1. Mental Health Treatment Strategies That Work Building FASD State Systems Meeting San Francisco, CA May 10, 2006 Therese Grant, Ph.D. University of Washington Fetal Alcohol and Drug Unit Parent-Child Assistance Program (PCAP) 180 Nickerson, Suite #309 Seattle, Washington 98109 (206)543-7155

2. Limited research available on effective FASD interventions Premji et al., (2004) reviewed the literature on FASD interventions with youth: 10 studies found; of 7 reviewed … • 2 medication trials • 1 cognitive control study • 1 supplementary reading program • 1 tutoring program • 1 functional analysis study • 1 multisystems collaborative community based intervention

3. With no mental health intervention studies to draw on… What to Do? Look to • Clinical data from professionals, teachers, and parents who have seen positive changes using an intervention. • Practices shown to be effective with otherdisorders that are being adapted for those with FASD (e.g., ADD).

4. There’s no cookbook solution for FASD intervention “One-size doesn’t fit all” - Each individual has a different neuropsychological profile (depending on timing and dosage of prenatal alcohol exposure). - Variability is the hallmark of FASD (within individuals AND between individuals).

5. A source of FASD mental health problems: organic brain damage associated with prenatal alcohol exposure The primary disability of FASD is permanent brain damage, manifest as neuropsychological deficits and neurobehavioral problems.

7. FASD = Neurobehavioral Disability • Neuropsychological deficits do not go away. • They impact the individual’s ability to participate in interventions because of problems with: • Executive functioning • (sequencing of behavior, cognitive flexibility, response inhibition, planning, organization of behavior) • Attention • Memory • Hypersensitivity to sensory stimulation • Impulsivity • Receptive language

8. Strategy: Direct Therapeutic Intervention Treat primary mental health problems (e.g., depression, anxiety disorder) with interventions adapted to the individual’s neuropsychological and health profile.

9. Strategy: Direct Therapeutic Intervention PRINCIPLES: • Accommodation vs. Cure: Can’t “cure” the existing brain damage • Change the environment, not the person (physical environment, attitudes) • Individualize: Base intervention on the person’s unique neuropsychological and health profile • Adapt interventions: Alter existing interventions based on individual’s learning style, memory problems, attention deficits, etc. • Maintain intervention: Consistency • Involve others

10. A Second Source of Mental Health Problems: Distress caused when a person with FASD does not receive appropriate support to address their neurobehavioral deficits, leading to chronic failure, loss, frustration, victimization (“secondary” mental health problems).

11. Strategy: Comprehensive Prevention Intervention Provide sustained, comprehensive, multi-systemic and developmentally appropriate support to the individual with FASD.

12. Strategy: Comprehensive Prevention Intervention • PRINCIPLES: • Multi-systemic (medical care; mental health; school; social service; vocational training agency; social services; family; church) • Multi-modal (individual therapy; family therapy; medication; vocational training/job coaching; case management; support groups) • Individualized (based on comprehensive assessment) • Life-span perspective (sustain the support) • Family-based(involve caregivers/advocates)

13. Mental Health • Psychotherapy focusing on concrete issues (e.g., anger management; social skills; coping with depression) • Therapy should also address the emotional pain of being different, having a disability • Refer to support groups for individuals with FASD and their families • Refer for family therapy • Respite care for family members to prevent burnout and development of stress-related health problems

14. Mental Health • Traditional talk therapy is not helpful due to the language, memory, and attention problems typical of individuals with FASD • BUT, psychotherapy, adapted to the individual’s learning style (i.e., multi-sensory vs. only auditory-verbal; role playing; use of art) can be very beneficial • Requires creativity, persistence, clinical intuition on the part of the therapist • Involve patient in the process (learning style; cultural sensitivity)

15. Mental Health • Carefully monitor suicidal ideation • Individuals with FASD @ risk for suicide • Considerable overlap between the risk factors for suicide and the clinical profile of FASD (e.g., impulsivity; co-occurring mood disorder; substance abuse problems) • Also vulnerable due to: job loss, relational loss, social isolation

16. Mental Health Psychiatric medication • Medication management is complex: • organic brain damage (structural and/or neurochemical) • alcohol-related birth defects (e.g., liver) affect metabolism of medication • presence of multiple co-morbid conditions • Risk: overmedication & negative side effects • Benefit: control symptoms & allow individual to participate in interventions

17. Social Relationships • Arrange recreational activities that provide safe social contacts and friendships • Provide ongoing education regarding appropriate sexual behavior and how to protect against victimization • Monitor social relationships and use of leisure time • Teach friendship skills

18. Financial • Guardianship of funds may be required or a protective payee • Individual should be raised with the idea that he/she will need help managing money • Monitoring finances to ensure individual is living within means and not being financially victimized

19. Vocational • Specialized job training • Sheltered employment • Long-term job coaching/training • Special focus on social aspects of work (getting along with co-workers; inappropriate vs. appropriate behavior at work)

20. Physical Health • Regular primary health care • Specialty care if there are ARBDs affecting kidney, liver or heart • Ongoing education regarding appropriate family planning • Focus on the more reliable methods of family planning (e.g., IUD)

21. Housing • Residential placement may be necessary • In-home support for those able to live independently • Ongoing supervision and monitoring to ensure safety

22. FASCETS Oregon: Fetal Alcohol Project • Three-year study examining the efficacy of interventions that addressed the neurocognitive issues of FASD • Trained multidisciplinary/multi-systemic teams who worked with children/adolescents (ages 3-14) • Pretest-posttest results (N=19): • Reduced irritability, disruptiveness, anger, aggression, and depression in the children and adolescents • Reduced levels of stress in adult caregivers • Improved self-efficacy in parents and professionals (Malbin, 2006)

23. Diane Malbin FASCETS (Fetal Alcohol Syndrome Consultation Education and Training Services, Inc.) P.O. Box 83175 Portland, Oregon  97283 Phone/Fax:  503-621-1271 www.fascets.org dmalbin@fascets.org

24. Parent Child Assistance Program: Double Jeopardy Project PCAP: An intensive, 3-year advocacy/case management intervention serving high-risk alcohol and/or drug abusing mothers. Double Jeopardy: One-year project funded by the March of Dimes to assist women in PCAP with FASD and develop a community service training model Grant, T., Huggins, J., Connor, P., & Streissguth, A. (2005) Grant, T., Huggins, J., Connor, P., Pedersen, J., Whitney, N., & Streissguth, A. (2004)

25. Components of PCAP Relevant for Individuals with FASD • Each mother paired with an advocate for 3 years • Advocate develops and coordinates a network of contacts with family, friends, and providers • Advocate links client with appropriate community services and/or providers and coordinates this service network • Individualized service plan • Advocates also provide advocacy for other family members as needed

26. Psychosocial Profile: PCAP FASD Clients (N=19) Average age = 22 Years (Range = 14-36) Mostly white (60%), unmarried (85%), and poorly educated (45%) Troubled life history profile • Family history drug/alcohol abuse (100%) • Sexual abuse (79%) • Physical abuse (84%) • Unstable and disrupted care giving (100%) High levels of psychiatric distress and behavioral problems Poor quality of life relative to other at-risk populations

27. Advocates’ Experience:“She just doesn’t get it!” • The impact of neuropsychological deficits was obvious. • Advocates had to modify their usual approaches. • Clients were often unable to learn new skills or learned them very slowly.

28. Role of Advocate • Implemented an intervention plan appropriate for an FASD client • Helped providers understand the relationship between organic brain damage and the FASD client’s behavior • Reinforced use of clinical management strategies

29. Strategies When TreatingClients with FASD • Use short sentences, concrete examples, and avoid analogies • Present information using multiple modes • Simple step-by-step instructions (written and/or with pictures) • Role-playing • Ask patient to demonstrate skills (don’t rely solely on verbal responses) • Revisit important points during each session

30. Strategies When TreatingIndividuals with FASD • Teach generalization (don’t assume it will occur) • Help client identify physical releases when escalating emotions become overwhelming • Be alert for changes/transitions—monitor more carefully, do advance problem-solving

31. "I thought I was weird. I thought I didn't belong here. And then when I talked to (PCAP advocate), it was like wow! You know what I’m talking about!” - A PCAP Client with FASD

32. Community Service Providers: What We Found • Providers knew very little about FASD. • Providers had limited direct experience with this population. • Few services were suited for individuals with FASD. • Obtaining a diagnosis in adulthood was difficult. • Even for experienced PCAP advocates, working with an FASD client was more difficult than working with a typical PCAP client.

33. Educating Providers • We identified key providers interested in the problem, and willing to work with a PCAP client with FASD • We provided: FASD education, a PCAP case manager, and back-up consultation as problems arose • Education + hands-on experience = FASD demystified • Providers learned to deliver services appropriately tailored to specific needs of FASD patients.

34. 12-month Outcomes 16/19 were receiving medical &/or mental health care 14/19 were abstinent from both drugs and alcohol (11 maintained abstinence; 3 newly in recovery) 5/19 were still using drugs/alcohol but 3 of these 5 were using reliable birth control methods (2 tubal ligations, 1 Depo Provera). 14/19 were using contraception regularly (Depo = 7; Tubal = 3; IUD = 2; OCPs = 2); 16/19 obtained stable housing

35. Reflection on Outcomes • Result: We connected clients to providers and educated providers about FASD • Problem: People with FASD require coordinated services throughout the lifespan • Conclusion: Need a FAS Advocate program (FASA) modeled after PCAP that provides longer-term advocacy to help clients and families navigate complex community systems of care

36. Conclusion: Need for FAS Advocate program (FASA) modeled after PCAP that provides longer-term advocacy • Well-trained advocate assigned to an FASD client and his/her family • Link client with community services and providers • Help client and family navigate complex community systems of care • Advocate supported by intensive training, supervision, and peer support