The Prevalence of FASD in a Maritime First Nation Community

1
The Prevalence of FASD in a Maritime First Nation
Community

• Principal Researcher
• Lori Vitale Cox Ph.D
• Diagnosing Physician
• Dr. Michael Dickenson

2
Background

• Is FASD a Serious Health Issue in Canada?
• Still No Normative National Data
• Incidence U.S. FAS 1-3 per 1000 (1997)
• FASD 9-10 per 1000 (2001)

3
Prevalence Studies in Canadian First Nation
Communities

• Northern BC FN 190/1000
• Robinson et al 1987
• Northern Manitoba FN 95/1000
• Chudley et al 1997
• No Prevalence Studies in First Nations
  Communities in Eastern Canada

4
Is FASD Health Issue in FN Communities in
Maritimes?

• Present Study Based on Data Collected in an
  Aboriginal Community in the Maritime Region of
  Eastern Canada
• From January 1998 Until June of 1999
• Elementary School Population Grades 1-8
• N187

5
Introduction

• Community-2500 People, 750 Families, 50 School
  Age or Younger
• Band Operated Elementary School K-4 to Grade 8
• 267 children in Community School
• 187 children Grade 1-Grade 8

6
School Population 1997-8

• Grade Number of Children N187
• Grade 1 27
• Grade 2 28
• Grade 3 22
• Grade 4 29
• Grade 5 32
• Grade 6 17
• Grade 7 19
• Grade 8 13

7
School and Community Problems

• Community Leaders Concerned
• High Rates of Youth Suicide
• Behavior and Learning Problems of Youth in and
  Out of School
• High Rates Delinquency, Alcohol and Inhalant Use
• School Attrition 75 Before Gr. 12-Many Before
  Gr. 8

8
1997-8 Series of Meetings

• Parent and Service Professional Meetings
• Working Committee Formed
• Principal
• Coordinator Educational Psychology
• Director Mental Health
• Acting Director Education
• Decision--Needs Assessment Research

9
Research-Community Based

• Driven by Community Members and Leaders
• FN Ethical Principles Discussed First By Working
  Group-Later Wellness Committee
• Respect Community Members Relationship to
  Research
• Ensure Community Involvement
• Ensure Sharing of Information
• Use Knowledge To Help Community Members

10
Community Based Research

• Results Presented to Band Council, Wellness
  Committee and General Public
• Knowledge Gained Used To Improve Educational and
  Community System

11
Objective of Research

• Determine Un-Met Needs (Physical, Social,
  Emotional, Spiritual) Interfering With Behavior
  and Learning
• Suspicion FASD or Other Conditions Might Be
  Contributing Factors
• Provide Basis for Appropriate Intervention
• Determine Funding Requirements/Seek Appropriate
  Funding

12
Parents Perceptions of Problems

• 1998 Survey of Parents of School Children
• 75 Surveys Handed Out-56 Returned
• 75 Response Rate 21 All School Families
• Question What of School Age Children Have
  Problems Related to Alcohol Use in the
  Community--FAS, Family Violence, Neglect, Sexual
  and Physical Abuse
• Response 71 of Children Had Problems Related
  Family Alcohol Use

13
Method- Active Case Finding

• Children Selected for Assessment Through an
  Active Screening Process
• Identify Those More Likely Than Others in the
  Sample Population to Be Affected
• Lack Appropriate Screening Tools For FASD

14
Method

• Procedures Used In Diagnosing Children
• Medicine Wheel Tools Developed for Screening
• Medicine Wheel Student Index
• Medicine Wheel Developmental History
• Educational Psychology Assessment
• Medical Examination-Diagnosis

15
Medicine Wheel Index Screening

• MW Student Index Handed Out to Each of 22
  Classroom Teachers
• Teacher Perception Level of Childrens Particular
  Needs in 4 Domains
• Cognitive
• Social
• Emotional
• Physical

16
MW Index Screening Domains

• Cognitive
• Academic (Numeracy, Literacy, Social
  Communication, General Ability)
• Neurobehavioral (Short Attention Span,
  Hyperactivity, Impulsivity-Self-Regulation,
  Memory, Focus, Other)
• Social
• Family Problems (Violence, Alcohol-Drug Use,
  Students Drug-Alcohol Use, Neglect, Physical
  Abuse, Sexual Abuse, Other)
• Conduct Problems (Swearing, Fighting-Pushing, Out
  of Seat, Rudeness, Work Refusal, Bullying,
  Lateness, Attendance, Other)

17
MW Index Screening Domains

• Emotional
• Aggressive, Timid, Depressed-sad, withdrawn,
  Anxious, Lies-steals- destroys things,
  Angry/Defiant, Talks of Suicide, Other
• Physical
• Fine Motor Skills, Gross Motor Skills,
  Coordination, Vision, Hearing, Weight Problem,
  Speech (articulation), Other

18
MW Index Screening
N187 Number Children Percentage Children
Problems 120 64
Average 46 25
Above Average 21 11

Problems Students Identified As Having Problems
In One or More Domains Severe Enough To Interfere
With Their Learning
19
MW Index Screening
Number Percentage of Total
Severe Problems In Multiple Domains 65 35
Severe Problems In Multiple Cognitive- Behavioral Domains 55 29
20
Medicine Wheel Developmental History Tool- Parent
Screening

• Semi-Structured Interview
• Full History of the Children in Terms of the
  Physical, Social, Emotional and
  Mental-Developmental Domains
• Details of Pre-peri-post Natal Periods.
• Specific Questions About the Use of Alcohol and
  Drugs Including Nicotine

21
Parent Screening

• Questions About Other Factors-Co-Morbidities
• Multiple Placements
• Grief-Recent Suicide of Death in Family
• History of Physical-Sexual Abuse
• Linguistic Background
• Genetic History of Family In Terms of LD
• Medical History-Hospitalizations, Falls, Loss of
  Consciousness, Convulsions etc.

22
Layers of Trauma

• Like Peeling an Onion-Layers of Trauma Affecting
  Leaning and Behavior
• Affecting Childrens Ability to Learn How to
  Learn
• From The Beginning The Purpose Wasnt Just To
  Find FASD But to Help Change Outcome For
  Affected Children

23
Screening Tools Developed In Field

• Basic--Like Net or Rake or Shovel
• Developed For Specific Population and Purpose
• Proven to Be Effective
• Still In Use In Community
• Simple to Use
• Cost Effective, Practical

24
Screening Tools Developed

• Medicine Wheel Index-Teacher Screen--15-25
  Minutes
• Medicine Wheel Devt History-Parent Screen-More
  Time Consuming
• Minimum 45 Minutes-Natural History of Child and
  Family
• Collaborative Relationship With Parents Important
  for Full Disclosure
• Less Time Consuming Costly Than Full Ed Psych
  Assessment and Diagnosis For All Children
  Identified By MW Index-Teacher Screen

25
Ed-Psychology Assessment

• Battery of Tests in Various Areas
• Ability-Weschler Scales, WISC-R, Ravens
  Matrices, Goodenaugh Draw-a-Figure
• Language- Peabody Picture Vocabulary Test-PPVT,
  Guided Reading Levels
• Adaptive Behavior- Vineland Adaptive Behavior
  Scales
• Visual Motor Skills- Bender-Gestalt Visual Motor
  Integration
• Achievement-Wide Range Achievement Test-WRAT
• Attention and Behavior- Achenbach Child Behavior
  Check-List-Teacher Version-CBCL-T, Conners Parent
  and Teacher Short-Form-Conners PRS/TRS

26
Medical Examination-Diagnosis

• 2 Diagnostic Clinics-June 1998- May 1999.
• Dr. Mike Dickinson, Pediatrician
• Consent Forms Signed By The Parents
• CHN Nurses Record Height, Weight, Vision, Hearing
• Researcher Prepared Case Report
• Teachers Report of Present Problems
• Psycho-Ed Test Data
• Developmental, Medical, Social, Pregnancy History
• Babies Birth-Weight, Moms Age at Birth,
  Pre-Natal Exposures Etc.

27
Diagnostic Clinics

• Measured Palpebral Fissures, Head Circumference,
  Evaluated Philtrum-Upper Lip
• Checked for Other Minor Anomalies-Flattening of
  the Maxillary Area, Palmar Creases Etc
• FAS Diagnosed If Clear Evidence of Growth
  Retardation, Small Palpebral Fissure Length,
  Changes in the Phyltrum/thin Upper Lip,
  Confirmation of Exposure to Alcohol During
  Gestation , and Brain Dysfunction in Terms of
  Developmental Delays, Intellectual Impairment, or
  Neuro-behavioral Abnormalities.

28
Diagnosis

• FAE (PFAS) When Disclosure of Alcohol Consumption
  As Well As Evidence of One or Two of the Physical
  Anomalies And/or Growth Retardation Together With
  the CNS Dysfunction.
• ARND As Recommended by IOM for Children Exposed
  to Alcohol in Utero and With Clear Evidence of
  Brain Dysfunction Not Caused by History or
  Genetics

29
Results-Diagnosable Medical Conditions
30
Prevalence Rates of FASD

• FAS 3.74 37/1000
• PFAS 9.09 90/1000
• ARND 6.42 64/1000
• TOTAL FASD 19.25 193/1000

31
Discussion

• All Mothers Who Disclosed Alcohol Use Also Smoked
  Nicotine Cigarettes
• All Mothers Who Drank, Drank In Binge Pattern
• Most During The First Trimester Before They Knew
  They Were Pregnant
• Most Could Not Remember Details of Quantities I
  Drank A Friday And Saturday Night6-12 Beer A
  Night.. No More Than A 24Enough To Feel Good

32
Discussion

• Actual Prevalence Rates Likely Higher 19-20
• 3/10 Children Diagnosed As AD/HD Had Confirmed
  Exposure to Alcohol in Utero
• Boy AD/HD Fraternal Twin Girl Diagnosed ARND
• 2/10 Exposed to Cannabis
• 5/10 Had Suspected-Unconfirmed Exposure
• Disclosure Continues to Be Difficult for Mothers
  Because Social Implications for Themselves If
  Children Found to Have an Alcohol Related
  Disability.

33
Discussion

• Also Canadian Standard Norms for Birth Weight and
  Head Size Significantly Lower Than in Aboriginal
  Communities
• Implications for Diagnosis of FAS Because Growth
  Retardation Is Key Area in Diagnosis
• May Be More Children in Sample Population With
  FAS Than Reported-These Children May Have Been
  Inaccurately Classified FAE-PFAS
• Health Center Data Indicates Pre-Natal Exposures
  To Alcohol and/or Drugs Rising
• In 2006-60 of Babies-Multiple
  Exposures-(Increase in Opiates)

34
Conclusion

• Unexpected High Prevalence FASD
• High Rate Cannot Be Generalized To The Larger
  Population
• Actual Incidence May Be Higher Than Some
  Incidence Researchers Suggest
• Results Challenge Research Assumption Abel(1994)

35
Abels Incidence Data

• Abel Assumes FAS Readily Recognized and Diagnosed
  in Hospitals at Birth or Soon After
• Using Data From a Number of Epidemiological
  Studies Of Obstetric Hospital Populations
  Worldwide
• Abel (1999) Estimated Incidence at Less Than
  1/1000

36
Abels Incidence Estimates

• Abel States ..there is little evidence to
  support (the) assumption (that) FAS is
  underdiagnosed. as a result of increased
  awareness of FAS among health care professionals,
  the possibility of FAS going unrecognized shortly
  after live birth seems unlikely. (1994)

37
Incidence Research

• The Fallacy of This Argument Is Obvious From the
  High Number of Undiagnosed Individuals in
  Research Studies
• For Instance Byrd (2004) Looks at Medical Records
  Population of 3,080,904 in US Correction
  System--only 1 Diagnosed Case of FAS
• Incidence Should Be From 1540-28,036 Even Using
  Conservative Estimates Such As Abels
• One Could Argue This Population Too Old to Have
  Been Identified at Birth

38
But FASD Still Invisible To Many Health
Professionals

• Present Study Children Born In Late 1980s 1990s
• All Were Born at Large Regional Hospital
  Center-Less Than Hour Away By Car On Good Road
• Mothers Received Pre-Natal Services-Many At
  Hospital
• Not One of These Cases Diagnosed At Birth,
  Shortly After, Or For Years Until This Study

39
Low Incidence Estimates

• Abels Low Incidence Estimates Depend Upon Data
  That May Not Be At All Reliable
• Physicians Still Un-trained--Unfamiliar With FASD
  Diagnosis
• FASD Multi-disciplinary Diagnostic Teams Scarce
• Diagnosis Of Most Of The Spectrum Of FASD Is
  Difficult At Birth

40
Good Incidence Data Essential

• Based On Low Incidence Estimates Armstrong (1998)
  and Abel and Armstrong (1999) Conclude Concerns
  With FASD Are Socially Constructed Panicand
  Moral Crusade That Has More to Do With Getting
  Research Funds Than Scientific Findings
• This Is Dangerous For Prevention--We Need Good
  Incidence Data ASAP

41

• This Study Also Indicates Problem With FASD
  Diagnosis In General Population-They Receive
  Services at Same Hospital Center
• Using Incidence Estimate 9-10/10007-8,000 People
  in New Brunswick FASD
• Most Undiagnosed-Still No Hospital
  Multidisciplinary Diagnostic Team In Maritimes
• Proper Diagnosis of Fetal Alcohol Spectrum
  Disorders Is Not Accessible in Much of Eastern
  Canada

42

• FASD Is Not Just an Aboriginal Problem
• Problem Anywhere That Women of Childbearing Age
  Drink--One of the Groups at Highest Risk for the
  Disability Are Young University Women
• High Prevalence Rates in Study Can Not Be
  Generalized to Larger Population but They Point
  up Serious Flaw in Medical Health Delivery System
  in Region in Terms of FASD Diagnosis, Prevention
  Intervention Services
• Flaw That Has Serious Consequences for
  Individuals Who Suffer Disability, for Families
  Communities

43

• Individuals With FASD Perceived as Being Problems
  
• Instead of Being Perceived of As Having A Problem

44
Secondary Problems

• 90 Individuals Develop Secondary
  Problems-Disabilities--School Problems, Mental
  Health Disorders, Trouble With the Law,
  Addictions, Etc

45
Spiralling Problems-RCMP Stats
RCMP Stats Maritime First Nation Community Maritime First Nation Community Comparison Community Comparison Community
Year 1998 1999 1998 1999
Sex Assault 19 14 3 4
Assault 237 220 32 40
Property Damage 117 117 9 10
Spousal Assault 18 40 2 4
Total Mental Health Act 110 107 9 5
Suicide/Attempted Suicide 56 100 5 3

46
Spiralling Problems

• Is FASD Fuelling this Spiral?
• Keeping People From Achieving Health and
  Well-Being.
• What Can We Do To Change This?

47
Diagnosis Means Responsibility
48
Wellness Objectives-Diagnosis, Intervention,
Prevention

• Prevent Secondary Problems--Provide Interventions
  and Support at School and Home
• Prevent Further Incidence
• Provide Regular Diagnostic Services

49
Protective Factors

• Early Diagnosis
• Stable Home Life
• Supportive Interventions School

50
School Initiative

• Implemented-1998-9 Elementary School
• Educational Funding From INAC-Indian and Northern
  Affairs
• Change Outcome by Providing Supportive School
  Environment For Youth With FASD and Other
  Developmental Disorders
• To Develop Childrens Gifts as Well as Their
  Academic Skills
• To Create A Culturally Sensitive Model of
  Intervention

51
Medicine Wheel Approach-1998-2007

• Hot Lunch Program
• Small Class Size 12-15 Children
• Children With FASD and Other Conditions
  Mainstreamed
• Individual Support Space Time
• From 1/2 Hour To 1/2 Day
• Resource Room Program
• Developmental Playroom
• Miqmaw Cultural Program

52
Medicine Wheel Approach-1998-2007

• Teacher Assistants In Some Classes
• Literacy Initiative
• Speech Therapy Program
• Youth-At-Risk Program
• Youth Mentors-Mother Mentors
• Guitar, Drumming, Dancing
• Behaviour Mentors
• Traditional Health And Wellness Initiative

53
Friends

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for online presentation
54
Interventions Help Everyone

• End of 1996-7 School Year Before Interventions
• 80 Students Grades 1-3 Read Below Grade Level
• End of 1999-2006 School Years After
• 70- 90 of Students Grades 1-3 Read On or Above
  Grade Level
• Children in This Band School Now Perform On Par
  On Provincial Exams
• External Evaluation Now Rates The School Average
  or Above Average In All Areas
• Children With FASD Now Attending and Graduating HS

55
Nogomag Healing Lodge Project

• Began Spring 2002
• Funding From Youth Justice, Homelessness
  Initiative And AHRD
• Educational Alternative for Youth-at-Risk and
  Their Mothers with History of
• Pre-natal Exposure to Alcohol
• School Problems
• Trouble with the Law

56
Nogemag

• MiMaq Concept Means All My Relations
• Restore Relationship and Connections
• Connections To Self, Family, Community
• Connection To Elders--Regeneration of Community,
  Family Culture
• Through Supportive Daily Ritual Like Talking
  Circles, Sweats, Smudging
• Baisis of Medicine Wheel Approach Is Relationship
  of Individual To Whole System

57
4 Rs Of FASD Educational Interventions
Relationship
Respect Brain Differences
Routine/Ritual
Repetition Rehersal
58
Nogomag Healing Lodge

• Outside Evaluation After Two Years of
  Intervention
• All Youth Involved Stayed Out Of Trouble
• 4 Of 5 School Age Youth (13-15) Were Back In
  Regular School--3 Full Time, 1 Part Time.
• 4 Older Youth-17-21 Doing GED--Working
• 3 Birth Mothers In Skill-Training At Lodge-Doing
  GED-2 Have Their Youth With FASD Back From Foster
  Care, 1 Hired As Permanent Staff At School
• Youth Crime Rate In Community Decreased By
  Approximately 40 Since Implementation of 1998
  Educational Interventions

59
What We Learned
60

• If Youve Told (Someone) A Thousand Times And He
  Still Doesnt Understand Then It is Not (He) Who
  Is The Slow Learner
• Walter Barbee

61
Other Developments-Research

• Development of Medicine Wheel Tools and Model To
  Replicate In First Nation Communities and Small
  Community Schools-Crime Prevention Funding
• DVD To Demonstrate Model
• Provincial Judges Training
• Survey Research of Judges and Crowns Perceptions
  and Needs-2006

62
Eastern Door Diagnostic Center

• Multidisciplinary Diagnostic Team for FASD and
  Other Developmental Conditions
• First Diagnostic Team in Maritimes
• 2 Diagnosis Month
• Family Support Worker After Diagnosis-6 Months
• Offering Pre-natal Out-Reach-High Risk Moms
• Developed Medicine Wheel Difference Game Cards
  For Mentoring Program

63
Other Work

• Training Mentors From Other Communities in Use of
  Difference Game Cards This Winter-Funding FNIHB
• Eastern Door Integration Proposal
• To Create Model of Integrated Services
• Build FASD Capacity in Surrounding First Nations
  in RHO
• Workshop For Community Service Professionals from
  Labrador-Nain, Hopedale Sheshashe-In Medicine
  Wheel Tools and Interventions

64
NB Provincial FASD Funding

• Late 2006 Met With CEO of Beausejour RHA Who
  Supports Diagnostic Team In First Nation
• Made Presentation To Deputy Minister Addictions
  and Mental Health-Dr. Nicole Le Blanc
• Formed Ad Hoc FASD Advisory Committee Purpose
  To Hire Coordinator To Begin Process of
  Developing Provincial Diagnostic, Prevention and
  Intervention Capacity
• Submitted Letter of Intent-He Presented to Other
  Ministers

65
NB Strategy

• In Feb 2007- 100,000 Allocated For Coordinator
• Hired Coordinator in Spring
• Formed Provincial Working Group
• ObjectiveTo Develop Provincial Strategy-That
  Will Encompass Diagnosis, Prevention and
  Intervention-Family Support

66
NB FASD Developments

• FASD Now Included As Part of Provincial Addiction
  Strategy
• Province Also Submitted Proposal To Get Funding
  For Training of Health Professionals
• Holding a Think Tank Sept. 26th In Moncton of
  NGOs From Around the Province

67

• We Still Have A Long Way To Go
• Physicians in NB Still Telling Woman It is OK To
  Have a Few Drinks
• But There Is Finally An Opening In the Woods and
  A Path Emerging
• Affected Individuals and Families In NB Will Be
  Soon Be Able to Get Some Help On Their Journey

68

Every Person Is A Gift To Us From Creator

69

Each Of Them Has A Purpose

70

We Can Help Them Find That Purpose By Believing
In Them

71
End
72
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