FASEout Project FASD and Secondary Disabilities

FASEout Project Secondary Disabilities Result from negative consequences of primary disabilities and can often change Result from negative consequences of primary disabilities and can often change For example, while learning disabilities might be a primary disability, low self- esteem may be the effect of repeated failures because of those disabilities For example, while learning disabilities might be a primary disability, low self- esteem may be the effect of repeated failures because of those disabilities

FASEout Project Study The following secondary disabilities were ascertained from life history interviews of 415 FASD affected individuals using 450 questions The following secondary disabilities were ascertained from life history interviews of 415 FASD affected individuals using 450 questions Dr Anne Streissguth, et al, University of Washington Dr Anne Streissguth, et al, University of Washington

FASEout Project Secondary Disabilities Mental health problems Mental health problems Disrupted school experiences Disrupted school experiences Easily victimized Easily victimized Trouble with the law Trouble with the law Inappropriate sexual behaviour Inappropriate sexual behaviour Alcohol and drug problems Alcohol and drug problems Problems with employment and living independently Problems with employment and living independently

FASEout Project Mental Health Issues 94% in secondary disabilities study had mental health issues Affects children, adolescents and adults Affects children, adolescents and adults FASD might not be considered or recognized – it’s not an official “mental health diagnosis” - often does not receive attention by mental health workers FASD might not be considered or recognized – it’s not an official “mental health diagnosis” - often does not receive attention by mental health workers Even when FASD is recognized, another diagnosis is often used in order to get reimbursement for treatment or services Even when FASD is recognized, another diagnosis is often used in order to get reimbursement for treatment or services

FASEout Project Possibility of Misdiagnosis Individuals may have undiagnosed or misdiagnosed mental health disorders Individuals may have undiagnosed or misdiagnosed mental health disorders Individuals may be diagnosed with a mental health disorder without closely examining the total picture; FASD can look like many other mental health diagnoses Individuals may be diagnosed with a mental health disorder without closely examining the total picture; FASD can look like many other mental health diagnoses Adults may have many other disorders that come from living with FASD without support Adults may have many other disorders that come from living with FASD without support (Dubovsky, 2002) (Dubovsky, 2002)

FASEout Project Many People Aren’t Diagnosed Most people who are affected by FASD don’t know it Most people who are affected by FASD don’t know it They may have grown up thinking they were different They may have grown up thinking they were different They may be diagnosed with something else They may be diagnosed with something else

FASEout Project Likely Misdiagnosis for Individuals with FASD ADHD ADHD Oppositional Defiant Disorder Oppositional Defiant Disorder Conduct Disorder Conduct Disorder Intermittent Explosive Disorder Intermittent Explosive Disorder Bipolar Bipolar Psychotic Disorders Psychotic Disorders Antisocial Personality Disorder Antisocial Personality Disorder Borderline Personality Disorder Borderline Personality Disorder

FASEout Project Disrupted School Experience 43% of school aged FASD affected individuals Suspension Suspension Expulsion Expulsion Drop-out Drop-out

FASEout Project Potential Victimization 72% of individuals with FASD had been victims of physical, sexual and/or emotional abuse Difficulty with sound judgment and decision-making, along with the desire to please others, leaves them vulnerable to exploitation, manipulation and abuse Difficulty with sound judgment and decision-making, along with the desire to please others, leaves them vulnerable to exploitation, manipulation and abuse

FASEout Project Trouble with the Law 61% of adolescents; 58% of adults in secondary disabilities study had increased involvement with the law Poor concept of cause and effect Poor concept of cause and effect Inability to predict consequences Inability to predict consequences Inability to change actions in different situations Inability to change actions in different situations

FASEout Project Inappropriate Sexual Behaviour Reported with 45% aged 12 and over Often due to poor judgment, lack of impulse control Often due to poor judgment, lack of impulse control Supervise with animals and younger children Supervise with animals and younger children

FASEout Project Unprepared Life Events Lack of foresight, poor impulse control and poor judgment often lead to unprepared life events In a sample of 30 females with FASD who had given birth, 57% no longer were caring for their child(ren), 40% reported drinking during pregnancy, 17% of the children were diagnosed with FASD, and another 13% were suspected of having FASD In a sample of 30 females with FASD who had given birth, 57% no longer were caring for their child(ren), 40% reported drinking during pregnancy, 17% of the children were diagnosed with FASD, and another 13% were suspected of having FASD

FASEout Project Alcohol and Drug Problems 26% age 12-20; 48% ages in secondary disabilities study Biological vulnerability to substance use Biological vulnerability to substance use Use of substances to self-medicate Use of substances to self-medicate Difficulties with issues of control Difficulties with issues of control Repeated failures in traditional addictions treatment Repeated failures in traditional addictions treatment

FASEout Project The Argument for Co-occurrence People with mental illness frequently use substances, often to self-medicate People with mental illness frequently use substances, often to self-medicate Many mental illnesses have a genetic component leading to vulnerabilities in offspring Many mental illnesses have a genetic component leading to vulnerabilities in offspring Substance use disorders may have a genetic component leading to vulnerabilities in offspring Substance use disorders may have a genetic component leading to vulnerabilities in offspring Therefore, the risk of a woman with a mental illness and an alcohol use disorder giving birth to a child with FASD and vulnerabilities for mental illness and substance use is significant Therefore, the risk of a woman with a mental illness and an alcohol use disorder giving birth to a child with FASD and vulnerabilities for mental illness and substance use is significant

FASEout Project The Argument for Co-occurrence We know that stressors can exacerberate underlying disorders We know that stressors can exacerberate underlying disorders We are aware that individuals with FASD experience multiple stressors in their lives We are aware that individuals with FASD experience multiple stressors in their lives Therefore, the likelihood that a person with FASD and these underlying vulnerabilities would have a co-occurring mental illness and/or substance use disorder is significant Therefore, the likelihood that a person with FASD and these underlying vulnerabilities would have a co-occurring mental illness and/or substance use disorder is significant

FASEout Project The importance of recognizing co-occurring FASD The cognitive impairments in FASD can interfere with the ability to be successful with typical treatment approaches The cognitive impairments in FASD can interfere with the ability to be successful with typical treatment approaches > lateral thinking > lateral thinking > difficulty with multiple directions > difficulty with multiple directions > difficulty following through with multiple treatment plans > difficulty following through with multiple treatment plans Difficulty with treatment based on verbal receptive language skills Difficulty with treatment based on verbal receptive language skills Difficulty with treatment based on processing information outside of session Difficulty with treatment based on processing information outside of session

FASEout Project Profile of 80 birth mothers of children with FAS 100% had alcohol use histories 100% had alcohol use histories 96% had one to ten mental health disorders 96% 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 their lifetime 95% had been physically or sexually abused during their lifetime 79% reported having a birth parent with an alcohol problem 79% reported having a birth parent with an alcohol problem

FASEout Project Dependent Living 83% of those 21 and over in secondary disabilities study were unable to live independently Managing and understanding the value of money was the most frequent difficulty: tend to spend what they have Managing and understanding the value of money was the most frequent difficulty: tend to spend what they have Repeatedly need help with money for food or housing Repeatedly need help with money for food or housing

FASEout Project Streissguth et.al. (1996) 83% are unable to live independently (Regardless of IQ) Why?

FASEout Project Streissguth et al. Longitudinal Study (1996), Streissguth et al. Longitudinal Study (1996), Sample of adults age 21+ were unable to: Manage money82% Manage money82% Make daily living decisions78% Make daily living decisions78% Obtain social services70% Obtain social services70% Get medical care68% Get medical care68% Handle interpersonal relationships57% Handle interpersonal relationships57% Grocery shop52% Grocery shop52% Cook meals49% Cook meals49% Structure leisure activities48% Structure leisure activities48% Stay out of trouble48% Stay out of trouble48% Maintain hygiene37% Maintain hygiene37% Use public transportation24% Use public transportation24% FASD and Activities of Daily Living

FASEout Project All activities of daily living are done in, around, and out of the place in which you live. If you don’t have a place to live... The rest gets more difficult to manage. The Conundrum of FASD and Housing

FASEout Project The 7 S’s of Supportive Housing SELECTION STRUCTURE SUPPORT STABILITY SAFETY SECURITY SUPERVISION

FASEout Project “Supportive” Housing for FASD Long Term Safe Permanent “Place to Call Home” Long Term Safe Permanent “Place to Call Home” Awake Staff 24/7 Awake Staff 24/7 Integrated Individualized Case Management Integrated Individualized Case Management Meals Provided Meals Provided Programs (Employment, Education, Leisure) Programs (Employment, Education, Leisure) Comprehensive Supported Activities of Daily Living Comprehensive Supported Activities of Daily Living Peer Support (Circle of Friends, mentor) Peer Support (Circle of Friends, mentor) Family Involvement / Support Family Involvement / Support Addictions Services Addictions Services Health Care (GP, PHN, meds) Health Care (GP, PHN, meds) Mental Health Mental Health Transportation Transportation Legal Resources Legal Resources Staff Support Staff Support No Eviction Policy * Specifically for non-parenting adults with FASD

FASEout Project Lowering Risk of Secondary Disabilities Living in a stable, nurturing home Living in a stable, nurturing home Staying in the same household for at least three years Staying in the same household for at least three years Diagnosis by six years of age Diagnosis by six years of age Not being a victim of violence Not being a victim of violence Receiving services for disability Receiving services for disability

FASEout Project Appropriate Supports for Individuals with FASD Recognize and modify expectations Recognize and modify expectations Identify strengths, skills and interests Identify strengths, skills and interests Establish routines Establish routines Build transitions into the routine Build transitions into the routine

FASEout Project Appropriate Supports for Individuals with FASD Provide simple instructions or cues Provide simple instructions or cues Help to develop skills for expressing feelings Help to develop skills for expressing feelings Support social skills development Support social skills development Involve as many senses as possible Involve as many senses as possible Re-evaluate expectations and goals Re-evaluate expectations and goals

FASEout Project Attitudes and Expectations Recognize FASD as a lifelong disability Recognize FASD as a lifelong disability Understand that the brain is damaged Understand that the brain is damaged Form realistic expectations of the individual with FASD and work with that individual to help him or her have an improved quality of life Form realistic expectations of the individual with FASD and work with that individual to help him or her have an improved quality of life

FASEout Project Things that Work Concrete instructions Concrete instructions Consistent messages Consistent messages Repetition Repetition Routine Routine Simple tasks, explanations, etc. Simple tasks, explanations, etc. Supervision Supervision Decreased stimulation Decreased stimulation

FASEout Project CARES Model Cues Cues Attitude Attitude Repetition Repetition Expectations Expectations Support Support (for a copy refer to we CARES manual) (for a copy refer to we CARES manual)

FASEout Project Paradigm Shift Need to change expectations that all behaviour can be changed Need to change expectations that all behaviour can be changed FASD needs to be seen as an invisible disability FASD needs to be seen as an invisible disability Dependence is a factor of FASD Dependence is a factor of FASD People with FASD need things to be repeated many times and to be reminded often People with FASD need things to be repeated many times and to be reminded often

FASEout Project Fetal Alcohol Spectrum Disorder is a lifelong mental and physical condition that affects the individual, the family and the community

FASEout Project Resources Streissguth, A., Fred L. Bookstein, Helen M. Barr, Paul Sampson, Kieran O’Malley, Julia Kogan Young “Risk Factors for Adverse Life Outcomes in Fetal Alcohol Syndrome and Fetal Alcohol Effects.” Developmental and Behavioral Pediatrics Vol. 25, No. 4. Streissguth, A., Fred L. Bookstein, Helen M. Barr, Paul Sampson, Kieran O’Malley, Julia Kogan Young “Risk Factors for Adverse Life Outcomes in Fetal Alcohol Syndrome and Fetal Alcohol Effects.” Developmental and Behavioral Pediatrics Vol. 25, No. 4. Streissguth, Ann. Fetal Alcohol Syndrome: A guide for families and communities. Baltimore, MD: Paul H. Brooks, Streissguth, Ann. Fetal Alcohol Syndrome: A guide for families and communities. Baltimore, MD: Paul H. Brooks, Streissguth, A., H. Barr, J. Kogan, F. Bookstein. Understanding the occurrence of secondary disabilities in clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). Seattle: University of Washington, 1996.Streissguth, A. Streissguth, A., H. Barr, J. Kogan, F. Bookstein. Understanding the occurrence of secondary disabilities in clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). Seattle: University of Washington, 1996.Streissguth, A.

FASEout Project Books Sara Graefe (ed.) Parenting Children Affected by Fetal Alcohol Syndrome: A Guide for Daily Living, The Adoption Council of Canada, Sara Graefe (ed.) Parenting Children Affected by Fetal Alcohol Syndrome: A Guide for Daily Living, The Adoption Council of Canada, Ann Streissguth, Jonathan Kanter. The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities, University of Washington Press, Ann Streissguth, Jonathan Kanter. The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities, University of Washington Press, Bonnie Buxton. Damaged Angels: A mother discovers the terrible cost of alcohol in pregnancy, Knopf, Bonnie Buxton. Damaged Angels: A mother discovers the terrible cost of alcohol in pregnancy, Knopf, 2004.