Strategies for Identifying and Serving Clients with FASD

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1 Strategies for Identifying and Serving Clients with FASD CATHY WORTHEM, LMSW CCS BARBARA WYBRECHT, RN, BSN, PHN ROB WYBRECHT July 24, 2015

2 Learning Objectives List three issues faced by adolescents and adults with FASD Name three core elements of screening adults for potential FAS Differentiate between enabling and accommodating for FASD. Identify three strategies for modifying services for individuals with an FASD

3 Fetal Alcohol Spectrum Disorders (FASD) THE BASICS

4 What is FASD? Umbrella term for the range of effects that can occur with prenatal alcohol exposure Not a diagnosis Diagnostic terms include: Fetal Alcohol Syndrome Partial Fetal Alcohol Syndrome Alcohol Related Neurodevelopmental Disorder DSM 5 Neurodevelopmental Disorder Associated with Prenatal Alcohol Exposure (F88) Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (Section III)

5 Co-occurring Use of Drugs and Alcohol A significant proportion of individuals who use illegal drugs also use alcohol Of all the substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus. IOM Report to Congress, 1996

6 Alcohol and Women All beverages with alcohol are harmful to the fetus E.g. wine spritzers, beer, wine, mixed drinks A drink a drink a drink Kaskutas and Graves (2001) studied alcohol and consumption in 321 pregnant women When self selecting drinks, their estimated drink size was up to 307% greater than standard measures

7 How Much Is Too Much? Risky drinking is any level of alcohol consumption that increases the risk of harm to a person s health or well-being or that of others. For women, exceeding 3 drinks per occasion or more than 7 drinks per week is considered risky 4 or more drinks consumed within 2 hours is considered binge drinking Health conditions are also a consideration Any drinking is risky for women who are pregnant or might become pregnant

8 What is a Drink?

9 How Do You Ask?

11 Profile of Birth Mothers of Children with FASD 96% had one to ten mental health disorders 59%: 22%: 7%: 77%: Major depressive episode Manic episode/bipolar disorder Schizophrenia PTSD 95% had been physically or sexually abused during their lifetime 79% reported having a birth parent with an alcohol problem Astley et al 2000

12 Incidence & Prevalence of FASD FASD affects more infants each year than Spina Bifida, Down Syndrome and Muscular Dystrophy combined (SAMHSA 2003) Generally accepted incidence of FASD in North America has been 1 in 100 live births Recent studies are identifying a prevalence of between 2% and 5% (1 in 50 to 1 in 20) Much higher percentage in systems of care

13 Recognizing FASD

14 FASD and the Brain Prenatal alcohol exposure leading to an FASD causes brain damage Behaviors often appear to be purposeful Behaviors are often due to brain damage

15 Drinking During Pregnancy.. Causes Lifelong Brain Damage Although virtually any organ in the body can be damaged, the brain and the central nervous system are at greatest risk and for the longest period of time.

Callosum Normal FAS/PEA FAS Connects the two halves of the brain May

18 Brain Structures Affected by Prenatal Alcohol Exposure Basal ganglia, especially the caudate nucleus Cognition Emotion Motor Activity Corpus Callosum Normal FAS/PEA FAS Connects the two halves of the brain May plan a role in communication with the brain Image courtesy of Dr. S. Mattson

19 Brain Structures Affected, cont. Frontal Lobes Control emotional responses and processing of humor Control expressive language Responsible for abstract thinking Assign meanings to words Control aggression Are involved in processing information Are involved in deciding how to act in a specific situation

20 Brain Structures Affected, cont. Hippocampus Memory Learning Emotion Aggression Amygdala Fear Stress and Anxiety Anger Aggression

21 Possible Protective Factors Choline Zinc and Iron It may be useful to get levels of these in individuals who may have an FASD and women who are pregnant and have been drinking Bi-manual exercise

22 What to Expect from a Person with an FASD Friendly Talkative Strong desire to be liked Desire to be helpful Naive and gullible Difficulty identifying dangerous people or situations Difficulty following multiple directions/rules Copy the behavior of those around them Literal, concrete thinking

23 Difficulties with Literal Thinking Do exactly as told Difficulty with: Sense of time Sense of space Reward and consequence systems Managing money Sarcasm, joking, similes, metaphors, proverbs, idiomatic expressions

24 Sayings That May Be Misinterpreted Clean your room Take a shower Go take a hike Go to your room and think about what you did wrong Behave yourself Come over anytime Don t drink and drive Follow the rules Do what I told you to do

25 Language Issues in FASD Early language development often delayed Often very verbal as adults Verbal receptive language is more impaired than verbal expressive language Verbal receptive language is the basis of most of our interactions with people

26 FASD Timeline Actual age of individual: 18 Skill Developmental Age Equivalent Expressive Language====================> 20 Comprehension ====> 6 Money, time concepts ====> 8 Emotional maturity => 6 Physical maturity ===================> 18 Reading ability =================> 16 Social skills =========> 7 Living skills =============== >11

27 Situations That Rely on Verbal Receptive Language Processing Parenting techniques Elementary and secondary education Child welfare Judicial system Treatment Motivational Interviewing Cognitive Behavioral Therapy Group therapy AA/NA groups

28 Recognizing FASD means The individual is seen as having a disability Frustration and anger are reduced Trauma and abuse can be decreased or avoided Approaches can be modified Diagnoses can be questioned

29 Not Recognizing FASD means Many moves as children Repeated abuse and trauma Failure with typical approaches Perceived as bad or stupid High risk of being homeless, jail or dead

30 For a Caregiver with FASD this means Labeled as neglectful, uncaring or sabotaging Removal of their children from their care Failure to follow through with multiple instructions Parenting rights are terminated May have another alcohol exposed pregnancy

31 How Do We Recognize FASD? No simple test or blood test Diagnostic capacity for adults is limited Screening helpful Diagnostic Clinics

32 Life History Screen 28 questions, 9 categories 11 questions based on the Addiction Severity Index Asking questions through the lens of FASD Not designed to ask all questions on the first day of treatment Guide for treatment approach

33 Life History Screen Categories Childhood History Maternal Alcohol Use Education Criminal History Substance Use Employment and Income Living Situation Mental Health Day to Day Behaviors

34 Life History Screen Scoring Two methods to screen positive: A red flag response for each of the three key life history domains A red flag response for two of the three key life history domains and a red flag response for at least two of the other six life history domains Working towards validation of screen and cut off score

35 Providing Services for an Individual with FASD

36 Challenges for Families and Professionals Serving an individual with FASD challenges basic tenets of treatment and all interactions People need to take responsibility for their actions People learn by experiencing the consequences of their actions People are in control of their behavior Enabling and fostering dependency are to be avoided in treatment May bring up issues in our own lives Treatment of co-occurring issues must be different if a person also has an FASD

37 Substance Use Disorder FASD Mental Health Disorder D Dubovsky 2010

38 Substance Use Disorder Environment Mental Health Disorder FASD D Dubovsky 2010

39 Co-Occurring Disorders with FASD Attention-Deficit/Hyperactivity Disorder Schizophrenia Depression Bipolar Disorder Substance Use Disorders

40 Co-Occurring Disorders with FASD Sensory Integration Disorder Reactive Attachment Disorder Separation Anxiety Disorder Posttraumatic Stress Disorder Traumatic Brain Injury Risk for Borderline Personality Disorder Medical Disorders (e.g., seizure disorder, heart abnormalities, cleft lip and palate)

41 Possible Misdiagnoses with FASD ADHD Oppositional Defiant Disorder Conduct Disorder

42 Comparing FASD, ADHD and ODD Behavior Underlying Cause for the Behavior FASD ADHD ODD May or may not take in the information Cannot recall the information when needed Cannot remember what to do Does not complete tasks Takes in the information Can recall the information when needed Gets distracted Takes in the information Can recall the information when needed Chooses not to do what they are told Interventions for the Behavior Provide one direction at a time Limit stimuli and provide cues Provide positive sense of control, limits, and consequences D Dubovsky 2002

43 Comparing FASD, Adolescent Depression and Adolescent Bipolar Disorder FASD Acting out, antisocial behavior Misreading social cues; modeling others; difficulty communicating thoughts and feelings Provide a mentor to model positive behaviors; utilize a lot of role playing Adolescent Depression Acting out, antisocial behavior Depression Psychotherapy to address issues; protect from harm; medication (antidepressant) with careful monitoring Adolescent Bipolar Disorder Acting out, antisocial behavior Mania or hypomania Psychotherapy to address issues; protect from harm; medication (mood stabilizer) D Dubovsky 2006

44 Possible Misdiagnoses for Individuals with FASD Adolescent Depression Bipolar Disorder Intermittent Explosive Disorder Autism/High Functioning Autism Reactive Attachment Disorder Traumatic Brain Injury Antisocial Personality Disorder Borderline Personality Disorder

45 Difficulties in Treatment Settings Sporadic in keeping appointments Problems doing things on their own Consistently get into difficulty with others Viewed as manipulative, unmotivated and noncompliant Wander away, fade out, space out and/or talk inappropriately in group Need a lot of one-to-one support Appear to be intrusive and rude Have the same issues week after week

46 A Strengths Based Approach to Improving Outcomes Identify strengths and desires in the individual What do they do well? What do they like to do? What are their best qualities? What are your funniest experiences with them? Identify strengths in the: Family Providers Community/Culture

47 Strengths of Persons With an FASD Friendly Likeable Verbal Helpful Caring Hard Worker Determined Have points of insight Good with younger children Not malicious Every day is a new day

48 Modifications to Approaches Based on scientific knowledge of brain damage in FASD All modifications do not need to be used with every person The team should identify the modifications to be implemented for a particular individual and family

49 Enabling vs Accomodation

50 Modifications Reduce stimuli in their environment Consistency Frequent contact Multi-sensory approach Simplify and review

51 Modifications Designate a go to person Identify a mentor or treatment buddy Role play situations the person may get into Frequent repetition due to damage to working memory

52 Circle and Fence Circle of Support Fence N Whitney 2010

53 Modifications Positive reinforcement system Use a calendar for daily planning Use literal language Managing finances Evaluate need for payee or guardian Assist with completion of forms

54 Modifications-Treatment Approach Limit the number of plans and goals Prepare individual for change Be careful about using verbal instructions and treatment approaches Address signs of stress and anxiety

55 Modifications-Treatment Approach Point out misinterpretations of words and actions when they occur Plan carefully for groups Have the person carry a small notebook so that providers can write down appointments, instructions, etc.

56 Other Strategies For Improving Outcomes Identify strengths in the individual, family and providers Find something the person likes to do and does well (that is safe and legal) and arrange to have the person do that regardless of behavior Create chill out spaces in each setting Use person first language

57 Person First Language He s a child with FAS, not He s an FAS kid She is a woman with a substance use disorder, not She s a substance abusing woman A mother with FAS, not an FAS mom He has schizophrenia not He is a schizophrenic Ms. Smith not mom No one is FAS although a person may have FAS

58 Other Strategies for Improving Outcomes Set the person up to succeed Providing in vivo parenting rather than parenting classes Model appropriate behaviors with the person Simplify medication schedules Ensure other systems understand FASD

59 Additional Interventions to Consider Art therapy Movement and dance therapy Cultural traditions and rituals Animal assisted therapy Exercise

60 Preparation for Life Address parenting issues Evaluate mental health needs Identify a treatment setting that understands FASD Arrange for warm handoffs Check in regularly with the person after leaving services Reinforces that someone cares

61 Final Thoughts to Keep in Mind Creativity is essential in identification of services Identifying and supporting strengths and validating accomplishments is essential Developing true collaborative relationships between agencies and systems is essential as FASD crosses every system of care

62 Final Thoughts Correctly recognizing and addressing FASD can reduce long term costs and improve outcomes for the individual, family, agency and system By successfully intervening with women who have an FASD, we can reduce the incidence of alcohol exposed pregnancies

63 Final Thoughts We want to help people succeed Whatever it takes is an important attitude Ask the question what does this woman need in order to be successful and how do we help her achieve it? Foster interdependence FASD is a human issue

64 References Grant TM, Novick Brown N, Dubovsky D, Sparrow J, Ries R. The Impact of Prenatal Alcohol Exposure on Addiction Treatment. Journal of Addiction Medicine 2013; 7(2) Grant TM, Novick Brown N, Graham JC, Whitney N, Dubovsky D, Nelson LA. Screening in treatment programs for Fetal Alcohol Spectrum Disorders that could affect therapeutic progress. International Journal of Alcohol and Drug Research 2013; 2(3) Dubovsky D, Improving Outcomes for Individuals, Families, and Agencies by Recognizing Fetal Alcohol Spectrum Disorders and Modifying Approaches Accordingly. 2015

65 Resources SAMHSA FASD Center for Excellence: Centers for Disease Control and Prevention FAS Prevention Team: National Institute on Alcohol Abuse and Alcoholism (NIAAA): National Organization on Fetal Alcohol Syndrome (NOFAS): These sites link to many other Web sites

66 THANK YOU! CONTACT INFORMATION: CATHY WORTHEM BARBARA WYBRECHT

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2/23/ Transition Conference Harrisburg PA February 23, 2017 2017 Transition Conference Harrisburg PA February 23, 2017 1 ddubovksy@verizon.net 215-694-8450 2 is a spectrum of disorders There is a wide range of intellectual capabilities in individuals with an There