Fase Out Implementation Guide Revised April 05

7/28/2019 Fase Out Implementation Guide Revised April 05

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FASEout Fetal Alcohol Syndrome/Effects Outreach ProjectBest Practices Implementation Guide

What are Best Practices?Best Practices in Fetal Alcohol Spectrum Disorder (FASD) assist agencies and organizationswho work with families and individuals who have been affected by Fetal Alcohol SpectrumDisorder or in preventive services in providing the best and most appropriate services andsupport. Best Practices is meeting the needs of individuals with who may have Fetal AlcoholSpectrum Disorder and ensuring that prevention of FASD is a component of everyday service.

The purpose of this guide is to assist organizations in developing an action plan for the stepsneeded to fully implement the Fetal Alcohol Spectrum Disorder Best Practices in prevention,diagnosis and intervention. Organizations may wish to do additional research, including aliterature review, looking internally within their own organization, using external consultationand obtaining feedback from clients.

This guide is based on three documents that provide Fetal Alcohol Spectrum Disorder BestPractices evidence findings:Best Practices: Fetal Alcohol Syndrome/Fetal Alcohol Effects andthe Effects of Other Substance Use During Pregnancy; Situational Analysis: Fetal AlcoholSyndrome/Fetal Alcohol Effects and the Effects of Other Substance Use during Pregnancy , andEnhancing Fetal Alcohol Syndrome (FAS)-related Intervention at the Prenatal and Early

Childhood Stages in Canada. All are based on literature reviews, key informant interviews andproject surveys. In theBest Practices document, where there is no evidence from controlled orquasi-experimental studies or case studies or evaluations, a consensus among experts is used toestablish Best Practices.

Canadian Institute of Child Health 1


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Glossary of Terms:

Fetal Alcohol Spectrum Disorder (FASD) is a term which describes the range of mental and

physical disabilities associated with prenatal exposure to alcohol. It is not a diagnostic term. Forpurposes of simplicity, the term FASD will be used throughout this document when referring tothe range of diagnoses.

Fetal Alcohol Syndrome (FAS) is a medical diagnosis that refers to a set of alcohol-relateddisabilities associated with prenatal exposure to alcohol. The minimum criteria for diagnosing anindividual with FAS are: prenatal exposure to alcohol, characteristic facial features, growthrestriction (pre and post natal) and central nervous system (CNS) dysfunction involvingstructural brain abnormalities, intellectual impairments as well as a complex pattern ofbehaviours.

Partial FAS (pFAS) is a diagnostic term that refers to an individual who was exposed prenatallyto alcohol and presents with central nervous system (CNS) dysfunction and most (but not all) ofthe growth and/or characteristic facial features of FAS.

Alcohol Related Neurodevelopmental Disorder (ARND) is a diagnostic term that refers to theneuro-cognitive dysfunction and complex patterns of behaviour caused by prenatal alcoholexposure. Individuals may not show any of the characteristic facial features or growth restrictionassociated with FAS. The most common difficulties are: developmental delays, speech delays,learning disabilities, hyperactivity, attention deficits, memory problems, poor judgement, lack ofcause and effect reasoning, difficulties problem solving, anger outbursts/rages, failure tounderstand consequences, impulsive behaviour, difficulty with abstract reasoning (i.e. time,money), problems with sequencing, and difficulty integrating social skills and socialcommunication. ARND is an invisible disability.

Fetal Alcohol Effects (FAE) is the result of prenatal exposure to alcohol but with only some ofthe characteristics of FAS. The signs of FAE may not be evident until the child reaches schoolage or even adolescence. FAE is an invisible disability. (This term for the most part has beenreplaced with the diagnostic terms of pFAS and ARND.)

Primary Disabilities of FASD are the direct result of structural and/or functional damage to anindividual caused by prenatal exposure to alcohol. While they can be evident in certain physicalcharacteristics, it is the direct damage to the brain that has the greatest effect. Generalizeddamage to the brain typically has significant impact on cognitive processing and emotional

regulation.

Secondary Disabilities of FASD result from negative consequences of primary disabilities andcan often change with appropriate and timely interventions. They may include mental healthproblems (depression, anxiety), disrupted school experience, conflict with the law, inappropriatesexual behaviour, drug and alcohol problems, difficulties living independently, and problemswith employment.

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Some Important Statistics:

The incidence of FASD is conservatively estimated to be one to nine in 1,000 live births.

In populations with a high proportion of pregnant women who drink alcohol, the incidence

of FASD is high.

The rates of FASD in some Canadian aboriginal and northern communities are much

higher than average (i.e. 1 in 5 children affected).

Women who report drinking more frequently tend to:

be older; have higher educational attainment;

be single or divorced;

hold blue collar or managerial positions.

Studies indicate that women who drink a higher number of drinks per occasion tend to:

be younger;

have lower educational attainment;

be single or divorced;

be unemployed, a student or in a blue collar job.

Studies indicate that 15-25% of women drink alcohol during pregnancy.

Other risk factors for women drinking during pregnancy:

living in poverty or isolation, poor nutrition;

poor prenatal care;

multiple drug users;

young women.

Studies have found a wide variation of high risk groups for FASD:

children in the care of child welfare;

some children adopted internationally; individuals involved in the Criminal Justice System and the homeless population.

A Canadian study (2000) states the cost of FASD annually to Canada of those 1 to 21

years old, was $344,208,000.



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Guiding Principles for Effective Strategies inIncorporating FASD Best Practices

VALUES GUIDING OUR WORK

Hope...By recognizing that, at whatever point a woman can stop or reduce her drinking in pregnancy,there is hope for her to have a healthier child;By acknowledging that supportive intervention is effective;By acknowledging that with each thoughtful action we take toward the prevention of FASD, wecan make a difference.

Respect...For the abilities of those individuals affected by FASD;For the knowledge of those parenting individuals with FASD;For all communities in their efforts to address FASD;

Understanding...By staying open to new information and being aware and reflective of our own attitudes andvalues;By informing ourselves about the issues and current research;By not sensationalizing FASD;

By being sensitive to the impact of a diagnosis on an individual, a family and a community.

CompassionBy being sensitive to the needs of individuals and families impacted by FASD, and being open tolearning both their strengths and their challenges;By being sensitive to the situation of women with alcohol and drug problems, especially bybeing open to their individual processes of recovery.

Cooperation...By recognizing the importance of building partnerships within communities in addressing allaspects of FASD.

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

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Mission Statement

Dedicated to taking current evidence on Fetal Alcohol Spectrum Disorder Best Practices off the

bookshelves and get it into use across Canada within the health, educational, social service andjudicial sectors. Coordination, collaboration, communication and inclusion will characterizeplanning and implementation of current Best Practices information.

Goals To prevent Fetal Alcohol Spectrum Disorder and its related effects.

To assist in the development of appropriate policy and practice in relation to Fetal Alcohol

Spectrum Disorder Best Practices.

To increase community capacity to provide care and support to those already affected.

Objectives To reduce the incidence of FASD through increased awareness and knowledge. To train all staff regarding FASD and its impacts of children and adults.

To increase public education activities in FASD prevention and intervention.

To increase coordination between disciplines to ensure proper diagnosis and referral for

services from the community.

To support FASD affected individuals and families.

To develop a committee dedicated to reviewing policy and practice in relation to FASD Best

Practices.

METHODOLOGY

WATCH - see the world differently

- become educated about Fetal Alcohol Spectrum Disorder

- examine challenges to policy/practice implementation and find strengths within theorganization and community

- make the paradigm shift required to view services through the FASD lens.

GET HELP - to take on the task

- form partnerships.

DO - the work needed

- review existing policies and practices and modify them with regards to Fetal Alcohol SpectrumDisorder so they are consistent with FASD Best Practices.



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1. Education - become educated about FetalAlcohol Spectrum Disorder

Can you attend Fetal Alcohol Spectrum Disorder conferences and workshops?

train all staff within your organization about Fetal Alcohol Spectrum Disorder?

collect current information on FASD and develop a resource area (posters, pamphlets,

books, reports, videos)?

review FASD Best Practices literature and access FASD web-sites?

learn about cultural sensitivities and how they impact on FASD?

discuss Best Practices with families affected by Fetal Alcohol Spectrum Disorder?

educate community members regarding Fetal Alcohol Spectrum Disorder and seek media

support to increase awareness?

2. Examine challenges in policy/practiceimplementation, and find strengths withinthe organization and community

Challenges: Are messages about alcohol and pregnancy visible in the community?

Is family friendly treatment available for women with addictions?

Are maternal drinking histories being taken?

Are costs prohibiting access to services for women, families and individuals?

Are Fetal Alcohol Spectrum Disorder diagnostic services obtainable?

Is confidentiality in records blocking maternal drinking history?

Are there appropriate services for FASD affected individuals and their family members:

i.e. Special Education; disability services for those with an IQ over 70; help for peoplewith invisible disabilities; adjusted programs in counselling, addictions, and corrections;assisted employment; and assisted living?

Is the need for informed consent stopping involvement of support people?

Is federal or provincial legislation limiting Fetal Alcohol Spectrum Disorder work (i.e.

criminal justice system, child protection)?

Strengths: Are there knowledgeable staff regarding Fetal Alcohol Spectrum Disorder and

community services?

Are there physicians/midwives and social workers with the ability to obtain maternal

drinking history?

Are there strong and committed family members and support people for persons with

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Fetal Alcohol Spectrum Disorder?

Are there existing community partnerships?

Is there flexible programming?

Is there organizational and community capacity?



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3. Make the paradigm shift required to viewservices through the FASD lens

Trying Differently Rather Than Trying Harder by Diane Malbin

The change in perception (shift) can be seen as moving from:

Seeing the FASD individual as: To understanding the individual as:

Wont Cant

Bad Frustrated, challenged

Refuses to sit still Over-stimulated

Resisting Doesnt get itTrying to get attention Needing contact, support

Doesnt try Tired of always failing

FASD is a life long disability. Individuals affected by FASD will not grow out of their disability.

Key points for consideration: Fetal Alcohol Spectrum Disorder is often an invisible disability.

Early diagnosis is key to services and early interventions.

FASD affected individuals need to be informed about their disability.

Dependence is a factor with most FASD affected individuals. FASD affected adolescents and adults need parents/support people to stay involved.

FASD affected individuals learn best with structure, supervision, and simplicity.

Distractions should be removed. Visual learning techniques, the ability to work at theirown pace with lots of individual attention helps.

Time lines for services need to be extended.

Some things may need to be repeated many times with frequent reminders.

Courts need to take Fetal Alcohol Spectrum Disorder into account for those accused,

victims and witnesses. For those found guilty, court-ordered assessments should precedesentencing.

Models of alternative justice should be used. There is need to focus on the successes and strengths of FASD affected individuals,

families, organizations, and communities.

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4. Form partnerships

Can you

Seek information from Fetal Alcohol Spectrum Disorder experts?

Join or create a multidisciplinary Fetal Alcohol Spectrum Disorder committee?

List, connect to and refer to community connections in: medicine and health, community,

child care, education, social work, mental health, addictions, employment, housing,recreation & culture, law enforcement and criminal justice?

Locate positive role models for Fetal Alcohol Spectrum Disorder in the community?

Connect FASD affected individuals and their families to others?

Find adjusted programs in Fetal Alcohol Spectrum Disorder prevention, diagnosis and

intervention for FASD affected individuals and their families within the community?

5. Review existing policies and practices andmodify them with regards to Fetal AlcoholSpectrum Disorder so they are consistent withFASD Best Practices

Can you

Strike an on-going Best Practices team within your organization? Review existing policies and procedures through the FASD lens?

Modify policies and practices to be consistent with Best Practices?

Choose Best Practices to implement in relation to current policies and procedures?

Review literature and resources to identify relevant information?

Hold on-going training sessions on Fetal Alcohol Spectrum Disorder?

Incorporate Fetal Alcohol Spectrum Disorder awareness into all training activities?

Disseminate information to community partners?

Act as mentor to other organizations?

Evaluate the process and its outcome?



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WITH

Hope Respect UnderstandingCompassion Cooperation

Enhancing FASD Intervention WATCH GET HELP DO

Take a lead role within the community

Address root causes of alcohol use inpregnancy, broad determinants of health

Build capacity within the community

Foundational program characteristics WATCH GET HELP DO

Grass-roots development approach,with community groups & family partnerships

Integrated programs with substance use& pregnancy as part of comprehensive service

Incorporate cultural, linguistic & social valuesof the community

Flexible approach to meet the specific needs offamilies

Non-judgmental relationship with women

Preventing substance use during pregnancy WATCH GET HELP DO

Provide one-to-one support, counselling

Use brief screening instruments in supportingrelationship

Brief interventions in pre-natal settings based oncognitive-behavioural principles which areculturally sensitive

Alcohol and drug education programs for pregnantadolescents attending prenatal clinics which areculturally sensitive

Accept that women may not be able to stopdrinking but only reduce alcohol intake (using theharm reduction model and principles)

Incorporate peer support

Develop appropriate intervention services forpregnant women that are easily accessible

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Help families & individuals living with FASD WATCH GET HELP DO

Provide early identificationAdvocate for the individual and family with otheragencies

Provide a stable program environment

Support stability at home

Provide or facilitate family support

WITH

Hope Respect Understanding

Compassion Cooperation

Best Practices

Prevention Primary

Inform about, advocate for, take part in:

WATCH GET HELP DO

Multi-component community-wide initiatives to increaseawareness of the risks associated with alcohol use duringpregnancy

Community campaigns/public health prevention messageswhich include community involvement and promotereferrals

Life-skills based and multi-component school-communityalcohol and drug use prevention programs to prevent ordelay substance use among youth

Prevention Secondary

Inform about, advocate for, refer to:

Screen pregnant women for use of alcohol and other

substances in various settings (i.e. justice, health, housing)Use the T-ACE, TWEAK, CAGE and/or AUDIT alcoholdependence instruments in a supportive milieu withwomen regarding their alcohol use during pregnancy

Physicians use of bio-markers as a follow-up to a writtenscreen

Alcohol and drug education programs for pregnant



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adolescents/women attending prenatal clinics

Training for physicians, midwives, elders & helpingprofessionals who work with women who have alcoholand drug problems. (Training must seek to address

questions of racism, discrimination, traditional practicesregarding childbirth and childrearing.)

Prevention Tertiary

Inform about, advocate for, refer to, provide: WATCH GET HELP DO

Prenatal care combined with other services, includingsubstance abuse treatment

Gender-specific substance abuse treatment

Treatment services with a respectful, flexible,culturally appropriate and women-centred approach that isopen to intermediary harm reduction goals, based on client

circumstancesServices with a single point of access addressing a rangeof social and health needs of pregnant women with alcoholand drug problems (assistance with transportation andchild care, educational, vocational training, job placement,housing, obtaining food, income support and help inaccessing health care, mental health services) throughcollaboration between relevant service providers

Intensive case management or coordination of services thatadvocate for women while promoting family planning,access to addiction services, retention in treatment, harm

reduction, and building community connectionsContingency management approach to reduce cocaine useand increase attention to prenatal care among cocaine-dependent women

Priority access to Methadone Maintenance Therapy forpregnant women

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WITH


Best Practices

Identification - Diagnosis & Services

Inform about, advocate for, refer to:

WATCH GET HELP DO

Routine, collaborative screening during prenatal care forFASD

Availability of diagnostic services, enhanced throughmechanisms such as specialized training, consultation and

support, telemedicine and travelling clinics. This needs toinclude the sensitization of diagnostic tools to the localcommunity context (i.e. psychological testing, standardmeasurements).

Selective screening and a detailed maternal history, in asupportive atmosphere, when particular maternalcharacteristics are present, e.g., lack of prenatal care,previous unexplained fetal demise, repeated spontaneousabortions, severe mood swings and precipitous labour, orwhen infant attributes indicate prematurity, unexplainedintra-uterine growth retardation, neuro-behavioural

abnormalities, urogential anomalies, myocardial infarctionand blood flow restriction

Intervention Activities - to prevent or reduce

harm associated with primary orsecondary disabilities:Inform about, advocate for, refer to, provide:

WATCH GET HELP DO

Child care programs for children with low staff-child ratio,following structured routines, and regulation of stimulation

Family centred substance abuse treatment, respite care andother support services



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WITH

Hope Respect Understanding

Compassion Cooperation

Infancy and Early Childhood Interventions:

Inform about, advocate for, refer to, provide:

WATCH GET HELP DO

A professional multidisciplinary team to address the range ofcomplex health needs of affected children (i.e. traditionalpractitioners, health care education, social service providers)who coordinate their efforts with team members in hospital orclinical settings

Longer-term, stable living environment facilitated by family-

centred substance abuse treatment, respite care and othersupport services

FASD specific information and training for birth, foster andadoptive parents

Child-care programs with low staff-child ratio followingstructured routines and regulating the amount of stimulationreceived by the child

Services with single point of access for mother with attentionto the developmental needs of the child

A range of services to support parenting

Early educational interventions

Training of childcare workers to be knowledgeable andsensitive to the needs of children who are FASD affected andto those of their family

Later Childhood Interventions:


WATCH GET HELP DO

Ongoing support & advocacy for all persons parenting anFASD affected child for various medical, educational andsocial issues that arise with a particular sensitivity to biologicalparents who may face issues of stigma, poverty and racism

Individualized Education Plans (IEP) tailored to meet the

multiple cognitive, academic and psychosocial needs of FASDaffected children, involving a range of collaboratingprofessionals

Adjusted supportive learning environments by establishing acalm, quiet environment with structure, routine and fewdistractions, low enrolment classrooms, resource rooms or self

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contained classroom placement; defined specific work and playareas and work spaces that are clear and with little variation.Other elements include: use of explicit instruction and visualaids to reinforce classrooms and activities; repetition and

hands-on learning; modelling of desired behaviours.School content should generally involve an individualizedcurriculum with a focus on functional skills for independentliving, e.g. problem solving, arithmetic, social interacting, anddecision-making; developing realistic expectations of the child;behaviour management strategies that promote independence;adaptive living, social and communication skills; and roleplaying to teach logical consequences and appropriatebehaviour.

WITH


Adolescent Interventions:


WATCH GET HELP DO

Assistance with basic socialization & communication skills

Tailored vocational counselling and employment services;money management training, sexuality and birth controleducation, and alcohol and drug use education

Tailored programming for those who become involved withsubstance abuse treatment, mental health or the correctionalsystems

Appropriate services and mutual support groups for familiescaring for those affected by FASD, that extend over the life-span of the person

Cognitive-behavioural and behavioural family therapies forthose helping individuals with intellectual deficits to learn andmaintain various basic living skills

Adult InterventionsInform about, advocate for, refer to, provide: WATCH GET HELP DO

Continuing advocacy and/or case management to help FASDaffected individuals to deal with the many challenges of adultlife

Modified substance abuse treatment programs, employmenttraining, mental health therapy, correctional services



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Fase Out Implementation Guide Revised April 05

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