faseout project 2006 fasd and secondary disabilities

FASEout Project 2006 www.faseoFASEout Project 2006 www.faseout.caut.ca

FASD and Secondary FASD and Secondary DisabilitiesDisabilities


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


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


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


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


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)


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


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


Disrupted School Disrupted School ExperienceExperience

43% of school aged FASD affected 43% of school aged FASD affected individualsindividuals

SuspensionSuspension

ExpulsionExpulsion

Drop-outDrop-out


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


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


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


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


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


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


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


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


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


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


Streissguth et.al. (1996)

83% are unable to live independently

(Regardless of IQ)

Why?


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


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


The 7 S’s of Supportive The 7 S’s of Supportive HousingHousing

SSELECTIONELECTIONSSTRUCTURETRUCTURESSUPPORTUPPORTSSTABILITYTABILITYSSAFETYAFETYSSECURITYECURITY

SSUPERVISIONUPERVISION


““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


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


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


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


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


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


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)

http://www.annewright.ca/


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


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


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.


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.

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