Transcript Document

The Prevalence of FASD in a
Maritime First Nation
Community
Principal Researcher:
Lori Vitale Cox PH.D
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)
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
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
N=187
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
School Population 1997-8
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Grade
Grade 1
Grade 2
Grade 3
Grade 4
Grade 5
Grade 6
Grade 7
Grade 8
Number of Children
27
28
22
29
32
17
19
13
N=187
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%)
1997-8 Community Meetings
 Working Committee Formed
 Decision To Undertake Needs Assessment
Research
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
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
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
Method
Four Procedures Used to Identify Children
1. Screening
§ Medicine Wheel Screening Tool
2. Educational Psychology Assessment
3. Medicine Wheel Developmental History
§ In-depth Interview With Primary Caretaker
4. Medical Examination-Diagnosis
Medicine Wheel Screening Tool
 Index was handed out to each of the 22 classroom
teachers
 Teacher Perception of Level of Children’s
Particular Needs in 4 Domains
 Cognitive-Academic, Neurobehavioral
 Social-Family Problems, Conduct Problems
 Emotional
 Physical
Medicine Wheel Screening Tool
 Problems=120=64%
 Multiple Severe Problems=65=35%
 Multiple Severe Cognitive/Behavioral
Problems=55=29%
 Average=46=25%
 Above Average=21=11%
Ed-Psychology Assessment
Battery of Tests
PPVT, WISC, Raven’s 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
Medicine Wheel Developmental
History
Semi-structured Interview Tool
 Full History of the Children in Terms of the
Physical, Social, Emotional and MentalDevelopmental Domains
 Mother’s Details of Pre-peri-post Natal
Periods.
 Specific Questions About the Use of
Alcohol and Drugs Including Nicotine.
Medical Examination-Diagnosis
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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
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.
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
Results-Diagnosable Medical
Conditions
Diagnosis
FAS
Children
diagnosed
1998
Children
diagnosed
1999
5
2
Totals
(PFAS)
ARND
AD/HD
ASD*
11
2
4
1
6
10
6
12
10
7
17
*Autism Spectrum Disorder
1
Downs
Tourettes
Sub Total
Alcohol
Totals
18
24
1
18
25
1
36
49
1
1
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
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 night…6-12 beer a night.. no more
than a 24…enough to feel good’
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.
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 2030%
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
Abel’s 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)
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 Abel’s
 One Could Argue This Population Too Old to Be
Identified at Birth
FASD Still Invisible To Many
Health Professionals
 Present study Children Born In Late 1980’s 1990’s
 All Were Born at Large Regional Hospital CenterLess 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
Low Incidence Estimates
Abel’s 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
Good Incidence Data Essential
 Based On Low Incidence Estimates
Armstrong (1998) and Abel and Armstrong
(1999) Conclude Concerns With FASD Are
Socially Constructed ‘Panic’and 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
 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
 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
 Individuals With FASD Perceived as Being
Problems
 Instead of Being Perceived of As Having A
Problem
Secondary Problems
 90% Individuals Develop Secondary
Problems-Disabilities--School Problems,
Mental Health Disorders, Trouble With the
Law, Addictions, Etc
Spiralling Problems-RCMP Stats
RCMP Stats
Year
Maritime First
Nation
Community
1998
1999
Sex Assault
19
Assault
Comparison
Community
1998
1999
14
3
4
237
220
32
40
Property Damage
117
117
9
10
Spousal Assault
18
40
2
4
Total Mental Health 110
Act
107
9
5
Suicide/Attempted
Suicide
100
5
3
56
Spiralling Problems
 Is FASD Fuelling this Spiral?
Keeping People From Achieving Health
and Well-Being.
 What Can We Do To Change This?
Diagnosis Means Responsibility
Wellness Objectives-Diagnosis,
Intervention, Prevention
 Prevent Secondary Problems--Provide
Interventions and Support at School and
Home
 Prevent Further Incidence
 Provide Regular Diagnostic Services
Protective Factors
 Early Diagnosis
 Stable Home Life
 Supportive Interventions School
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 Children’s Gifts as Well as
Their Academic Skills
 To Create A Culturally Sensitive Model of
Intervention
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
 Mi’qmaw Cultural Program
Medicine Wheel Approach-1998-2006
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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
Friends
Intervention
Makes a
Difference
Can You Tell
Which of
These
Children
Has Special
Needs ?
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
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
Nogemag
 Mi’Maq 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
4 R’s Of FASD Educational
Interventions
Relationship
Routine/Ritual
Respect Brain
Differences
Repetition
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
What We Learned
‘If You’ve Told (Someone) A Thousand
Times And He Still Doesn’t
Understand Then It is Not (He) Who Is
The Slow Learner’
Walter Barbee
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
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
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
Mother’s of Children With FASD Of ChildBearing Age
 Social Workers-Family Workers Not Attached To Child
Protection Services
Every
Person Is
A Gift To
Us From
Creator
Each Of
Them Has
A Purpose
We Can Help
Them Find
That Purpose
By Believing In
Them
End
.