The Massachusetts Integrated Partnership for FASD

1. The Massachusetts Integrated Partnership for FASD Kelly Casey, PhD Executive Director of the Brenner Center,William James College Lisa Albers Prock,MD,MPH, FAAP Children’s Hospital, Boston

2. A Brief History

3. A Brief History Dr. Lisa Prock

4. Rapid and Accurate Diagnosis of FASD Other Diagnosis unless physical findings present Documented Prenatal Alcohol Exposure? NO YES Other Diagnosis/ PossibleARBD NO Neuropsychological Evaluation Consistent with FASD? NO WilliamJames.edu/FASD YES Fetal Alcohol Diagnoses (FASDs) May Qualify for: May Qualify for: FAS: Fetal Alcohol Syndrome: severe behavioral deficits and hallmark physical malformations PFAS: Partial Fetal Alcohol Syndrome: moderate to severe behavioral deficits and some malformations ARND: Alcohol-Related NeurodevelopmentalDisorder: mild to severe behavioral deficits without notable physical malformations ND-PAE: Neurodevelopmental Disorder – Prenatal Alcohol Exposure: similar to ARND (above) ARBD: Alcohol-Related Birth Defects (generally, without behavioral deficits) YES FAS NO Dysmorphology Exam: Hallmark Facial Features? ARND PFAS ND-PAE

5. Brenner’s FASD Training & Testing • Pre-doctoral interns: • maternal alcohol histories. • supplementary and support training • individual & group supervision. • Post-doctoral fellows and supervisors: • University of Washington training • ND-PAE, Institute of Medicine’s diagnostic categories , & 2016 Updated Guidelines for diagnosing (Hoyme et al.). • Testing is done for a wide range of domains (intellectual, language, executive functioning, adaptive, educational, attention, social/emotional, memory, etc.) • FASD resource library and bibliography updated annually.

6. The Massachusetts Integrated Partnership for FASD( The Medical Perspective) Lisa Prock, MD, MPH Director, Adoption Program, Developmental Medicine Center Clinical Director, Translational Neuroscience Center Boston Children’s Hospital & Harvard Medical School

7. FASDs: Diagnostic Considerations When do we consider making a diagnosis of FASD, etc? ASK about possible exposure Stigma is prevalent and mothers may not spontaneously report Consider the possibility in a chaotic, neglectful environment Appreciate that ~ 75% of individuals with FAS are involved with the child welfare system

8. Prenatal Substance Exposure Effects Rarely occurs in isolation… co-mingles with maternal stress, neglect Impact depends on MANY factors Type of substance e.g. alcohol, cocaine, heroin, marijuana, cigarettes Frequency, quantity & timing of use Sensitivity or resilience of child Co-morbid factors - Maternal health & nutrition - One or multiple substances – synergistic effects? - High stress (eg domestic violence, trauma history)

9. Prenatal Alcohol Exposure… some terms… Fetal Alcohol Spectrum Disorders (FASD) Classic Fetal Alcohol Syndrome (FAS) or Partial FAS (pFAS) Dysmorphic facies, growth abnormalities, microcephaly, intellectual impairments (intellectual disability, borderline cognitive abilities) Alcohol-related neurodevelopmental disorder (ARND) and/or birth defects (ARBD) DSM 5 – Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure (ND-PAE)

10. Who cares about what definition??? • Medical world – billing codes • Primarily use FAS or FASD (ND-PAE links) for billing purposes • Important to include other dx (eg ADHD, LD, mood, ID, RAD) if pertinent • Educational/Developmental Disabilities/Mental Health support • IEP requires fit in one of 9 designated educational categories • Dx may fit under medical, learning or other – neuropsychological/neurodevelopmental profile dependent • IMPORTANT TO INCLUDE ALL ADDITIONAL RELEVANT DIAGNOSES… ADHD, LD, Mood disorder, etc • Long-term(Legal, DDS, DMH) – it’s about the secondary features

11. Signs & Symptoms of Prenatal Alcohol Exposure - DIAGNOSIS • Growth? • Facial features? • Neurocognitive outcomes? 4. History of maternal use (reported or observed)

12. Signs & Symptoms of Prenatal Alcohol Exposure - GROWTH • Weight and/or Height and/or Head Circumference < 10% - May see relative microcephaly (head % less than body percentile) • Growth retardation may occur at birth or after • Often decreased adult height with FASD • Possibly increased wt for ht in adolescence

13. Classic FAS/FASD Facial features – 3 critical features

14. Signs & Symptoms of Prenatal Alcohol Exposure – FACE

15. Features Evolve Over Time

16. Note: Facial features are NOT diagnostic Differential diagnosis might include: • Williams Syndrome • Velocardial facial syndrome (VCFS) • Range of other rare genetic disorders Consider genetic assessment/evaluation….

17. Signs & Symptoms of Prenatal Alcohol Exposure - CNS CNS findings of alcohol exposure may include: • Relative microcephaly (small head compared with body) • Developmental delays • Hyperactivity/impulsive • Decreased social awareness • Cognitive impairments Mean IQ of FAS population is 85 Note: All of these finding are non-specific and may occur WITHOUT alcohol exposure

18. Prenatal Alcohol Exposure – Treatment Considerations Meet child at level of functioning Social/emotional skills may be << IQ IQ is not always reflective of ‘common sense’ Focus interventions on Maintaining safety Behavioral strategies Medications to address attention, mood or aggression as indicated Preventing secondary concerns Mood concerns, behavior problems, pregnancy

19. STEP 3: Diagnosis, Services, and Support Brenner Assessment Center - Neuropsychological Assessment for FASD - Psychological Assessment for FASD • Physician with FASD Specialization • - Assessment for FASD facial dsymorphology • Assessment for Alcohol-Related birth defects • Poor Growth and other medical findings Positive Diagnosis for an FASD WilliamJames.edu/FASD Massachusetts FASD State Coordinator Integrated FASD Partnership • Our Integrated partnership coordinates professionals across disciplines and affiliations to provide rapid and accurate diagnosis and connection to effective services. • The Brenner Assessment Center provides diagnosis based on the latest medical and psychiatric criteria • A physician with specialized training in FASD assesses for hallmark FASD dysmorphologies • The Massachusetts FASD State Coordinator connects individuals and families with services, supports, and advocacy organizations Parent and Family Support and Advocacy Groups Institute for Health & Recovery (IHR) - Behavioral Health Treatment - Training and Education - Trauma-informed Services massFAS - Working to secure state- based services for those with an FASD

20. Future Goals of the Partnership • Add a medical provider to assess adults • Include FASD informed speechand occupational therapists in the partnership • The ability to offer clients appropriate services after an FASD dx is made ( vocational, independent living, counseling, case management, legal, etc). • The ability and funding to offer a mobile diagnostic clinic with an interdisciplinary staff that can service other parts of MA • To advocate for better benefits and services at the state and federal levels • To educate courts, school systems and others on the disorder so that other systems are better able to work with individuals with FASD

21. Why is this important to legal professionals • As you will hear in more detail, individuals with FASD can have a variety of impairments and difficulties that make them more vulnerable to court involvement. • They can also have differences in the way they communicate, process information, learn, and understand questions that you would want to recognize when working with them. • Case Example: John Doe’s Risk assessment and ability to remain in his residential school.

22. Update from Enid …

23. Thank you and questions??? Challenges… Opportunity…