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
http://minnesota.publicradio.org/display/web/2007/09/06/fasd6
http://www.fascme.com/c104.php
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
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.
2.
3.
4.
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
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
Silo
Approach
CSB
CHB
Child
CRA
Parent
Resources and Funding
Combined
approach
CRA
CSB
CHB
Family
Child
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