Understanding Fetal Alcohol Spectrum Disorder: Challenges and Solutions

1. Presentation for the Cree Nation Kent Saylor, MD January 15, 2013 Fetal Alcohol Spectrum Disorder

2. Introduction • Pediatrician • Mohawk Nation • Montreal Children’s Hospital, Northern and Native Child Health Program • Visiting the Cree communities since 2000 • Became interested in FASD due to large number of referrals

3. Child #1 • 11 year old boy, grade 6 • Born prematurely • Problems in school • Poor attention span • Not learning well • Hard time making friends • Normal growth and appearance • Confirmed alcohol exposure in utero

4. Child #2 • 11 y/o boy • Been in and out of foster care • Problems at school • Poor concentration • ? memory problems • Some social difficulties • Face – mild abnormalities • Confirmed alcohol exposure in utero

5. Child #3 • 7 year-old boy • Hard to manage at home • Single dad, hard to set limits • Hard to manage at school • Hyperactive, can’t sit still • Not learning well • Normal growth and appearance • Confirmed alcohol exposure in utero

6. How do you know if they have been affected by alcohol exposure in utero? • If they are diagnosed what do you do to help them? • What resources will they need?

7. Terminolgy FASD Fetal Alcohol Syndrome (FAS) Alcohol-related Neurodevelopmental Disorder (ARND) Partial Fetal Alcohol Syndrome (pFAS)

8. “FASD” is not a diagnosis

9. Older terms FAE ARBD

10. FASD • There are strict criteria for diagnosis for all 3 official diagnoses • Growth • Facial features • Brain damage* • Alcohol use during the pregnancy*

11. FASD • All children with FAS, pFAS or ARND have: • Alcohol exposure during the pregnancy • Brain damage • This is a life-long condition!!

12. Brain Damage ARND = pFAS = FAS http://minnesota.publicradio.org/display/web/2007/09/06/fasd6 http://www.fascme.com/c104.php

13. Most common diagnosis The majority of children affected by alcohol exposure have ARND and look totally normal!

14. Diagnosis of FASD • There is no blood test or x-ray to detect FASD • The diagnosis is made by the evaluation of a specialized team including the following: • Doctor • Psychologist (neuropsychologist) • Occupational Therapist • Speech and Language Pathologist

15. Multidisciplinary Team Approach Ideally the team evaluates the child over several days, comes to a conclusion together about the diagnosis and gives the information and recommendations to the family.

16. Diagnostic Team for FASD • Doctor • Must have knowledge about FASD • Know the criteria for FASD • Extra training for diagnosis • Be competent in making the measurements • Cannot make the diagnosis alone

17. Diagnostic team • Psychologist • Have knowledge about FASD • Know the criteria for FASD • Extra training for diagnosis • Be able to test all brain domains for evidence of brain damage • Cannot make the diagnosis alone

18. Occupational Therapist • Must have knowledge about FASD • Know the criteria for FASD • Extra training for diagnosis • Know which tests to use • Cannot make the diagnosis alone

19. Speech and Language Pathologist • Must have knowledge about FASD • Know the criteria for FASD • Extra training for diagnosis • Know which tests to use • Cannot make the diagnosis alone

20. Barriers to diagnosis There is no multidisciplinary diagnostic clinic in Quebec!

21. Barriers to diagnosis - Quebec • Doctors and psychologists • Most are not qualified to do an evaluation • Most have not taken the extra training • Most do not know the exact criteria • Most do not know who to refer to • Some may try to make the diagnosis alone which can be dangerous

22. Barriers to diagnosis-Quebec • Occupational Therapists and Speech and Language Pathologists • Most have not taken the extra training • Most do not know the exact criteria • Most do not know what to test for

23. Cree Territory - Barriers • Current status • Poor documentation of alcohol use in the medical records of the birth mom • Incomplete birth records from hospital where mom’s are delivering • Many children in foster care and alcohol history is unknown. Youth protection workers finding it hard to get this info. • Denial of alcohol use

24. Cree Territory - Barriers • Speech and Language Pathology • None in the territory for children 0-5 years • None have the expertise to evaluate children for FASD • Occupational Therapy & Psychology • Limited resources in the territory • None have the expertise to evaluate children for FASD

25. Cree Territory - Barriers • Doctors • Most do not know about FASD • Most do not know who to refer to • Some are not making the referrals because they do not feel there are adequate resources to help a child with FASD!

26. Resources needed!

27. Diagnostic Team • A diagnostic team is needed • We are currently evaluating the children by individual assessments and not using a team approach • We are working with the Cree Nation to find a solution

28. Resources in the communities • There are many entities who must be involved in raising children with FASD • Parents • Schools • Health care • Daycare • Others • Currently none of these services are properly equipped for a child with FASD

29. Schools • The school is often the main service for children with FASD • Most children diagnosed are school age • Children spend the majority of their time at school • These children are already in your schools

30. Schools • There are models for success but there is no well-defined treatment for children with FASD • Individualized approach for each child • Some commonalities

31. School services • Requires some professionals present at all times in the schools • The model of bringing specialists in for consultation and then leaving the community will likely not work • Parents will likely need to be involved with their children at school

32. School services • Suggestions for success • Training/education for teachers and professionals • Learn new techniques for teaching children with FASD • Small class size • Low stimulation classrooms

33. School professionals • Behavioural specialists available daily (psychoeducator or other professional) • Frequent visits by speech and language pathologist • Availability of school psychologist several times per year

34. Schools -Communication • Teachers will need close contact with: • Parents • Health care professionals • Social Services

35. Schools - Funding • More funding is required • Coding • Encourage parents for evaluations • Fundraising • Direct funding from Minister of Education • Networking with other Cree entities

36. Health Board

37. Health Board • Professionals who know children are desperately needed • Professionals hired for adults and children will probably focus on the adults

38. Health Board Priorities • Professional who can assist families of children with behavioural challenges are desperately needed • Speech and Language pathology for children must be available in all communities • Occupational therapy for children must be available in all communities • Child Psychology services

39. Health Board priorities • Case Managers will be needed for these children • Advocates for the children • Helping to support the families • Assist with communication among all services involved • Follow the child into their adult life • Could be social worker, OT, nurse, psychologist, etc.

40. DYP/Social Services • These children need a stable home • Shifting the child from one home to another is probably making things worse

41. DYP/Social Services • DYP Workers • Know how to ask your clients about alcohol use during the pregnancy • Know what to tell them if they are using alcohol or their child was exposed • Document, document, document!!!

42. Daycares/CRA • Most child are not diagnosed until after starting kindergarten • Already working with several children with special needs • Workers with early childhood education • Role is to identify children at risk and suggest a referral

43. CHB-CSB-CRA • FASD awareness and prevention • Recruitment and retention of professionals • Additional funding is probably needed, work together • Communication and resource sharing is important • Avoid silo approach

44. Resources and funding Silo Approach

45. Resources and Funding Combined approach

46. CHB-CSB-CRA • The families will be the main caregivers for this child for the rest of their lives • Support • Financial • Parenting skills • Life skills • Respite • Academic • Etc.

47. Back to the cases

48. Child #1 • 11 year old boy, grade 6 • Born prematurely • Problems in school • Poor attention span • Not learning well • Hard time making friends • Normal growth and appearance • Confirmed alcohol exposure in utero

49. Child #1 • Eventually diagnosed with ARND - 2 years after first meeting • School modified plan, resources obtained • Responded to medications for ADD • Family continues to struggle with parenting and stability • Child now in group home and not doing well.

50. Child #2 • 11 y/o boy • Been in and out of several foster homes • Problems at school • Poor concentration • ? memory problems • Some social difficulties • Face – mild abnormalities • Confirmed alcohol exposure in utero