Addressing Child Welfare and Mental Health Issues for Individuals With an FASD and Their Families

1. Addressing Child Welfare and Mental Health Issues for Individuals With an FASD and Their Families Building FASD State Systems Meeting San Antonio TX June 21-22, 2005

2. Eileen M. Lally, Ed.D, LCSWProgram ManagerUniversity of Alaska Anchorage School of Social Work 4500 Diplomacy Drive #430 Anchorage, AK 99508 Phone: 907 786 6720 Fax: 907 786 6735 e-mail: ANEML1@uaa.alaska.edu web site: www.fsta.uaa.alaska.edu

3. Dan Dubovsky, MSWFASD SpecialistSAMHSA FASD Center for Excellence 2101 Gaither Rd., Ste 600 Rockville, MD 20850 301-527-6567 dan.dubovsky@ngc.com www.fascenter.samhsa.gov 1-866-STOPFAS (866-786-7327)

4. Importance of Accurate Diagnosis • A number of adolescents and adults have an FASD, most often undiagnosed and unrecognized • These individuals often fail in our traditional treatment programs • They say they know what they need to do and don’t follow through • They tend to be very verbal • They may have average or above average intelligence

5. Importance of Accurate Diagnosis • A number of children and adolescents have an FASD, most often undiagnosed and unrecognized • They often appear to be NURMU® • Non-compliant • Uncooperative • Resistant • Manipulative • Unmotivated • Children and adolescents may be, or end up, in foster care • Multiple placements are typical • Foster and adoptive parents often have not been trained to understand how to parent these children

6. Importance of Accurate Diagnosis • Care givers with an unrecognized FASD are often labeled as neglectful, abusive, sabotaging, or NURMU® • They say they know what they need to do • They don’t follow through on instructions • E.g., treatment, appointments, visits, phone calls • Especially when we have given them multiple instructions

7. Importance of Accurate Diagnosis • Care givers with an unrecognized FASD are often labeled as neglectful, abusive, sabotaging, or NURMU® • Have difficulty holding jobs • In jeopardy with TANF • They are in jeopardy of losing subsidized housing • They do not follow the rules • They don’t pay their rent regularly • They don’t keep their apartment clean • They may end up homeless

8. Importance of Accurate Diagnosis • Care givers with an unrecognized FASD are often labeled as neglectful, abusive, sabotaging, or NURMU® • Children tend to be in multiple placements • This is especially important to recognize for child and family serving agencies (e.g., child protective services; foster care; education; public health nursing; mental health)

9. Issues in Child Welfare for Children and Adolescents With an FASD • Many families become involved with child welfare, and child protective services in particular, due to substance use in the family • These children and adolescents may be placed in foster homes in which the parents are not skilled in dealing with a child with an FASD • They are often disappointed by their birth parents • They are at risk for disruptions in placements • They are at risk for abuse

10. Issues in Adoption for Children and Adolescents With an FASD • Children who are available for adoption may be “hard to place” due to their behavioral problems • Most States do not require an investigation of prenatal alcohol use in birth families • If adopted, the parents frequently have much difficulty raising that child • The children may be at risk for adoption disruptions • The children may be at risk of abuse

11. Issues in Child Welfare for Parents With an FASD • Their children are placed outside the home • In order to get their children back, they need to demonstrate the ability to follow through on multiple requirements • This is extremely difficult for a person with an FASD • We take their inability to follow multiple directions for abuse • They appear to be disinterested or neglectful • They don’t show up for their appointments on time • They don’t complete treatment • They don’t go to meetings every day and get a signed statement that they were there • They don’t call their children at the designated times • They don’t show up for their scheduled visits with their children at the right times.

12. Issues That Might Interfere With the Ability to Succeed in Systems of Care • Memory problems • Language processing problems • Especially verbal • Problems with attention • Self esteem issues • Lack of support

13. Issues That Might Interfere With the Ability to Succeed in Systems of Care • Desire to “belong” • Desire to “fit in” • Inability to process multiple directions • Literal thinking • Take conversations exactly as spoken • Difficulty with the sense of time

14. Issues in Mental Health for Individuals With an FASD and Their Families • A significant percentage of people with an FASD have co-occurring mental health disorders • A number of mental illnesses have a strong genetic link • About 50% of those with mental illness use substances • Those illnesses with high rates of co-occurring substance use are ones with a strong genetic link

15. Issues in Mental Health for Individuals With an FASD and Their Families • Most of the time, the FASD is not recognized as a co-occurring disorder • It is not considered a mental health disorder by the American Psychiatric Association • It cannot be treated by a mental health professional and get reimbursed • The person may get a psychiatric diagnosis based on symptomatology • If this is not an accurate diagnosis, the treatment may not be helpful

16. Issues in Mental Health for Individuals With an FASD and Their Families • We utilize our typical treatment approaches • The individual “fails” in treatment • That failure is viewed as a lack of motivation on the part of the individual • Families are viewed as enmeshed and enabling

17. Profile of 80 Birth Mothers of Children With FAS(Astley et al 2000) • 96% had one to ten mental health disorders • 77%: PTSD • 59%: Major depressive episode • 34%: Generalized anxiety disorder • 22%: Manic episode/Bipolar disorder • 7%: Schizophrenia • 95% had been physically or sexually abused during their lifetime • 79% reported having a birth parent with an alcohol problem

18. Likely Co-occurring Disorders With FASD • Attention-Deficit/Hyperactivity Disorder • Substance use disorders • Schizophrenia • Delusional disorder • Depression • Bipolar disorder • Oppositional Defiant/Conduct Disorder • Reactive Attachment Disorder • Separation Anxiety Disorder • Posttraumatic Stress Disorder • Traumatic Brain Injury

19. Likely Misdiagnoses for Individuals with FASD • ADHD • Oppositional Defiant Disorder • Conduct Disorder • Adolescent depression • Bipolar disorder

20. Likely Misdiagnoses for Individuals with FASD • Intermittent Explosive Disorder • Psychotic disorders • Autism • Asperger’s Syndrome • Reactive Attachment Disorder • Traumatic Brain Injury • Antisocial Personality Disorder • Borderline Personality Disorder

21. Comparing FASD, ADHD and Oppositional Defiant Disorder

22. Comparing FASD, Adolescent Depression and Adolescent Bipolar Disorder

23. Typical Treatments Must Often Be Adapted for Those With an FASD • For those with a fetal alcohol spectrum disorder, prevention interventions must be adapted due to: • Difficulty with verbal receptive language processing • Difficulty with multiple directions and multiple tasks • Difficulty processing information on one’s own • Difficulty following through on one’s own • Modeling the behavior of those around them • Difficulty in group situations • Do better one-to-one

24. Friendly Likeable Verbal Helpful Caring Determined Have points of insight Good with younger children* Not malicious Strengths of Persons With an FASD Dubovsky, Drexel University College of Medicine (1999)

25. Strategies for Improving Outcomes for Individuals With an FASD • Be aware of language used • Use literal language • Use person first language

26. Use Literal Language • Do not use metaphors or similes • Do not use idiomatic expressions • Think about how what you say could be misinterpreted

27. Person First Language • “He’s a child with FAS” not “he’s an FAS kid” • “My son has FAS (or an FASD)” not “my FAS son” • “I’m working with a mother with FAS” not “I’m working with an FAS mom” • “She has mental retardation” not “she is mentally retarded” • “He has a developmental disability” not “he is developmentally disabled” • “He has schizophrenia” not “he is a schizophrenic” • No one “is” FAS; people may have FAS

28. Notions to Keep in Mind • Both prevention and treatment are key in addressing FASD • Successful treatment is one key to effective prevention • Those at highest risk of giving birth to a child with an FASD are women who have already given birth to a child with an FASD • Providing these women with successful treatment approaches can reduce the incidence of FASD • When an intervention does not work, it is essential to examine for whom it doesn’t work and why it doesn’t work for that person at that time • Remember the paradigm shift

29. “We must move from viewing the individual as failing if s/he does not do well in a program to viewing the program as not providing what the individual needs in order to succeed.” —Dubovsky, 2000 Paradigm Shift

30. Notions to Keep in Mind • Developing comprehensive systems to address FASD can improve outcomes as FASD crosses all systems • Collaboration among agencies and systems is essential • Acknowledgement of turf issues • Pooling of resources • FASD is a human issue • Addressing FASD is a matter of life or death for some