Diverse Partners Collaborating to Build FASD Community Capacity: The Simcoe Experience

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Rebecca Hall
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1 Diverse Partners Collaborating to Build FASD Community Capacity: The Simcoe Experience Charlotte Fergusson Tonya Millsap Cathy Bidwell Sally Seabrook

2 Objectives Basic information on Fetal Alcohol Spectrum Disorder (FASD) Intervention framework implemented in Simcoe County FASD Community Structure in Simcoe County Evaluation findings of Simcoe County s implementation of the intervention framework

3 Basic information on Fetal Alcohol Spectrum Disorder (FASD)

4 What is Fetal Alcohol Spectrum Disorder (FASD)? FASD is a descriptive term that encompasses the range of characteristics associated with prenatal exposure to alcohol. It affects the brain which affects behaviour. FAS Fetal Alcohol Syndrome -constellation facial features -growth impairment -CNS in 3 areas -Alcohol exposure pfas Partial Fetal Alcohol Syndrome -some facial features -CNS in 3 areas -alcohol exposure ARND Alcohol Related Neurodevelopmental Disorder -CNS in 3 areas -alcohol exposure

5 How Long Has This Been an Issue? 1700 s Gin Epidemic 1968 Lemoine concludes similar facial features in a study of children born with prenatal alcohol exposure Smith & Jones establish diagnostic criteria for the medical diagnosis of FAS 2004 FASD term introduced and widely adopted

6 Why is Alcohol so Harmful? A teratogen is a toxin that interferes with the normal development of a fetus body and/or brain. Alcohol is a teratogen. Therefore alcohol interferes with the normal development of a fetus body and/or brain.

7 Contributing Factors to Alcohol Impact Timing/duration of the alcohol exposure Maternal Factors/ Nutrition Genetics Levels of exposure Metabolism Fetal Factors Adapted from D. Debolt in FASD: Considerations for Practice.

8 What Actually Happens? Alcohol freely crosses the placenta Maternal concentration = Fetal concentration Fetus immature metabolic system processes alcohol more slowly

9 Fetal Development

10 "Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus." [Institute of Medicine 1996 Report to Congress]

Alcohol Effects Every Area of the Brain Brain stem: Regulation of state Limbic system: Attention Cerebellum: Motor skills, balance, coordination Frontal lobes: Executive function & reasoning Left

11 Alcohol Effects Every Area of the Brain Brain stem: Regulation of state Limbic system: Attention Cerebellum: Motor skills, balance, coordination Frontal lobes: Executive function & reasoning Left temporal lobe: Speech and Language Multiple locations: Learning, Memory & cognition Whole brain: Adaptive skills & application Dr. Sterling Clarren, MD, FAAP, The Profile of Fetal Alcohol Spectrum Disorder, March 2011

12 The Iceberg Effect FAS & pfas 1-3/1000 Visible ARND 9/1000 invisible / hidden FASD in general population: 1/100 or 1% Rates per Public Health Agency of Canada, 2005

13 FASD: Key Points 1. Nearly 100% under-diagnosed 2. FASD with no facial features are at greatest risk 3. 80% of all people drink 4. Binge drinking is most damaging % of all pregnancies are unplanned % of all pregnancies at risk (Jones) 7. Average IQ FAS=79; range =

14 Importance of Identification 1. Pivotal 2. Identifies a brain-based physical condition 3. Reframes the meaning of behaviours: From won t to can t 4. Redefines the problem 5. Redefines what we do 6. Key for prevention

15 FASD is a Brain-Based Physical Disability 1. Alcohol, drugs and trauma kill cells, including cells in the brain: These are physical changes 2. Behaviours are usually the only symptoms 3. FASD is an invisible physical disability with behavioural symptoms

16 Primary Disabilities Behavioural symptoms of brain structure, function and dysfunction, strengths and challenges. Developmental Level of Function Learning and Memory Cognition Sensory Systems Executive Function Abstraction Language and Communication Processing Pace Strengths

17 Secondary Symptoms Normal defensive behaviours develop over time when there is a poor fit with person and environment Anger Frustration Exhaustion Anxiety Avoidance Mental Health Issues Justice involvement Disrupted school experiences

18 Concepts IF FASD is a physical, brain based disability (i.e. neuro-atypical) THEN Supports, strategies must honour the neuro-atypical

19 Intervention Framework Implemented in Simcoe County

20 Simcoe County FASD Initiative Community wide response to FASD Conceptual consistency and common language across sectors No additional funding Flexible

21 Neurobehavioural Accommodations Model (NAM) Developed by Diane Malbin, M.S.W. FASCETS Inc. 2 tools we use: FASCETS Neurobehavioural Prescreening Tool NAM Grid

22 NAM: From the Service Delivery Level When the two tools are used as intended the process facilitates; Enhanced supports Common language and common understanding of child Child is understood in context of their brain based disorder All participants regardless of agency, discipline etc, working within the same conceptual framework.

23 Step 1: Build a Bring together everyone who is involved in the child s life; parents, teacher, EA s, respite workers, grandparents, family friends, social workers, behavioural workers, developmental service workers. FASD Education Build a common understanding among team members, re: individual with FASD

24 Step 2: FASCETS Neurobehavioural Prescreening Tool Not a diagnostic tool...exploratory Team members individually complete the prescreening tool Group discussion, including examples and stories Welcome different opinions, because everyone functions differently in different environments

25 FASCETS Neurobehavioural Prescreening Tool Several Sections; Primary characteristics Strengths Secondary behavioural symptoms Tertiary characteristics Common associated diagnoses

26 FASCETS Neurobehavioural Prescreening Tool No scoring key If there are mostly 4 s and 5 s in a section that is a problem area If there are mostly 1 s and 2 s in a section that is an area of strength Always ensure strength section is complete Use the prescreening tool when completing the grid

27 Step 3: Accommodations Grid Can be used; Proactively, when a problem area is predicted in advance Reactively, address chronic or ongoing issues Evaluate Success

28 Step 3: Accommodations Grid Process is crucial to success Outcomes include; Suggested accommodations Team of supports working collaboratively Continued highlighting of the child s brain deficits and strengths The child s behaviour is always understood in the context of a brain based disorder.

29 Accommodations Grid - Exercise Setting / tasks What the brain has to do Primary Brain-based Symptoms Secondary symptoms Strengths Accommodations Be home on time

30 Step 3: Accommodations Grid The Team continues to develop accommodations utilizing the two tools Review past grid s to see if the accommodations are working, problem solve as a team if they are not The grid builds a record of accommodations made and also why those specific accommodations were tried

31 Accommodations Grid School Example Setting / tasks What the brain has to do Primary Brain-based Symptoms Secondary symptoms Strengths Accommodations Listen Fast auditory pace Slow auditory pace Anxiety frustration Visual learner Slow down Use visuals Be ageappropriate Develop on time Dysmaturity Isolation depression Willing, relational Adjust expectations: stretch toddler Sit and learn, paper and pencil Ability to abstract Concrete, difficulty with abstraction Anger, frustration, avoidance Learns by doing Hands-on Kinesthetic

32 FASD Community Structure in Simcoe County

33 we're better together Ministry of Children and Youth Services Youth Justice Georgian Bay Native Women s Association Barrie Morton Youth Services Map courtesy: G I S Department County of Simcoe

34 Targeted Levels of Participation Family Systems Front Line & Supervisors Management Systemic Change

35 Enhancing Existing Services Existing Planning Processes Case Management Service Coordination WrapAround Neurobehavioual Principles Existing Programs and Services Universal Clinical Residential Child Welfare Complex Special Needs

37 Simcoe County FASD Leads Group

38 Training Resources

39 Collaborative Development of Implementation Protocol

40 Materials Translated Cultural Partnerships Simcoe County FASD Logic Model Curriculum Kit & resources for high schools Resources for physicians Training and resources for service providers interacting with at risk families and pregnant women Presentation to municipal and other government/non government groups Newspaper articles Support within NAM process Brochures Resource library at Common Roof Training Manual Online Resources Establishment of virtual diagnostic model Presentations at conferences Publications 25% Tools, mechanism and process to evaluate Simcoe County FASD interventions and supports in number of physicians participating in FASD training local and provincial funding, resources and acceptance of FASD intensity of secondary behaviours for children/youth with FASD specificity of treatment programs psychosocial functioning FASD services for families incidence of FASD in Simcoe County use of integrated intervention approach use of FASD curriculum in high schools information in media re FASD in # of elected officials and/or community leaders participate in FASD sessions community capacity implementing neurobehavioural common understanding of accommodation/differential instruction in schools Prevalence of FASD in # of people acknowledging the importance of Characteristics of FASD evaluation Limitations of those affected with FASD FASDay Awareness Materials How those affected think / behave Screening tools common understanding of effective awareness of services 25% for families interventions 25% awareness of politicians and service sector/community awareness of the effects of alcohol use leaders re FASD during pregnancy # of physicians counseling patients about alcohol use contribution to FASD evidence based during pregnancy practice use of common language early accurate identification of FASD in Simcoe County stability in all environments # of unplanned moves Education, information and support for families through existing support groups family confidence, competence and feeling of support in raising children affected with FASD Train the trainer FASD Leads Consultation with Diane Malbin Linkages with FASD Stakeholders for Ontario as forum for political awareness 25% Individual will engage in personally meaningful activities and contribute to society leadership among FASD working groups to sustain capacity in all project areas family well being and the voice of families Draft Version January 2010

41 Training and Awareness

42 Case Presentations

43 FASD Resources & Community Lending Library

44 Video

45 Evaluation Findings of Simcoe County s Implementation of the Intervention Framework

46 What is Evaluation? Evaluation is the systematic application of scientific methods to assess the design, implementation, improvement or outcomes of a program (Rossi & Freeman, 1993; Short, Hennessy, & Campbell, 1996).

47 Purpose The purpose of this evaluation was to determine whether utilization of NAM in Simcoe County would result in improved outcomes for caregivers, service providers and youth with FASD.

48 How Does NAM Impact Caregivers Supporting Youth with FASD? Measures: Knowledge Transfer Measure Self-Efficacy for Parenting Tasks Index (SEPTI) Family Crisis Oriented Personal Scales (F-COPES) Parent Stress Index-Short Form (PSI-SF)

49 Too often, adults lack information about FASD and find themselves in cycles of increasing frustration, trying harder to change symptoms rather than trying differently (Malbin, 2002). The accommodations model incorporates an educational component to develop a common understanding of the diagnosis.

50 Caregiver Knowledge Transfer Community Sample PRE POST

51 120 Caregiver Stress (PSI) Clinician Sample Parental Distress Parent Child Dysfunctional Interaction Difficult Child Total Stress

52 120 Caregiver Stress (PSI) Community Sample Parental Distress Parent Child Dysfunctional Interaction Difficult Child Total Stress

53 How Does NAM Impact Service Providers Supporting Youth with FASD? Measures: Service Provider Confidence Number of Service Providers Implementing NAM

54 Number of Service Providers using NAM Preparing to Implement NAM Implementing NAM

55 How Does NAM Impact Youth with FASD? Measures: FASCETS Neurobehavioural Screen Tool Child Behaviour Checklist (CBCL) Scales of Independent Behaviour (SIB-R) Short Form

56 70 FASCETS Screening Tool Clinician Sample PRE POST

57 70 FASCETS Screen Tool Community Sample PRE POST

58 80 Scales of Independent Behaviour - Revised (SIBR) Support Score Clinician Sample PRE POST

59 In Summary... Limitations Lessons learned Future directions

61 SAMPLE SAMPLE SAMPLE FASCETS neurobehavioural prescreening tool Primary characteristics are learning, developmental, and/or physical responses to the environment and other behavioural symptoms that have been associated with differences in brain structure and function. Scale: 0=Not assessed 1=No 2=Rarely 3=Sometimes 4=Usually 5=Always 1. Developmental level of functioning: Social skills and Adaptive Behaviour Social behaviours are like a person half their age (developmental dysmaturity) 2. Sensory systems, sensory-motor integration Doesn t seem to understand personal space or boundaries 3. Nutrition Doesn t seem to know when full, when to stop eating 4. Language and Communication Talks better than understands; e.g. may be off topic in conversation 5. Processing Pace Listens slowly; often asks What? or says I don t know 6. Learning and Memory Inconsistent performance: On and off days, A on Monday, F on Wednesday 7. Abstract thinking Difficulty predicting outcomes, seeing what s coming next 8. Executive functioning Impulsive, difficulty inhibiting responses 9. Strengths in some areas may mask underlying challenges. Interests and talents Artistic Friendly, outgoing Determined Wants to please Good with younger children Learning strengths Relational; learns best 1:1, in relationship Visual learner; learns by being shown better than by being told Auditory learner; reads out loud, repeats things Hands-on, concrete, experiential; learns by doing Kinesthetic; needs to hear, see, touch to learn Other strengths and interests Secondary behavioural symptoms are normal defensive behaviours that develop over time as a result of chronic frustration, trauma and/or failure, reflecting a "poor fit" between the needs of the person and his or her environment, these are preventable Gets tired, easily exhausted, may show as over activity, irritability, or tantrums Easily manipulated and set up by others Frustrated, short fuse, angry Tertiary characteristics are the net effect of chronic failure and frustration and are also preventable Delinquent; criminal involvement Runs away FASCETS, Inc. Questions? Please contact FASCETS

62 SAMPLE SAMPLE SAMPLE FASCETS neurobehavioural prescreening tool FASCETS, Inc. Questions? Please contact FASCETS

73 FASD Websites There are many sites and much information on Fetal Alcohol Spectrum Disorder available on the Web. While we cannot monitor the contents of these sites, they have been known to provide credible information in the past. They listed in no particular order. It is suggested that, before ordering any resources from online sites, check to see if they are available free of charge through a government service. FASD Ontario Network of Expertise Public Health Agency of Canada FASD File Toronto FASD Coordinating Committee Resource Guide. POPFASD is a Ministry of Education in British Columbia program. It provides services through the website so that teachers, parents, students and others increase their understanding of FASD. Through consultation with teachers and other experts in the field of FASD, this website is a vehicle for providing information about the effects of FASD on student learning and behaviour. We share current research, ideas, strategies, training and resources in order to build capacity in school districts for students with FASD and their teachers. FASD Connections is committed to building a community in which adolescents and adults with Fetal Alcohol Spectrum Disorder are included and encouraged and where their desire and potential is supported; where the experience of families is understood, acknowledged, and accepted; and where systems are equipped to respond in an informed, compassionate and responsible way. FASD Support Groups and mail lists are available on this site. FASworld Canada is a pro-active, non-profit organization dedicated to the significant reduction of the incidence of Fetal Alcohol Spectrum Disorders (FASD). FASlink serves more than 400,000 people annually through this website and the Discussion Forum. The FASlink Archives provide access to more than 130,000 documents on FASD related issues. Alcohol Birth Injury (FAS/FAE) Resource Site Alberta Education has teaching resources available for both prevention of FASD and teaching students with FASD. The site is designed as a resource for justice system professionals and others who are grappling to understand FASD with case law, legal resources, background information, and practical tips close at hand. 1

74 Ministry of Education in British Columbia: Teaching Students with Fetal Alcohol Syndrome / Effects. A Resource Guide for Teachers. Fetal Alcohol and Drug Unit at University of Washington. Resources and publications available. gies for stingals with FASD The Hospital for Sick Children is a health care, teaching and research centre dedicated exclusively to children; affiliated with the University of Toronto. This site offers publications, resources and links for parents and professionals related to prenatal health and alcohol / drug use. Victorian Order of Nurses publication Let s Talk FASD is available to provide strategies for living and working with individuals with FASD. Comprehensive listing of manuals, books, publication and resources that are available for purchase through FAS Bookshelf. SAMHSA Fetal Alcohol Spectrum Disorders (FASD) Center for Excellence Web site. The FASD Center is a Federal initiative devoted to preventing and treating FASD. This Web site provides information and resources about FASD. We also provide materials you can use to raise awareness about FASD. Your information resource on Fetal Alcohol Spectrum Disorder (FASD) and online connection to The Asante Centre for Fetal Alcohol Syndrome. Our website is dedicated to providing up-to-date resources in the field of FASD. Fetal Alcohol Syndrome Consultation, Education and Training Services. Links, resources and publications are available related to a Neurobehavioural Accommodations Model approach to working with individuals and families with FASD and other complex neurobehavioural conditions. Educational resources for special needs. Visual cue cards and schedule boards available, limited variety for free download. David Boulding is a lawyer in western Canada. His lessons learned about FASD are provided in articles available on this site. Information about FASD in the justice system is the focus. Ontario Federation of Indian Friendship Centres. FASD Toolkit is available for free download. Canadian Association of Paediatric Health Centres Knowledge Exchange Network and National FASD Screening Toolkit 2

75 Accommodations Grid Requirements: Environment, Institution or Setting Cognitive or Developmental Requirements for Success Primary Characteristic FASD Secondary Behaviours FASD Strengths Accommodations

FASD Fetal Alcohol Spectrum Disorder

FAS pfas ARND Fetal Alcohol Syndrome partial Fetal Alcohol Syndrome Alcohol Related Neurodevelopment Disorder FASD Fetal Alcohol Spectrum Disorder ARBD Alcohol Related Birth Defects #1 cause of birth defects