Introduction

The work described in this report was performed as part of the ongoing oversight and planning by the Commission to Study the Residential Placement of Children; particularly the Service Delivery and Development Work Group. The specific charge for the Service Delivery and Development Work Group was to create specialty specific task teams to explore evidence based best practice interventions for three target populations. The three target populations; youth with co-occurring disorder (substance use/abuse and mental illness), youth with co-existing disorders (mental retardation/developmental disabilities/mental illness), and youth transitioning toadulthood, have been identified repeatedly in West Virginia’s out of state placement population. In addition, planning for these populations is difficult, even when and if in-state options exist. In November, 2008, the Service Delivery and Development Work Group recruited additional individuals from multiple systems and began their work on the three target populations. Three broad outcomes were defined:

  • To develop an approach to earlier identification of MR/DD/MI disorders so that services and support can be introduced much sooner to the child and their families to allow the child to grow into a self sufficient adult.
  • Identification of evidence based practices for youth with co occurring disorders and develop practice guidelines for treatment services for this population.
  • WV youth will have access to the needed support guided by defined best practice standards to achieve their personal level of independence regardless of system involvement or funding source.

While working separately each group followed the same process. The process involved analysis of current systems with strengths and opportunities for improvement, individual research and literature review, group discussion and consensus, and production of the draft recommendations. The data was then shared with the West Virginia System of Care Implementation Team for additional input prior to the final report.

Research done by the team members included what level of ‘evidence’ supported the interventions and programs being examined. Many programs in the United States were reviewed with a critical eye and the work done by the three teams was extensive. All team members serving were sensitive to the need to make responsible recommendations to the Commission. It was understood that program development and accessibility has a lasting and profound effect upon the children, youth and their families in West Virginian.

The report and recommendations of the three teams follows.

Executive Summary

For all three target populations there were a number of commonalities with regard to findings and recommendations.

Findings:

  • There currently exists in WV a practice wisdom that incorporates the culture and values of WV in the provision of best and promising practices.
  • We need to continue to build upon existing initiatives that demonstrate promise to achieve the desired outcomes.
  • In all child serving systems there is often a lack of understanding of the developmental stages and needs of youth, as well as the impact of childhood experiences (both positive and negative) and disabilities or handicapping conditions/disorders.
  • WV adheres to the System of Care philosophy; promoting partnerships and collaboration that meet the changing needs of children, youth and families. However, continued efforts to reduce silos that serve as barriers to service provision and coordination are needed.

Recommendations:

  • All current and future policies, programs and services for these populations will be guided by and evaluated against current research, promising practices and West Virginia Practice wisdom.
  • In order for WV children and youth to attain their maximum potential and independence, they must receive the necessary services, supports and guidance. A major barrier that must be addressed is stigma associated with remaining in care and/or the existence of a disability or handicapping condition or disorder.
  • A youth development approach (self-determination, strength based, mentoring, and promoting resilience) will guide decision making, program development and implementation for WV children and youth and families.
  • WV youth will have strong connections to caring, stable adults.
  • Standardized protocols for screening and assessment will be implemented across all child serving systems.
  • A formal comprehensive and collaborative approach to coordinated service delivery is needed. The Commission to Study the Residential Placement of Children can provide the leadership and oversight to accomplish this.

CO-EXISTING DISORDERS EVIDENCE BASED PRACTICE TEAM EXECUTIVE SUMMARY

Currently in WV, we are serving children/youth/young adults that are diagnosed with these identified co-existing disorders: mental retardation, mental illness, and developmental disabilities. However, the services are often being provided by different agencies that specialize in one of the three areas. The need to provide services in an integrated approach for these co-existing disorders is paramount to providing services that truly address assessed needs as well as providing transition or aftercare services to maintain or increase the skills learned/progress made while in treatment.

Because these co-existing disorders are lifelong disorders, that can’t just be addressed short term and then ameliorated, this task team identified our target population as any person from birth – 21 years of age who has been diagnosed with both a mental illness and Moderate Mental Retardation through Borderline Intellectual Functioning (IQ between 35 and 84). The following developmental disorders are included: Pervasive Developmental Disorder, Autism Disorder, and Asperger’s Disorder.

Because the target population is broadly defined, it was difficult to find research on evidence-based practice that addressed all disorders within the target population. There were evidence-based practices associated with each category (developmental disabilities, mental retardation, and mental illness) and those were highlighted in the review of the literature and recommendations. There were numerous articles/research that indicated best practices for this targeted population.

In order to meet our task team goal, the team identified current strengths, weaknesses, opportunities and challenges associated with WV’s current system in treating this population. In doing so, it was clear that WV has made strides in providing services to these individuals. Many of the weaknesses or challenges identified were discussed throughout this process and it became clear that reconfiguration of services already in place or additional training would be some quick implementation strategies that would positively impact the service delivery for this population. One major strength identified was WV’s cultural belief that “we take care of our own.” Many persons who fall into this target population are being taken care of by immediate or extended family that with additional supports provided in an integrated manner would be able to maintain the person in their home/community.

Some of the issues identified as needing improvement, in order to increase the life domain functioning of this population, were access to services either by geographical distance or financial inability. In addition, many of these children/youth are not involved in the CPS/youth service system and therefore do not have MDT’s (Multi-Disciplinary Teams) to assist with guiding their care or providing advocacy for their needs.

Because each area identified in the target population requires different types of best practice approaches, it became more clear through research review and discussion that all systems/agencies involved in providing treatment must communicate frequently and clearly so that services are delivered in a manner that maximizes the resources available so that treatment or maintenance/support services can be effective.

Some of the key findings from the team’s research and discussions were:

  • The earlier these diagnoses are identified the better the prognosis.
  • Maintenance of improvements for this population is just as crucial as treatment.
  • Financial barriers prevent services from being delivered in an integrated fashion.
  • People included in this population show up for services in all service delivery systems i.e. outpatient, in-home, respite, residential, inpatient hospitalization, etc.
  • Medication is often utilized as a way to address behavioral dyscontrol instead of treatment strategies being implemented to target behavioral dysfunction.
  • Advocacy for this population is often lacking. Fewer agencies are providing advocacy services.
  • Often services provided for this population are not tailored around the child/youth, but the child/youth is made to try to “fit” into the established program.
  • A service gap exists for persons with IQ’s between 55 and 70.
  • Teaching socialization and interpersonal skills are integral in assisting this population to reach their potential.
  • Our workforce is not trained in the area of providing integrated treatment to all of the disorders identified in our target population.
  • There are stigmas attached to being diagnosed with these disorders.
  • Historically, this target population wasn’t expected to make measurable improvements, but rather maintenance was the expectation.
  • The lack of transition services creates the opportunity for this population to regress.
  • This population is at great risk for being exploited, victimized, abused, and neglected.
  • Increased parental support is pivotal in working with this population.
  • No clear data exists regarding how many children/youth/young adults fall into this category. Many persons are receiving services but the services are specialty based, meaning the person is only counted as MI, MR or DD. In addition, many of these persons are being cared for by families in their homes and are not involved with any system i.e. schools, agencies, etc.
  • Many resources exist, but not all systems are knowledgeable of the resources which leads to underutilization.

Based on these key findings, along with research, the task team identified our desired outcome: To develop an approach to earlier identification of MR/DD/MI disorders so that services and support can be introduced sooner to the child and their family to allow them to grow into a self-sufficient adult and to achieve their maximum potentialwith the resources available to support them in their efforts throughout the life span.

In addition, training of program/agency staff as well as other child serving systems will be paramount in improving/changing the delivery of services for this population. We must change the belief of our culture that this population can only be maintained with no expected measureable improvements. Changing this belief will open many doors/opportunities for this population.

CO-EXISTING DISORDERS DEFINITION/OUTCOME/ GOALS AND RECOMMENDATIONS

TARGET POPULATON

Any person from birth – 21 years of age who has been diagnosed with both a mental illness and Moderate Mental Retardation through Borderline Intellectual Functioning (IQ between 35 and 84). The following developmental disorders are included: Pervasive Developmental Disorder, Autism Disorder, and Asperger’s Disorder.

GOAL

To develop an approach for earlier identification of MR/DD/MI disorders so that services and support can be introduced sooner to the child and their family to allow them to grow into as self sufficient an adult and to achieve their maximum potential with the resources available to support them in their efforts throughout the life span.

DESIRED OUTCOMES

  • WV will have a standardized screening and if needed comprehensive assessment process for this identified population.
  • WV will include family whenever possible and they with the child/youth will be the centerpiece in building a successful individualized plan.
  • WV will build treatment and support systems to address the needs of this population in an integrated approach.

BEST PRACTICE GUIDELINES/RECOMMENDATIONS

  • Develop a standardized screening and if needed formalized assessment process for each child who enters a child serving system to assist with early identification.
  • Assure individualized service planning based on comprehensive assessment and protocols.
  • Develop a work group which consists of members of all of agencies serving this population to develop strategies to integrate treatment, increase service capacity, identify outreach/support opportunities, reconfigure beds if needed, and blend/identify funding opportunities/strategies.
  • Identify outcomes as a measure of success for treating/supporting this population.
  • Utilize identified outcomes as a source in developing or evaluating programs or services.
  • Identify administrative policies/procedures that inhibit the integration of service delivery.
  • Utilize service array data to identify and improve services needed for this population.
  • Establish parent training programs to educate on diagnoses and teach skills.
  • Expand parent support networks, case management services/hours, supported employment programs, community based treatment, specialized family care and specialized foster homes.
  • Develop day treatment or drop in centers for socialization opportunities.
  • Establish school based mental health in all counties.
  • Expand waiver criteria to include symptoms/need (not just diagnosis driven) and streamline the waiver application/continuation of services process.
  • Expand socially necessary services to all children/youth with these diagnoses regardless of their system status. Collaborate with higher education to build a stronger curriculum for working with this specific population

CO-OCCURRING DISORDERS EVIDENCE BASED PRACTICE TEAM EXECUTIVE SUMMARY

The need for substance abuse services for both youth and adults has been frequently voiced throughout West Virginia. The co-occurrence of substance abuse and mental health problems has emerged as an important issue for consumers of services, those who plan and fund services, and those who provide direct services. Both problem areas are highly correlated with suicide, academic failure, criminal behavior, and further penetration into child serving systems. Failure to receive appropriate services ultimately results in substantial costs to society.

The Co-occurring Disorders Task Team conducted an exhaustive review of the literature to identify evidence-based practices for children and youth with co-occurring (substance abuse and mental health) disorders and develop practice guidelines that are based on sound and proven clinical practice. Both evidence based and promising practices were evaluated and included in the team’s findings and recommendations. Additionally, the team examined services within West Virginia and determined that there exists, within the State, services and programs that are based on evidence based practices.

The target population for this task team is youth between the ages of 10 and 21 who meet the criteria for DSM-IV-TR diagnosis for mental health and substance disorders (abuse or dependence) and who are experiencing difficulties in at least one life domain.

The task team conducted an analysis of current practice that included strengths, weaknesses, challenges, and finally, opportunities for improving the service delivery system for children, youth and families. It was gratifying to learn that there are numerous strengths upon which to improve services to children, youth and families.

There was overwhelming evidence to suggest that the best approach to treatment of persons with co-occurring disorders is an integrated treatment approach. This means that substance abuse and mental health treatments are provided by the same clinicians/support workers, or team of clinicians/support workers, to ensure that the individual receives a consistent explanation of the illness/problems and a coherent prescription for treatment rather than a contradictory set of messages and disjointed services from different providers.

There are specific components of integrated treatment that have proven effectiveness. In addition to identifying specific evidence based interventions, the task team has made recommendations for practice guidelines in the following areas:

  • Identifying the possible existence of a potential substance use/abuse or mental health disorder through development and implementation of a universal screening protocol/tool for use in all child serving systems.
  • Development/implementation of a comprehensive assessment protocol/tool for use if and when a potential substance abuse/mental health disorder is screened as being present. This assessment would investigate more conclusively the nature and severity of the disorders and how they are related and impact each other.
  • For those determined to have co-occurring disorders, provision of integrated treatment and support for the immediate problem, as well as long-term recovery, based on evidence-based practices. It is critical that families and other supportive people be involved in treatment and support in order to foster recovery.

The task team also identified a number of barriers. Existing philosophy among clinical staff/programs needs to change to expect the presence of co-occurring disorders. Common philosophy that supports existence/components of co-occurring disorders does not now exist. In addition, criteria for clinical services and programs sometimes acts as a barrier, and those who need treatment the most may be excluded or prevented from remaining in treatment programs.

A lack of cross-trained clinical staff with demonstrated competencies and access to clinical supervision throughout the State was identified as a barrier, although the State has been actively engaged in increasing clinical capacity over the past several years. Family inclusion in treatment and recovery is often impeded by policy/funding stipulations. Understanding the behavioral and psychological manifestations of co-occurring disorders by staff in other child serving systems was also identified as problematic. Finally, established outcomes and service/program accountability do not routinely exist.