WorkingWorking withwith WomenWomen WhoWho HaveHave FASD:FASD: HowHow DoDo WeWe MeetMeet thethe Challenge?Challenge?

Auckland, New Zealand April 16, 2008

Therese M. Grant, Ph.D. University of Washington School of Medicine Department of Psychiatry and Behavioral Sciences TT ee rr aa tt oo gg ee nn ss

ƒƒ SubstancesSubstances thatthat havehave thethe potentialpotential toto damagedamage thethe fetusfetus whenwhen exposureexposure occursoccurs duringduring pregnancypregnancy (e.g.,(e.g., radiation,radiation, thalidomide,thalidomide, alcohol).alcohol). ƒƒ DegreeDegree ofof damagedamage dependsdepends onon timingtiming andand dosedose ofof exposure.exposure. ƒƒ IfIf timingtiming andand dosedose areare belowbelow thethe teratogenicteratogenic threshold,threshold, somesome exposuresexposures havehave littlelittle riskrisk ofof causingcausing malformation.malformation. PrenatalPrenatal AlcoholAlcohol ExposureExposure

AlcoholAlcohol isis aa teratogenteratogen PrenatalPrenatal AlcoholAlcohol ExposureExposure

•• EffectsEffects havehave beenbeen demonstrateddemonstrated inin animalsanimals andand humanshumans •• NeurobehavioralNeurobehavioral effectseffects havehave beenbeen foundfound toto bebe moremore injuriousinjurious andand longlong--lastinglasting thanthan cocainecocaine andand otherother drugsdrugs abusedabused prenatallyprenatally.. TeratogenicTeratogenic EffectsEffects ofof PrenatalPrenatal AlcoholAlcohol ExposureExposure •• DirectDirect toxictoxic effecteffect ofof alcoholalcohol onon cellscells •• HypoxiaHypoxia (i(inadequatenadequate oxygenationoxygenation ofof blood)blood) duedue toto impairedimpaired placental/fetalplacental/fetal bloodblood flowflow •• EffectEffect onon cellcell migrationmigration inin thethe brainbrain •• EffectEffect onon apoptosisapoptosis (a(a naturalnatural processprocess ofof programmedprogrammed cellcell death)death) FetalFetal AlcoholAlcohol SyndromeSyndrome

•• AA permanentpermanent birthbirth defectdefect causedcaused byby maternalmaternal alcoholalcohol useuse duringduring pregnancypregnancy •• TheThe leadingleading preventablepreventable causecause ofof mentalmental retardationretardation inin thethe WesternWestern worldworld •• Annually:Annually: 40,00040,000 infantsinfants bornborn withwith FASDFASD (more(more commoncommon thanthan MuscularMuscular Dystrophy,Dystrophy, CysticCystic Fibrosis,Fibrosis, DownsDowns SyndromeSyndrome andand SpinaSpina BifidaBifida combined)combined) Growth Specific Pattern ofof Deficiency FAS Facial Anomalies

CentralCentral NervousNervous SystemSystem DysfunctionDysfunction OrganicOrganic BrainBrain DamageDamage

•• Hyperactivity,Hyperactivity, attentionattention deficitsdeficits •• IntellectualIntellectual deficits,deficits, learninglearning disordersdisorders •• ProblemsProblems withwith memory,memory, languagelanguage && judgmentjudgment •• DevelopmentalDevelopmental delay,delay, microcephalymicrocephaly •• FineFine && grossgross motormotor problems,problems, seizureseizure disorderdisorder •• MentalMental retardation,retardation, structuralstructural brainbrain damagedamage

FetalFetal AlcoholAlcohol SpectrumSpectrum DisordersDisorders (FASD)(FASD) cancan bebe

““HiddenHidden DisabilitiesDisabilities”” FASD

CentralCentral NervousNervous SystemSystem DysfunctionDysfunction OrganicOrganic BrainBrain DamageDamage •• Hyperactivity,Hyperactivity, attentionattention deficitsdeficits •• IntellectualIntellectual deficits,deficits, learninglearning disordersdisorders •• ProblemsProblems withwith memory,memory, languagelanguage && judgmentjudgment •• DevelopmentalDevelopmental delay,delay, microcephalymicrocephaly •• FineFine && grossgross motormotor problems,problems, seizureseizure disorderdisorder •• MentalMental retardation,retardation, structuralstructural brainbrain damagedamage FASD:FASD: ClinicalClinical ImplicationsImplications

PoorPoor judgmentjudgment ……………………EasilyEasily victimizedvictimized AttentionAttention deficitsdeficits ………………UnfocusedUnfocused // distractibledistractible ArithmeticArithmetic disabilitydisability ……..Can..Can’’tt handlehandle moneymoney MemoryMemory problemsproblems …………..Doesn..Doesn’’tt learnlearn fromfrom experienceexperience DifficultyDifficulty abstractingabstracting …….Doesn.Doesn’’tt understandunderstand consequencesconsequences DisorientedDisoriented inin ……………………..Fails..Fails toto perceiveperceive socialsocial cuescues timetime andand spacespace PoorPoor frustrationfrustration ………………..Quick..Quick toto angeranger tolerancetolerance

PREVALENCE OF SECONDARY DISABILITIES Across the Life Span

100 Ages 6 - 51 Ages 21 - 51 90

80

70

60 % 50

40

30

20

10

Mental Health Trouble With Inappropriate Dependent Problems the Law Sexual Behavior Living Disrupted School Confinement Alcohol & Drug Problems with Experience Problems Employment

Ages 6-51 (n=408-415) Ages 21-51 (n=89-90) WorkingWorking withwith WomenWomen WhoWho HaveHave FASD:FASD: “Prevent“Prevent DoubleDouble--Jeopardy”Jeopardy”

WithWith thanksthanks toto thethe MarchMarch ofof DimesDimes BirthBirth DefectsDefects FoundationFoundation forfor fundingfunding (2001(2001--2002)2002) Aims:Aims: ToTo describedescribe thethe mentalmental health,health, psychosocialpsychosocial functioning,functioning, andand qualityquality ofof lifelife ofof 1919 youngyoung womenwomen withwith diagnoseddiagnosed oror suspectedsuspected FASD.FASD.

ToTo shareshare lessonslessons learnedlearned inin developingdeveloping aa pilotpilot communitycommunity interventionintervention toto treat,treat, support,support, andand meetmeet thethe complexcomplex needsneeds ofof thesethese women.women. TheThe IdeaIdea forfor thethe PilotPilot StudyStudy

TwoTwo UWUW programs:programs: FetalFetal AlcoholAlcohol andand DrugDrug UnitUnit ParentParent--ChildChild AssistanceAssistance ProgramProgram

Hypothesis:Hypothesis: OurOur combinedcombined expertiseexpertise onon FASDFASD andand onon interventionsinterventions withwith highhigh--riskrisk womenwomen couldcould bebe appliedapplied toto thethe FASDFASD population.population. ParentParent--ChildChild AssistanceAssistance ProgramProgram (PCAP)(PCAP)

Advocate/Advocate/ CaseCase ManagerManager

ClientsClients && CommunityCommunity FamiliesFamilies ServiceService ProvidersProviders TheThe PCAPPCAP CaseCase ManagerManager •• WorksWorks withwith aa caseloadcaseload ofof 1616 familiesfamilies •• HelpsHelps clientclient identifyidentify personalpersonal goals,goals, coordinatescoordinates thesethese withwith programprogram goalsgoals •• CollaboratesCollaborates withwith networknetwork ofof providersproviders toto developdevelop aa specificspecific serviceservice planplan •• ConnectsConnects clientsclients withwith services,services, monitorsmonitors progressprogress •• AssuresAssures thatthat clientsclients’’ childrenchildren areare inin safesafe stablestable homehome environmentsenvironments •• HelpsHelps clientclient familiesfamilies buildbuild andand maintainmaintain healthyhealthy andand independentindependent liveslives PilotPilot StudyStudy MethodsMethods ParticipantsParticipants werewere •• RecruitedRecruited throughthrough communitycommunity referralreferral •• EnrolledEnrolled inin 33--yearyear PCAPPCAP andand assignedassigned toto aa casecase managermanager whowho delivereddelivered homehome visitationvisitation andand interventionintervention services.services. •• WomenWomen whowho hadhad FASDFASD werewere invitedinvited toto participateparticipate inin thethe “nested”“nested” FASDFASD 1212--monthmonth pilotpilot studystudy (N=19).(N=19). PsychosocialPsychosocial CharacteristicsCharacteristics

• 11 had FASD diagnosis; 8 had suspected FASD • Average age = 22 years (range 14-36) • Mostly white (60%), unmarried (85%), poorly educated (mean = 9.9 yrs) • 15 have children (mean = 2.3); about half of the children do not live with mother TroubledTroubled childhoodchildhood •• FamilyFamily historyhistory drug/alcoholdrug/alcohol abuseabuse (100%)(100%) •• UnstableUnstable andand disrupteddisrupted carecare givinggiving (100%)(100%) •• PPhysicalhysical abuseabuse (84%)(84%) •• SSexualexual abuseabuse (79%)(79%) TroubledTroubled adulthoodadulthood •• Alcohol/illegalAlcohol/illegal drugdrug useuse (84%)(84%) •• HistoryHistory ofof incarcerationincarceration (68%)(68%) •• DiagnosedDiagnosed psychiatricpsychiatric conditioncondition (59%)(59%) Bipolar (42%) Depression (25%) •• ChronicChronic medicalmedical conditioncondition (47%)(47%) BriefBrief SymptomSymptom InventoryInventory

BSI:BSI: 5353--itemitem checklistchecklist measuremeasure ofof psychiatricpsychiatric distress.distress. YieldsYields 99 primaryprimary symptomsymptom dimensionsdimensions andand aa GlobalGlobal SeveritySeverity IndexIndex (GSI).(GSI).

TheThe 99 symptomsymptom dimensionsdimensions:: SomatizationSomatization,, ObsessiveObsessive--Compulsive,Compulsive, InterpersonalInterpersonal Sensitivity,Sensitivity, Depression,Depression, Anxiety,Anxiety, Hostility,Hostility, PhobicPhobic Anxiety,Anxiety, ParanoidParanoid Ideation,Ideation, PsychoticismPsychoticism BriefBrief SymptomSymptom InventoryInventory Results:Results: •• OverOver 1.51.5 sdsd aboveabove thethe meanmean onon 66 ofof 99 primaryprimary symptomsymptom dimensionsdimensions (higher scores are worse)

•• MeanMean == 69.569.5 onon thethe GSIGSI [GSI[GSI >> 6363 presumespresumes aa psychiatricpsychiatric diagnosis,diagnosis, indicatesindicates needneed forfor inin--depthdepth psychiatricpsychiatric assessment.]assessment.] BriefBrief SymptomSymptom InventoryInventory WeWe comparedcompared resultsresults withwith twotwo BSIBSI referencereference samples:samples: •• aa psychiatricpsychiatric inpatientinpatient samplesample •• aa psychiatricpsychiatric outpatientoutpatient samplesample

TheThe FASDFASD andand psychiatricpsychiatric samplessamples werewere similar:similar: allall BSIBSI dimensionsdimensions andand thethe GSIGSI werewere withinwithin oneone sdsd YoungYoung AdultAdult SelfSelf--ReportReport

YASR:YASR: assessesassesses social,social, emotional,emotional, andand behaviorbehavior problems.problems. YieldsYields 88 syndromesyndrome scalesscales andand aa TotalTotal ProblemsProblems Scale.Scale.

TheThe 88 syndromesyndrome scales:scales: Anxious/Depressed,Anxious/Depressed, Withdrawn,Withdrawn, SomaticSomatic Complaints,Complaints, ThoughtThought Problems,Problems, AttentionAttention Problems,Problems, Intrusive,Intrusive, AggressiveAggressive Behavior,Behavior, DelinquentDelinquent BehaviorBehavior YoungYoung AdultAdult SelfSelf--ReportReport

Results:Results:

•• FromFrom 11 toto 1.51.5 sdsd aboveabove thethe standardizedstandardized meanmean onon allall 88 problemproblem scalesscales (higher(higher scoresscores areare worse)worse)

•• MeanMean == 6767 onon TotalTotal ProblemsProblems Scale.Scale. ScoreScore ofof 6060 oror moremore warrantswarrants furtherfurther evaluationevaluation andand discriminatesdiscriminates betweenbetween deviantdeviant andand nondeviantnondeviant groups.groups. YoungYoung AdultAdult SelfSelf--ReportReport

WeWe comparedcompared resultsresults withwith twotwo YASRYASR referencereference samples:samples: •• aa normativenormative femalefemale samplesample •• aa samplesample ofof womenwomen incarceratedincarcerated oror inin mentalmental healthhealth oror substancesubstance abuseabuse servicesservices TheThe FASDFASD samplesample hadhad higherhigher scoresscores onon allall 88 individualindividual problemproblem scalesscales andand thethe TotalTotal ProblemsProblems ScaleScale QualityQuality ofof LifeLife

WHOWHO QualityQuality ofof LifeLife (QOL):(QOL): •• AA 2626--itemitem assessmentassessment ofof QOLQOL facetsfacets acrossacross 44 domainsdomains (physical,(physical, psychological,psychological, social,social, environment)environment) thatthat areare relevantrelevant inin culturescultures worldwideworldwide •• QOLQOL isis broadlybroadly applicableapplicable acrossacross diseasesdiseases andand medicalmedical conditionsconditions QualityQuality ofof LifeLife

Results QOL scores varied little across the 4 domains (49.8 on environment to 53.8 on psychological). QualityQuality ofof LifeLife WeWe comparedcompared scoresscores withwith 33 standardizationstandardization samplessamples (healthy;(healthy; pregnant;pregnant; chronicallychronically ill):ill): •• FASDFASD scoresscores werewere lowerlower onon allall 44 domainsdomains comparedcompared toto healthyhealthy samplesample (lower(lower scoresscores areare worse)worse) •• FASDFASD scoresscores werewere lowerlower thanthan thethe 33 standardstandard samplessamples inin EnvironmentEnvironment domaindomain •• FASDFASD scoresscores werewere mostmost similarsimilar toto chronicallychronically illill samplesample

PROTECTIVEPROTECTIVE FACTORSFACTORS PreventingPreventing SecondarySecondary DisabilitiesDisabilities inin FASDFASD (N=(N= 415415 ))

MultivariateMultivariate AnalysesAnalyses ShowedShowed TwoTwo StrongStrong ProtectiveProtective Factors:Factors: •• LivingLiving inin aa stablestable && nurturantnurturant homehome •• ReceivingReceiving anan earlyearly diagnosisdiagnosis

Streissguth et al., JDBP (2004) Volume 25, 228-238 ComparedCompared toto womenwomen withwith aa confirmedconfirmed FASDFASD diagnosis,diagnosis, thosethose withwith unconfirmedunconfirmed FASDFASD hadhad moremore problemsproblems WomenWomen withwith unconfirmedunconfirmed FASDFASD WereWere moremore likelylikely to:to: •• HaveHave aa chronicchronic medicalmedical conditioncondition (60%(60% vs.vs. 30%)30%) •• BingeBinge drinkdrink (40%(40% vs.vs. 0%)0%) •• UseUse illegalillegal drugsdrugs (100%(100% vs.vs. 60%)60%) TheyThey werewere alsoalso moremore likelylikely toto bebe nonnon--whitewhite (60%(60% vs.vs. 20%)20%) UndiagnosedUndiagnosed vs.vs. DiagnosedDiagnosed

BSI:BSI: UndiagnosedUndiagnosed womenwomen scoredscored 11 sdsd higherhigher thanthan diagnoseddiagnosed onon 77 ofof 99 dimensionsdimensions andand onon GlobalGlobal SeveritySeverity Index.Index.

YASR:YASR: UndiagnosedUndiagnosed hadhad higherhigher scoresscores onon 77 ofof 99 scales,scales, particularlyparticularly onon thethe anxious/depressed,anxious/depressed, withdrawn,withdrawn, andand totaltotal problemproblem scales.scales.

QOL:QOL: UndiagnosedUndiagnosed womenwomen scoredscored atat leastleast 2020 pointspoints lowerlower allall 44 domains.domains. Treating,Treating, supporting,supporting, andand meetingmeeting thethe complexcomplex needsneeds ofof thesethese women…women…

TheThe PilotPilot CommunityCommunity InterventionIntervention knew little about FASD and its implication for practice. They had little direct experience with this patient population. improved quality of services & improved quality of services & increased access and connection to increased access and connection to those services. those services. knew little about FASD and its implication for practice. They had little direct experience with this patient population. We found that (even in Seattle) providers We knew the FASD clients needed We knew the FASD clients needed We found that (even in Seattle) providers OngoingOngoing Challenge:Challenge: GettingGetting aa DiagnosisDiagnosis

•• LittleLittle accessaccess toto diagnosticdiagnostic clinics/clinics/ assessmentassessment forfor adultsadults •• DocumentationDocumentation ofof prenatalprenatal exposureexposure isis unavailableunavailable •• FacialFacial featuresfeatures && growthgrowth deficiencydeficiency absentabsent inin adulthood;adulthood; nono childhoodchildhood photosphotos oror recordsrecords •• InabilityInability ofof clientclient toto followfollow throughthrough withwith allall thethe stepssteps required,required, withoutwithout assistanceassistance IdentifyingIdentifying ClientsClients WhoWho MayMay BeBe AffectedAffected ByBy PrenatalPrenatal AlcoholAlcohol ExposureExposure When interviewing the woman, ask: •• DidDid youryour mothermother everever havehave aa problemproblem withwith alcohol?alcohol? •• DidDid sheshe drinkdrink alcoholalcohol whilewhile sheshe waswas pregnantpregnant withwith you?you? •• DidDid sheshe drinkdrink alcoholalcohol whenwhen youyou werewere young?young? •• IsIs youryour naturalnatural mothermother alive?alive? IfIf not,not, howhow oldold werewere youyou whenwhen sheshe died?died? •• WereWere youyou raisedraised byby someonesomeone otherother thanthan youryour biologicbiologic parents?parents? Look at patterns that may indicate cognitive problems.

•• ImpulsiveImpulsive behaviorbehavior •• BehaviorsBehaviors thatthat seemseem ‘stupid’‘stupid’ •• OutOut ofof controlcontrol behaviorbehavior precipitatedprecipitated byby aa stressorstressor •• AssaultsAssaults becausebecause thethe personperson overreactedoverreacted •• CrimesCrimes asas aa secondarysecondary participantparticipant •• RepeatedRepeated minorminor offensesoffenses •• FailureFailure toto followfollow throughthrough withwith servicesservices // recommendationsrecommendations WhatWhat ifif wewe can’tcan’t getget aa diagnosis?diagnosis?

AA neuropsychologicalneuropsychological assessmentassessment isis likelike aa roadmaproadmap thatthat cancan help:help: •• toto identifyidentify cognitivecognitive andand functionalfunctional deficitsdeficits && strengthsstrengths •• toto obtainobtain disabilitydisability benefitsbenefits WhatWhat ifif youyou can’tcan’t getget aa diagnosis?diagnosis? DoDo whatwhat youyou wouldwould dodo anyway!anyway!

•• TeachTeach clientclient aboutabout herher disability.disability. •• HelpHelp thethe clientclient identifyidentify herher strengths.strengths. •• TeachTeach herher toto askask forfor helphelp fromfrom thosethose inin herher communitycommunity inin aa wayway thatthat worksworks forfor her.her. EducatingEducating Providers:Providers: AnAn ApproachApproach BeyondBeyond thethe ClassroomClassroom

WeWe identifiedidentified keykey providersproviders whowho werewere interestedinterested inin thethe problemproblem ofof prenatalprenatal alcoholalcohol abuseabuse andand itsits effects,effects, andand whowho werewere willingwilling toto workwork withwith oneone ofof ourour clientsclients asas aa casecase studystudy inin closeclose collaborationcollaboration withwith herher PCAPPCAP casecase manager.manager. ““SheShe justjust doesn’tdoesn’t getget it!”it!”

……experiencedexperienced casecase managermanager referringreferring toto herher client’sclient’s lacklack ofof comprehension,comprehension, poorpoor memory,memory, andand difficultydifficulty executingexecuting aa planplan eveneven withwith assistance.assistance. CMsCMs hadhad toto assumeassume aa farfar moremore directivedirective rolerole asas theythey helpedhelped clientsclients complycomply withwith appointmentsappointments andand recommendations.recommendations. WeWe reducedreduced thethe CMCM caseloadcaseload toto 5.5. WeWe providedprovided 33 thingsthings toto providersproviders

• FASD education (one-on-one & for the agency) • A PCAP case manager • Back-up consultation over the 12-month pilot study == FASDFASD DemystifiedDemystified CommunityCommunity professionalsprofessionals andand thethe PCAPPCAP casecase managersmanagers broughtbrought differentdifferent butbut complementarycomplementary skillsskills toto thethe intervention.intervention. CMsCMs handledhandled barriersbarriers toto treatmenttreatment (repeat(repeat scheduling,scheduling, transportation,transportation, paperworkpaperwork problems)problems) thatthat otherwiseotherwise hinderhinder successfulsuccessful serviceservice delivery.delivery. FASDFASD DemystifiedDemystified

ProvidersProviders learnedlearned toto deliverdeliver servicesservices appropriatelyappropriately tailoredtailored toto specificspecific needsneeds ofof FASDFASD patients.patients. TheyThey werewere moremore competentcompetent andand confident.confident. StrategiesStrategies WeWe TaughtTaught ProvidersProviders toto UseUse

ƒƒ ReviseRevise youryour expectationsexpectations ƒƒ It’sIt’s usuallyusually “can’t”“can’t” vs.vs. “won’t”“won’t” ƒƒ SetSet reasonablereasonable goalsgoals ƒƒ RememberRemember thisthis person’sperson’s functionalfunctional ageage ƒƒ CommunicationCommunication && vocabularyvocabulary ƒƒ AbstractAbstract vs.vs. concreteconcrete ƒƒ AbilityAbility toto functionfunction inin dailydaily lifelife ““ThinkThink YoungerYounger””

ReviseRevise expectationsexpectations toto bebe moremore congruentcongruent withwith thethe individualindividual’’ss developmentaldevelopmental levellevel ofof functioning.functioning.

Diane Malbin: FASCETS (Fetal Alcohol Syndrome Consultation Education and Training Services, Inc.) www.fascets.org [email protected] StrategiesStrategies WeWe TaughtTaught ProvidersProviders toto UseUse •• UseUse shortshort sentences,sentences, concreteconcrete examples,examples, avoidavoid analogiesanalogies •• PresentPresent informationinformation usingusing multiplemultiple modesmodes •• SimpleSimple stepstep--byby--stepstep instructionsinstructions (written(written and/orand/or withwith pictures)pictures) •• RoleRole--playingplaying •• AskAsk patientpatient toto demonstratedemonstrate skillsskills (don’t(don’t relyrely solelysolely onon verbalverbal responses)responses) •• RevisitRevisit importantimportant pointspoints duringduring eacheach sessionsession StrategiesStrategies WeWe TaughtTaught ProvidersProviders toto UseUse

•• TeachTeach generalization:generalization: Don’tDon’t assumeassume aa lessonlesson learnedlearned inin oneone contextcontext willwill transfertransfer toto anotheranother •• HelpHelp clientclient identifyidentify physicalphysical releasesreleases whenwhen escalatingescalating emotionsemotions becomebecome overwhelmingoverwhelming •• BeBe alertalert forfor changes/transitionschanges/transitions——monitormonitor moremore carefully,carefully, dodo advanceadvance problemproblem--solvingsolving •• BeBe consistentconsistent inin appointmentappointment times,times, locations,locations, andand providers.providers. IfIf primaryprimary providerprovider mustmust change,change, anan extendedextended transitiontransition periodperiod isis beneficialbeneficial soso currentcurrent andand newnew providerprovider workwork togethertogether withwith thethe individual.individual. Pilot Study Outcomes (N=19) •• 1919 werewere receivingreceiving medicalmedical &/or&/or mentalmental healthhealth carecare •• 1414 werewere abstinentabstinent fromfrom bothboth drugsdrugs andand alcoholalcohol (11(11 maintainedmaintained abstinence;abstinence; 33 newlynewly inin recovery)recovery) •• 55 werewere stillstill usingusing drugs/alcohol,drugs/alcohol, butbut 33 ofof thesethese 55 werewere usingusing reliablereliable birthbirth controlcontrol methodsmethods (2(2 tubaltubal ligations,ligations, 11 DepoProveraDepoProvera)) •• 1414 werewere usingusing contraceptioncontraception regularlyregularly (7(7 DepoDepo;; 33 tubal;tubal; 22 IUD;IUD; 22 pills)pills) •• 1616 obtainedobtained stablestable housinghousing AnAn experiencedexperienced andand clinicallyclinically supportedsupported casecase manager,manager, workingworking inin collaborationcollaboration withwith herher clientclient andand aa networknetwork ofof educatededucated providers,providers, mightmight reasonablyreasonably expectexpect toto accomplishaccomplish aa numbernumber ofof interventionintervention stepssteps overover aa 1212--monthmonth period.period. FASDFASD clientsclients maymay needneed lifelife longlong advocacy,advocacy, butbut interventionintervention stepssteps cancan bebe takentaken inin thethe shortshort term:term:

1.1. SecuringSecuring stablestable housing,housing, andand safesafe placementsplacements forfor thethe children.children. 2.2. SecuringSecuring aa measuremeasure ofof financialfinancial stabilitystability forfor thethe futurefuture (SSI,(SSI, DDD).DDD). 3.3. AssistingAssisting clientsclients inin choosingchoosing aa reliablereliable contraceptivecontraceptive method.method. 4.4. EstablishingEstablishing anan educatededucated networknetwork ofof serviceservice providersproviders andand committedcommitted mentorsmentors whowho willwill continuecontinue toto workwork withwith clients.clients. MeetingMeeting thethe Challenges…Challenges… HowHow toto KeepKeep WomenWomen withwith FASDFASD inin Treatment?Treatment?

DoDo youyou changechange treatmenttreatment expectations?expectations? •• GroupGroup vs.vs. individualindividual •• RulesRules ofof thethe househouse •• HarmHarm reduction:reduction: whatwhat doesdoes itit meanmean forfor thesethese clients?clients? •• HowHow dodo youyou dealdeal withwith outbursts/outbursts/ poorpoor impulseimpulse control?control? •• CanCan youyou alteralter theirtheir environmentenvironment toto supportsupport theirtheir disability?disability? CanCan WomenWomen withwith FASDFASD ParentParent Effectively?Effectively? WillWill theythey bebe ableable to:to: •• dealdeal withwith emergencies/emergencies/ illnessillness •• pickpick safesafe peoplepeople toto bebe inin theirtheir kids’kids’ liveslives •• maintainmaintain housinghousing •• paypay theirtheir billsbills •• provideprovide appropriateappropriate learninglearning opportunitiesopportunities •• bondbond andand attachattach toto theirtheir kidskids ItIt depends!depends! MeetingMeeting thethe Challenge:Challenge:

It’sIt’s notnot ““justjust alcohol”alcohol” FebruaryFebruary 21,21, 20052005 U.S.U.S. SurgeonSurgeon GeneralGeneral ReleasesReleases AdvisoryAdvisory onon AlcoholAlcohol UseUse inin PregnancyPregnancy

WomenWomen whowho areare pregnantpregnant oror whowho maymay becomebecome pregnantpregnant shouldshould abstainabstain fromfrom alcoholalcohol consumptionconsumption inin orderorder toto eliminateeliminate thethe chancechance ofof givinggiving birthbirth toto aa babybaby withwith anyany ofof thethe harmfulharmful effectseffects ofof thethe FetalFetal AlcoholAlcohol SpectrumSpectrum DisordersDisorders (FASD).(FASD).

This updates a 1981 Surgeon General's Advisory. If I’m Pregnant, Can I … …Fly a plane? Yes – if you could before, says Dr. Donald Gibb of London’s Portland Hospital. In commercial jets, he says, short rides are fine up to 36 weeks.

…Have a beer? The Centers for Disease Control says “no level of alcohol…has been determined safe,” but some doctors feel limited drinking – no more than a pint a day, suggests Dr. Gibb – after the first trimester is okay.

…Bleach or dye my hair? Many doctors give a thumbs up after the first 12 weeks, so long as chemicals are kept away from the scalp.

- People Magazine, April 17, 2006, pp 102-107 MeetingMeeting thethe Challenge:Challenge:

TheThe GoodGood NewsNews andand thethe BadBad NewsNews AlcoholAlcohol UseUse PriorPrior toto andand DuringDuring PregnancyPregnancy inin WesternWestern Washington,Washington, 19891989--20042004

WeWe conductedconducted threethree federallyfederally--fundedfunded studiesstudies onon problemsproblems associatedassociated withwith prenatalprenatal substancesubstance abuse.abuse.

StudyStudy purposespurposes varied,varied, butbut allall involvedinvolved screeningscreening hospitalizedhospitalized postpartumpostpartum womenwomen shortlyshortly afterafter deliverydelivery forfor prenatalprenatal alcoholalcohol andand drugdrug use.use. DescriptionDescription ofof thethe StudiesStudies StudyStudy 1:1: Mar.Mar. 19891989 –– Apr.Apr. 19911991 (N= 7,178) ProspectiveProspective studystudy investigatedinvestigated neurodevelopmentalneurodevelopmental outcomesoutcomes ofof childrenchildren exposedexposed toto cocainecocaine inin uteroutero (Obstetrics and Gynecology (1994), 83(4), 524-531)

StudyStudy 2:2: Jul.Jul. 19911991 –– Dec.Dec. 19921992 (N=2,330) TestedTested efficacyefficacy ofof aa 33--yearyear homehome visitationvisitation interventionintervention (Journal of Community Psychology (2003), 31(3), 211-222)

StudyStudy 3:3: Jun.Jun. 20022002 –– Mar.Mar. 20042004 (N=3,145) Evaluated efficacy of a 12-month intervention program using a randomized design FAS/ARBD Prevention: Research to Practice. (APHA 133rd Annual Meeting. Dec. 2005. Philadelphia, PA.) ResultsResults

PRIOR TO PREGNANCY DURING PREGNANCY

Any Binge Any Binge Alcohol Alcohol Alcohol Alcohol

STUDYSTUDY 11 45%45% 9% 30% 3% 1989-1991

STUDYSTUDY 22 41%41% 10%10% 23%23% 4%4% 1991-1992

STUDYSTUDY 33 43%43% 14%14% 12%12% 1%1% 2002-2004 StudyStudy Conclusions:Conclusions: TheThe GoodGood NewsNews

DrinkingDrinking duringduring pregnancypregnancy decreaseddecreased significantlysignificantly betweenbetween 19891989 andand 20042004

ƒƒ PublicPublic healthhealth messagesmessages aboutabout drinkingdrinking duringduring pregnancypregnancy havehave clearlyclearly hadhad anan impact.impact.

ƒƒ InIn general,general, whenwhen womenwomen knowknow theythey areare pregnant,pregnant, theythey decreasedecrease theirtheir alcoholalcohol consumption.consumption. StudyStudy Conclusions:Conclusions: TheThe ConcernConcern

BingeBinge drinkingdrinking “pre“pre--pregnancy”pregnancy” (or(or priorprior toto pregnancypregnancy recognition)recognition) increasedincreased significantlysignificantly betweenbetween 19891989 andand 20042004 ƒ Women who are heavy drinkers and not pregnant may have unexpected, unwanted, and unprotected sex resulting in unintended pregnancy. [More than half of all pregnancies in the U.S. are unintended.] ƒ Women who aren’t planning a pregnancy or who don’t know they’ve conceived, have no pregnancy-related reason to limit their alcohol intake. [Up to 60% of women don’t know they’re pregnant in early gestation.] PrenatalPrenatal OpiateOpiate ExposureExposure ƒƒ IsIs notnot consideredconsidered teratogenicteratogenic;; nono knownknown congenitalcongenital malformationmalformation isis associated.associated. However:However: ƒƒ MayMay affectaffect prenatalprenatal growthgrowth duedue toto maternalmaternal malnutritionmalnutrition andand coco--morbidmorbid infections.infections. LBWLBW andand intrauterineintrauterine growthgrowth retardationretardation increaseincrease riskrisk ofof pretermpreterm birth.birth. ƒƒ NewbornsNewborns ofof addictedaddicted womenwomen cancan suffersuffer withdrawal.withdrawal. IfIf mothermother waswas IVIV drugdrug user,user, childrenchildren maymay bebe atat increasedincreased riskrisk forfor HIV,HIV, HepatitisHepatitis BB && C.C. ƒƒ It’sIt’s difficultdifficult toto differentiatedifferentiate impactimpact ofof prenatalprenatal heroinheroin exposureexposure andand poorpoor postnatalpostnatal environmentenvironment onon childchild longlong--termterm outcome.outcome. PrenatalPrenatal MarijuanaMarijuana ExposureExposure

ƒƒ ThereThere isis nono consistentconsistent linklink betweenbetween prenatalprenatal marijuanamarijuana exposureexposure andand otherother adverseadverse pregnancypregnancy outcomesoutcomes oror congenitalcongenital malformation.malformation. ƒƒ MarijuanaMarijuana useuse duringduring pregnancypregnancy maymay havehave aa modestmodest effecteffect onon prenatalprenatal growth,growth, butbut resultsresults areare inconsistentinconsistent andand diminishdiminish whenwhen potentialpotential cofounderscofounders areare controlled.controlled. PrenatalPrenatal MarijuanaMarijuana ExposureExposure

ƒƒ TheThe principleprinciple psychoactivepsychoactive substancesubstance inin marijuana,marijuana, UU--99--tetrahyrocannabinoltetrahyrocannabinol (THC),(THC), rapidlyrapidly crossescrosses thethe placentaplacenta andand maymay remainremain inin thethe bodybody forfor 3030 days,days, thusthus prolongingprolonging potentialpotential fetalfetal exposure.exposure. ƒƒ MarijuanaMarijuana smokingsmoking producesproduces higherhigher levelslevels ofof carboncarbon monoxidemonoxide thanthan tobacco,tobacco, whichwhich maymay bebe aa potentialpotential mechanismmechanism ofof actionaction ofof marijuanamarijuana’’ss impactimpact onon thethe developingdeveloping fetus.fetus. PrenatalPrenatal CocaineCocaine ExposureExposure

ƒƒ CocaineCocaine andand itsits metabolitesmetabolites readilyreadily crosscross thethe placenta,placenta, concentratingconcentrating inin amnioticamniotic fluid,fluid, andand maymay produceproduce directdirect neurotoxicneurotoxic effects,effects, disturbdisturb dopamine,dopamine, norepinephrinenorepinephrine,, andand serotoninserotonin pathways,pathways, andand causecause vascularvascular-- mediatedmediated damage.damage. PrenatalPrenatal CocaineCocaine ExposureExposure

ƒƒ AssociatedAssociated withwith obstetricobstetric complications:complications: stillbirth,stillbirth, placentalplacental abruption,abruption, prematurepremature rupturerupture ofof membranes,membranes, fetalfetal distress,distress, andand pretermpreterm delivery.delivery. ƒƒ GrowthGrowth restriction,restriction, butbut maymay requirerequire higherhigher levelslevels ofof exposureexposure andand doesdoes notnot seemseem toto persistpersist afterafter birth.birth. ƒƒ TheThe fewfew availableavailable large,large, controlled,controlled, populationpopulation-- basedbased studiesstudies havehave reachedreached contradictorycontradictory conclusions.conclusions. CNSCNS lesionslesions (e.g.,(e.g., stroke,stroke, possiblepossible seizures),seizures), cardiaccardiac defects,defects, andand genitourinarygenitourinary anomaliesanomalies havehave beenbeen reported.reported. PrenatalPrenatal MethamphetamineMethamphetamine ExposureExposure

ƒƒ ImpactImpact ofof methmeth useuse duringduring humanhuman pregnancypregnancy isis currentlycurrently unknown.unknown. ƒƒ AnimalAnimal studiesstudies havehave demonstrateddemonstrated neurotoxicneurotoxic effectseffects ofof amphetaminesamphetamines andand alterationalteration ofof synapticsynaptic morphologymorphology inin responseresponse toto prenatalprenatal methamphetaminemethamphetamine exposure.exposure. PrenatalPrenatal MethamphetamineMethamphetamine ExposureExposure

ƒƒ WomenWomen usingusing methmeth duringduring pregnancypregnancy maymay havehave anan increasedincreased raterate ofof prematurepremature deliverydelivery andand placentalplacental abruption.abruption. ƒƒ LinkedLinked toto fetalfetal growthgrowth restrictionrestriction and,and, occasionally,occasionally, withdrawalwithdrawal symptomssymptoms requiringrequiring pharmacologicpharmacologic interventionintervention atat birth.birth. ƒƒ CleftingClefting,, cardiaccardiac anomalies,anomalies, andand fetalfetal growthgrowth reductionreduction havehave beenbeen describeddescribed inin infantsinfants andand havehave beenbeen reproducedreproduced inin animalanimal studies.studies. ƒƒ LaterLater effectseffects onon childchild healthhealth areare unknown.unknown. PrenatalPrenatal TobaccoTobacco ExposureExposure

ƒƒ AssociatedAssociated withwith poorpoor fetalfetal growth;growth; thethe mostmost importantimportant causecause ofof LBWLBW inin developeddeveloped countries.countries. ƒƒ LinkedLinked toto myriadmyriad perinatalperinatal complicationscomplications andand childchild healthhealth problemsproblems (along(along withwith environmentalenvironmental smokesmoke exposure,exposure, oror ESE).ESE). ESEESE isis implicatedimplicated inin LBW,LBW, fetalfetal death,death, andand pretermpreterm delivery.delivery. ƒƒ ImplicatedImplicated inin aa rangerange ofof adverseadverse behavioralbehavioral andand cognitivecognitive outcomes.outcomes. PrenatalPrenatal TobaccoTobacco ExposureExposure

ƒƒ CigaretteCigarette smokesmoke containscontains tar,tar, nicotine,nicotine, andand carboncarbon monoxide.monoxide. ƒƒ TarTar containscontains substancessubstances (lead,(lead, cyanide,cyanide, cadmium,cadmium, andand more)more) harmfulharmful toto thethe fetus.fetus. ƒƒ IntrauterineIntrauterine hypoxia,hypoxia, mediatedmediated byby carboncarbon monoxidemonoxide andand reducedreduced uterineuterine bloodblood flow,flow, isis aa majormajor mechanismmechanism ofof thethe growthgrowth impairment.impairment. ƒƒ NicotineNicotine crossescrosses thethe placentaplacenta andand distributesdistributes freelyfreely toto thethe CNS,CNS, havinghaving directdirect andand indirectindirect effectseffects onon neuralneural development.development.