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Evidence-Based Interventions for Children with FASD
webinar
Hosted by Formed Families Forwardwww.FormedFamiliesForward.org
Who we are…Formed Families Forward's mission is to improve developmental, educational, social, emotional and post-secondary outcomes for children and youth with disabilities and other special needs through provision of information, training and support to adoptive and foster parents, and kinship caregivers. We provide: In-person trainings (we sponsor and we come to you!) Webinars Fact sheets and other resources; Updated Resource Directory! Stronger Together- Youth/YA peer support group; parent/caregiver
support group, Tuesday evenings in Fairfax Direct support- consultations by phone & in person Youth LifeSkills classes; Parenting Wisely classes Connecting families to resources www.FormedFamiliesForward.org
Upcoming Trainings
● Next FASD Webinar: FASD from a Trauma Lens, 6:30 – 8 PM on Tues, February 11
● Critical Decision Points for Families of Children with Special Needs, 9:30 AM- 2 PM on February 20 at Prince William Co Public Schools Parent Resource Center
● Loudoun Connect: Refresh Your Parenting and Problem Solving Tool Kit at ALLY Center, Leesburg, February 24, 6- 8 PM
● Spring Forward Foster, Adoptive and Kinship Family Fun Day, May 2 at GMU Manassas
Other requests!
● Use Chat Box to communicate, ask questions, comment.● Download slides from side panel.● Complete Evaluation at conclusion of the webinar● If you need a certificate of completion, email
Lisa.Mathey@formedfamiliesforward.org● Like us on Facebook!
https://facebook.com/FormedFamiliesForward● Suggestions for other topics of interest – let us know!
info@formedfamiliesforward.org
Interventions for Children with FASD
Molly N. Millians, D.EdDepartment of Psychiatry and Behavioral Sciences, Emory University
Formed Families Forward Webinar16 January 2020
Who we are...The Center for Maternal Substance Abuse and Child Development
Developmental and Intervention
Research
Prevention Clinical
Center for Maternal Substance Abuse and Child Development, Department of Psychiatry and Behavioral
Sciences, Emory University School of Medicine
Since 1980, under the direction of Claire D. Coles, Ph.D., the focus of MASCD has been to better understand and improve the lives of those affected by prenatal exposures.
Aims of the Webinar
1. To provide an overview of some of the research based interventions found effective for children with FASD.
2. To discuss the elements of effective interventions for children with FASD.
Results from animal and human studies converge on evidence of the harmful effects from prenatal alcohol exposure
2012 Statements from American Bar Association and American Academy of Pediatrics
2013, DSM-5, Appendix NDPAE
Brief History of FASD Research and Clinical Services
Fetal Alcohol Spectrum Disorders
Fetal Alcohol Syndrome (FAS) ICD-10 Code: Q86.0
Partial Fetal Alcohol Syndrome (pFAS)
ICD-10 Code: Q86.0
Neurodevelopmental Disorder, Prenatal Alcohol Exposure
(ND-PAE) ICD-10 Code: F88
DSM-V Code: 315.8
Umbrella term, not a clinical diagnosis
Clinical and Diagnostic Terms Used in the United States
www.aap.org/fasdClinical diagnoses
Fetal Alcohol Syndrome (FAS)
Partial Fetal Alcohol Syndrome (pFAS)
Alcohol Related Neurodevelopmental Deficit (ARND)
Neurodevelopmental Disorder Associate with Prenatal Alcohol Exposure (ND-PAE)
FAS Criteria: 1) Confirmed Alcohol Exposure*, 2) Facial Features, 3) Growth Deficits, and 4) Cognitive and Behavior Impairments.
pFAS Criteria: 1) Confirmed Alcohol Exposure, 2) Cognitive and Behavioral Impairments, and 3) Either Facial Features or growth deficits.
ARND Criteria: 1) Confirmed Alcohol Exposure, and 2) Cognitive Impairment.
ND-PAE Criteria: 1) Confirmed Alcohol Exposure, 2) Impairments in Cognition, Behavior and Adaptive Functioning
Full spectrum
NeurobehavioralBertrand, 2004; Kable et al., 2015; Coles et al., 2016, Kable & Coles, 2018
Diagnosing the Effects from Prenatal Alcohol Exposure ENEC Clinic
*A diagnosis of FAS may be givenwithout confirmed alcohol exposure ifdysmorphia, growth deficits, andneurobehavioral impairments arepresent. The deficits cannot beattributed to any other developmentdisability or medical condition.
Evaluations \conducted by an interdisciplinary team with a trained medical doctor, psychologists, and other specialists
FASD: Overlooked or misdiagnosis? May et al., 2018 “Prevalence of Fetal Alcohol Spectrum Disorders in 4 US Communities”, JAMA, Vol. 319 (5)
● Conservative prevalence estimation, 11.3 to 50.0 per 1,000
Chasnoff et al. 2015 “Misdiagnosis and Missed Diagnosis in FASD”, Pediatrics, Vol. 135 (2)
● Out of 156 children, 125 had never been diagnosed as affected by prenatal alcohol exposure, a missed diagnosis rate of 80.1%
● 31 who had been recognized before referral as affected by prenatal alcohol exposure, 10 children’s FASD diagnoses were changed within the spectrum, representing a misdiagnosis rate of 6.4%
● 21 (13.5%) children’s diagnoses stayed the same
Within this clinical sample, 86.5% of youth with FASD had never been previously diagnosed or had been misdiagnosed
Without appropriate diagnosis and interventions, individuals with FASD are at high risk for● School problems or school failure ● Underemployment or unemployment ● Mental health problems● Social problems ● Involvement with juvenile justice or criminal justice
*This is in addition to risks associated with childhood adversity (Mukherjee, Cook, Norgate, & Price, 2019)
Factors leading to better outcomes for individuals with FASD● Early diagnosis and access to interventions ● Developmentally appropriate interventions
across life-span ● Stable caregiving environment and supportive
network of adults and later peers
Neurobehavioral Deficits and FASD
Caring for Children with FASD
Children with FASD may have problems in one or more the following areas that require interventions
Medical/Health Development/Cognition
Social/Emotional/Behavior
Academic/Vocational
CardiologyNeurology
Feeding Issues
Developmental Assessments
OT/SLP Habilitation Services
Parent EducationBehavior Management
Psychiatry Social Skills
Special Education Modified Programs
Vocational Rehabilitation
Medical/Health/ Motor Problem Area Treatment Need
Growth Delays Most are benign. Some require supplemental or enteral feedings. In some cases, may require working with an endocrinologist.
Hearing Vulnerability to ear infections- cranial facial malformation and immune system alterations. In some cases, hearing loss. ENT and audiology care may be required.
Vision Acuity problems; Strabismus (problems aligning eyes); Amblyopia (lazy eye). Increased need for vision exams; ophthalmology care. In some cases, surgical interventions.
Dental Cranial facial abnormalities may lead to dental crowding requiring orthodontial care.
Cardiac Benign heart murmurs. In some, serious cardiac malformations mayoccur and require cardiology.
Motor Delays in gross and fine motor development. May require occupational therapy, physical therapy, and/or orthopedic care.
Parent Education Programs about FASD
Development of a Mobile Application for Families of Children with FASD
Adaptation of the Families Moving Forward (FMF) Program
Behavioral Regulation/Self-Regulation
Behavior and Self-Regulation Continued
Social Skills and Adaptive Functioning Authors Program/Skill Sample Treatment Result
O’Connor et al., 2006 Social Skills 100 children in US6-12 years of age
Bruin Buddies (aka. Best Buddies) social skills training (www.bbucla.comi)
Parent report - improved social skills/reduced problem behaviors
Keli et al., 2010 Social Skills 100 children in US6-12 years of age
Bruin Buddies social skills training program
Less hostile attributes in social situations
O’Connor et al, 2012 Social Skills 85 children in US6-12 years of age
Children’s Friendship Training
Improved prosocial behavior. Parent report-improved social skills
Coles, Strickland, Padgett, & Belmoff
Fire and street safety 32 children in US4-10 years of age
Virtual reality game Immediate knowledge of street crossing safety and fire safety
O’Connor et al, 2016 Reduce alcohol consumption in teens with FASD
54 teens in USMean age 15 years
6-60 minute clinical sessions and caregiving training
Teens in treatment group more likely to refrain from alcohol use
MILE and GOFAR Programs
Investigators: Julie Kable, Ph.D; Claire Coles, Ph.D., & Elles Taddeo, Ed.DFAS Clinic at the Marcus Center and the Maternal Substance Abuse and Child Development Program, Department of Psychiatry
MILE was funded by
Behavioral Regulation Training Incorporates typical behavioral management training principles into the context of dealing with the neurodevelopmental damage associated with prenatal alcohol exposure that interferes with learning and compliance
GoFARPurpose of Program:
● Developed intervention to address the affective and cognitive control deficits exhibited by children with neurodevelopmental deficits associated with prenatal alcohol exposure
● Conducted through the use of a serious computer game alongside parent and child therapeutic sessions
Kable, Taddeo, & Strickland, 2015
Metacognitive Technique of FAR
Focus and Plan
Act Reflect
Focus and Plan
Act Reflect
Entire session or “macrolevel”
Task level or “microlevel”
GoFAR Sample
GoFAR Intervention
GoFAR Results: Parent Training ● Improvement in children’s regulation of attention in relation to therapist’s
achievement of therapy goals across sessions.
● A trend was identified between therapists’ ratings of parents’ achievement of therapy goals and reduction of children’s destructive behavior.
● A significant treatment group effect was found on change in sustained mental effort. Children in the GoFAR group showed greater reduction in problems with sustained mental effort than those FACELAND group.
GoFAR Results: Behavior Regulation Training
GoFAR Results: Changes in Domestic Living Skills
GoFAR Results: Improvements with Attention
Summary of GoFAR● Learning to use FAR either through sessions or on computer resulted in improvements of parent
reported disruptive behavior.
● Children in both GOFAR and FACELAND groups showed reduction in negative affectivity.
● Children in both groups showed improvements in sustained attention.
● Children in both groups showed improvements in domestic living skills.
Math Interactive Learning Experience (MILE)Designed for children affected by prenatal alcohol exposure, ages 3-10 years
Goals of the Study ● Support, educate, and empower caregivers
of children with FASD● Improve learning readiness
(behavioral/arousal regulation)● Improve academic achievement in a known
area of deficit
MILE Procedures and Intervention Procedure
● Children assigned to math intervention or no intervention group
● Pre-test, Post-test to assess results● All caregivers received training on FASD
Math Intervention
● Developed from High Scope ● 6 weeks of 1:1 tutoring with coordinating parent
training ● Homework activities ● FASD presentations to children’s teachers ● Special educator consultations
Curriculum Page
Parent Activity Page
MILE Instructional Approaches
Example of Changes in Number Writing
Number Writing Measure Pre-Test Child: 6 years, 1 month
Number Writing Measure Post-Test Child: 6 years, 1 month
MILE Mathematics Outcomes
Kable, Coles, & Taddeo, 2007; Coles, Kable, & Taddeo, 2009
MILE Mathematics Outcomes
Kable, Coles, Taddeo, 2007; Coles, Kable, Taddeo, 2009; Kable, Coles, Taddeo, & Strickland, 2015
MILE Outcomes: Caregiver Behavioral Ratings
Kable, Coles, & Taddeo, 2007
Caregivers Responses
MILE Outcomes: Parent/Teacher Behavioral Ratings
Canadian MILE Research Carmen Rasmussen’s research group at the University of Alberta
MILE without Parent Component MILE in Small Group
Saturday Cognitive Habilitation Program
Goals: ● To improve academic achievement in either reading or mathematics ● To apply strategies used in MILE to address learning problems in older children
*Program did not include a parent component like MILE
Participants:● 5 children, ages 10 years, 6 months to 13 years, 8 months with prenatal alcohol exposure ● Cognitive and academic functioning were in the Deficient to Low Average range ● Participants received 12-15 weeks of 1:1 interventions for 50 minutes each session
Millians & Coles, 2015
Saturday Cognitive Habilitation Program Interventions
● Metacognitive Training
● Reading ○ Phonological and Strategy Training
(PHAST) (Lovette, Lacerenze, & Bordern, 2000)
○ Guided Reading (Fountas & Pinnell, 2000)
● Mathematics○ Adaption of MILE (Kable, Coles, &
Taddeo, 2000)
Metacognitive Training
● Plan-Do-Review/ Self-questioning○ Plan: Do I know what to do? What looks
familiar? Do I need to ask for moreinformation?
○ Do: How am I doing? Is my strategyworking? Do I need to change mystrategy?
○ Review: How did I do? What do I need toremember for next time?
● Questioning for Cognitive Shifts○ If a child solved a problem correctly, the
instructor stated, “I agree with your answer.How do I know it is correct?”
○ If a child solved a problem incorrectly, theinstructor identified the error and asked,“Why do I think it is incorrect?”
Hohmann, Weikart, 1995; Crowley, Shrager, & Siegler, 1997
Saturday Cognitive Habilitation Program Pre-Post Test Results
Millians & Coles, 2015
Building Academic Skills in Children with FASD
Key Features to Improve Learning
● Appropriate environment● Simplified learning environment● Reduce chances of failure or making wrong choices,
“errorless learning” (rule of thumb, 80% success rate of learning opportunities)
● Monitor arousal and teach in “calm alert states”
Millians & Coles, 2015
Collaborative Care for Children with FASD
Elements of Effective Interventions for Children with FASD
There is no one intervention method or approach to meet the needs of children affected by prenatal alcohol exposure.
Elements of Effective Interventions
● Based upon each child’s developmental, cognitive, and/or learning profile ● Developmentally appropriate ● Presented on the each child’s learning level● Focus on the habilitation of skills - including coping and self-advocacy ● Embed the intervention to address the deficit within context for application ● Collaboration between home, providers, and school
Elements of Effective Interventions for Children with FASD
● Some interventions may be derived from other disciplines or found effective for children with other developmental disabilities
Conclusion● Children with FASD are at high risk for lifelong
challenges.
● In some cases, the risks are compounded byenvironmental factors including multiple fosterplacements, limited access to supports, andgenetic and medical influences.
● Early intervention is important. But, manyindividuals with FASD may require lifelonginterventions.
● Intervention planning needs to consider theindividuals needs.
● With appropriate interventions, individuals withFASD can succeed.
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