Reaching Women At High Risk – A State System Approach to Changing Behavior

1. FASD Center for Excellence Building FASD State Systems (BFSS) Meeting Reaching Women At High Risk – A State System Approach to Changing Behavior San Francisco, CA May 10, 2006 Therese Grant, Ph.D. Director, Fetal Alcohol & Drug Unit Director, Washington State Parent-Child Assistance Program University of Washington School of Medicine http://depts.washington.edu/fadu

2. The Problem Maternal alcohol and drug use puts children at risk because of · Possible effects of prenatal exposure on the child’s health · Likelihood of a compromised home environment · Likelihood that these mothers will have more exposed, affected children These problems are costly to society and are completely preventable

3. Washington State Parent-Child Assistance Program An intensive, 3-year home visitation intervention for high-risk alcohol and/or drug abusing mothers WHEN CASE MANAGEMENT ISN’T ENOUGH

4. PCAP History 1991-95* Federally funded demonstration: Seattle 1996-98 Philanthropist provides interim funding 1996-97 Governor funds replication in Tacoma 1997-98* Follow-up study, original cohort: Seattle 1997-07* State funding: King and Pierce Counties 1999-07 State funding: Spokane, Yakima, Grant Counties 2005-07 State funding: Cowlitz and Skagit Counties 1998-05 Replications/adaptations: MN, NC, AK, Canada,* TX, NV, LA, PA *Published Outcomes

5. Parent-Child Assistance Program Primary Goal: To prevent future births of alcohol and drug exposed children

6. PCAPFASD Intervention and Prevention • Intervention with mothers • Who drink heavily during pregnancy -- to prevent future alcohol-exposed births • Who may themselves have FASD -- to prevent secondary disabilities and alcohol-exposed births • Intervention with babies • Who have FASD -- to prevent secondary disabilities

7. Advocate/Case Manager Characteristics • Have experienced some of the same types of adverse life circumstances as clients, but seldom to same degree • Have subsequently achieved success in important ways • Are positive role models and offer clients hope and motivation from a realistic perspective

8. PCAP Enrollment Criteria • Used alcohol/drugs heavily during pregnancy • Not effectively engaged with community resources • Are currently pregnant, up to six months postpartum -or- Have delivered a child with a diagnosis of FAS/E

9. PCAP: A Two-Pronged Approach Advocate Clients & Families Community Service Providers

10. PCAP is a three year home visitation model, implemented by well trained and closely supervised advocate/case managers. Caseload recommendation is 15 active client families per advocate. Determine client’s strengths, weaknesses, needs. Advocates connect a client’s service providers with each other to facilitate development of an effective plan. Advocates link clients with appropriate and available community services. Provide advocacy for all family members as needed. Core Components of the Intervention

11. T h e S c o p e o f A d v o c a c y Community Providers Alc/Drug Tx Bio Mom Family Planning Bio Dad Care- takers Siblings Job Training Extended Family Probation Friends Health Care Neighbors CPS Partners Children Mental Health Tx Schools

12. An Ongoing Challenge • Pregnant and parenting women who abuse substances are unfailingly characterized as • “bad mothers.” • They have been labeled unmotivated and difficult—if not impossible—to reach. • These mothers become distrustful of “helping” agencies. The result is that the women at highest risk for delivering children with serious medical, developmental and behavioral problems are the least likely to seek and receive assistance.

13. Mothers in PCAP were themselves the abused, neglected children in our communities just 10-15 years ago. PCAP engages these mothers and their babies together to break the continuum of intergenerational deprivation.

14. Enrollment Characteristics

15. Enrollment Characteristics

16. The Formulafor Preventing Alcohol/Drug Exposed Births • Motivate women to stop drinking or using drugs before and during pregnancy – OR – • Help women who can’t stop drinking or using drugs to avoid becoming pregnant

17. Results: Treatment & Abstinence

18. Results: Family Planning

19. Results: Preventing Future Exposed Births At PCAP replication sites, 78 women were binge drinkers (>5 drinks/occasion) during the index pregnancy. At PCAP exit, 51 (66%) were no longer at present risk of having another alcohol exposed pregnancy: • 24 (31%) using reliable contraception •18 (23%) abstinent from alcohol/drugs >= 6 months •9 (12%) both reliable contraceptive and abstinent

20. Results: Preventing Future Exposed Births • Without PCAP about 30% (23 of 78 ) of drinking mothers would have had another highly exposed birth. • We reduced that by 66%, preventing about 15 alcohol- exposed births. • Incidence of FAS is estimated at 4.7% to 21% among heavy drinkers. Therefore, we estimate PCAP prevented at least 1 and up to 3 new cases of FAS.

21. Results: Cost Savings The average lifetime cost for an individual with FAS is $1.5 million. PCAP costs about $15,000/ client for 3-years (intervention, administration, evaluation). If we prevented just one new case of FAS, the estimated lifetime cost savings = cost of PCAP for 102 women.  

22. Results: Child Custody

23. Results: Income

24. Benefits and Costs of Prevention and Early Intervention Programs for Youth Washington State Institute for Public Policy, July 2004 found an average net benefit of $6077 per client among selected well-researched home visiting programs, including PCAP.* www.wsipp.wa.gov

25. Lessons Learned: Systems Working Together Good things happen when communities implement effective programs and states implement strong policy.

26. Substance Abuse Treatment Division of Alcohol & Substance Abuse(DASA) Increased treatment beds for women: 55 to155 (1991 - 2003)

27. Family Planning DSHS “First Steps”developed to help low income pregnant women obtain services and family planning (1989) WA State: 2 year subsequent birth rate among substance abusing women dropped from 18.7 % to 16.5% (1991-2000) PCAP:2 year subsequent birth rate13% (1991-95) and 13% (1996-03) http://fortress.wa.gov/dshs/maa/familyplan/TCfront.html

28. Safe, Stable Child Placement WA Permanency Frameworkdeveloped to increase rates of permanent placement for children in foster care (1998) PCAP:●With bio mom at exit: 52% (1991-95) and 57% (1996-03) ● 1996-03 cohort half as likely to be in foster care and 3x more likely to be adopted compared to 1991-95 cohort.

29. Lessons Learned: Advice from a Legislator • Find a legislative champion • Know your statistics and build your • case; emphasize results • Keep it simple • Rally your supporters • Build coalitions • Emphasize program cost savings

30. 1. Community level: Facilities Staffing Pool Evaluation 2. County level: E.g., counties have varied child welfare policies, attitude about substance-abusing mothers, and sanctions imposed. 3. State level: If a recipient state doesn’t have a similar supportive infrastructure, outcomes may not be replicated. Lessons Learned: Replicating a Demonstrated Program What infrastructure is necessary in order to implement the model successfully?

32. Ongoing Challenge: Maternal Alcohol Use During PregnancyIt’s not “just alcohol”

33. Local News: Tuesday, November 30, 2004 Kent mother pleads not guilty for infant deaths The Associated Press KENT — A 36-year-old Kent woman accused of letting two of her children starve to death as she lay passed out drunk pleaded not guilty today....

34. Alcohol is a Teratogen…. …. whose neurobehavioral effects have been found to be more injurious than cocaine and other drugs abused prenatally.

35. Hospital Screening Questionnaire at Two Hospitals, Seattle and Tacoma (2002-2004) (N=3145) * 5 or more drinks on an occasion

36. Working With PCAP Participants Who Have Fetal Alcohol Spectrum Disorders (N=19)Funding from the March of Dimes Birth Defects Foundation (2001-2003)“Prevent Double-Jeopardy”

37. Educating Providers About FASD • 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. • Providers learned to deliver services appropriately tailored to specific needs of FASD patients. Education + hands-on experience = FASD demystified

38. Recommended Strategies • Talk in concrete terms; avoid using words with double meanings • Say exactly what you mean – give simple step-by-step instructions. • Have patient demonstrate understanding of directions by showing you the skill; do not rely on her verbal affirmation that she understands. • Include simple (5th grade level) written instructions, with illustrations if possible. • Re-teach and repeat important points at each visit. • Remember that instructions may not generalize to a similar situation. • Aim to stabilize presenting issues rather than pursue a cure for permanent disabilities in reasoning, judgment and memory.

39. An experienced and clinically supported advocate, working in collaboration with her client and a network of educated providers, might reasonably expect to accomplish a number of intervention steps over a 12-month intervention.

40. 1. Securing stable housing, and safe, secure placements for the children. 2. Assisting clients in obtaining inpatient or outpatient treatment and aftercare. 3. Securing a measure of financial stability for the future (SSI, DDD). 4. Assisting clients in choosing a reliable contraceptive method. 5. Establishing an educated network of service providers who will continue to work with clients after the advocate’s services are no longer available. 6. Identifying committed mentors for clients, as most individuals with FASD will require long-term support and assistance. These clients may need life long advocacy, but intervention steps can be taken in the short term: