# Presentation: 502571

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

**Director, Fetal Alcohol & Drug Unit**
**Director, Washington State Parent-Child Assistance Program**
**University of Washington School of Medicine**
**http://depts.washington.edu/fadu**

**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**

## The Problem

** ****· ****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***

***Maternal alcohol and drug use puts children at risk because of***

## WHEN CASE MANAGEMENT ISN’T ENOUGH

**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***

## 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**

## Primary Goal:

***To prevent future births ***
***of alcohol and drug exposed children***

**Primary Goal:**

**Parent-Child Assistance Program**

## PCAPFASD 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**

## 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 **

## 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**

## PCAP: A Two-Pronged Approach

**Community Service Providers**

**Clients & **
**Families**

**PCAP: A Two-Pronged Approach**

## 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 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. **

## T h e   S c o p e   o f   A d v o c a c y

**Community Providers**

**Alc/Drug**
**Tx**

**CPS**

**Mental Health**
**Tx**

**Schools**

**Health**
**Care**

**Job **
**Training**

**Family**
**Planning**

**Bio**
** ****Mom**

**Bio**
**Dad**

**Siblings**

**Friends**

**Partners**

**Children**

**Neighbors**

**Extended**
**Family**

**Care-**
**takers**

**Probation**

**Notes:**
Client centered

## 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. **

## 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.

**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.**

## Enrollment Characteristics

|  | Original
N=60
(’91 -’95) | Seattle PCAP
N=76 
(’96 -’03) | Tacoma PCAP
N=80
(’96 -’03) |
| --- | --- | --- | --- |
| Childhood Risk Factors

Parent(s) abused   	alcohol/drugs

Physical/sexual abuse

No H.S. diploma or GED

Ever raised outside 	biologic parents’ care

Ran away from home
	mean age |  

76%

72%

52%

-

- | 

84%

80%

43%

34%

62%
11.76 |  

86%

75%

48% 

40%

64%
13.8 |

## Enrollment Characteristics

|  | Original
N=60
(’91 -’95) | Seattle PCAP
N=76 
(’96 -’03) | Tacoma PCAP
N=80
(’96 -’03) |
| --- | --- | --- | --- |
| Age (mean yrs)

Unmarried 

# Prior children (mean)
  		# Living with mom 

Ever incarcerated

Welfare main source of     income | 27.6

97%

 2.1
0.8

79%

83% | 28.7

84%

2.1
0.5

83%

79% | 28.4

86%

2.3
0.8

84%

63%
 |

## The Formula for 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**

## Results: Treatment & Abstinence

| 3-Year Outcomes | Original
N=60
(’91 -’95) | Seattle PCAP
N=76 
(’96 -’03) | Tacoma PCAP
N=80
(’96 -’03) |
| --- | --- | --- | --- |
| 
Follow up rate  

Inpatient or Outpatient Tx complete or in progress

Abstinent at exit for ≥ 6 mo
Abstinent at exit for ≥ 1 yr

Longest abstinence in PCAP ≥ 1 yr 
Longest abstinence in PCAP ≥ 2 yrs

 | 
92.3%

52% 

28%
17%

37%
13% |  
85% 

76%

43% 
34%

59%
22%  | 
 85%

73%

39%
33%

46%
24%
 |

## Results: Family Planning

| 3-Year Outcomes | Original
N=60
(’91 -’95) | Seattle PCAP
N=76 
(’96 -’03) | Tacoma PCAP
N=80
(’96 -’03) |
| --- | --- | --- | --- |
| 
Birth control at intake
Birth control at exit
  	More reliable method

Subsequent birth, (% women)
  	Clean & sober throughout 
  	Entered treatment during 	 | 
3%
73%
43%

28%
18%
47% | 
13%
74%
49%

29%
32%
50% | 
16%
71%
53%

25%
40%
55%
 |

**Results: Family Planning**

## 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**

## 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.  ***

## 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.  **

## Results: Child Custody

| 3-Year Outcomes | Original
N=60
(’91 -’95) | Seattle PCAP
N=76 
(’96 -’03) | Tacoma PCAP
N=80
(’96 -’03) |
| --- | --- | --- | --- |
| 
Custody of TC at Exit
     Bio mother
     Other family
     Foster care
     Adopted | 

52%
19%
26%
4% | 

57%
13%
17%
13% | 

57%
20%
9%
14%
 |

## Results: Income

| 3-Year Outcomes | Original
N=60
(’91 -’95) | Seattle PCAP
N=76 
(’96 -’03) | Tacoma PCAP
N=80
(’96 -’03) |
| --- | --- | --- | --- |
| 
Main income employment
     At intake
     At exit

Main income welfare
     At intake
     At exit | 

0%
12%

83%
50%  | 

3%
29%

79%
26% | 

5%
29%

63%
26% |

## 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**

**Benefits and Costs of Prevention and Early Intervention Programs for Youth**

|  | Benefits | Costs | Benefits per 
Dollar of 
Cost | Benefits
Minus
Costs |
| --- | --- | --- | --- | --- |
| * Home Visiting Programs 
for At-Risk Mothers and Children | $11,089 | $4,892 | $2.27 | $6,077 |

**Good things happen when communities implement effective programs and states implement strong policy.**

**Lessons Learned: Systems Working Together**

## Substance Abuse Treatment

_**Division of Alcohol & Substance Abuse**__** **__**(DASA)**_
**I****ncreased treatment beds for women: 55 to155 (1991 - 2003)**

***Substance Abuse Treatment***

##     WA State:    2 year subsequent birth rate among 			substance abusing women dropped from 		18.7 % to 16.5% (1991-2000)

_**DSHS “First Steps”**_** ****d****eveloped 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)**

***Family Planning ***

**http://fortress.wa.gov/dshs/maa/familyplan/TCfront.html**

## 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.**

## 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**

**Notes:**
Action Plan

## Lessons Learned: Replicating a Demonstrated Program

**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.   **

***What infrastructure is necessary in order to implement the model successfully?  ***

## Slide 31

## Ongoing Challenge: Maternal Alcohol Use During PregnancyIt’s not “just alcohol”

## 	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....

**	****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....**

## Alcohol is a Teratogen....

**...****. whose neurobehavioral effects have been found to be more injurious than cocaine and other drugs abused prenatally.**

## Hospital Screening Questionnaire at Two Hospitals, Seattle and Tacoma (2002-2004) (N=3145)

|  | Any alcohol | Binge* |
| --- | --- | --- |
| 
Month or so prior to pregnancy
 | 43% | 14% |
| 
During pregnancy
 | 13% | 2% |

- * 5 or more drinks on an occasion** **

## 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”

## 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**

## 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.**

**Notes:**
(see handout)

## 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.

**Notes:**
(see handout)

## 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. 

**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:***