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FASD and Secondary FASD and Secondary DisabilitiesDisabilities
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Secondary DisabilitiesSecondary Disabilities
Result from negative consequences of Result from negative consequences of primary disabilities and can often primary disabilities and can often changechange
For example, while learning disabilities For example, while learning disabilities might be a primary disability, low self-might be a primary disability, low self-esteem may be the effect of repeated esteem may be the effect of repeated failures because of those disabilitiesfailures because of those disabilities
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StudyStudy
The following secondary disabilities The following secondary disabilities were ascertained from life history were ascertained from life history interviews of 415 FASD affected interviews of 415 FASD affected individuals using 450 questionsindividuals using 450 questions
Dr Anne Streissguth, et al, University Dr Anne Streissguth, et al, University of Washingtonof Washington
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Secondary DisabilitiesSecondary Disabilities
Mental health problemsMental health problems Disrupted school experiencesDisrupted school experiences Easily victimizedEasily victimized Trouble with the lawTrouble with the law Inappropriate sexual behaviourInappropriate sexual behaviour Alcohol and drug problemsAlcohol and drug problems Problems with employment and living Problems with employment and living
independently independently
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Mental Health IssuesMental Health Issues
94% in secondary disabilities study had mental 94% in secondary disabilities study had mental health issueshealth issues
Affects children, adolescents and adultsAffects children, adolescents and adults
FASD might not be considered or recognized – it’s FASD might not be considered or recognized – it’s not an official “mental health diagnosis” - often not an official “mental health diagnosis” - often does not receive attention by mental health workersdoes not receive attention by mental health workers
Even when FASD is recognized, another diagnosis is Even when FASD is recognized, another diagnosis is often used in order to get reimbursement for often used in order to get reimbursement for treatment or servicestreatment or services
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Possibility of MisdiagnosisPossibility of Misdiagnosis
Individuals may have undiagnosed or Individuals may have undiagnosed or misdiagnosed mental health disorders misdiagnosed mental health disorders
Individuals may be diagnosed with a mental Individuals may be diagnosed with a mental health disorder without closely examining health disorder without closely examining the total picture; FASD can look like many the total picture; FASD can look like many other mental health diagnosesother mental health diagnoses
Adults may have many other disorders that Adults may have many other disorders that come from living with FASD without supportcome from living with FASD without support
(Dubovsky, 2002)(Dubovsky, 2002)
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Many People Aren’t Many People Aren’t DiagnosedDiagnosed
Most people who are affected by Most people who are affected by FASD don’t know itFASD don’t know it
They may have grown up thinking they They may have grown up thinking they were differentwere different
They may be diagnosed with something They may be diagnosed with something elseelse
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Likely Misdiagnosis for Likely Misdiagnosis for Individuals with FASDIndividuals with FASD
ADHDADHD Oppositional Defiant DisorderOppositional Defiant Disorder Conduct DisorderConduct Disorder Intermittent Explosive DisorderIntermittent Explosive Disorder BipolarBipolar Psychotic DisordersPsychotic Disorders Antisocial Personality DisorderAntisocial Personality Disorder Borderline Personality DisorderBorderline Personality Disorder
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Disrupted School Disrupted School ExperienceExperience
43% of school aged FASD affected 43% of school aged FASD affected individualsindividuals
SuspensionSuspension
ExpulsionExpulsion
Drop-outDrop-out
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Potential VictimizationPotential Victimization
72% of individuals with FASD had 72% of individuals with FASD had been victims of physical, sexual been victims of physical, sexual and/or emotional abuseand/or emotional abuse
Difficulty with sound judgment and Difficulty with sound judgment and decision-making, along with the desire to decision-making, along with the desire to please others, leaves them vulnerable to please others, leaves them vulnerable to exploitation, manipulation and abuseexploitation, manipulation and abuse
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Trouble with the LawTrouble with the Law
61% of adolescents; 58% of adults in 61% of adolescents; 58% of adults in secondary disabilities study had secondary disabilities study had increased involvement with the lawincreased involvement with the law
Poor concept of cause and effectPoor concept of cause and effect
Inability to predict consequencesInability to predict consequences
Inability to change actions in different Inability to change actions in different situationssituations
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Inappropriate Sexual Inappropriate Sexual BehaviourBehaviour
Reported with 45% aged 12 and Reported with 45% aged 12 and overover
Often due to poor judgment, lack of Often due to poor judgment, lack of impulse controlimpulse control
Supervise with animals and younger Supervise with animals and younger childrenchildren
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Unprepared Life EventsUnprepared Life Events
Lack of foresight, poor impulse control Lack of foresight, poor impulse control and poor judgment often lead to and poor judgment often lead to unprepared life eventsunprepared life events
In a sample of 30 females with FASD who In a sample of 30 females with FASD who had given birth, 57% no longer were caring had given birth, 57% no longer were caring for their child(ren), 40% reported drinking for their child(ren), 40% reported drinking during pregnancy, 17% of the children during pregnancy, 17% of the children were diagnosed with FASD, and another were diagnosed with FASD, and another 13% were suspected of having FASD13% were suspected of having FASD
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Alcohol and Drug Alcohol and Drug ProblemsProblems
26% age 12-20; 48% ages 21-51 in secondary 26% age 12-20; 48% ages 21-51 in secondary disabilities studydisabilities study
Biological vulnerability to substance useBiological vulnerability to substance use
Use of substances to self-medicateUse of substances to self-medicate
Difficulties with issues of controlDifficulties with issues of control
Repeated failures in traditional addictions Repeated failures in traditional addictions treatmenttreatment
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The Argument for Co-The Argument for Co-occurrenceoccurrence
People with mental illness frequently use People with mental illness frequently use substances, often to self-medicate substances, often to self-medicate
Many mental illnesses have a genetic component Many mental illnesses have a genetic component leading to vulnerabilities in offspringleading to vulnerabilities in offspring
Substance use disorders may have a genetic Substance use disorders may have a genetic component leading to vulnerabilities in offspringcomponent leading to vulnerabilities in offspring
Therefore, the risk of a woman with a mental Therefore, the risk of a woman with a mental illness and an alcohol use disorder giving birth to illness and an alcohol use disorder giving birth to a child with FASD and vulnerabilities for mental a child with FASD and vulnerabilities for mental illness and substance use is significantillness and substance use is significant
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The Argument for Co-The Argument for Co-occurrenceoccurrence
We know that stressors can exacerberate We know that stressors can exacerberate underlying disordersunderlying disorders
We are aware that individuals with FASD We are aware that individuals with FASD experience multiple stressors in their experience multiple stressors in their liveslives
Therefore, the likelihood that a person Therefore, the likelihood that a person with FASD and these underlying with FASD and these underlying vulnerabilities would have a co-occurring vulnerabilities would have a co-occurring mental illness and/or substance use mental illness and/or substance use disorder is significantdisorder is significant
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The importance of recognizing The importance of recognizing co-occurring FASDco-occurring FASD
The cognitive impairments in FASD can The cognitive impairments in FASD can interfere with the ability to be successful interfere with the ability to be successful with typical treatment approaches with typical treatment approaches
> lateral thinking> lateral thinking > difficulty with multiple directions> difficulty with multiple directions > difficulty following through with multiple > difficulty following through with multiple
treatment plans treatment plans Difficulty with treatment based on verbal Difficulty with treatment based on verbal
receptive language skillsreceptive language skills Difficulty with treatment based on Difficulty with treatment based on
processing information outside of session processing information outside of session
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Profile of 80 birth mothers Profile of 80 birth mothers of children with FASof children with FAS
100% had alcohol use histories100% had alcohol use histories 96% had one to ten mental health disorders96% had one to ten mental health disorders >77%: PTSD>77%: PTSD >59%: Major depressive disorder>59%: Major depressive disorder >34%: Generalized anxiety>34%: Generalized anxiety >22%: manic episode/bipolar disorder>22%: manic episode/bipolar disorder >7%: schizophrenia>7%: schizophrenia 95% had been physically or sexually abused during 95% had been physically or sexually abused during
their lifetimetheir lifetime 79% reported having a birth parent with an alcohol 79% reported having a birth parent with an alcohol
problemproblem
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Dependent LivingDependent Living
83% of those 21 and over in secondary 83% of those 21 and over in secondary disabilities study were unable to live disabilities study were unable to live independentlyindependently
Managing and understanding the value of Managing and understanding the value of money was the most frequent difficulty: money was the most frequent difficulty: tend to spend what they havetend to spend what they have
Repeatedly need help with money for food Repeatedly need help with money for food or housingor housing
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Streissguth et.al. (1996)
83% are unable to live independently
(Regardless of IQ)
Why?
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Streissguth et al. Longitudinal Study (1996), Streissguth et al. Longitudinal Study (1996),
Sample of adults age 21+ were Sample of adults age 21+ were unable tounable to: : Manage moneyManage money 82%82% Make daily living decisionsMake daily living decisions 78%78% Obtain social servicesObtain social services 70%70% Get medical careGet medical care 68%68% Handle interpersonal relationshipsHandle interpersonal relationships 57%57% Grocery shopGrocery shop 52%52% Cook mealsCook meals 49%49% Structure leisure activitiesStructure leisure activities 48%48% Stay out of troubleStay out of trouble 48%48% Maintain hygieneMaintain hygiene 37%37% Use public transportationUse public transportation 24%24%
FASD and Activities of Daily FASD and Activities of Daily LivingLiving
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All activities of daily living are done All activities of daily living are done in, around, and out of the place in in, around, and out of the place in
which you live. which you live.
If you don’t have a place to live . . . If you don’t have a place to live . . . The rest gets more difficult to The rest gets more difficult to
manage.manage.
The Conundrum of FASD and Housing
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The 7 S’s of Supportive The 7 S’s of Supportive HousingHousing
SSELECTIONELECTIONSSTRUCTURETRUCTURESSUPPORTUPPORTSSTABILITYTABILITYSSAFETYAFETYSSECURITYECURITY
SSUPERVISIONUPERVISION
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““Supportive” Housing for FASDSupportive” Housing for FASD Long Term Safe Permanent Long Term Safe Permanent “Place to Call “Place to Call
Home”Home” Awake Staff 24/7Awake Staff 24/7 Integrated Individualized Case ManagementIntegrated Individualized Case Management Meals ProvidedMeals Provided Programs (Employment, Education, Leisure)Programs (Employment, Education, Leisure) Comprehensive Supported Activities of Daily Comprehensive Supported Activities of Daily
LivingLiving Peer Support (Circle of Friends, mentor)Peer Support (Circle of Friends, mentor) Family Involvement / SupportFamily Involvement / Support Addictions ServicesAddictions Services Health Care (GP, PHN, meds)Health Care (GP, PHN, meds) Mental HealthMental Health TransportationTransportation Legal ResourcesLegal Resources Staff SupportStaff Support
No Eviction Policy
* Specifically for non-parenting adults with FASD
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Lowering Risk of Secondary Lowering Risk of Secondary DisabilitiesDisabilities
Living in a stable, nurturing home Living in a stable, nurturing home Staying in the same household for at Staying in the same household for at
least three yearsleast three years Diagnosis by six years of ageDiagnosis by six years of age Not being a victim of violenceNot being a victim of violence Receiving services for disabilityReceiving services for disability
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Appropriate Supports for Appropriate Supports for Individuals with FASDIndividuals with FASD
Recognize and modify expectationsRecognize and modify expectations
Identify strengths, skills and interestsIdentify strengths, skills and interests
Establish routinesEstablish routines
Build transitions into the routineBuild transitions into the routine
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Appropriate Supports for Appropriate Supports for Individuals with FASDIndividuals with FASD
Provide simple instructions or cuesProvide simple instructions or cues Help to develop skills for expressing Help to develop skills for expressing
feelingsfeelings Support social skills developmentSupport social skills development Involve as many senses as possibleInvolve as many senses as possible Re-evaluate expectations and goalsRe-evaluate expectations and goals
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Attitudes and Attitudes and ExpectationsExpectations
Recognize FASD as a lifelong disabilityRecognize FASD as a lifelong disability
Understand that the brain is damagedUnderstand that the brain is damaged
Form realistic expectations of the Form realistic expectations of the individual with FASD and work with individual with FASD and work with that individual to help him or her have that individual to help him or her have an improved quality of lifean improved quality of life
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Things that WorkThings that Work
Concrete instructionsConcrete instructions Consistent messagesConsistent messages RepetitionRepetition RoutineRoutine Simple tasks, explanations, etc.Simple tasks, explanations, etc. SupervisionSupervision Decreased stimulationDecreased stimulation
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CARES ModelCARES Model
CCuesues AAttitudettitude RRepetitionepetition EExpectationsxpectations SSupportupport
(for a copy refer to (for a copy refer to www.annewright.cawww.annewright.ca; we ; we CARES manual)CARES manual)
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Paradigm ShiftParadigm Shift
Need to change expectations that all behaviour Need to change expectations that all behaviour can be changedcan be changed
FASD needs to be seen as an invisible disabilityFASD needs to be seen as an invisible disability
Dependence is a factor of FASDDependence is a factor of FASD
People with FASD need things to be repeated People with FASD need things to be repeated many times and to be reminded oftenmany times and to be reminded often
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Fetal Alcohol Spectrum Disorder Fetal Alcohol Spectrum Disorder is a lifelong mental and physical is a lifelong mental and physical
condition that affects the condition that affects the individual, the family and the individual, the family and the
communitycommunity
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ResourcesResources Streissguth, A., Fred L. Bookstein, Helen M. Barr, Paul Streissguth, A., Fred L. Bookstein, Helen M. Barr, Paul
Sampson, Kieran O’Malley, Julia Kogan Young. 2004. “Risk Sampson, Kieran O’Malley, Julia Kogan Young. 2004. “Risk Factors for Adverse Life Outcomes in Fetal Alcohol Factors for Adverse Life Outcomes in Fetal Alcohol Syndrome and Fetal Alcohol EffectsSyndrome and Fetal Alcohol Effects.” Developmental and .” Developmental and Behavioral PediatricsBehavioral Pediatrics Vol. 25, No. 4. Vol. 25, No. 4.
Streissguth, Ann. Streissguth, Ann. Fetal Alcohol Syndrome: A guide for Fetal Alcohol Syndrome: A guide for families and communitiesfamilies and communities. Baltimore, MD: Paul H. Brooks, . Baltimore, MD: Paul H. Brooks, 1997.1997.
Streissguth, A., H. Barr, J. Kogan, F. Bookstein. Streissguth, A., H. Barr, J. Kogan, F. Bookstein. Understanding the occurrence of secondary disabilities in Understanding the occurrence of secondary disabilities in clients with Fetal Alcohol Syndrome (FAS) and Fetal clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE)Alcohol Effects (FAE). Seattle: University of Washington, . Seattle: University of Washington, 1996.Streissguth, A. 1996.Streissguth, A.
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BooksBooks
Sara Graefe (ed.) Sara Graefe (ed.) Parenting Children Affected by Parenting Children Affected by Fetal Alcohol Syndrome: A Guide for Daily LivingFetal Alcohol Syndrome: A Guide for Daily Living, , The Adoption Council of Canada, 1994. The Adoption Council of Canada, 1994.
Ann Streissguth, Jonathan Kanter. Ann Streissguth, Jonathan Kanter. The Challenge of The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Fetal Alcohol Syndrome: Overcoming Secondary DisabilitiesDisabilities, University of Washington Press, 1997., University of Washington Press, 1997.
Bonnie Buxton. Bonnie Buxton. Damaged Angels: A mother Damaged Angels: A mother discovers the terrible cost of alcohol in pregnancydiscovers the terrible cost of alcohol in pregnancy, , Knopf, 2004. Knopf, 2004.