Fetal Alcohol Spectrum Disorders

1. Fetal Alcohol Spectrum Disorders Tonya Millsap Catulpa Community Support Services SYMPOSIUM 2008 Working Together for Kids & Teens with Disabilities

2. FASD in Simcoe County Building a Comprehensive Approach Bridging the Gap

3. The Acronym .. F = Fetal: changes in normal development in utero A = Alcohol: teratogen causes cell/process changes and damage S = Spectrum: damage presents from mild to severe D = Disorder: Difficulty/inability to function or adapt as expected across a life span.

4. What is FASD ? FASD itself is an educational term, not a clinical diagnostic term. Describes the spectrum of disabilities associated with prenatal alcohol exposure.

5. Clinical Diagnostic Categories of FASD • Fetal Alcohol Syndrome (FAS) • Partial FAS (pFAS) • Alcohol-Related Neuro-Developmental Disorder (ARND) • Alcohol-Related Birth Defects (ARBD) Canadian Guidelines for Diagnosis of FASD, 2005.

6. FASD and Prenatal Development Alcohol crosses freely through the placenta and risks the normal development of the fetus. Damage can occur in various regions of the brain. It is not the only factor contributing to the development of the fetus.

7. FASD and Prenatal Development Adapted from D. Debolt in FASD: Considerations for Practice.

10. CMAJ 2005; 172 (5 suppl): S1-S21 "FASD is a serious health and social concern for Canadians"

11. Where there is alcohol, there is the risk of FASD. • Health Care – Primary, Secondary & Tertiary • Children’s Services • Education • Justice • Adult Developmental Services • Mental Health • Human Resources & Employment Adapted from Donna Debolt in FASD: Considerations for Practice. It is an issue for:

12. FASD Prevalence & Economic Impact It is estimated that: • 9 babies in every 1,000 born in Canada have FASD • FASD is the leading cause of developmental disability among Canadian children • The costs of FASD to society are high – direct monetary costs are estimated at about 1.5 million per person with FASD. Lost potential and opportunity are priceless. Public Health Agency of Canada, FASD: a framework for action, 2005.

13. FASD: A Comprehensive Approach Research Youth Justice FASD in Simcoe County: A Comprehensive Approach, 2008.

14. Diagnostic Services Present as a blueprint for case management and service planning.

15. Invisible Disabilities - An individual’s place, and success, in society is almost entirely determined by neurological functioning. A child with a brain injury is unable to meet the expectations of parents, family, peers, school, and career and can endure a lifetime of failures. The largest cause of brain injury in children is prenatal exposure to alcohol. Often the neurological damage goes undiagnosed, but not unpunished. FASLink, Bruce Ritchie.

16. Streissguth (1991) “Fetal Alcohol Syndrome is not just a childhood disorder, there is a predictable long term progression of the disorder into adulthood in which maladaptive behaviours present the greatest challenge to management.” Primary Disabilities Secondary Disabilities

17. Provincial Outreach Program for Fetal Alcohol Spectrum Disorder (POPFASD) BC Ministry of Education Initiative http://www.fasdoutreach.ca/

18. Primary Disabilities • “A behaviour that most clearly reflects differences in brain structure and function” (Streissguth in Malbin)

19. Primary Disabilities • Impulsivity • Difficulty linking actions to outcomes • Slower auditory and cognitive processing • Inconsistent performance • Dysmaturity • Overly sensitive and stimulated Ann Streissguth

20. Secondary Disabilities • “develop over time when there is a chronic ‘poor fit’ between the person and his / her environment.” (D. Malbin, 2002) • “difficulties that can occur when there is a discrepancy between expectations and a person’s ability to perform.” (Quoted in Clarren, 2004)

21. School Problems 60% Trouble with the law 60% Employment Problems 80% Drug and alcohol issues 30% Mental Health Issues 90% Victimization Difficulties with independent living 80% Innappropriate sexual behaviour 50% Exploitation Difficulties with Parenting A. Streissguth in C. Bryne, 2008. Secondary Disabilities

22. Universal Protective Factors • Living in a stable and nurturing home for 72% of life. • Staying in a living situation for for average of longer than 2.8 years. • Having a diagnosis by 6 years. • Accessing Developmental Disability Services. • Full FAS diagnosis. • Never exposed to violence/victimized. • Basic needs are met for 13% of life. • Experiencing good quality home from 8-12 years. (Ann Streissguth)

23. Mobilization

24. Building A Comprehensive Approach

25. The Master Key Vision: Every person in every system is trained in FASD issues and understands the nature of FASD as neurological impairment, can recognize the symptoms of invisible forms of FASD, can see the Invisible Gap. Invisible Gap: Difference between apparent ability to function and actual ability to function. Quoted: Teresa Kellerman, FAS Coordinator Arizona Division of Developmental Disabilities FASD Centre for Excellence.

26. A Comprehensive Approach: Year One Research Youth Justice FASD in Simcoe County: A Comprehensive Approach, 2008

27. Bridging Gaps: Year One • Increasing community capacity to: • Informally and formally recognize • Support through the life span • Assess & Diagnose • Identify long term plan

28. References Byrne, C. in “FASD Does Not Exist in Isolation: Psychiatric Co-morbidity in FASD”. (2008). Vancouver, BC. Chudley, A., Conry, J., Cook. J., Loock, C., Rosales, T., & LeBlanc, N. (2005). Fetal Alcohol Spectrum Disorder: Canadian Guidelines for Diagnosis. Canadian Medical Association Journal. Debolt, D. in FASD: Considerations for Practice. FASD: A Framework for Action, (2005) Streissguth, A, & Kanter, J. (Eds). (1997). The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities. Seattle, WA: University of Washington Press.

29. Tonya Millsap FASD Project Manager tmillsap@catulpa.on.ca Bridging the Gap Building a Comprehensive Approach