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

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 Maritime Region of Canada

4
Is FASD Health Issue in FN Communities in
Maritimes?

• Present Study Based on Data Collected in an
  Anonymous 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 With High Rates of
  Youth Suicide
• Concerned With Severe Behavior and Learning
  Problems of Youth in and Out of School-high Rates
  Delinquency, Alcohol and Inhalant Use, School
  Attrition (75)

8
1997-8 Community Meetings

• Working Committee Formed
• Decision To Undertake Needs Assessment Research

9
Objective of Research

• To Determine Un-Met Needs-Physical, Social,
  Emotional, Interfering With Learning
• Suspicion FASD or Other Conditions Might Be
  Contributing Factors
• To Provide Basis for Appropriate Intervention
  Design
• To Determine Funding Requirements

10
Parents Perceptions of Problems

• 1998 Survey of Parents of School Children 75
  surveys handed out, 56 returned-21 of School
  Families, 75 Response Rate
• Question What of Children Had 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

11
Method

• Active Case Finding or Ascertainment Method Used
• Children Selected for Assessment Through an
  Active Screening Process
• Identify Those That Were More Likely Than Others
  in the Sample Population to Be Affected

12
Method

• Four Procedures Used to Identify Children
• Screening
• Medicine Wheel Screening Tool
• Educational Psychology Assessment
• Medicine Wheel Developmental History
• In-depth Interview With Primary Caretaker
• Medical Examination-Diagnosis

13
Medicine Wheel Screening Tool

• Index was handed out to each of the 22 classroom
  teachers
• Teacher Perception of Level of Childrens
  Particular Needs in 4 Domains
• Cognitive-Academic, Neurobehavioral
• Social-Family Problems, Conduct Problems
• Emotional
• Physical

14
Medicine Wheel Screening Tool

• Problems12064
• Multiple Severe Problems6535
• Multiple Severe Cognitive/Behavioral
  Problems5529
• Average4625
• Above Average2111

15
Ed-Psychology Assessment

• Battery of Tests
• PPVT, WISC, Ravens Matrices, Bender-Gestalt,
  Goodenaugh, WRAT, CBCL-T, Conners PRS/TRS,
  Vineland Adaptive Behavior Scales
• Neuro-behavior/Functioning- Memory, Auditory and
  Visual Language,Verbal and Non-Verbal Abstract
  reasoning, Attention, Focus, Concentration,
  Social Communication,, General Cognitive Ability,
  Perceptual Organization, Visual Motor Skills,
  Information Processing

16
Medicine Wheel Developmental History

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

17
Medical Examination-Diagnosis

• 2 Diagnostic Clinics-June 1998- May 1999.
• Dr. Mike Dickinson, Pediatrician
• Consent Forms Signed by the Parents
• CHN Nurses Check Ht, Wt, Vision, Hearing
• Researcher Prepared Psycho-educational and
  Developmental Assessment Including Medical,
  Social, Pregnancy History

18
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.

19
Diagnostic Clinics

• 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 the IOM for Children
  Exposed to Alcohol in Utero and With Clear
  Evidence of Brain Dysfunction Not Caused by
  History or Genetics

20
Results-Diagnosable Medical Conditions
21
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

22
Discussion

• All of the mothers who disclosed alcohol use also
  smoked nicotine cigarettes
• All of the mothers in the sample drank in a binge
  pattern-most during the first trimester before
  they knew they were pregnant
• Most could not remember the details of their
  drinking in terms of quantities I drank a
  Friday and Saturday night6-12 beer a night.. no
  more than a 24enough to feel good

23
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 Unconfirmed Alcohol Exposure
• Disclosure Continues to Be Difficult for Mothers
  Because Social Implications for Themselves If
  Children Found to Have an Alcohol Related
  Disability.

24
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 Would Have Been
  Inaccurately Classified PFAS
• Health Center Data Indicates Drinking and
  Drugging Still A Problem During Pregnancy 20-30

25
Conclusion

• Unexpected High Prevalence FASD
• This high rate cannot be generalized to the
  larger population
• Results challenge research assumption Abel(1994)
• He estimated worldwide incidence anywhere from
  .19/1000 (1987) to 1.2/1000 (1994)-recent
  estimate less than 1/1000 (1999)--based on a
  number of prospective epidemiological studies of
  obstetric hospital populations worldwide

26
Abels Incidence Data

• Abel Assumes FAS Readily Recognized and Diagnosed
  in Hospitals at Birth or Soon After
• He 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)

27
Incidence Research

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

28
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

29
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

30
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

31

• If FASD Were Not Under Diagnosed the Individuals
  in Prevalence Studies Would Have Been Diagnosed
• This Study Also Indicates a Problem With Our
  Diagnosis of This Disability for the General
  Population Who Are Also Receiving Services at
  This Hospital Center-Using Conservative Incidence
  9-10/1000 8-10,000 People-NB 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

32

• 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

33

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

34
Secondary Problems

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

35
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

36
Spiralling Problems

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

37
Diagnosis Means Responsibility
38
Wellness Objectives-Diagnosis, Intervention,
Prevention

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

39
Protective Factors

• Early Diagnosis
• Stable Home Life
• Supportive Interventions School

40
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

41
Medicine Wheel Approach-1998-2006

• 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

42
Medicine Wheel Approach-1998-2006

• 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

43
Friends

Intervention Makes a Difference Can You Tell
Which of These Children Has Special Needs ?
44
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

45
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

46
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

47
4 Rs Of FASD Educational Interventions
Relationship
Respect Brain Differences
Routine/Ritual
Repetition
48
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

49
What We Learned
50

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

51
Other Developments-Research

• Development of Medicine Wheel Tools and Model To
  Replicate In First Nation Communities and Small
  Community Schools-Crime Prevention Funding
• Movie To Demonstrate Model
• Provincial Judges Training
• Survey Research of Judges and Crowns Perceptions
  and Needs-2006
• Survey of Health Professionals in Atlantic
  Aboriginal Communities-2000/ 2007 Follow-up

52
Eastern Door Diagnostic Center

• Multidisciplinary Diagnostic Team for FASD and
  Other Developmental Conditions
• First Diagnostic Team in Maritimes
• Training Cold Lake Alberta Ted Rosalas
• First 2 Diagnosis In Spring of 2006
• Family Support Worker After Diagnosis-6 Months
• Offering Pre-natal Out-Reach-High Risk Moms
• Developing Medicine Wheel Difference Game Cards
  For Mentoring Program

53
FASD Prevention Needed

• 30 of Children In Study Sample Were Related
• Recent Data From Health Center Indicates
  Continuing High Rates of Alcohol and Drug Use
  Especially During Early Pregnancy
• Need Funding For Mentoring Program For Birth
  Mothers of Children With FASD Of Child-Bearing
  Age
• Social Workers-Family Workers Not Attached To
  Child Protection Services

54

Every Person Is A Gift To Us From Creator

55

Each Of Them Has A Purpose

56

We Can Help Them Find That Purpose By Believing
In Them

57
End
58
.