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

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Reaching Women At High Risk A State System
Approach to Changing Behavior
FASD Center for Excellence Building FASD State
Systems (BFSS) Meeting
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/fad
u
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The Problem
Maternal alcohol and drug use puts children at
risk because of
Possible effects of prenatal exposure on the
childs 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
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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 ISNT ENOUGH
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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/adaptatio
ns MN, NC, AK, Canada, TX, NV, LA, PA
Published Outcomes
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Primary Goal
Parent-Child Assistance Program
To prevent future births of alcohol and drug
exposed children
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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

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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
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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
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PCAP A Two-Pronged Approach
Advocate
Clients Families
Community Service Providers
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Core Components of the Intervention

• 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 clients strengths, weaknesses, needs.
• Advocates connect a clients 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.

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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
CPS
Neighbors
Partners
Children
Mental Health Tx
Schools
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An Ongoing Challenge

• Pregnant and parenting women who abuse
  substances are unfailingly characterized as
• bad mothers.
• They have been labeled unmotivated and
  difficultif not impossibleto 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.
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• 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.

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Enrollment Characteristics
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Enrollment Characteristics
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The Formula for Preventing Alcohol/Drug Exposed
Births
Motivate women to stop drinking or using
drugs before and during pregnancy
OR Help women who cant stop drinking
or using drugs to avoid becoming pregnant
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Results Treatment Abstinence
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Results Family Planning
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Results Preventing Future Exposed Births
At PCAP replication sites, 78 women were binge
drinkers (gt5 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 gt 6 months 9 (12) both
reliable contraceptive and abstinent
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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.
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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.  
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Results Child Custody
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Results Income
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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
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Good things happen when communities implement
effective programs and states implement strong
policy.
Lessons Learned Systems Working Together

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Substance Abuse Treatment
Division of Alcohol Substance Abuse (DASA)
Increased treatment beds for women 55 to155
(1991 - 2003)
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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 rate 13 (1991-95) and 13
(1996-03)
http//fortress.wa.gov/dshs/maa/familyplan/TCfront
.html
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Safe, Stable Child Placement
WA Permanency Framework developed 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.
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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

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Lessons Learned Replicating a Demonstrated
Program
What infrastructure is necessary in order to
implement the model successfully?

• 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 doesnt have a similar
  supportive infrastructure, outcomes may not be
  replicated.

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Ongoing Challenge Maternal Alcohol Use During
PregnancyIts not just alcohol
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• 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....

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Alcohol is a Teratogen.
. whose neurobehavioral effects have been found
to be more injurious than cocaine and other drugs
abused prenatally.
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Hospital Screening Questionnaire at Two
Hospitals, Seattle and Tacoma (2002-2004) (N3145)
5 or more drinks on an occasion
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Working With PCAP Participants Who Have Fetal
Alcohol Spectrum Disorders (N19)Funding from
the March of Dimes Birth Defects Foundation
(2001-2003)Prevent Double-Jeopardy
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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. Provi
ders learned to deliver services appropriately
tailored to specific needs of FASD
patients.
Education hands-on experience FASD demystified
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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.

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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.
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These clients may need life long advocacy, but
intervention steps can be taken in the short term

• 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 advocates services are no longer
  available.
• 6. Identifying committed mentors for clients, as
  most individuals with FASD will require long-term
  support and assistance.