Presentation for the Cree Nation Kent Saylor, MD January 15, 2013

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

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

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

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

 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?

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

“FASD” is not a diagnosis

Older terms FAE ARBD

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

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

Brain Damage ARND = pFAS = FAS

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

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

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.

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

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

 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

 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

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

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

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

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

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

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!

Resources needed!

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

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

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

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

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

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

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

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

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

Health Board

 Professionals who know children are desperately needed  Professionals hired for adults and children will probably focus on the adults

Health Board Priorities 1. Professional who can assist families of children with behavioural challenges are desperately needed 2. Speech and Language pathology for children must be available in all communities 3. Occupational therapy for children must be available in all communities 4. Child Psychology services

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.

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

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!!!

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

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

Resources and funding Child CHBParentCRACSB Silo Approach

Resources and Funding CRA CSB CHB Family Child Combined approach

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.

Back to the cases

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

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.

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

Child #2  Completed all the testing after 10 months  Does not fit criteria for FAS, pFAS or ARND  Confirmed ADHD  Doing well in stable foster family

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

Child #3  Still awaiting for a full evaluation after 18 months  Family has missed several appointments  No family stability, child goes off and on meds for ADHD  Not getting services  Cannot get a straight answer of how he is doing at school

Conclusion  FASD is not a diagnosis  The 3 accepted terms are FAS, pFAS and ARND  All three are equally severe in terms of brain damage

... conclusions  Diagnosis is challenging  The process to make a diagnosis is currently not ideal  We are working on a plan to create a multidisciplinary team

...conclusions  The children and parents will need multidisciplinary support in the communities for life

... conclusions  Major changes will need to take place to identify and support these children and their families Cree School Board Cree Health Board Cree Regional Authority Other

 Planning for these changes should start now  Plan to expand services as more children are diagnosed

Thank you