FASEout Fetal Alcohol Syndrome/Effects Outreach Project Best Practices Implementation Guide

What are Best Practices?

Best Practices in Fetal Alcohol Spectrum Disorder (FASD) assist agencies and organizations who work with families and individuals who have been affected by Fetal Alcohol Spectrum Disorder or in preventive services in providing the best and most appropriate services and support. Best Practices is meeting the needs of individuals with who may have Fetal Alcohol Spectrum 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 steps needed to fully implement the Fetal Alcohol Spectrum Disorder Best Practices in prevention, diagnosis and intervention. Organizations may wish to do additional research, including a literature review, looking internally within their own organization, using external consultation and obtaining feedback from clients. This guide is based on three documents that provide Fetal Alcohol Spectrum Disorder Best Practices evidence findings: Best Practices: Fetal Alcohol Syndrome/Fetal Alcohol Effects and the Effects of Other Substance Use During Pregnancy; Situational Analysis: Fetal Alcohol Syndrome/Fetal Alcohol Effects and the Effects of Other Substance Use during Pregnancy, and Enhancing Fetal Alcohol Syndrome (FAS)-related Intervention at the Prenatal and Early Childhood Stages in Canada. All are based on literature reviews, key informant interviews and project surveys. In the Best Practices document, where there is no evidence from controlled or quasi-experimental studies or case studies or evaluations, a consensus among experts is used to establish Best Practices.

Canadian Institute of Child Health

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. For purposes of simplicity, the term FASD will be used throughout this document when referring to the range of diagnoses. Fetal Alcohol Syndrome (FAS) is a medical diagnosis that refers to a set of alcohol-related disabilities associated with prenatal exposure to alcohol. The minimum criteria for diagnosing an individual with FAS are: prenatal exposure to alcohol, characteristic facial features, growth restriction (pre and post natal) and central nervous system (CNS) dysfunction involving structural brain abnormalities, intellectual impairments as well as a complex pattern of behaviours. Partial FAS (pFAS) is a diagnostic term that refers to an individual who was exposed prenatally to alcohol and presents with central nervous system (CNS) dysfunction and most (but not all) of the growth and/or characteristic facial features of FAS. Alcohol Related Neurodevelopmental Disorder (ARND) is a diagnostic term that refers to the neuro-cognitive dysfunction and complex patterns of behaviour caused by prenatal alcohol exposure. Individuals may not show any of the characteristic facial features or growth restriction associated with FAS. The most common difficulties are: developmental delays, speech delays, learning disabilities, hyperactivity, attention deficits, memory problems, poor judgement, lack of cause and effect reasoning, difficulties problem solving, anger outbursts/rages, failure to understand consequences, impulsive behaviour, difficulty with abstract reasoning (i.e. time, money), problems with sequencing, and difficulty integrating social skills and social communication. ARND is an invisible disability. Fetal Alcohol Effects (FAE) is the result of prenatal exposure to alcohol but with only some of the characteristics of FAS. The signs of FAE may not be evident until the child reaches school age or even adolescence. FAE is an invisible disability. (This term for the most part has been replaced with the diagnostic terms of pFAS and ARND.) Primary Disabilities of FASD are the direct result of structural and/or functional damage to an individual caused by prenatal exposure to alcohol. While they can be evident in certain physical characteristics, it is the direct damage to the brain that has the greatest effect. Generalized damage to the brain typically has significant impact on cognitive processing and emotional regulation. Secondary Disabilities of FASD result from negative consequences of primary disabilities and can often change with appropriate and timely interventions. They may include mental health problems (depression, anxiety), disrupted school experience, conflict with the law, inappropriate sexual behaviour, drug and alcohol problems, difficulties living independently, and problems with employment. 2

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. 3

Canadian Institute of Child Health

Guiding Principles for Effective Strategies in Incorporating 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, we can 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 and values; 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.

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

Cooperation...
By recognizing the importance of building partnerships within communities in addressing all aspects of FASD.
(Adapted from the Saskatchewan FAS Coordinating Committee Guiding Principles 2001)

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 and judicial sectors. Coordination, collaboration, communication and inclusion will characterize planning 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 the organization 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 Spectrum Disorder so they are consistent with FASD Best Practices. Canadian Institute of Child Health 5

1. Education - become educated about Fetal

Alcohol 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/practice implementation, and find strengths within the 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 people with 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)? 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 6

Strengths:

Fetal Alcohol Spectrum Disorder? Are there existing community partnerships? Is there flexible programming? Is there organizational and community capacity?

Canadian Institute of Child Health

3. Make the paradigm shift required to view services 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: Wont Bad Refuses to sit still Resisting Trying to get attention Doesnt try To understanding the individual as: Cant Frustrated, challenged Over-stimulated Doesnt get it Needing contact, support 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 their own 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 precede sentencing. 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.

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 and modify them with regards to Fetal Alcohol Spectrum Disorder so they are consistent with FASD 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?

Canadian Institute of Child Health

WITH Hope Respect Understanding Compassion Cooperation

Enhancing FASD Intervention Take a lead role within the community Address root causes of alcohol use in pregnancy, broad determinants of health Build capacity within the community Foundational program characteristics Grass-roots development approach, with community groups & family partnerships Integrated programs with substance use & pregnancy as part of comprehensive service Incorporate cultural, linguistic & social values of the community Flexible approach to meet the specific needs of families Non-judgmental relationship with women Preventing substance use during pregnancy Provide one-to-one support, counselling Use brief screening instruments in supporting relationship Brief interventions in pre-natal settings based on cognitive-behavioural principles which are culturally sensitive Alcohol and drug education programs for pregnant adolescents attending prenatal clinics which are culturally sensitive Accept that women may not be able to stop drinking but only reduce alcohol intake (using the harm reduction model and principles) Incorporate peer support Develop appropriate intervention services for pregnant women that are easily accessible 10 WATCH GET HELP DO WATCH GET HELP DO WATCH GET HELP DO

Help families & individuals living with FASD Provide early identification Advocate for the individual and family with other agencies Provide a stable program environment Support stability at home Provide or facilitate family support

WATCH

GET HELP

DO

WITH Hope Respect Compassion Understanding Cooperation

Best Practices
Prevention Primary Inform about, advocate for, take part in: Multi-component community-wide initiatives to increase awareness of the risks associated with alcohol use during pregnancy Community campaigns/public health prevention messages which include community involvement and promote referrals Life-skills based and multi-component school-community alcohol and drug use prevention programs to prevent or delay 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 alcohol dependence instruments in a supportive milieu with women regarding their alcohol use during pregnancy Physicians use of bio-markers as a follow-up to a written screen Alcohol and drug education programs for pregnant Canadian Institute of Child Health 11 WATCH GET HELP DO

adolescents/women attending prenatal clinics Training for physicians, midwives, elders & helping professionals who work with women who have alcohol and drug problems. (Training must seek to address questions of racism, discrimination, traditional practices regarding childbirth and childrearing.) Prevention Tertiary Inform about, advocate for, refer to, provide: WATCH GET HELP Prenatal care combined with other services, including substance abuse treatment Gender-specific substance abuse treatment Treatment services with a respectful, flexible, culturally appropriate and women-centred approach that is open to intermediary harm reduction goals, based on client circumstances Services with a single point of access addressing a range of social and health needs of pregnant women with alcohol and drug problems (assistance with transportation and child care, educational, vocational training, job placement, housing, obtaining food, income support and help in accessing health care, mental health services) through collaboration between relevant service providers Intensive case management or coordination of services that advocate for women while promoting family planning, access to addiction services, retention in treatment, harm reduction, and building community connections Contingency management approach to reduce cocaine use and increase attention to prenatal care among cocainedependent women Priority access to Methadone Maintenance Therapy for pregnant women DO

12

WITH Hope Respect Compassion Understanding Cooperation

Best Practices
Identification - Diagnosis & Services Inform about, advocate for, refer to: Routine, collaborative screening during prenatal care for FASD Availability of diagnostic services, enhanced through mechanisms such as specialized training, consultation and support, telemedicine and travelling clinics. This needs to include the sensitization of diagnostic tools to the local community context (i.e. psychological testing, standard measurements). Selective screening and a detailed maternal history, in a supportive atmosphere, when particular maternal characteristics are present, e.g., lack of prenatal care, previous unexplained fetal demise, repeated spontaneous abortions, severe mood swings and precipitous labour, or when infant attributes indicate prematurity, unexplained intra-uterine growth retardation, neuro-behavioural abnormalities, urogential anomalies, myocardial infarction and blood flow restriction WATCH GET HELP DO

Intervention Activities - to prevent or reduce WATCH harm associated with primary or secondary disabilities: Inform about, advocate for, refer to, provide: Child care programs for children with low staff-child ratio, following structured routines, and regulation of stimulation Family centred substance abuse treatment, respite care and other support services

GET HELP

DO

Canadian Institute of Child Health

13

WITH

Hope

Respect Compassion

Understanding Cooperation
WATCH GET HELP DO

Infancy and Early Childhood Interventions: Inform about, advocate for, refer to, provide: A professional multidisciplinary team to address the range of complex health needs of affected children (i.e. traditional practitioners, health care education, social service providers) who coordinate their efforts with team members in hospital or clinical settings Longer-term, stable living environment facilitated by familycentred substance abuse treatment, respite care and other support services FASD specific information and training for birth, foster and adoptive parents Child-care programs with low staff-child ratio following structured routines and regulating the amount of stimulation received by the child Services with single point of access for mother with attention to the developmental needs of the child A range of services to support parenting Early educational interventions Training of childcare workers to be knowledgeable and sensitive to the needs of children who are FASD affected and to those of their family Later Childhood Interventions: Inform about, advocate for, refer to, provide: Ongoing support & advocacy for all persons parenting an FASD affected child for various medical, educational and social issues that arise with a particular sensitivity to biological parents who may face issues of stigma, poverty and racism Individualized Education Plans (IEP) tailored to meet the multiple cognitive, academic and psychosocial needs of FASD affected children, involving a range of collaborating professionals Adjusted supportive learning environments by establishing a calm, quiet environment with structure, routine and few distractions, low enrolment classrooms, resource rooms or self

WATCH

GET HELP

DO

14

contained classroom placement; defined specific work and play areas and work spaces that are clear and with little variation. Other elements include: use of explicit instruction and visual aids to reinforce classrooms and activities; repetition and hands-on learning; modelling of desired behaviours. School content should generally involve an individualized curriculum with a focus on functional skills for independent living, e.g. problem solving, arithmetic, social interacting, and decision-making; developing realistic expectations of the child; behaviour management strategies that promote independence; adaptive living, social and communication skills; and role playing to teach logical consequences and appropriate behaviour. WITH

Hope

Respect Compassion

Understanding Cooperation
WATCH GET HELP DO

Adolescent Interventions: Inform about, advocate for, refer to, provide: Assistance with basic socialization & communication skills Tailored vocational counselling and employment services; money management training, sexuality and birth control education, and alcohol and drug use education Tailored programming for those who become involved with substance abuse treatment, mental health or the correctional systems Appropriate services and mutual support groups for families caring for those affected by FASD, that extend over the lifespan of the person Cognitive-behavioural and behavioural family therapies for those helping individuals with intellectual deficits to learn and maintain various basic living skills Adult Interventions Inform about, advocate for, refer to, provide: Continuing advocacy and/or case management to help FASD affected individuals to deal with the many challenges of adult life Modified substance abuse treatment programs, employment training, mental health therapy, correctional services Canadian Institute of Child Health

WATCH

GET HELP

DO

15

16