THE ROLE OF THE SOCIAL WORKER IN PREVENTING, IDENTIFYING AND

TREATING FETAL ALCOHOL SPECTRUM DISORDER (FASD)

Presented by:

Leigh Tenkku Lepper, PhD, MPH David Deere, LCSW

Learning Objectives Participants will: Be able to describe Fetal Alcohol Spectrum Disorders Understand ways in which the social worker may help

women clients reduce or quit alcohol use and prevent them from having a child with an FASD.

Learn how the social worker can identify clients who they suspect may have an FASD.

Learn ways in which the social worker can use current evidence-based interventions to treat or improve the lives of those living with an FASD and their caregivers.

What is FAS Fetal Alcohol Syndrome (FAS) is a disorder resulting from maternal prenatal use of alcohol resulting in abnormalities in the child covering three domains: growth neurobehavioral abnormalities facial abnormalities Historically, many terms have been used to describe individuals affected by maternal alcohol use during pregnancy. Fetal Alcohol Spectrum Disorders (FASD) is the umbrella term used to describe the range of effects that can occur in an individual whose mother drank alcohol during pregnancy.

The child presents with damage to the central nervous system from prenatal alcohol exposure which includes facial features such as a smooth philtrum.

The child presents with the damage to the central nervous system from prenatal alcohol exposure but does not exhibit the facial features.

The child presents with a variety of organ systems issues (i.e. heart, kidneys, bones, hearing, or a mixture) from prenatal alcohol exposure.

What are Fetal Alcohol Spectrum Disorders?

Neurodevelopmental Disorders-Prenatal Alcohol Exposure (ND-PAE), new 2013 315.8 Other Specified Neurodevelopmental Disorder: Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure (ND-PAE) Why DSM-5 Diagnosis Was Needed There was no mental health code that adequately

documented the cognitive and mental health impacts of prenatal alcohol exposure

People with FASD may not respond to treatments used with the existing codes

Providers and families often struggled with obtaining reimbursement for habilitative care

Diagnosis of ND-PAE requires meeting all seven criteria: I. History of Prenatal Alcohol Exposure More than Minimal Levels of PAE More than 13 drinks per month or more than 2 on one

occasion If one meets criteria for full FAS then ND-PAE can be

diagnosed without documented exposure Documentation can be from maternal self-report,

medical and other records, or clinical observation

II. Neurocognitive Impairment As evidenced by 1 (or more) of the following:

1. Global intellectual impairment 2. Impairment in executive functioning 3. Impairment in learning 4. Impairment in memory 5. Impairment in visual spatial reasoning

III. Impairment in self-regulation in 1 (or more) of the following:

1. Impairment in mood or behavioral regulation 2. Attention deficit 3. Impairment in impulse control

IV. Deficits in Adaptive Functioning Skills As manifested in 2 (or more) of the following, including at least (1) or (2):

1. Communication deficit 2. Social impairment 3. Impairment in daily living 4. Motor impairment

V. The onset of the disturbance before 18 years of age. VI. The disturbance causes clinically significant distress

or impairment in social, occupational, or other important areas of functioning.

VII. The disturbance is not better explained by the direct physiological effects associated with postnatal use of a substance (e.g., medication, alcohol or other drugs), a general medical condition (e.g., traumatic brain injury, delirium, dementia), other known teratogens (e.g., Fetal Hydantoin syndrome), genetic condition (e.g., Williams syndrome, Down syndrome, Cornelia de Lange syndrome), or environmental neglect and/or abuse

Fetal Development and FASD

Fetal Alcohol Spectrum Disorder is a spectrum disorder because brain damage, which is the primary condition, is based on when the mother drank during fetal development. Therefore each child will present with different challenges in occupational performance and cognitive abilities.

Typical Brain Damage in FASD

Prevalence of FAS/FASD May et al 2009 prevalence in younger school children

may be as high as 2-5% in the US Sampson et al 1997 combined rate of FAS and ARND,

or all FASDs estimated at 9.1/1000 live births in some Western European countries

May and Gossage 2001 FAS, ARBD, and ARND may affect as many as 10 per 1,000 live births or more depending upon the specific diagnostic methods and criteria used.

FASD and Secondary Conditions

FASD

Mental Health

Problems

Legal Problems School Problems

Sexual Problems

Dependent Living

Alcohol & Drug

Problems

Challenges of Parenting Children with FASD

Challenge Statement

Preventing Setbacks Giving constant reminders

Making Time for Myself Burnout

Keeping Plans Going away on a holiday

Home-School Collaboration Expectations too high in school

Keeping Child Involved Getting a diagnosis

Lack of Support Not knowing what resources I can access

Social Isolation Not invited to birthday parties

Behavioral Problems Does not understand consequences

Brown & Bednar, 2004

Ryan, Bonnett, Gass, 2006)

The Assessment Circle client

worker

related systems

The assessment circle represents the interrelated nature of the systems which interact in the assessment process.

Social Worker Roles

Micro roles: Assessment Counseling/Psychotherapy Group Work Case management/care coordination Education and Support Referral Discharge/transition planning

Macro roles:

Advocacy, Education Resource Development Network Building Policy Making

Social Workers Roles - Micro

Prevention Educate women

about pregnancy & drinking

Educate social work providers about FASD

Identification Observe & document

behaviors & facial features

Talk to mom about drinking

history

Diagnosis Refer to diagnostic team Be a part of a

diagnostic team

Management SW intervention Address secondary conditions

Social Work and FASD Most Social Workers encounter a child with FASD due to

a referral from other social workers, case workers, medical personnel, teachers, or parents. Common presenting issues: Mental health issues ADHD, depression, anxiety Issues in school not attending Behavioral issues aggression, defiance, oppositional,

inattention, poor judgment Social Issues unable to get along with others, or lack

of friendships Developmental Delays typically behind development

for their age

Social Work Intervention Assessment:

Biopsychosocial of family and child needs Screening for mental/behavioral health issues Standardized assessment instruments Financial concerns/stresses Assess alcohol issues in family

Collect and review collateral information: Preschool records Educational records/assessments (EI) Medical Records

Alcohol Screening and Brief Intervention Referral and Treatment (SBIRT) Is a clinical preventive service Involves a validated set of screening questions to help

identify client drinking patterns Includes a short conversation with client who may be

drinking too much For clients drinking at high risk levels, may include referral

to specialized treatment Brief intervention takes only a few minutes, is inexpensive

and may be reimbursable.

Adept.Missouri.edu

Alcohol and Drug Educa,on for Preven,on and Treatment: SAMHSA funded at MU

Developed online training modules to teach MI

Conducted role play component of MI in the clinical simula,on center using Face to Face simulated encounters with trainee (physician) and Standardized Pa,ent

SBI Training in Virtual World using Avatars

Counseling/Psychotherapy Family

Behavioral issues Family relationships

Individual Coping skills Social skills

Group Support Education

Education & Support Family Child may appear to be able to function but the brain damage makes

it challenging Cant vs. Wont Tremendous variation in presentation of the child, depending on when

the brain was exposed to alcohol during fetal development

Individual Understanding of diagnosis External Brain accommodating, reframing, brainstorming Social Supports

Diane Malbin, MSW (Fascets.org) The following neurodevelopmental characteristics are commonly associated with FASD. No one or two is necessarily diagnostically significant; many overlap characteristics of other diagnoses, e.g. ADD/ADHD, learning disabilities, and others. Typical primary characteristics in children, adolescents, and adults include: Memory problems Difficulty storing and retrieving information Inconsistent performance ("on" and "off") days Impulsivity, distractibility, disorganization Ability to repeat instructions, but inability to put them into action ("talk the

talk but don't walk the walk") Difficulty with abstractions, such as math, money management, time

concepts Cognitive processing deficits (may think more slowly) Slow auditory processing (may only understand every third word of

normally paced conversation) Developmental lags (may act younger than chronological age) Inability to predict outcomes or understand consequences

Strengths Many people with FASD have strengths which mask their cognitive challenges. Highly verbal Bright in some areas Artistic, musical, mechanical Athletic Friendly, outgoing, affectionate Determined, persistent Willing Helpful Generous Good with younger children

Preventable secondary characteristics In the absence of identification, people with FASD often experience chronic frustration. Over time, patterns of defensive behaviors commonly develop. These characteristics are believed to be preventable with appropriate supports. Fatigue, tantrums Irritability, frustration, anger, aggression Fear, anxiety, avoidance, withdrawal Shut down, lying, running away Trouble at home, school, and community Legal trouble Drug / Alcohol abuse Mental health problems (depression, self injury, suicidal

tendencies)

Partners for Success Intervention WHAT: In PFS, we used a combined approach of working with

both the family and the individual to address maladaptive behaviors of the young adult over a six month period.

WHO: 42 individuals diagnosed with FAS or other disorder under the umbrella of FASD and their families randomized to intervention versus control

WHEN: Started March 2011 and completed in August 2012 HOW: Intervention group received bi-weekly therapy sessions

with trained LCSW therapist. Youth met bi-weekly with a trained BSW mentor

RESULTS: No difference between groups for the youth Intervention parents improved coping skills, decreased their self-

controlling behaviors and increased their acceptance of responsibility scores.

FASD & The Educational System Need for early intervention

IEP or 504 plan Adaptation of environment to meet needs

Social/Peer Issues

Found at mrfastc.missouri.edu/services

Case Management Medical Educational Mental Health Financial

Disability SSI Adulthood

Independent living Financial stability/resources

Money management SSDI

Employment and help with staying on the job

Referral Community resources Medical

Diagnosis Potential complicating medical issues Supporting therapies

Occupational therapy Sensory Integration Physical therapy Speech Therapy

Educational Special Education or 504 plan Supporting therapies for learning

Poor judgment Challenges with abstract concepts Poor execu,ve func,oning

InaIen,ve Impulsive Social challenges

Mixed sensory responses High rates of Sensory Processing Disorder

Balance problems Challenges with: Fine motor Gross motor

Motor & Praxis

Sensory Issues

Cogni,on Behavior Regula,on

Source: Doll, J. D. (2013). The role of occupational therapy with fetal alcohol spectrum disorder (FASD).

Retrieved from http://www.heartlandcenters.slu.edu/mrfastc/ot/

Social Workers Roles - Macro

Resource Development

Find interventions and written materials

Write locally relevant materials

Network Building

Join existing coalitions and

groups Organize new

coalitions

Program Development

Determine assets and

needs

Build on strengths to

develop services and supports

Advocacy and

Education

Increase awareness

and understanding

Advocate for change in rules

and laws

Resource Development

Information dissemination is a way to increase awareness and knowledge

Become knowledgeable about where to find reliable resources, then direct people to those materials or distribute the materials directly

In some cases, you may want to adapt materials for local settings and programs

Resource Identification and Development WEB LINKS: NOFAS Resources: www.nofas.org/resources SAMHSA: fasdcenter.samhsa.gov Centers for Disease Control and Prevention: www.cdc.gov/ncbddd/fasd/ National Institute on Alcohol Abuse and Alcoholism (NIAAA):

www.niaaa.nih.gov/research/major-initiatives/fetal-alcohol-spectrum-disorders FAS Community Resource Center: www.come-over.to/FASCRC (site for families) American Academy of Pediatricians (AAP): www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/fetal-alcohol-spectrum-disorders-tooklkit/Pages/

default.aspx

American Congress of Obstetricians and Gynecologists: http://www.acog.org/About_ACOG/ACOG_Districts/District_II/Fetal_Alcohol_Spectrum_Disorders

Network Building In some cases you may find an existing network to join

- Add your skills and expertise - Invite your colleagues to also join the network

If you dont find the desired network, you may be the person to start the collaboration

- Look to programs whose purpose overlaps with concerns within the FASD community, beginning with programs that exist in every state - Reach out to programs that are unique to your locale

Network Building through Agencies Involved with FAS WEB LINKS

NOFAS: http://www.nofas.org/affiliates

http://www.nofas.org/resource-directory

University Centers on Disabilities: www.aucd.org State Developmental Disabilities Agency: www.nasddds.org/state-agencies Early Identification (Part C for 0-3 y/o): ectacenter.org/contact/ptccoord.asp IDEA Section 619 (3-5 y/o): ectacenter.org/contact/619coord.asp Title V: www.amchp.org/Policy-Advocacy/MCHAdvocacy/Pages/StateProfiles.aspx Adult Protective Services: www.napsa-now.org/get-help/help-in-your-area The Arc: www.thearc.org/find-a-chapter March of Dimes: www.marchofdimes.org/chapter_view_all.asp Easter Seals: www.easterseals.com/connect-locally National Alliance on Mental Illness (NAMI): www.nami.org/About-NAMI Developmental Disabilities Provider Organizations: www.addp.org/

Program Development Use asset mapping to understand strengths and

challenges Build on existing strengths to expand services and to

address areas of need Look at existing and potential networks to enhance

services Consider possible funding options to carry out program

objectives Recruit leadership to carry out strategic plan

Advocacy and Education Depending on your role and your relationships: Educate clinicians Educate policy makers Remember that policies can be as important as laws

- Focus on state agencies and service providers - Educate local, state, and federal elected officials about the realities and costs of FASDs

Allies for Advocacy and Education Disability Rights: www.ndrn.org/en/ndrn-member-agencies.html Legal Services Corporation: www.lsc.gov/find-legal-aid Parent Training and Information Centers (PTI): www.parentcenterhub.org/find-your-center Family to Family Health Information Centers: www.familyvoices.org/page?id=0052

Interventions Early Intervention Services

Research supports early intervention services that can improve child development Services can include therapy to help child from birth to 36 months to talk, walk and interact with

others I.D.E.A. Speech therapy and language delays often do not require a formal diagnosis to receive

treatment

Protective Factors Early diagnosis Involvement in special education and social services Loving, nurturing, and stable home environment Absence of violence

Types of Treatments Fetal alcohol spectrum disorders competency-based curriculum development guide for medical and allied health education and practice. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/fasd/curriculum/index.html

Types of Treatments Medical Care Medication

Stimulants Antidepressants Neuroleptics Anti-anxiety drugs

Behavior and Education Therapy Friendship training (Mary OConnor and colleagues) Specialized math tutoring (Claire Coles do2learn.com) Executive functioning training (Ira Chasnoff alertprogram.com) Parent-child interaction therapy (Heather Carmichael Oldson families moving forward.com) Parenting and behavior management training

Parent Training Alternative Approaches

Discharge/Transition planning Transition planning should:

Be individualized Be a process, not a one-time event Begin early, as early as day one Honor the patient and familys goals, preferences,

observations, and concerns Identify and answer patient or family questions or

concerns, using simple, concrete language Identify resources in that are in place and those needed

for the transition, paying close attention to supports that are needed

Conclusion FASD impacts occupations significantly and it is important

for Social Workers to have a comprehensive understanding of FASD

The field of social work is ideally situated to be a significant provider and support system for the child/adult with FASD and their caregivers.

Lets apply the concepts discussed in this module to the case of Sean

Case Example Sean, 9 years old Pregnancy & Birth

Mother drank to excess several times a week during first trimester Normal vaginal delivery, full term but small for gestational age Child adopted at birth

Developmental History Small for age, but typical growth Difficulties in school Poor social skills Diagnosed with ADHD and low IQ

Parents Report Loving and caring at times Trouble following directions Easily overwhelmed and can become aggressive Needs a great deal of supervision Mother quit her job to meet Seans needs resulting in financial stress for the family Parents exhausted

You are a social worker at a community mental health agency. What assessment, interventions, support and referrals could be helpful to this family.

Quiz 1. The facial features of a child with FAS include all the following except:

a. Smooth philtrum b. Wide set eyes c. Thin upper lip d. Short palpebral fissures

2. The part of the brain most sensitive to alcohol exposure is: a. Hippocampus b. Brainstem c. Cerebellum d. Amygdala

3. The most common secondary condition diagnosed with FASD is: a. ADHD b. Anxiety disorder c. PTSD d. Depression

4. Children with FASD commonly have: a. Mental health issues ADHD, depression, anxiety b. Issues in school c. Social Issues d. Developmental Delays e. All of the above

Quiz 5. The DSM 5 includes a new diagnosis category for those with fetal alcohol spectrum disorders a. ARND b. ND-PAE c. ARBD d. FAE 6. A child/youth with fetal alcohol spectrum disorders may also have secondary conditions such as: a. Mental health problems b. School problems c. Alcohol and drug problems d. Legal problems e. All of the above 7. Intervention services for those with fetal alcohol spectrum disorders can include: a. Medication b. Early intervention services c. Behavior and education therapy d. Parent training e. All of the above

References Brown, JD, Bednar LM, & Sigvaldason N. (2007). Causes of placement breakdown for foster children

affected by alcohol. Child and Adolescent Social Work Journal, 24(4), 313-332. doi:10.1007/s10560-007-0086-9

Brown JD, & Bednar LM. (2004). Challenges of parenting children with a Fetal Alcohol Spectrum Disorder: A concept map. Journal of Family Social Work, 8(3): 1-18

Carr JL, Agnihotri S, & Keightley M. (2010). Sensory processing and adaptive behavior deficits of children across the fetal alcohol spectrum disorder continuum. Alcoholism: Clinical and Experimental Research, 34, 1-11. doi:10.1111/j.1530-0277.2010.01177.x

May PA, and Gossage JP. 2001. Estimating the prevalence of fetal alcohol syndrome: A summary. Alcohol Research & Health 25(3):159- 167. www.niaaa.nih.gov/publications/arh25-3/159-167.htm

May, PA, Gossage JP, Kalberg WO, Robinson LK, Buckley D, Manning M & Hoyme HE (2009). Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies. Developmental Disabilities Research Reviews, 15(3), 176-192.

Ryan DM, Bonnett DM, & Gass CB. (2006). Sobering thoughts: Town hall meetings on fetal alcohol spectrum disorders. American Journal of Public Health, 96, 2098-2101. doi:10.2105/AJPH.2005.062729

Sampson PD, Streissguth AP, Bookstein FL, Little RE, Clarren SK, Dahaene P, Hanson JW, & Graham JM Jr. (1997). Incidence of fetal alcohol syndrome and prevalence of alcohol-related neurodevelomental disorders. Teratology, 56, 317-326.

Tenkku Lepper LE, Wilton G, Doll J, Mitchell K, Senturias Y, Weinberg J. (2015). Competency VI: Treatment Across the Life Span for Persons with Fetal Alcohol Spectrum Disorders. Fetal alcohol spectrum disorders competency-based curriculum development guide for medical and allied health education and practice. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/fasd/curriculum/index.html