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 N=187

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 N=187 • 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 Children’s Particular Needs in 4 Domains • Cognitive-Academic, Neurobehavioral • Social-Family Problems, Conduct Problems • Emotional • Physical

14. 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%

15. 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

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 • Mother’s 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 night…6-12 beer a night.. no more than a 24…enough 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. 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)

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 Abel’s • 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 1980’s 1990’s • 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 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

30. 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

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

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 Children’s 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 • Mi’qmaw 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 • 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

47. 4 R’s 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 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