# Presentation: 696444

## The System of Care Approach toService Delivery for Children andTheir Families

**Building FASD State Systems**
**Kissimmee, FL**
**May 5, 2004**

- Lodi Lipien, MSPH
- Department of Child and Family Studies
- Louis de la Parte Florida Mental Health Institute
- University of South Florida

## Outline

- Scope of Fetal Alcohol Spectrum Disorders
- System of Care (SOC) Background
- Values and Principles of SOC
- SOC Implementation
- Status of SOC Approach
- Resources

**Notes:**
Many of you are experts in FASD, but I’d like to talk briefly about the prevalence and effects of FASD.  When implementing a SOC, it’s important to identify a specific population to be served and to understand the scope of the problem...
Next I’ll provide a definition of systems of care and talk about the development of the SOC philosophy.
I’ll also describe the underlying values and principles of a SOC and talk about how SOC’s are implemented through a theory of change model.
Next I’ll discuss about the status of the SOC approach across the country.
Finally, I’ll conclude with a few resources that you can access for more information.

## Fetal Alcohol Spectrum Disorders

- _Definition_
- Fetal alcohol spectrum disorders (FASD) refers to a group of _physical_ and _mental_ birth defects that result from consumption of alcohol during pregnancy.
- _Prevalence_
- Estimates of FASD prevalence
- are 10 per 1,000 live births, affecting
- about 40,000 infants per year.

**Notes:**
FASD is not a diagnostic term, but it refers to conditions such as FAS, FAE, and alcohol related neurodevelopmental disorders (ARND) and alcohol related birth defects (ARBD).
FAS occurs in 0.5 to 2 per 1,000 live births.

## FAS Prevalence

- Source: Update: Trends in Fetal Alcohol Syndrome -- United States, 1979-1993.
*MMWR*, *44*, 249-251 (1995, April 7).

**Notes:**
This figure shows trends in FAS prevalence from 1979 to 1993 based on data from the national Birth Defects Monitoring Program.  The rate of FAS increased steadily during this time period.  However, we don’t know how the rate may have changed in the past ten years.

## Diagnostic Criteria
Cognitive deficits
Multiple organ dysfunction
Growth retardation
CNS damage resulting in lower IQ
Cranial/facial abnormalities
Behavioral and mental health problems

- Cognitive deficits
- Multiple organ dysfunction
- Growth retardation
- CNS damage resulting in lower IQ
- Cranial/facial abnormalities
- Behavioral and mental health problems

- FASD Effects

**Notes:**
As you know, FASD negatively affects nearly all aspects of human functioning. In particular, children with FASD may exhibit cognitive deficits that result in learning difficulties and poor school performance.  Physical problems can include organ dysfunction, growth deficiencies such as low birth weight, and central nervous system damage that may result in mental retardation or low IQ.  Children with FASD also may have facial abnormalities, and behavioral and mental health problems.

## FASD Mental Health Problems

- Attention disorders
- Depression
- Suicide threats/attempts
- Panic attacks
- Hallucinations

**Notes:**
Specific mental health problems that are associated with FASD include attention disorders and hyperactive behavior, depression...

## FASD Long-Term Consequences

- Source:  Streissguth, A. P., Barr, H. M., Kogan, J., & Bookstein, F. L., (1996*). Understanding*
*the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and*
*Fetal Alcohol Effects (FAE)*. Seattle, WA: University of Washington.

**Notes:**
The long term consequences of FASD have been studied by Ann Streissguth and her colleagues, who found that 94% of individuals with FASD experience mental health problems that persist into adulthood.  Other problems include...

## Special Concerns

- Individuals with FASD are not often identified as having an organically based mental health and/or cognitive disorder, thus reducing their ability to qualify for special support services found to improve long term outcomes (Lockhart, 2001).
- To date, interventions appropriate for children with FAS have not been developed and validated through scientific intervention (Centers for Disease Control, 2002).

**Notes:**
Individuals with FASD face unique concerns that may not affect other chronically ill children.  In particular, children with FASD are not often identified as having...
Additionally, few interventions have been developed specifically for children with FAS, so it may not be clear which array of services and supports best meets the needs of FASD kids.

## Needed Services

- Psychopharmacological treatment
- Behavior therapy
- Proper educational placement
- Speech and language services
- Occupational therapy
- Direct advocacy
- Parent education and support
- Social services
- Vocational services

**Notes:**
However, individuals with FASD may benefit from existing services such as...

## What is a System of Care?

- “A system of care is a comprehensive spectrum of mental health and other necessary services which are organized into a coordinated network to meet the multiple and changing needs of children and adolescents with severe emotional disturbances and their families.”
- 				— Stroul & Friedman, 1986

**Notes:**
One of the ways to get these needed services and interventions to children with FASD-related problems is by implementing a system of care approach.
In 1982, Jane Knitzer published a book called Unclaimed Children that described the need for integrated services that could help emotionally disturbed children.  As a follow-up to Unclaimed Children, Beth Stroul and Robert Friedman published a monograph that first used the term “system of care” to describe an approach that could more effectively meet the needs of children with serious emotional disturbance.
At the core of the systems of care concept is the premise that: If children with problems have needs that go across systems (mental health, juvenile justice, schools, child welfare, etc.), then working together will produce better outcomes. 
A system of care is defined as...

## Serious Emotional Disturbance

- Prevalence is 5% to 13% of 9- to 17-year-olds
- Multiple systems provide services
- Common diagnoses include ADHD, oppositional disorder, and conduct disorder
- Co-occurring disorders are common
- Deficits in intellectual and educational functioning
- Problems in social and adaptive behavior
- Low income families are disproportionately affected
- Exposure to violence and loss is common

**Notes:**
The SOC approach was originally developed to meet the needs of children with SED and their families; however, SOC can be implemented to meet the needs of any population with special needs.  In fact, children with FASD have many of the same diagnostic criteria as children with SED, such as ADHD, deficits in intellectual and educational functioning, and and problems in social behavior.

## Why a System of Care?

- Inadequate range of services and supports
- Failure to individualize services
- Fragmentation of system
- Children served by multiple systems
- Lack of clear values and principles
- Lack of clarity about the population of concern
- Inadequate accountability
- Lack of adequate responsiveness to culture

**Notes:**
As I mentioned earlier, the SOC approach was developed to address the unmet needs of children with SED.  Prior to SOC, there was
An inadequate range of services and supports
Services were not individualized to meet the the needs of children and their families, and families were not involved in planning, service delivery or evaluation
The service system was fragmented with very little communication or collaboration across agencies
There were no clear values and principles about service implementation
The population of concern—or the population to be served—was not clearly defined
Systems were not made accountable for child and family outcomes
And there was a lack of responsiveness to the culture of the child and family

## SOC Values and Principles

- Focuses on needs of child and family
- Promotes partnership between families and professionals
- Involves collaboration between multiple agencies
- Includes individualized supports and services
- Promotes culturally responsive supports and services
- Includes ongoing evaluation and accountability

**Notes:**
As a result, the system of care philosophy adopted a set of guiding values and principles, which include:
A focus on both the needs and strengths of the child and family, so that services are child-centered and family-focused
Partnership between families and professionals, so that families participate in ALL aspects of planning, service delivery, and evaluation
Agencies collaborate to meet the needs of children, which results in smooth transitions among providers
Services and supports are individualized to meet the specific needs of each child and family
Service providers are culturally competent and services and supports are culturally responsive
And SOC includes ongoing evaluation and accountability

## Implementing a System of Care

- Who are you serving?
- What are your strategies?
- What do you intend to accomplish?

**Notes:**
In order to design and implement a SOC, systems often develop a theory of change model which helps answer 3 key questions:
First, the population of concern needs to be well defined by answering the question: “Who are you serving?”  For example, it would be important to know if a SOC will serve only children diagnosed with FAS, or children with FASD, which would be a much larger population.
The second question asks which strategies will be used to help the population.  A fully developed SOC would probably include an array of services, such as assessments, case management, day treatment, and family support services.
The final question asks: “What do you intend to accomplish?”  In other words, what are your intended outcomes and when do you expect them to occur?  It would be important to specify expectations for the population in terms of achieving educational or behavioral goals.  For example, intended outcomes might be independent functioning, improved problem solving skills, and decreased co-morbid disorders.

## Wraparound Milwaukee

- Large reduction in use of residential care in inpatient hospitalizations
- Improvement in behavior problems and overall functioning
- High level of parent satisfaction
- Reduction in cost per child served

**Notes:**
One of the most successful SOC demonstration projects is Wraparound Milwaukee, which was started about 9 years ago to serve kids with mental health needs.  The key components of the project were care coordination, child and family team, mobile crisis team, and provider network.  The project has shown a large reduction in... 

## Lessons Learned

- Importance of:
- Expanded range of services
- Expanded provider network
- Flexible funding
- Family choice
- Accountability
- Structure to support system of individualized care

**Notes:**
Lessons learned from Wraparound Milwaukee include the importance of having an expanded range of...

## Status of SOC Approach

- Federal, state, and local funds have been expanded
- Progress has been made in developing services that are individualized and culturally competent
- Families are increasingly involved as partners in treatment
- Agencies have begun to focus on practice-level changes and workforce development
- Stakeholders recognize the complexity and difficulty of implementing values and principles of SOC

**Notes:**
Over the past decade or so, the SOC demonstration projects have resulted in increased funds at the federal, state and local levels.
Progress has been made in developing services that are culturally competent and focus on unique needs and strengths of families.
Families are increasingly involved as full partners in treatment.
Agencies have made important changes at the practice level.
And stakeholders recognize that implementing a SOC is not quick and easy, but requires a lot of effort.

## Status of SOC Approach (cont’d)

- Despite progress, a long way to go in providing access to services, improving practice, and bringing about necessary system changes
- Need for increased attention to developing theories of change, implementing ongoing internal evaluation and quality improvement procedures, and developing measures of system performance

**Notes:**
Despite all this progress, we still have a long way to go to improve access to services, particularly for poor and minority populations, improve practices, and bring about system changes, such as increasing interagency collaboration and communication.
There also is a need for increased attention to...

## Desired Outcome

- To support the development of children who live with their families, learn, work, and participate in their families, schools, and communities, and become independent adults with a high quality of life.

**Notes:**
The ultimate desired outcome of these efforts is to...

## System of Care Resources

- Stroul, B. A., & Friedman, R. M. (1986). *A system of care for children and youth with severe emotional disturbances* (Rev ed.). Washington, DC: Georgetown University Child Development Center, CASSP Technical Assistance Center.
- Research and Training Center for Children’s Mental Health University of South Florida (http://rtckids.fmhi.usf.edu)
- Huffine, C. (2002, December). System of care reform: Implications for fetal alcohol spectrum disorder. *Iceberg*, *12*(4). http://www.fasiceberg.org/newsletter.htm

**Notes:**
There also are lots of excellent resources all over the Internet on FAS and FASD.  The CDC has an FAS home page, and the National Organization on Fetal Alcohol Syndrome (www.nofas.org) has an information clearinghouse and factsheets.