Assessing for Fetal Alcohol
Spectrum Disorders in Children
Catherine Hargrove, MSW, JD
Cecily Hardin, LCSW
Hosted by
2011 AIA Teleconference Series
July 13, 2011
Case Study
• 3 years 7 months old Caucasian male
• Placed in foster care after his mother gave birth to a girl who
had methamphetamines in her system
• The Division of Children and Family Services conducted an
investigation, and removed all children from the home
• 3year old screened positive for an FASD using the NG
screening tool
• Mother admitted to using alcohol, marijuana, and
methamphetamines during pregnancy
• Mother states that she has a diagnosis of Bipolar disorder and
completed the 10th grade in school
Learning Objectives
• To provide an overview of fetal alcohol spectrum
disorders (FASD)
• To learn about the SAMHSA FASD Center for
Excellence diagnostic and intervention subcontracts
• To apply screening criteria for FASD with children
age 0-7 years, including positive monitoring
(+monitor)
• To share experience with the Child Guidance Center
as a model for integrating FASD services into a
behavioral health setting
What Is FASD and Why Diagnose?
Language of Fetal Alcohol
Spectrum Disorders (FASD)
• FASD is an umbrella term describing the range of
effects that can occur in an individual whose
mother drank alcohol during pregnancy. Although
disorders within the spectrum can be diagnosed, the
term FASD itself is not intended for use as a
clinical diagnosis. Diagnostic terms under the
FASD umbrella include the following:
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Fetal alcohol syndrome (FAS)
Partial FAS(pFAS)
Fetal alcohol effects (FAE)
Alcohol-related neurodevelopmental disorder (ARND)
Alcohol-related birth defects (ARBD)
Prenatal alcohol exposure (PAE)
What Are Fetal Alcohol
Spectrum Disorders?
• FASD are caused by prenatal alcohol exposure,
resulting in birth defects and developmental
disabilities.
• Individuals with an FASD have a wide range of
intellectual capabilities.
• Disabilities due to prenatal alcohol exposure
range from mild to severe.
• How much alcohol will cause how much
damage in an individual is not known.
FASD—a Significant Challenge
• FASD are the leading known preventable
causes of mental retardation.
• Prevalence of FAS in the United States is
estimated to be 0.5-2 per 1,000 live births.
• Prevalence of FAS, ARND, and ARBD
combined is at least 10 per 1,000 or 1 percent of
all births.
• Based on estimated rates of FASD per live
birth, nearly 40,000 infants born each year
have an FASD.
Why Diagnose FASD?
• Confirms a disability based on brain
impairment
• Can help to improve outcomes with a targeted
treatment plan
• May qualify a child for
accommodations in
educational settings
• Reframes behavioral
problems and provides access to services
Some Indicators of Need for
Assessment
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Positive result of screening for an FASD
Small head, facial or dental abnormalities
Joint, limb, and finger deformities
Vision or hearing problems
Heart or organ defects
Sleeping, breathing, or feeding problems
Maternal alcohol use
4 Key Diagnostic Features of
FASD
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Prenatal alcohol exposure
Characteristic facial anomalies
Central nervous system abnormalities
Growth deficiency
Common Co-occurring
Disorders
• Attention-deficit/hyperactivity
disorder
• Bipolar disorder
• Major depressive disorder
• Oppositional defiant disorder
• Antisocial personality disorder
• Obsessive-compulsive disorder
• Generalized anxiety disorder
• Post-traumatic stress disorder
• Disruptive behavior disorder
Questions and Answers
Initiatives of SAMHSA’s
FASD Center for Excellence
SAMHSA’s FASD Center for
Excellence
• A federal initiative devoted to preventing
and treating FASD
• Purpose is to decrease incidence of FASD
and improve quality of life among persons
with these disorders and their families
• Seven subcontracts that focus on priority
populations: children in child welfare and
behavioral health systems
Focus on Children Age 0-7 Years
• Fetal alcohol spectrum disorders (FASD)
are under-diagnosed.
• Early diagnosis of an FASD and
intervention can improve the lives of
children and families.
• Interventions developed on the basis of
FASD diagnosis are apt to be most
effective in meeting the needs of a child.
Service Components
• Screening for an FASD
• Monitoring children age 0-3 years who
have positive screening results for an
FASD but are asymptomatic
• Referring children with positive FASD
screening results for diagnostic
evaluation
• Providing intervention services for
children with diagnosis of an FASD
FASD Screening
• An FASD screening tool was developed
by SAMHSA’s FASD Center for
Excellence.
• The tool was developed on the basis of
the following sources:
› Literature review
› Expert panel input
› Experience of previous subcontractors
who used the tool
Screening Criteria for Age 0-7
Years
• Any one of the following:
› Face rank 3 or 4, as measured by the facial photographic
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screening tool for fetal alcohol syndrome
Sibling with diagnosis of an FASD
Child with previous FASD diagnosis
Confirmed prenatal exposure to alcohol or drugs
• Birth mother with confirmed history of drug or alcohol
use outside pregnancy and any of the following
characteristics in the infant:
› Growth deficit
› Central nervous system or developmental abnormality
› Medical note of dysmorphia
Case Study
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Premature African American female born prematurely tested positive for cocaine
Chile Welfare report made
Infant born with underdeveloped lungs and digestive track, therefore she remained
in ICU
Judge ordered child to remain in state’s custody
Child received FASD screening, and received a Face Rank 3
Mother reported drinking gin daily for first month prior to knowledge of pregnancy
After pregnancy confirmed, mother switched to a 6 pack of 12 oz. beers every other
day, typically drinking at least 4 drinks each time she drank
Child released from hospital after 4 months
Placed in the +monitor status
Mother’s parental rights terminated
Child adopted in the fall of 2010
Genetics testing confirmed FAS diagnosis
Interventions were provided consistent with the diagnosis
Child is now 2 years old, still on oxygen and feeding tube, but doing fairly well
Criteria for +Monitor Status
• Confirmed prenatal exposure to alcohol
or drugs but no
› Current growth deficits
› Central nervous system abnormalities
or developmental delays
› Medical note of dysmorphia
+Monitor
• Rationale
› A child whose mother has a history of drug or
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alcohol use is at risk for an FASD.
Early diagnosis leads to early intervention, which can
lessen the impact of long-term disabilities.
FASD diagnostic resources are limited.
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• Tracking
› Every 3 months per subcontract standards
› At any other times workers and family find
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appropriate
With routine reporting schedule
FASD Service Integration
• Integration supported by subcontract
requirements
• Coordination among multiple service
providers
• Shared case management
*Handout with subcontractor descriptions
Outcome Objectives of FASD
Initiative
• Outcomes from all subcontractors:
› Placement stability in home setting
› Improved school performance
• Other outcomes from subcontractors:
› Reduction of stress on caregivers
› Placement stability in daycare or
preschool facilities
FASD Diagnostic Capacity
• Ensure adequate diagnostic and monitoring
capacity before deciding to perform screening
for an FASD in children.
• Do not allow demand for FASD screening to
exceed diagnostic capacity.
• Verify that the diagnostic center and team are
willing to diagnose an FASD in a child age 0-3
years.
• Know the FASD diagnostic criteria used.
Questions and Answers
Child Guidance Center, Inc.
Jacksonville, Florida
Model FASD Service Provider
Case Study
• R is a 7 year old Caucasian male who lives with his biological
mother, her paramour and three siblings.
• Mother reports that she drank before she knew that she was
pregnant.
• R was referred for home counseling because of a Child
Welfare report due to environmental hazards and inadequate
supervision.
• Investigation revealed that R had been exposed to significant
domestic violence during the first five years of his life.
Child Guidance Center
• 501 (c)(3) private not-for-profit
organization
• Accepts Medicaid as well as other
insurances
• Serves more than 5,600 children per year
• Has mission to provide quality mental
health and social services to children and
their families, supported by the FASD
Center project
Services of Child Guidance
Center
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Outpatient counseling
In-home and school-based counseling
Mental health case management
Psychiatric services
Daycare consultation
Child abuse prevention
Supervised visitation
FASD Integration Into Child
Guidance Center
• Consent for screening was incorporated
into the parent orientation packet by the
Child Guidance Center.
• Policies and procedures were revised to
include FASD services at all levels.
• Children age 0-7 years receiving
behavioral health services are referred for
screening for an FASD with consent of the
caregiver.
Screening Process
• FAS Facial Analysis Software and file review
• Positive screening results: score of 3 or 4 on facial
photographic analysis or score of 2 plus
confirmation of prenatal alcohol exposure
• Referral for diagnostic evaluation
Diagnostic Team and Process
• Networking diagnostic model
• Diagnostic team includes the following:
› Licensed clinical social worker
› Psychologist
› Speech and language therapist
› Occupational therapist
› Geneticist
22 Clinical Diagnostic Categories
(4-digit code diagnostic criteria)
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Sentinel physical findings
Static encephalopathy
Neurobehavioral disorder
Alcohol (exposed, not exposed, exposure
unknown)
Fetal alcohol syndrome (alcohol exposed)
Fetal alcohol syndrome (alcohol exposure
unknown)
Partial fetal alcohol syndrome (alcohol exposed)
Fetal alcohol syndrome phenocopy (no alcohol
exposure)
Availability of Diagnostic Services in
Jacksonville
• 35 percent of children served by the
Child Guidance Center receive
Medicaid.
• Insurance (primarily Medicaid) is used
to fund most aspects of the evaluation
with referral from the primary care
provider.
› Medicaid is a State-based program.
› Florida has 10 Medicaid health
maintenance organization (HMO) pilot
projects.
• Part B and Part C providers for the
Individuals with Disabilities
Education Act (IDEA) also provide
diagnostic services.
Designing Interventions for Children
With Diagnosis of an FASD
• Children with FAS [or another…] FASD,
have a degree of differences in their brains; it
logically follows that they could benefit from
what others with more obvious handicapping
conditions are provided—ENVIRONMENTAL
ADAPTATIONS.
• Remove cognitive barriers: prevent those in
cognitive wheelchairs from being asked to
perform cognitive high jumps.
› Diane Malbin
Designing Interventions
• Keep information concrete.
• Determine whether poor behavior is a physically
based unmet need or intentional misbehavior.
• Be consistent.
• Use repetition.
• Establish stable routines.
• Keep it short and sweet.
• Be specific—say exactly what you mean.
• Create structure.
• Provide supervision.
• Treatment planning should:
› Develop a comprehensive report and recommendations.
› Share the report and recommendations.
› Adjust approaches and add services.
Sensory Integration
• Impacts
› Concentration and organization
› Academic learning ability
› Capacity for abstract reasoning
› Specialization of each side of the body and
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brain
Self-esteem
Self-control
Normal vs. Disordered
Sensory Integration
Source: Dorothy Schwab
What Works?
• Traditional talk therapy is not helpful due to the
language, memory, and attention problems
typical of individuals with an FASD.
• Psychotherapy with adaptations can be
beneficial.
• Creativity, persistence, and clinical intuition are
essential.
• Client-centered care is important.
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Focusing on concrete issues 
Dealing with the disabilities
Supporting the person
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Taking a multidisciplinary
approach
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Using family therapy
Use role-playing.
Use short sentences and
concrete examples.
Present information in
multiple modes.
Give simple step-by-step
instructions; pictures are
often helpful.
Project Data
• Screening, Diagnosis, and Intervention
subcontract with Northrop Grumman during
2008-2012
• Results from November 1, 2008, through May
31, 2011:
› 540 screenings
› 59 positive screenings
› 35 diagnostic evaluations
› 31 children with diagnosis of an FASD
Questions and Answers
Keys to Developing
Processes and Procedures
for Assessing for FASD
Keys to Developing FASD
System of Care for Children
• Incorporate FASD screening into
existing service delivery systems.
• Ensure diagnostic capacity.
• Build on or establish a collaborative
relationship with service delivery
systems.
• Increase knowledge and skills about
FASD and screening skills.
Integrate FASD Screening Into
Existing Systems
• Plan to avoid stand-alone programs,
because they are difficult to sustain.
• Build on existing collaborations and
systems of care.
• Perform screening for children in the
population with high risk of alcohol
exposure.
Build Relationships With Service
Delivery Systems
• Develop monitoring capability or collaborate with
an existing agency to provide and monitor services.
• Engage caregivers in the monitoring process.
• Determine how provision of services will benefit
the service delivery agency or, if internal, the staff.
• Build FASD diagnostic capacity
› Ensure adequate diagnostic capacity to meet the
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screening demands.
Verify that the diagnostic center and team are willing to
work with children age 0-3 years to perform diagnosis.
Include the diagnostic staff as critical partners on the
team.
FASD Awareness and Training
• Build and expand FASD awareness to
increase buy in of the agency and
individual staff.
• Train intake and assessment workers to
screen for an FASD.
• Change agency forms to include
questions about prenatal alcohol
exposure.
Staff Training – Child Guidance
Center
• Provide formal and informal trainings that
incorporate the following:
› Occupational therapy
› Social skills training
› Parent support and
education
What We Hope To Learn
• How to design interventions around the
child’s strengths and abilities
• How to achieve efficacy by introducing
different components into treatment
modalities
Opportunities for Integration of
FASD Services at Age 0-7 Years
• Courts and child welfare systems—children
who enter the foster care and adoption system
• Compliance with the Child Abuse Prevention
and Treatment Act beginning at birth
• Home visiting programs for high-risk births
• Children in programs such as mental health and
Head Start
SAMHSA FASD Center for Excellence
Task Order Officer: Jon Dunbar-Cooper
Project Director: Callie B. Gass
2101 Gaither Road, Suite 600
Rockville, MD 20850
1-866-STOPFAS (786-7327)
http://www.fasdcenter.samhsa.gov/