention

Activities undertaken with a

healthy population in order to

maintain or enhance physical

and/or emotional health

2008 www.faseout.ca

Secondary Prevention

Activities aimed to address a problem before it becomes

severe or persistent

2008 www.faseout.ca

Tertiary Prevention

Activities for individuals in

whom the condition has

already developed

2008 www.faseout.ca

Identification

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

2008 www.faseout.ca

Diagnosis

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

2008 www.faseout.ca

Intervention

• 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

2008 www.faseout.ca

Best Practice Statements:Primary Prevention

• Limit the availability of alcohol

• Use warning labels and posters

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

2008 www.faseout.ca

Best Practice Activities:Primary Prevention

• Public awareness campaigns

• Warning signs and labels

• Information dissemination

• Public education workshops

• Community-based projects

2008 www.faseout.ca

Best Practice Statements:Secondary Prevention

• 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

• Use cognitive-behavioural intervention methods with women with early-stage alcohol problems

2008 www.faseout.ca

Best Practice Statements:Tertiary Prevention

• Combine prenatal care with substance abuse programming

• 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

2008 www.faseout.ca

Best Practice Statements:Tertiary Prevention (cont’d)

• Intensive case management of service

• Openness to intermediary harm reduction goals

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

2008 www.faseout.ca

Best Practice Activities:Secondary and Tertiary Prevention

• 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

• Women centred substance abuse treatment programs for women who are pregnant

• “One stop” programming

• Home visitation case management

2008 www.faseout.ca

Best Practice Statements:Identification

• Diagnostic services enhanced through specialized training, telemedicine and traveling clinics

• Routine screening of maternal alcohol use during prenatal care

• Supportive atmosphere when discussing substance abuse problems with pregnant women

2008 www.faseout.ca

Best Practice Activities:Identification

• Accessible multidisciplinary diagnostic services

• Standardized clinical guidelines

• FASD - specific clinics

• Psychosocial assessment services

• Physician training specific to FASD

2008 www.faseout.ca

Best Practice Statements:Intervention - Infancy

• 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

• Low staff-child ratio programming

• Access to early educational interventions

2008 www.faseout.ca

Best Practice Activities:Intervention - Infancy

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

• Support for caregivers of infants with FASD

• Home visitation case management

2008 www.faseout.ca

Best Practice Statements:Intervention - Childhood

• 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

2008 www.faseout.ca

Best Practice Statements:Intervention - Childhood (cont’d)

• 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

2008 www.faseout.ca

Best Practice Activities:Intervention - Childhood

• FASD specific school programs - adjusted curriculum and classroom requirements

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

• Multidisciplinary case management teams for ongoing support

2008 www.faseout.ca

Best Practice Statements:Intervention - Adolescence

• 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

2008 www.faseout.ca

Best Practice Activities:Intervention - Adolescence

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

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

• Substance abuse treatment programs designed for youth affected by FASD

2008 www.faseout.ca

Best Practice Statements:Intervention - Adulthood

• 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

2008 www.faseout.ca

Best Practice Activities:Intervention - Adulthood

• Supportive living environments (external brain managers)

• Tailored employment programs

• Programs within the correctional system directed for adults affected by FASD

• Support for family members supporting an adult affected by FASD

2008 www.faseout.ca

FASEout 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 step by step framework for policy and practice modification

• a modified lens for looking at FASD

2008 www.faseout.ca

Values Guiding our Work

• Hope…….

• Respect…….

• Understanding……..

• Compassion………

• Cooperation……….

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

2008 www.faseout.ca

Hope

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

• Acknowledge that no matter what, supportive intervention is effective

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

2008 www.faseout.ca

Respect

• The abilities of 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

(Adapted from the Saskatchewan FAS Coordinating Committee

Guiding Principles 2001)

2008 www.faseout.ca

Understanding• 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

• Avoid sensationalizing FASD

• Be sensitive to the impact of a diagnosis on an individual, their family and community (Adapted from the Saskatchewan FAS Coordinating Committee Guiding

Principles 2001)

2008 www.faseout.ca

Compassion

• Be sensitive to the needs of individuals affected by FASD

• Be open to learning people’s strengths and challenges

• Be sensitive to the situation of women using alcohol

• Be open to the individual process of recovery (Adapted from the Saskatchewan FAS Coordinating Committee Guiding

Principles 2001)

2008 www.faseout.ca

Cooperation

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

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

2008 www.faseout.ca

FASEout Goals

• Prevent FASD

• 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

2008 www.faseout.ca

FASEout Objectives

• Reduce incidence of FASD through increased awareness and knowledge

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

• Increase public education activities in FASD prevention and intervention

2008 www.faseout.ca

FASEout Objectives (cont’d)

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

• Support individuals and families affected by FASD

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

2008 www.faseout.ca

Methodology

Watch

Get help

Do

2008 www.faseout.ca

Watch - see the world differently

• Become educated about FASD

• 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

2008 www.faseout.ca

Education - Ask Yourselves...

• Can you attend FASD conferences?

• Can you train all staff about FASD?

• Can you collect and review FASD resources?

• Can you discuss Best Practices with families affected by FASD?

• Can you educate community members regarding FASD?

2008 www.faseout.ca

Challenges and Strengths

• Are costs prohibiting access to services in your community?

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

• Are FASD diagnostic services obtainable?

2008 www.faseout.ca

Challenges and Strengths (cont’d)

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

• Are there existing community partnerships?

• Do you have flexible programming?

• Are there strong and committed family members and support people for individuals affected by FASD?

2008 www.faseout.ca

Paradigm Shift

• Need to change expectations that all behaviour can be changed

• FASD needs to be seen as an invisible disability

• Dependence is a factor of FASD

• People with FASD need things to be repeated many times and to be reminded often

2008 www.faseout.ca

Paradigm Shift (cont’d)

• Individuals with FASD need to be informed of their disability

• Support people need to stay involved

• Early diagnosis is key to accessing appropriate services

• Structure, supervision and simplicity are key

• Models of alternative justice should be used

2008 www.faseout.ca

Get Help - to take on the task

Form Partnerships

2008 www.faseout.ca

Partnerships

• 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?

2008 www.faseout.ca

Partnerships (cont’d)

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

• Can you seek information from FASD experts?

2008 www.faseout.ca

Do - the work needed

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

• Remain consistent with Best Practices

2008 www.faseout.ca

Modifying Policies and Practice

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

• Can you review FASD literature and resources?

• Can you review existing policies through the FASD lens?

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

2008 www.faseout.ca

Modifying Policies and Practice (cont’d)

• Can you modify policies and practice?

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

• Can you disseminate information to partners in the area?

• Can you act as a mentor to other organizations?

2008 www.faseout.ca

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

• 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

2008 www.faseout.ca

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

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

2008 www.faseout.ca

Action Plan (cont’d)

• 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’

2008 www.faseout.ca

References

• Best Practices for FAS/FAE and the Effects of Other Substance Use During Pregnancy (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)

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