Service delivery program proposal
Executive Summary
System of Care (SOC) models were developed in response to the needs of children with a severe emotional disturbance (SED). Such children experience problems across life spheres including issues at home that put them at risk of abuse and neglect, difficulties at school including special education classification and dropping-out , and involvement with the juvenile courts. SOC implementation has matured and numerous evaluative efforts have been completed. The researchers contend that overreliance of evaluative research efforts on standardized scales and pre-conceived measurable outcomes have resulted in a loss of other important data. This studys holistic approach to evaluation illuminated important information concerning commonly ignored variables when using traditional evaluation models. The evaluative research study described focuses on two often overlooked behavioral variables– One SOC initiative, KidsNet Georgia, of Rockdale County, GA., is highlighted. The evaluative strategy, data collection, and data analysis are discussed along with implications for practice with SED youth and their families.
Keywords: System of Care, youth, severe emotional disturbance, program evaluation, service utilization
Introduction
Children with a severe emotional disturbance experience problems across life spheres (Stroul, Blau, & Sondheimer, 2008) and responding to these needs requires an ecological perspective of care. Youth with SED faced multiple life complications including involvement in the juvenile justice system (Drerup, Croysdale, & Hoffmann, 2008; Hussey, Drinkard, Falletta, & Flannery, 2008), contact with the child welfare system (Kessler et. al., 2008; Pecora, White, Jackson, & Wiggins, 2009), high rates of out of home placements (Farmer, Mustillo, Burns, & Holden, 2008; Fontanella, 2008), and difficulty in school (Reschly & Christenson, 2006; Zigmond, 2006). Providing care for youth with SED in single systems can be expensive, both in the short and long term, and often ignores the premise of providing care in the community.
Youth are classified as SED if they have a DSM diagnosis which causes significant functional impairment across life spheres such as the school, home, and community (Stroul, Blau, & Sondheimer, 2008). Additionally, in order to be classified as SED, youth must be served by two or more agencies such as mental health centers, schools, juvenile courts, or child welfare systems. It is estimated that the median prevalence rate for having a severe emotional disturbance (SED) is 12% (Costello, Egger, & Angold, 2005). The Department of Health and Human Services Comprehensive Community Mental Health Services for Children and Their Families Program (n. d.) projected that between 4.5 million and 6.3 million youth fit the SED criteria.
Literature Review
Scope of Problems Necessitating a System of Care
Mental health needs.
Mental health problems impact many children as well as their families, schools, and communities. Over 46% of youth 13-18 years of age had a lifetime prevalence of a mental health disorder; over 21% had a lifetime prevalence of a severe mental health disorder (Merikangas, et al., 2010). The National Institute for Mental Health (NIMH, 2006) estimated that 4.6 million youth used mental health services in a given year and that care cost $8.9 billion. Mental health services for youth cost nearly $2,000 more than care for adults. Further, NIMH (2002) estimated that 6% of the adult population had a debilitating mental illness that resulted in $300 billion per year in direct and indirect costs.
Mark and Buck (2006) found that youth with SED were most likely to be Caucasian, live in families with incomes above the poverty line, and have health insurance. However, they also found that youth of color were overrepresented and that the risk for being SED was higher for low income youth. Also, 28% of youth with SED and served by multiple service systems met criteria for post traumatic stress disorder (PTDS) (Mueser & Taub, 2008).
Juvenile justice needs.
As a result of their externalizing behaviors, youth with emotional disturbance often come in contact with the juvenile courts. Hussey, Drinkard, and Flannery (2007) found that 65% of juveniles in a detention facility who were served by a system of care initiative met diagnostic criteria for at least one DSM diagnosis. Of those with a mental health diagnosis, 65% also met criteria for a substance abuse disorder. Drerup, Croysdale, and Hoffmann (2008) studied over 600 youth in the juvenile justice system and estimated that 92% of males and 97% of females had at least one DSM diagnosis.
Ryan and Redding (2004) reviewed articles about the prevalence of mood disorders in the juvenile offender population that were published after 1980. They found that prevalence rates for mood disorders varied across studies from 17-78%. The review of the literature also suggested that mood disorders exacerbated the inappropriate behaviors of the delinquent youth. Youth involved in the juvenile justice system had high rates of SED: 46% of youth on probation and 67% of those incarcerated met SED criteria (Lyons, Baerger, Quigley, Erlich, & Griffin, 2001). Hussey, Drinkard, Falletta, and Flannery (2008) postulated that substance abuse, emotional problems, behavioral complexities, internal mental distress, environmental risk, and conflict tactics resulted in higher service utilization and thus, increased cost of care for youth in the juvenile justice system.
Providing juvenile justice services is expensive. In 2007, over 64,000 youth were detained, costing 5.7 billion (Sickmund, Sladky, Kang, & Puzzanchera, 2008). Juvenile detention is estimated to cost upwards of $70,000 per bed (Annie E. Casey Foundation, n.d.). The cost of incarcerating an adult in the jail or prison system is also costly; adult incarceration costs approximately $26,000 per year (Schmitt, Warner & Gupta, 2010), about double the cost of SOC services.
Child welfare needs.
About 50% of children in the child welfare system had mental health issues and behavioral problems (Barth, Lloyd et al., 2007; Burns et al., 2004). In a study of children under six years of age, half of the sample had behavioral problems that put them at risk of poor developmental trajectories (Stahmer et al., 2005). Later in adolescence, youth served in the child welfare system were at risk of becoming delinquent (Grogan-Kaylor, Ruffolo, Ortega, & Clarke, 2008). Older youth, males, and those who had been physically abused were more likely to engage in delinquent acts. Instability of placement also influenced the likelihood of behavioral problems (Rubin et al., 2008). When compared to youth in foster care, youth in kinship care were less likely to have behavior problems or use mental health services. Pecora, White, Jackson, and Wiggins (2009) reviewed the literature regarding mental health outcomes for current and former recipients of foster care. They established that the most common diagnosis of alumni of the foster care system were PTSD, major depression, and alcohol dependence.
Hansen and Hansen (2006) project that child welfare spending was just under $14,000 per child per year. Rubin et al. (2004) studied mental health costs for children in foster care. They found that youth with multiple placements or those who experienced episodic foster care increased the likelihood of mental health service usage. They also found that top 10% of mental health care users accounted for 83% (almost $2 million of the $2.4 million) of mental health costs.
School needs.
Youth with mental health problems may also experience problems at school. Kuo, Vander Stoep, McCauley, and Kernic (2009) reported it was cost effective to provide school-based mental health screenings for all students. The screenings cost a maximum of $14 per student and, of those students referred for services, 72% were linked to services within six weeks. A maximum cost savings of $416.90 per successful linkage was estimated. For youth at risk of and with emotional disturbances, school-based intervention programs reduced externalizing behaviors (Reddy, Newman, De Thomas, & Chun, 2009).
If problematic behaviors are not detected and addressed early, childhood disorders may lead to poor school performance which can ultimately result in lack of employment opportunities, increased health care costs, and poverty in adulthood (Clark, Koroloff, Geller, & Sondheimer, 2008; Knapp, McCrone, Fombonne, Beecham, & Wostear, 2002). In 2008-09, 420,000 students were classified as having an emotional disability which qualified them for special education services (U.S. Department of Education, 2010). For youth with SED, the consequences of school failure were significant. Students served in a self-contained classroom for emotional disabilities performed below the 25 percentile in reading, math, and written expression proficiencies (Lane, Barton-Arwood, Nelson, & Wehby, 2008). About 43% percent of youth with SED dropped out, compared to 10-23% of those in other disability categories (U.S. Department of Education, 2010).
Reschly and Christenson (2006) examined factors that helped predict how and why special education students dropped out. They reported that for students with emotional-behavioral disorders, grade retention was most predictive, followed by behavioral engagement factors such as discipline reports, absences, and cutting class. Following high school, youth with SED had problems keeping jobs. Zigmond (2006) found that youth with SED, both graduates and drop-outs, were employed at rates of about 50%. The jobs were part-time, lacked health insurance, and earned close to the minimum wage, all of which may contribute to long term costs to society.
System of Care Model
The System of Care (SOC) philosophy grew out of the necessity of treating youth with severe emotional disturbance (SED) in the most appropriate and least restrictive environments (Stroul, 2003; Stroul et al., 2008; Stroul & Friedman, 1986). Stroul and Friedman (1986) proposed the SOC philosophy for serving youth with SED. It outlined three core values and 10 guiding principles for service delivery for youth with SED. Such youth require a multitude of services ranging from health care, mental health care, legal services, foster care services, respite care, and educational care (Stroul et al., 2008; Stroul, 2003; Stroul & Friedman, 1986). The SOC model ideally unites these various organizations, with often philosophical differences, under a common umbrella with the same mission.
A major premise of the SOC model is that youth and their families are to receive comprehensive mental health services in the least restrictive and most clinically appropriate environment. Philosophically, LREs promote dignity of the youth and their families and give clients increased self-determination. Bickman et al., (1995) found that participants in a SOC program were served in increasingly least restrict environments than those served in traditional settings. Serving youth in the least restrictive environment (LRE) was both cost effective and provides youth and families treatment options integrated into their everyday lives. Barth et al. (2007) found that some community-based services were equal to or better than some out-of-home placement. Further, community-based treatment was less expensive that residential care. Daleiden, Pang, Roberts, Slacin, & Pestle (2010) found that for over 80% of participants intensive home based services were successful in keeping youth in the LRE. Older youth and those with greater behavioral impairment at intake were more likely to need residential care.
At the same time that services to youth with SED were being evaluated within the mental health arena, the public educational system was reconsidering how to meet the needs of special education students. The Individuals with Disabilities Education Act (IDEA) and IDEA 1997, mandated mental health services for youth with SED (Latham, Latham, & Mandlawitz, 2008). This helped formally bring together the education system and mental health agencies, and promoted the growth of the SOC concept as we now know it today (Lourie, 2003).
SOC evaluative research has largely focused on outcome variables measured by
standardized scales such as the Child Behavior Checklist (CBCL), the Child and Adolescent Functional Assessment Scale (CAFAS), and the Youth Self Report (YSR), while less attention has been paid to behavioral indicators collected in the natural environment (Bickman el al., 1995; Friesen & Winters, 2003; Manteuffel, Stephens, Brashears, Krivelyova, & Fisher, 2008; U.S. Department of Health and Human Services, 2003). The results of relying on largely aggregated standardized scale data to determine program effectiveness connotes that the richness of other data sources are ignored or are not important. This is especially true in rural communities where lengthy and time-consuming data collection protocols are viewed suspiciously by participants who reject the offer to enroll in the longitudinal study (personal communication, KidsNet Staff, August, 2004). For those communities who have had difficulty enrolling participants in a longitudinal study, a program evaluation focusing on behavioral indicators may be an appropriate way in which to judge program effectiveness. The KidsNet program of Rockdale County, GA used a SOC model and was the focus of this evaluative research study.
The conceptual foundation of this evaluative research study flows from the core values and guiding principles of the SOC model. Central to that belief system is the notion that the best way to care for youth with SED is the creation of a family and youth centered system. For purposes of this evaluation, operationalization of this belief was established by drawing pre and post comparison data on service utilization for two non-duplicate cohorts on the following SOC services: school-based services, outpatient mental health services, psychiatric inpatient services, residential services, psychiatric outpatient programs, and law enforcement contacts. Two evaluative research questions were crafted out of the assumed contention that a SOC is a better practice model of providing care for youth with SED. The first question was: Does the SOC serve participants in the least restrictive environment? The second was: How much does it cost to serve youth in the SOC? Both questions were designed to determine the worth and merit of this type of service delivery, using other data than have been reported in evaluations of SOC programs.
What follows is: first, a brief description of the KidsNet Program, second, an articulation of the evaluative research methods, third, a depiction of participant demographics, and finally, evaluative research results, via the two research questions and two cohorts, are presented and discussed. Taken together, there are presented as a rationale for the inclusion of other important data in such evaluative efforts. Included in the discussion are implications for practice and programming with SED youth and families.
The KidsNet Program
KidsNet of Rockdale County is part of the PeachState Wrap-around Initiative (PSWI) located in Georgia. In October 2000, a six-year federal grant was awarded to the Rockdale County Board of Commissions with the purpose of developing a coordinated community [system] of care for youth with a severe emotional disturbance (SED) and their families. The mission statement of KidsNet is to create family driven, culturally sensitive opportunities through the use of blended resources and collaboration to allow children with a severe emotional disturbance to thrive in the community (KidsNet Pamphlet, 2000). Youth qualify for KidsNet services based on the Community Mental Health Services (CMHS) initiative definition of SED. The criteria are: age, diagnosis, disability, multiagency need, and duration and intensity of illness.
KidsNet served youth with SED in the mental health catchments areas of Rockdale, Gwinnett, and Newton Counties. Youth are referred to KidsNet from a variety of sources including: therapists at the mental health center, Department of Juvenile Justice (DJJ) workers, educators, Division of Family and Childrens Services (DFCS) case managers, private treatment providers, or parents (KidsNet Pamphlet, 2000). Youth are accepted into the SOC through treatment team staffing. Once a youth is accepted, progress through the levels of care are determined by the individualized, unified treatment plan. Step-downs and re-entry into the program were determined by individual needs. Services were provided using a system of care model. Multiple community agencies combined resources and talents to best serve youth with SED.
System of care research.
SOC evaluative research has largely focused on outcome variables measured by standardized scales such as the Child Behavior Checklist (CBCL), the Child and Adolescent Functional Assessment Scale (CAFAS), and the Youth Self Report (YSR), while less attention has been paid to behavioral indicators collected in the natural environment (Bickman el al., 1995; Copp, Bordnick, Traylor, & Thyer, 2007; Friesen & Winters, 2003; Manteuffel, Stephens, Brashears, Krivelyova, & Fisher, 2008; U.S. Department of Health and Human Services, 2003). The results of relying on largely aggregated standardized scale data to determine program effectiveness connotes that the richness of other data sources are ignored or are not important. This is especially true in rural communities where lengthy and time-consuming data collection protocols are viewed suspiciously by participants who reject the offer to enroll in the longitudinal study (personal communication, KidsNet Staff, August, 2004). Most recently, Stroul et al. (2010) renewed the call to remove barriers between researchers and communities providing mental health services.
Studying the same SOC as evaluated in this evaluation, Copp, Bordnick, Traylor, and Thyer (2007) examined the effectiveness of wraparound services for 15 participants using two standardized scales, the Child and Adolescent Functional Assessment Scale (CAFAS) and the Child Behavior Checklist (CLBC). At the six month follow-up, no significant differences were found in client outcomes.
For those communities who have had difficulty enrolling participants in a longitudinal study or whose data is not showing statistically significant changes, a program evaluation focusing on behavioral indicators may be an appropriate way in which to judge program effectiveness. The KidsNet program of Rockdale County, GA used a SOC model and was the focus of this evaluative research study.
The conceptual foundation of this evaluative research study flows from the core values and guiding principles of the SOC model. Central to that belief system is the notion that the best way to care for youth with SED is the creation of a family and youth centered system. For purposes of this evaluation, operationalization of this belief was established by drawing pre and post comparison data on service utilization for two non-duplicate cohorts on the following SOC services: school-based services, outpatient mental health services, psychiatric inpatient services, residential services, psychiatric outpatient programs, and law enforcement contacts. Two evaluative research questions were crafted out of the assumed contention that a SOC is a better practice model of providing care for youth with SED. The first question was: Does the SOC serve participants in the least restrictive environment? The second was: How much does it cost to serve youth in the SOC? Both questions were designed to determine the worth and merit of this type of service delivery, using other data than have been reported in evaluations of SOC programs.
What follows is: first, a brief description of the KidsNet Program, second, an articulation of the evaluative research methods, third, a depiction of participant demographics, and finally, evaluative research results, via the two research questions and two cohorts, are presented and discussed. Taken together, there are presented as a rationale for the inclusion of other important data in such evaluative efforts. Included in the discussion are implications for practice and programming with SED youth and families.
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