P-731 ᐧᐋᒋᔮᐦ FASD Initiative Presented by: Evike Goudreault Coordinator of Disability Programs Anny Lefebvre Team Leader Diagnostic and Intervention Clinic August 21, 2018
Fetal Alcohol Spectrum Disorder (FASD) Group of conditions that can occur in a person whose mother drank alcohol during pregnancy; Effects may include physical problems and problems with behavior and learning; According to WHO, FASD is leading cause of intellectual disability worldwide; Cannot be cured (can only prevent secondary disabilities and maximize development) Entirely preventable https://www.cdc.gov/ncbddd/fasd/facts.html 2
FASD has an impact on: Healthcare services Childcare services Educational services Social services Youth protection and foster care services Youth Healing Services Justice and correctional services The future of a Nation 3
Addressing the issue through: Awareness Prevention Assessments Diagnosis Advocacy Intervention Education Multi-disciplinary support system 4
History of FASD Initiative Prior to 2000 FASD not discussed much 2001- Health Canada Funding for FASD prevention and awareness (CRA/CNG applies for funding) March 2002: First Training on FASD for Quebec First Nation Population 25 First Nation and Inuit Communities (62 participants) Jan 2003 March 2005 48 First Nation and Inuit communities receive a 3-day training (and follow up support) April 2005 CBHSSJB takes over the Health Canada Agreement 2005 2012 Establishment of a Cree regional FASD Advisory Committee Each of the 9 Cree communities has established a local FASD support team. Concentrated on trainings related to prevention, awareness and intervention 2012 2017 - FASD Diagnostic and Intervention Clinic 2017 present - Development of Neurodevelopmental Clinic and Specialized Service Team 5
Prevention/Awareness Projects 2005-2006 Community-based trainings in each of the nine (9) Cree communities Nurses training -Preventing & Addressing Alcohol Use in Pregnancy & Motivational Counselling NNADAP training Awareness and Prevention of FASD FASD Cree Forum -working with youth and elders to develop prevention resources 2007 Preventing & Addressing Alcohol Use in Pregnancy Training for school nurses 2008 FASD in School curriculum Yearly on September 9: International FASD Awareness day 6
Community Awareness Resources 7
Our slogan A baby s first home is the mother s womb Cree Elder Robbie Mathews 8
The challenge with awareness: Without evidence that FASD really is epidemic, there remains a lack of motivation to build diagnostic capacity Without adequate diagnostic capacity we lack the ability to prove that FASD is really epidemic in size and in severity and thus have difficulty preventing it. 9
Why diagnose? Support and intervention strategies can be implemented. Education system can be informed and can get proper funding and resources. Important for public education. Individual may be relieved to know there is a reason for their difficulties. May help if involved with the judicial system. Prevent future alcohol-affected pregnancies/births. Unethical to diagnose without offering intervention 10
Intervention Projects In preparation for the diagnostic process 2006 Provincial Forum for First Nation Communities on Intervention 2007 Cree Regional Conference: Putting the Pieces Together Community-based Intervention Strategy Training Family Impact training 2008 Regional conference for individuals and families with FASD and/or other special needs Awash nurses and Community Health Rep training Multi-disciplinary team meetings and support sessions On-going support to local multi-disciplinary teams 2009-2012 Case conferencing for children possibly affected Family Needs Assessment Development of Screening Tool 11
Development Towards Diagnosing 2003 Pediatricians start receiving referrals r/o FASD 2004-2005 Cree Health Board addresses the issue of getting children properly assessed 2005 Representatives from Cree Health Board attend 3-day diagnostic training in Timiskaming provided by Lakeland Centre for FASD; Cold Lake, Alberta 2009-2010 Pilot Project in Waskaganish professionals from Cree Health Board/CSB/CRA attended and were trained by Elsipogtog group Community Readiness and Community training more training to schools 2010 CHB and MCH in discussions about starting a diagnostic clinic at MCH with CHB support Business proposal submitted but rejected 12
Decision: Community or Hospital Based Model? Community and Hospital Based Hospital Based Community Based FASD Diagnostic Team
Support from the Cree Nation s Entities August 2012 After a presentation at the Cree Nation General Assembly Grand Chief, Matthew Coon Come signs resolution to focus on FASD January 2013 CHB organizes FASD Action Forum in cooperation with CRA and CSB (over 100 participants) 14
GRAND COUNCIL OF THE CREE (EEYOU ISTGHEE/CREE REGIONAL AUTHORITY Annual General Assembly Resolution 2012-10 SUBJECT: Preventing Fetal Alcohol Spectrum Disorders IT IS RESOLVED THAT the members of the 2012 Annual General Assembly of the Grand Council of the Crees (Eeyou lstchee)/cree Regional Authority recommends to all the Cree entities of Eeyou Istchee to make the prevention of fetal alcohol spectrum disorders a priority; to work in collaboration with one another to reduce the prevalence of fetal alcohol spectrum disorders; to provide services with regards to, the awareness of the effects of prenatal exposure to alcohol, the increase compassion for individuals affected by prenatal exposure to alcohol, minimize further effects and ensure healthier communities; and finally report at the next Assembly of the Grand Council of the Crees (Eeyou lstchee/cree Regional Authority) to show the actions taken to decrease the prevalence of fetal alcohol spectrum disorders. 15
A World-Renowned Project The rewards of REUNISAF s core network Results: 2002 à 2006 50% of mothers abstained from drinking alcohol Among those using alcohol (at the end of 2006): 52% are using effective contraceptives. Many non-alcohol exposed children are born to mothers, who previously gave birth to children affected 16
Regional Interagency Multi-disciplinary Centre? Prevention Centre follow up of at-risk women Training Centre: health, social, education, justice, family Diagnostic Centre Intervention Centre Research Centre All in one! Not realistic at this time 17
Proposal to develop FASD Diagnostic Clinic May 2013: Proposal to develop a Cree Regional FASD Diagnostic Clinic was presented to the Cree Health board of directors. Decision eventually made to start a Cree diagnostic clinic in partnership with CSB and CRA. In preparation for the clinic, thirty-nine (39) health care providers received training from Lakeland FASD Diagnostic Centre, one of Canada s most renowned FASD diagnostic clinics. 18
First and only diagnostic and intervention clinic in the province of Quebec September 9th, 2013 (FASD International Awareness Day) Grand Chief announced the official launching of the Cree Regional Fetal Alcohol Spectrum Disorder (FASD) Diagnostic and Intervention Clinic June 2014 first clinic takes place in Whapmagoostui 19
Long-Term Objectives of FASD Diagnostic Clinic Offer early diagnosis to children affected Ensure appropriate support, and intervention strategies are implemented through a well developed care plan to foster the child s success and prevent secondary disabilities; Ensure appropriate support is offered to the family; Ensure appropriate support and training is offered to front-line workers working with the child and family; Prevent future FASD births... 20
Not just a diagnostic clinic Development of multi-disciplinary diagnostic and intervention clinic; Establish a referral process; Coordinate diagnostic process of identified children; 10 year post-diagnosis follow-up of child. 21
Canadian FASD diagnostic guidelines Published in 2015 in the Canadian Medical Association Journal Dr. Jocelyn Cook (Public Health Agency of Canada) Input from experts across Canada 22
Canadian Guidelines 2015 1. FASD with Sentinel Facial Features 2. FASD without Sentinel Facial Features 3. At risk for neurodevelopmental disorder and FASD, Associated with Prenatal Alcohol Exposure 23
Referral Overview of diagnostic process Intervention Consent Diagnostic Child & Mother s history Assessments Data collection 24
Diagnosis: 3 components to consider Alcohol Exposure > Facial Features > Lip Philtrum eyes Brain Damage Neuroanatomy Motor skills Cognition Language Academic Achievement Memory Attention Executive functions & impulse Affect regulation Adaptive behaviour & social skills 25
Multi-disciplinary diagnostic team (core) Neuropsychologist Speech/Language Pathologist Occupational Therapist Pediatrician Team Leader 26
Multi-disciplinary Local Support Team Schools special ed. teachers, classroom teachers, shadows Health Care Centres nurses, CHR, doctor, psychiatrist Social Services: Mental health workers, NNADAP workers, family support workers, social workers Youth Protection Workers Families and elders Case Manager 27
Steps of diagnosis process 1. Reception of referral 2. Identification of Case Manager 3. Consents (legal guardian, mother, child) 4. Confirmation of PAE by birth mother 5. Revision of child s history (family, clinic, school) 6. Genetic and metabolic testing 7. Assessments done locally 8. Physical exam 9. Consolidation of findings 10. Diagnosis Clinic done locally 11. Presentation of diagnosis to care provider (child if needed) 12. Recommendations (upon parental approval) 13. Intervention discussion with local team (clinic, school, youth protection) 14. Ongoing support Preparation phase Assessments Clinic Intervention and support
Disability Programs Specialized Services Structure Diagnostic Intervention Training/mentoring
Intervention Strategies Strategy Adapted to each child Focus on child and parents biggest concern Long-term outcome taken into consideration Evidence-Based Best Practice Safe & stable environment Early Diagnosis Early intervention 30
Intervention Sectors Health & Social At School In Community At Home 31
Who can be referred PAE confirmed (FASD Referral) Concerns for development in at least 2 areas Court order/ Physician/Mother Between 7 and 17 years old Parent consent FASD Other Diagnosis PAE not confirmed (Assessment ) Physician need clarification on specific area of development Request for specific assessment: IQ, ADHD, language, etc. Referring physician will consolidate No age limit 32
Data/Indicators (2014 to 2018) Data/indicators reported by FASD Diagnostic Team Result Number of clinics held 13 Number of communities visited by the diagnostic team 4 Number of children assessed >50 Number of children diagnosed with FASD 22 Number of children currently waiting for assessment(s) >80 Number of children currently being assessed >20 Data/indicators reported by Awash Teams in each community Number of babies born yearly (regional) 316 (2015) 33
Coordinator of DPSS Admin Tech PPRO Diagnostic Team Team Leader Intervention Team Team Leader OT OT SLP SLP Pediatrician Social Worker (X3) Neuropsy 34
Challenges Not enough clinicians to do the assessments Not enough human resources to offer specialized services within the communities (behavior management, early stimulation, family counselling) No respite facilities in the communities No lodging for teenagers and young adults with FASD No vocational programs for those affected 35
Other gaps in services No corridor of services for school age children needing: Language assessments and diagnosis Autism diagnosis No corridor of services for adults needing: Cognitive assessments (CRDI pathway or Mental health pathway) FASD diagnostic services 36
Future Projects Increase capacity to complete pediatric assessments ( waiting list) Develop diagnostic services for young adults Provide more community-based targeted services Develop community-based respite services Develop community-based lodging for clients affected by FASD Offer adequate vocational services and workshops 37
ᒋᓂᔅᑰᒥᑎᓐ Meegwetch! Thank you! Cree Board of Health and Social Services of James Bay Box 250, Chisasibi, QC J0M 1E0 Tel (819) 855-2744 Fax (819) 855-2098 ccsssbj-cbhssjb@ssss.gouv.qc.ca