Kimberlee Reidel, MS BCBA, Dual Diagnosis Center Programs, Devereux Florida Treatment Network
This study will present an intensive psychiatric treatment facilitys experience in managing the increasing demand to serve children and adolescents with multiple diagnoses. Request for services for those with intellectual and developmental disabilities served in the mental health organizations and placement agencies has become an increasing trend. Sixteen individuals were identified to live in a separate living quarter and a specialized treatment protocol was created for this distinctive group. Seclusion and restraint data will be discussed along with the potential effects of a staff training program on positive outcomes. Other factors that may be responsible for the reduction in crisis interventions also will be examined.
Individuals with mental retardation experience poorer health, shorter life spans, and less access to professional health care than those without this condition (Braden, 2006). Many factors are thought to contribute to these disparities, including the fact that physicians and other providers lack training and experience in treating persons with mental retardation. Little research is available to discuss the issues facing individuals with a dual diagnosis of mental retardation and mental illness. Indeed, the complexities of treating one who presents with both a psychiatric disturbance along with the struggles of impaired cognitive functioning can be difficult to assess, let alone identify appropriate treatment. Thus, those with the task of locating, developing, implementing, or overseeing services for these individuals must ask, What is effective and adequate?
Without question, experts agree the combination of early intervention and a meaningful, natural support system provides the best possible outcomes for these youngsters (Serketich & Dumas, 1996). Surely, all children are entitled to maintain healthy, significant relationships with friends, mentors, teachers, and loved ones. The responsibility to help protect the child from unhealthy relationships and connect him or her with a meaningful social network presides over all other therapies, strategies and other interventions (Bronfenbrenner, 1979). However, when the child becomes too disruptive in his or her residence, and/or there is a breakdown in the childs support system, then more in-depth measures need to occur.
In the vast world of research and studies, clinicians and other providers often can have difficulty providing what research dictates as necessary interventions. The amount of applicable research data available at the time this study was initiated was significantly lacking. Studies isolated their results either to treatment of mental illness or concerns solely related to mental retardation. Assuming that the lack of research in the area of dual diagnosis is evidence that the generic mental and behavioral health professionals were unaware that such diagnoses exist, unrelated to chemical dependency, the challenge of obtaining an accurate diagnosis clearly should be addressed (Carter, Briggs-Gowan, & Davis, 2004). In reports and discussions with parents, caseworkers, and caregivers, it appeared that obtaining a proper diagnosis for those who present with multiple mental and cognitive disabilities was all too often seen as an insurmountable task. Without suitable assessments, a child with dual diagnosis could go undetected and untreated for many important developmental years. Time and again, parents and caregivers were given little assistance in locating supports for their child, often never obtaining all the various services needed to provide their child with tools essential for a successful future.
In other cases regarding youngsters who were pre-disposed to mental illness, the treatment of a parent with psychiatric disturbances had sometimes overshadowed the needs of the child. Because a parents own psychiatric issues can be more disruptive to the family and social setting, opportunities to identify indicators of developmental delays in the child can be missed or less noticeable in comparison to the parents presenting problem (Laursen, 2005).
In times when problem behaviors became a challenge and interrupted the normal flow of acceptable societal routines and activities, such as in school, some form of local or state agents took notice. Often school systems were the first to acknowledge their strategies were not working and attempted to find alternative ways in which to manage the child while still adhering to their legal responsibility to provide adequate education. Under federal law (IDEA), the Individualized Educational Plan (IEP) process dictated the types of services the individual was entitled to receive. For children who were unable to manage their multiple disabilities without significant supports, acting out in the home became increasingly problematic. The slow processing skills and psychiatric concerns combined tended to prevent such an individual from associating long-term consequences for violent and or self-harmful behaviors (Armstrong, 2005). As a result, federal, state, or locally-funded assistance became activated and the colossal task of dealing with the bureaucratic system began.
One group of researchers found evidence of increased risk specifically in boys with intellectual and development disabilities (IDD) and the development of antisocial and delinquent behaviors as compared to same age peers without IDD (Douma et al., 2007). This population is growing and becoming involved in both our human services systems and law enforcement agencies. Undoubtedly, the question becomes How can we successfully treat the child with such complex treatment concerns? Recognizing that an individual experiences multiple disabilities is the first phase in advocating for suitable services. The next step is to identify what would be considered suitable services. When early intervention is missed or ineffective and the support system is less than optimal, strategic steps should take place to secure a hopeful future for the child. The goals of this study are to describe: (a) the staff training approach used that appears to have positively affected treatment, (b) the importance of staff retention and training in all facets of the individuals life, and (c) the issues associated with adequate discharge placements and support services, including the role funding streams play in acquiring proper treatment.
Setting and Subjects
The individuals served in this study resided in a residential treatment center situated on 52 acres in Florida. The center provided 24 hour treatment of 132 children and adolescents, ages 5-17. All individuals admitted to the programs displayed challenging behaviors including aggression, property destruction, severe tantrum behavior, self-injurious behavior, elopement problems, and difficulty following directions reliably. These children had significant histories of dangerous and/or self destructive behaviors resulting in multiple failed placements in less restrictive settings. Courts, guardians and funders agreed a higher intensity, more secured setting was necessary for the community and the individuals.
Included in the campus programs were two distinct program models. Model 1 focused on treatment of individuals with a primary diagnosis of mental illness. Historically those diagnosed with borderline intellectual functioning were considered for admission if adaptive skills appeared to be within a workable range. The Model 1 program components were designed to incorporate approaches found to be effective with individuals with psychiatric issues that may contribute to the emerging behavioral difficulties. Model 2 provided treatment to those who primarily demonstrated significant developmental delays in social and adaptive functioning as a result of cognitive limitations. Candidates in this program also were diagnosed with a psychiatric disturbance as identified on Axis 1. Mild to moderate mental retardation was the typical range of intellectual functioning of children in the Model 2 programs.
The administration examined the client population in the Model 1 program and identified 16 candidates who were having difficulties adapting to the treatment programming and living quarters. Although the Model 1 program had experienced much success in treating children with multiple diagnoses, there appeared to be a distinguishing factor that separated these individuals from the others. Social awkwardness and deficits in age appropriate social cues were identified as outliers in the assessment of youth who might benefit from a different treatment approach and social milieu. Moving to the existing Model 2 program was not deemed appropriate as the social milieu was not considered developmentally appropriate for these youngsters. Fifteen of these individuals became the subjects of this study. There were seven females and eight males between ages 14 and 17 who presented with a co-existence of symptoms of mental retardation and a psychiatric disturbance, as identified on Axis I. All participants had deficits in independent daily living skills, requiring adult supervision for guidance on completing daily routines and tasks. These candidates were moved into a separate living quarter and the Model 2 treatment approach was used.
A description of the staff training efforts and importance of developing communication modalities and staff retention efforts follows.
Communication of Effective Treatment Approaches
When the original Model 2 program was developed, a cohesive approach to treatment that included mechanisms to address the various issues in providing quality services was thoroughly examined. In this cohesive approach, the operational and clinical departments evaluated ways in which to close the gap between all treatment providers. The focus was on creating ways in which caregivers could understand, implement, and facilitate the effective strategies known to work for improving health, behavior, and skill acquisition. The team was hopeful that these key areas would improve delivery of services in the childs home, school and vocational sites. In turn, there would be a marked improvement in achievements regarding treatment. The fundamental basics of the cohesive approach found to be essential when operating a residential program for dually diagnosed individuals will be described in the following section.
Identify Roles of the Staff
Prior to addressing the clinical approach to treatment, the roles of clinicians had to be revised and defined. First, it was clear that a position needed to be identified that could coordinate all treatment issues and concerns. This position would require someone with clinical background, but would need additional skills in advocating for the child, taking the lead on directing treatment in a timely and objective manner, training staff, reviewing all reports received, analyzing data, and coordinating the communications between all vested parties. Since the child with dual diagnoses should be receiving many forms of treatment, communication among all participants would be critical in maintaining and advancing any achievements made by the child. Most importantly, this role would need to act as a strong voice when advising legal guardians in discharge planning. It was determined that the behavior analyst should function in this role as they were trained to review data, teach staff, conduct functional assessments, and evaluate living and work environments. Thus, it was the behavior analysts duty to follow the child from intake to discharge, including accompanying him or her to the discharge placement to assess whether the receiving program was properly set up to provide the child with all the suggested supports. The caseload for each behavior analyst was 8 or 9 children.
The clinical therapist was assigned strictly to conduct creative, innovative therapy sessions for the child and assess the need for family therapy. Proven methods of interventions were scarce at the time of this report. One study indicated effective approaches in treating mental illness can vary; however there is a lack of formal evaluation data to support the impressions that common principles and strategies in therapy approaches influenced positive outcomes (Hinden et al., 2006). On-going strategies were implemented and reviewed by the clinical team. The freedom to concentrate on revising approaches was thought to help the clinician explore venues that may be most beneficial for the child who had significant cognitive delays and likely never benefited from traditional therapies. The therapist was involved in 18-20 cases and worked alongside the behavior analyst as a partner in making treatment decisions. Progress notes on therapy sessions were mandatory as well as transcribing monthly reports on overall progress toward treatment goals.
A full time psychiatrist was involved in treatment and collaborated with the behavior analyst and therapist in all cases. The physician allowed the clinicians with the time needed to implement strategies prior to making medication adjustments. The physician also emphasized the importance of reflecting on behavioral data when making treatment decisions.
Develop an Effective Communication System
The next step was to formulate a number of agreed upon vehicles of communication to which all would adhere in order to ensure that the implementation of strategies would be consistent. Because each childs needs were so unique and specialized, all levels of staff and other contributors in treatment could not recall every facet of the treatment protocol. Several systems were created to share important details and facilitate concerns. Logs, shift reports, behavior service referral forms, and individualized data collection cards (otherwise known as treatment plan cheat sheets) were established as tools to facilitate communication. Interventions had to be individualized based on psychiatric concerns, medical conditions, and results of functional assessments. Consequently, formulating a brief document that would easily be transported with the child was likely going to be more consistently followed than all other systems attempted prior to this time. An emphasis was also placed on the Direct Care Professionals (DCPs) responsibility to communicate through these data cards by recording information specific to the targeted behaviors. The reflection and examination of data in relation to the effectiveness of treatment was useful when shared with all levels of staffespecially the Direct Care Worker. Typically the behavior analyst, with the input of the therapist, teacher, psychiatrist, DCPs and nursing personnel, would define the targeted behavior and ensure it was objective in nature. Thus complications in accurate data collection would be less problematic. DCPs and other staff working directly with the child would document behaviors as they occurred throughout the shift. These data would be entered into a computer-based system and immediately available for analysis. Treatment decisions were made based on the assessment of the data collected.
In this method of communication, it became apparent that identifying the behavior analyst as the point of contact for all issues and concerns also was extremely effective in closing the gap in lapses of treatment. Hence, the practice of contacting the behavior analyst for any child-related issue became policy. The behavior analyst would transfer that information to the appropriate parties. This allowed other parties enough time to respond to and prepare for any actions required on their part. This also would provide the behavior analyst with all up-to-date details needed in making treatment decisions.
Train and Retain
When the children moved from the Model 1 to the Model 2 program, some staff also were transferred out of the one program and into the other. Staff were immediately trained in an Applied Behavioral Analysis (ABA) curriculum. The content of the curriculum was created by the existing Model 2 program and included concepts and principals of behavior analysis. The terminology was simplified and instruction was completed in a power point format. The coursework was approximately 8 hours in length, depending on learning styles of the participants. The expectation for all DCPs to complete this course was made and follow up trainings on portions of the curriculum occurred monthly following the initial training. Historically, the clinicians found the content of the ABA training to be difficult to retain, therefore a mandate to participate in monthly refresher classes was established. The training involved comprehension tests at the end of each of the ten sessions. The sessions included the following ten topics: what is ABA and Dual Diagnosis, effects of the environment on behavior, functional analysis and assessments, reinforcement, schedules of reinforcement, teaching new skills, decreasing behaviors, extinction, data collection, and individualized behavior programs. The tests were multiple choice.
In addition, the existing Model 2 program initiated a movement to reduce the turnover problem of years prior. It developed a training program for DCPs that encouraged staff development in the areas of operations management and clinical experience. The issues related to turnover were very apparent when repeated staff trainings occurred on basic intervention strategies and techniques on a regular basis. This high volume of new staff continuously coming into the program made forward progress very slow. As a result, the campaign to retain staff became a cornerstone in the Model 2 program. The value of retention became very apparent in specific cases as well as in the general implementation of program philosophy and mission. This same retention program was carried over to the newly established Model 2 program.
Data Collection and Procedures
Prior to a childs placement in a campus program, the legal guardian gave full consent to all treatment intervention strategies determined to be appropriate and that adhered to established policies regarding humane and ethical treatment. Direct Care Professional (DCP) staff were responsible for reporting in various forms all important information pertaining to the childs daily activities and behaviors. Detailed reports on all seclusions and restraints administered were documented and reported in a comprehensive computer-based data system. Behaviors targeted for treatment also were described and reported by each DCP on a daily basis. These behaviors were tracked in the computer database and reviewed weekly by a member of the clinical team. Twenty-four hour nursing staff were present on campus to assess all physical management procedures employed. A psychiatrist also was on call 24 hours a day, and present five days a week.
The seclusion and restraint database maintains the duration and frequency of each episode where physical management or locked seclusion rooms were employed. Data for each of the 15 subjects were collected 3 months prior to the move into the new Model 2 program. This would account for the safety interventions employed while on the Model 1 units. All subjects resided on the Model 1 program for 90 full days prior to the move. Data were collected for all 15 subjects during the first 3 months after the move onto the new Model 2 program. Again this would account for all safety interventions used to protect the child and others from physical harm. The data are represented collectively for each procedure utilized.
All staff responsible for supervision of the children were trained in the Crisis Prevention Intervention program and attended a refresher course every six months. This program is competency-based training and provides the staff with strategies to safely deescalate a child from harming himself or others. Further, the CP/I curriculum also taught procedures for safely containing a child who was violent. The three categories addressed for measurement include locked seclusion, physical supine (face-up) restraint, and non-ambulatory mechanical restraint. Comparisons between the frequency and duration of these procedures combined used in the respective 3 month periods are addressed. Frequency is defined as the number of times a placement was made. Duration is the total measure of the time between when a placement was initiated and when it was terminated. Also data were broken down to evaluate effects on males verse females. Follow up data on program trends is presented as well for further examination of the effects of the program models staff training initiatives.
Overall results revealed a 38.2% reduction in the frequency of placements and a 45.4% reduction in the duration of placement. An evaluation of each case indicated four adolescents had slight increases in either seclusion or restraint. Two other cases demonstrated a slight increase in the frequency of restraint, but a reduction in the duration of restraint. The nine remaining individuals all demonstrated a reduction in both frequency and duration of all safety interventions.
Together the post-move group was noted to have 6 fewer chair or seated floor restraints, 41 fewer supine (face up) restraints, 5 fewer seclusions and 19 fewer non-ambulatory mechanical restraints. Moreover, the decrease in duration of each safety technique was more pronounced: 36 fewer minutes in chair or seated floor restraints, 182 fewer minutes in supine restraints, 404 fewer minutes in seclusion and 1406 fewer minutes in non-ambulatory mechanical restraints.
The most dramatic results were noted in the female group with a 47% decrease in the total number of incidents and 45.7% decrease in the total duration. The male group had interesting results with a 3% increase in the total number of incidents but a striking 44.4% reduction in the total duration of time in restraints.
The results demonstrated in this select group of youngsters who transferred into the Model 2 program indicate that specialized services are a must for proper treatment. There were many variables involved in this study that can help providers and advocates identify what important services and interventions are vital in the quality of treatment for those with a dual diagnosis.
The first noteworthy point was covered within the clinical model. Differences between the Model 1 and Model 2 services that may have impacted treatment included the development of an individualized behavior program based on a functional assessment. Model 1s program was effective for the majority of their clientele, but was likely not specific enough in treating individuals with poor processing skills. Furthermore, due to the cognitive limitations, the typical processing that occurs immediately after an unfavorable consequence in cognitive therapy programming was found to not be effective in working with a child if a function assessment was incomplete or inaccurate. The DCP staff training program involves educating those directly responsible for the care of the child in approaches effective in treatment. These approaches are used in each individuals treatment plan and all communication systems are put into place to discuss the progress in using these approaches. Functional assessment conducted by a behavior analyst is one of the most useful ways to identify reasons for which a child is struggling with disruptive and dangerous behaviors. Once the assessment identifies the reasons, developing alternative and appropriate solutions then becomes the focus of treatment. The importance of relying on data and objective reports becomes essential when dictating how treatment should occur for the child with limited cognitive abilities. His or her verbal reports cannot be used reliably in establishing the whys of when challenging behaviors arise. Often, the time between when a behavior happens and when an individual with intellectual or developmental disabilities is asked about that behavior is too great for any meaningful information to be gathered. The clinician depends on those adults involved in supervising the child to document events that occur before, during, and after a challenging behavior so that sound decisions on intervention strategies can be made. All of these vital program components are addressed in the DCP training curriculum.
As described previously, the behavior analyst was the lead coordinator of treatment on the cases and was involved in all facets of the childs treatment. In most cases, when individuals move into community settings, responsibility for their health care often remains dispersed. This situation means that individuals, their families, and their caregivers continue to face difficult challenges finding adequate sources of health care, getting to them, and paying for the service (Braden, 2006). The training curriculum and identification of a behavior analyst as the position that was all-encompassing for guiding treatment may also have influenced the successful outcomes.
The second conclusion drawn from this study relates to turnover and its effect on treatment outcomes. Severe shortages in financial and human resources that characterized institutional care have not been resolved in most (if not all all) inpatient-type residential settings (Braden, 2006). As noted earlier, the impact of proper program implementation is contingent on well-trained, seasoned staff. Even more critical is the experience the children gain in learning how to develop socially significant relationships. Some observations made by the clinical team relating to turnover were on its influence regarding mental health issues. Surely the constant ending of relationships in the childs life perpetuated any psychiatric disturbance, especially those caused or exacerbated by loss or lack of parental figures. The turnover rates on the new Model 2 program from January until June 2005 were significantly lower (4%) than in the program from which the patients previously resided (82% for the fiscal year of 2005). This contributing factor could possibly have had a profound impact on consistency in implementing treatment plans as well as in learning to develop trusting relationships with staff. Specifically with cognitively delayed youngsters, developing natural, sincere friendships becomes difficult for the child with complex deficiencies in social situations. Though hired staff are contrived relationships, well-trained and well-meaning staff know how to maintain a healthy balance when developing a kinship with a child. In such settings where staff turnover is low, there is enough time for the dually diagnosed person to learn, sometimes for the first time, how to have a mutually meaningful friendship with another person. This foundation is used as a blueprint for building other significant relationships. The child, who learned in the past that social rejection was a normal daily event, now has the basis to develop and maintain relationships and can begin to value acceptance and trust within a community network.
Recognizing this was an integral part of treatment, the campus administration campaigned to target the stabilization of staff retention. Since this time, both the Model 1 and Model 2 programs have taken significant steps to reduce turnover with Model 1 maintaining staff at 36% and Model 2 at 32% for the year June, 2006-June, 2007.
A final observation worth mentioning relates to the type of programming available for children and adolescents with a combination of mental illness and a developmental disability. Housing individuals with varying severities in cognitive disabilities and adaptive functioning could possibly have had an impact on the therapeutic value of the treatment in Model 1 as the residents were placed with both individuals with and without mild intellectual delays. Placement on the Model 1 program initially began out of a lack of knowledge of treating those with a dual diagnosis and rising placement demands. It appears the type of treatment is dependent on the available funding stream associated with the child. The 15 patients involved in the Model 1 and Model 2 programs both would have been identified with mental health type funding systems. Some Model 2 admissions were associated with developmental disability type agencies. This can possibly present with problems in securing appropriate step-down placement. As treatment providers are forced to build service plans around requirements from funders, the child is left without vital supports needed to have the best possible outcome. Traditionally mental health oriented programs are less experienced in delivering behavior analysis services, specifically training behavior analysis curriculum, conducting functional assessments, and developing individualized response plans. On the other hand, traditional developmental disability programs have fewer quality, experienced therapists.
There certainly are many youngsters who are not accessing quality services due to the limitations set forth by the varying funding sources. It seems the appropriate steps to take would be to endorse that more specific funds become available to those who need both therapy and behavior analysis as well as many other services. When advocating for a child who possesses multiple disabilities, emphasizing strongly the importance of locating, securing, and maintaining adequate assistance now may help reduce or eliminate the likelihood of costly societal burdens in the future.
The author gratefully acknowledges the support and assistance of Debbie Kight and Frank Mizell for their hard work in starting up the new Model 2 Unit. Special thanks to Michelle Llorens in the clinical services department for moral and technical support as well as to Richard Whitman in the human resource department.
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For further information, contact Kimberlee Reidel at: KREIDEL@devereux.org.