Service problems and solutions for individuals with mental retardation and metal illness. (2001 NRA Graduate Literary Award Winner).

A 28-year-old male with mild mental retardation and several possible psychiatric disorders has fallen through the cracks of local service programs on several occasions. The suggested psychiatric diagnoses include major depression, antisocial personality disorder, bipolar disorder, and atypical affective disorder. Following his involvement with the local mental health center, this individual was referred to a residential care facility for people with mental retardation due to aggressive acts in the community. This facility provided a dual diagnosis program offering individual and group therapy, which proved relatively successful for the client. As a result of a few attempts to run from the facility, he was discharged to a different group home. This residential program did not provide psychiatric services, and the local mental health center failed to provide alternative treatment programs. The client became progressively more irritable, and after leaving the facility for two weeks, he lost his residential placement and was placed in a semi-supervised apartment. While living in this apartment, he participated sporadically in day treatment programs, but his alcohol abuse increased dramatically. After significant alcohol and drug abuse, he was admitted into the psychiatric unit of the hospital, and following discharge, he returned to the semi-supervised apartment. His behavior became increasingly bizarre, and he began to make threatening phone calls to government officials. Despite the severity of problems presented with this case, the local mental health and mental retardation services could not agree on a joint care plan, and each system identified the client as the primary responsibility of the other system. As a result, he was sent to the correctional system and was not provided with the treatment options, which he appeared to clearly need (Menolascino, Gilson, & Levitas, 1986).

Background Information

The case described above reveals how difficult it can be to provide services to individuals with a dual diagnosis of mental retardation and mental illness. In fact, this population still remains widely unrecognized, and professionals who do recognize it often refer to this combination of diagnoses as the "other dual diagnosis," because the term, "dual diagnosis," is often assumed to refer to the combination of mental illness and substance abuse (Bongiorno, 1996, p. 1142). Along with the difficulty in recognizing this population, the services to people with mental retardation and mental illness still remain separate and continue to diverge considerably (Nezu, 1994). Without proper recognition and collaboration from both systems, necessary treatment is not possible.

Historical Beliefs

Problems providing services to individuals with mental illness and mental retardation began as a result of previously held beliefs of professionals. For instance, little distinction is often made between mental retardation and mental illness, and individuals with mental illness and/or mental retardation are treated as a single population (Nezu, 1994). In addition, some professionals believe that individuals with mental retardation are immune to emotional and psychological problems as a result of the retardation. Fletcher (1988) reported, "The mildly retarded have been characterized as worry-free and thus mentally healthy. The severely retarded have been considered to express no feelings and therefore do not experience emotional stress" (p. 255). These beliefs have prevented individuals with both mental retardation and mental illness from receiving appropriate services.

Current Beliefs

Recent research has revealed that professional beliefs, such as those described above, are not valid. Individuals with mental retardation can indeed experience emotional and psychological problems. In fact, it is now typically mandated that people with mental retardation receive appropriate medical assessment, diagnosis, and follow-up treatment (Szymanski, 1994). As a result, fewer individuals with a dual diagnosis of mental retardation and mental illness go unnoticed.

Along with the trend toward providing proper treatment to individuals with mental retardation and mental illness, there are additional indicators of a growing awareness of dual diagnosis. For instance, professional organizations, such as the American Association on Mental Retardation and the American Psychological Association, have given increased attention to the co-occurrence of mental illness and mental retardation. The National Association for the Dually Diagnosed was also created to promote advocacy for these individuals (MacLean, 1993). In addition to the influence of professional organizations, there have been more frequent publications relevant to the treatment of psychiatric disorders for people with mental retardation. Journals including the American Journal of Mental Retardation and Research in Developmental Disabilities have published articles on this topic (MacLean, 1993). The current beliefs surrounding dual diagnosis and the growing awareness of this population have allowed for advancements in treatment and the provision of services, but there is still considerable room for improvement.

Characteristics of Mental Retardation

In addition to a basic knowledge of past and present beliefs concerning people with mental retardation and mental illness, it is necessary to understand the essential features of mental retardation when discussing dual diagnosis. First of all, individuals with mental retardation have significantly below average intellectual functioning and impairments in adaptive functioning. More specifically, people with mental retardation typically have an IQ below 70 and have difficulty with social, communication, and daily living skills (Campbell & Malone, 1991).

In addition, individuals with mental retardation often exhibit several different behavioral problems. These behaviors include pica (eating of nonnutritive substances), smearing feces, and destructive behaviors such as aggression directed at others, property destruction, and self-injurious behavior (Campbell & Malone, 1991). These types of behaviors contribute added confusion, because they may also be considered symptoms of psychiatric disorders (Campbell & Malone, 1991). As a result, professionals have an exceptionally difficult time correctly diagnosing individuals who display these symptoms.

Along with the overlap in symptoms between mental retardation and mental illness, people with metal retardation may have several predisposing factors to mental illness. These factors include constitutional vulnerabilities from central nervous system impairment, such as frontal lobe damage, as well as psychological vulnerabilities, such as low self-esteem, and social vulnerabilities, such as poor interpersonal relationships (Torrey, 1993). In addition to these vulnerabilities, people with mental retardation typically experience significant stigma associated with their disability, rejection from peers, and an overall lack of control over changes in everyday life, which may significantly contribute to a predisposition to mental illness (Torrey, 1993). These basic characteristics and vulnerabilities that may often be present in individuals with mental retardation may be closely associated with the development of certain psychiatric disorders.

Prevalence Rates of Mental Illness

After reviewing the significant overlap in symptoms and several predisposing factors to mental illness among people with mental retardation, an analysis of prevalence rates provides additional information on the magnitude of this problem. Recent studies indicate that psychiatric disorders are four to five times more common among individuals with mental retardation as compared to people without mental retardation (Fletcher, 1993). According to Campbell and Malone (1991), it has been estimated that 30 to 67% of individuals with mental retardation also have a psychiatric disorder. In one study of 110 participants with mental retardation performed by Kazdin and colleagues (1983), 67.3% of the sample was found to also have a mental illness. A study of 100 children with mental retardation found that 87% had a psychiatric disorder, with the most common diagnoses being psychoses, behavioral disorders, personality disorders, and neuroses (Szymanski, 1994). A similar investigation found that 25% of a sample of 543 individuals with mental retardation had diagnoses of schizophrenia, and 8% had diagnoses of affective disorder. Additional psychiatric diagnoses included psychosexual disorders, anxiety disorders, personality disorders, and anorexia nervosa (Menolascino, Levitas, & Greiner, 1986). The high prevalence rates of various psychiatric disorders among people with mental retardation further indicate the importance of directly and appropriately serving individuals with dual diagnoses.

Service Problems Surrounding Dual Diagnosis

A review of background information points out several problems in the provision of services to individuals with mental retardation and mental illness. Despite the high prevalence rates of dual diagnosis, the specific needs of this population still go unrecognized. A recent study reported poor availability, accessibility, and adequacy of services for people with mental retardation and mental illness (Jacobson & Ackerman, 1988). In particular, reports indicate that these individuals are not adequately served by community mental health centers (Torrey, 1993). Along with the overall lack of services, several additional service problems surround individuals with mental retardation and mental illness that must be addressed in order to improve treatment to this population.

Inaccessible Services

One of the primary problems for individuals with dual diagnosis is the inaccessibility of needed services. These individuals require special services tailored to meet their needs, and these types of services are typically not available (Jacobson, 1999). In fact, people with dual diagnosis are often not even offered the same opportunities as individuals with either mental illness or mental retardation alone (Fletcher, 1993). Essentially, there is a lack of commitment to establishing special services for individuals with dual diagnosis due to limited consumer advocacy and support from professionals (Davidson, Morris, & Cain, 1999). Too often attempts are made to provide generic services to individuals with mental retardation and mental illness. In these instances, services are provided in an inappropriate setting by a staff with little knowledge and expertise in dual diagnosis (Day, 1994). In order to provide appropriate treatment to this population and eliminate the problem of inaccessible services, professionals must be knowledgeable in the area of dual diagnosis and tailor their services accordingly.

Discontinuity of Patient Care

As previously discussed, individuals with both mental retardation and mental illness are often not able to access services. Typically, inaccessibility is a result of professionals who are unaware of the specific needs of this population, and, therefore, clients with dual diagnosis are often referred from one agency to another in a fruitless attempt to obtain services (Fletcher, 1993). Additionally, either the mental health or the mental retardation service system provides services, but the separation that exists between these systems hinders the provision of care.

Separate systems. The Mental Health and Mental Retardation Act of 1963, created administrative structures for two service systems, with separate responsibilities, budgets, and service missions, along with different treatment and care philosophies (Menoscalino, Gilson, & Levitas, 1986). Professionals in the mental retardation system typically concentrate on teaching skills of daily living, encouraging independence, and enhancing social-adaptive skills. On the other hand, mental health professionals typically focus on the diagnosis and treatment of disorders and the maintenance of function through relatively infrequent contacts (Menolascino, Gilson, & Levitas, 1986). These key differences often make it difficult for individuals who are dually diagnosed to receive services from both systems, and ultimately many clients fall through the cracks, because neither the mental health system nor the mental retardation system takes responsibility for securing treatment (Fletcher, 1993).

Additional barriers to multi-system services. The separation between the mental health and mental retardation service systems creates several barriers to service delivery for individuals with dual diagnosis. As previously mentioned, these two systems have operated independently for years, competed for limited funds, and taken responsibility for a client population with a single diagnosis. As a result, barriers to multi-system services are quickly established and clients may not receive necessary services (Woodward, 1993). Professionals in the mental health and mental retardation systems are often reluctant to implement change, despite the need to provide collaborative services. Individuals often remember the energy that went into building the systems, obtaining adequate funding, and providing necessary training, and they are not willing to implement a change (Woodward, 1993). An additional barrier to multi-system services is that individuals with dual diagnosis are often not a population with an ascribed status in either system. Their challenging behaviors make them undesirable clients, and they are often moved from one system to another (Woodward, 1993). In order to provide effective services, professionals must work through problem areas and create a more collaborative form of treatment.

Primary vs. secondary disorders. Along with the difficulty in formulating collaborative treatment plans, individuals with dual diagnosis often receive a primary and secondary diagnosis, which further complicates the provision of services. It is often difficult to determine which disability is primary for individuals with dual diagnosis. For example, if an individual with mental retardation, who displays psychotic symptoms, lost his home and job, did the mental retardation increase his vulnerability to deterioration in functioning or did the psychotic symptoms precipitate these events? This ambiguity of primary and secondary diagnoses is often associated with inadequate mental health services for people with mental retardation (Reiss, 1993). Typically, individuals only receive services for the primary diagnosis, and as long as funds are limited, services for a secondary diagnosis are often not provided (Reiss, 1993). The requirement to define disabilities as primary or secondary hinders the provision of services to individuals with dual diagnosis.

Lack of Professional Training. In addition to problems surrounding diagnosis, many professionals also lack the training necessary to work with individuals with dual diagnosis. For instance, professionals in the field of mental retardation rarely receive formal assessment training outside of their field, and as a result, they are unprepared to recognize mental health problems (Patterson, Higgins, & Dyck, 1995). Likewise, mental health professionals are often ignorant of problems surrounding people with mental retardation. In fact, many psychiatrists have shown little interest in mental retardation, and advances made in understanding and treating mental disorders have not included individuals functioning below a normal developmental level (Szymanski, 1994). Professionals in each field must educate and train each other in order to provide effective treatment for individuals with dual diagnosis.

Financial Responsibility. After highlighting several of the problems in providing services to individuals with dual diagnosis, the financial responsibility of patient care to this population still remains one of the key obstacles in service provision. People with dual diagnosis require extensive amounts of time and skill to provide effective services, which becomes costly for funding sources (Menolascino, Gilson, & Levitas, 1986). Therefore, each system avoids responsibility for meeting the needs of people with dual diagnosis, and individuals are often excluded from services by either or both systems (Menolascino, Gilson, & Levitas, 1986). More specifically, an IQ score above 70 may exclude a person from services from the mental retardation system, although a psychiatric disorder may place their social-adaptive abilities below the general population. Likewise, individuals with mental retardation who do not benefit from traditional psychiatric services due to their developmental disability may be excluded from mental health services. Until the mental health and mental retardation systems are mandated to provide a certain amount of funding to services for individuals with dual diagnosis, people will continue to be excluded.

Examples of Effective Service Provision

Interdisciplinary Team Approach

Before describing specific examples of effective service provision to individuals with both mental retardation and mental illness, it is important to explain the foundation for many of these sample programs. Combining the skills of psychiatrists, nurses, case managers, and vocational specialists into an interdisciplinary team provides optimal care for people with dual diagnosis (Torrey, 1993). Regular team meetings allow these professionals to share information, perspectives, and expertise. It is not necessary that each professional is an expert in mental retardation, but due to the uncertainty and complexity of dual diagnoses, the different perspectives of people from various disciplines is essential (Torrey, 1993). In addition, by involving individuals from different disciplines, professionals can more easily tailor their services to meet the specific needs of an individual with dual diagnosis. For example, a psychiatrist who receives specialized information from a behavioral specialist for individuals with dual diagnosis is more likely to modify therapy sessions to account for intellectual impairments than a psychiatrist who does not collaborate with other professionals (Day, 1994). Not only is a team approach more effective in providing services to individuals with dual diagnosis, but it also allows professionals to sustain their efforts over time.

The Boston START Model

Along with the use of an interdisciplinary team approach, many of the effective programs for individuals with dual diagnosis provide services primarily in the community. One of the first projects to follow the community model and the team approach was the START model in Boston, Massachusetts. START stands for Systemic, Therapeutic, Assessment, Respite, and Treatment, and it is primarily a crisis intervention and prevention service (Davidson et al., 1999). The program is staffed by a part-time psychiatrist, three masters-degreed clinicians, six bachelor-degreed clinicians, psychology consultants, and licensed social workers who act as consultants. The services provided are emergency assessments, respite care, and coordination of outpatient services for people with developmental disabilities who are experiencing acute behavioral and/or emotional crises. The program also provides education for care providers and clinicians regarding the mental health needs of people with developmental disabilities (Davidson et al., 1999). START is a program that intervenes when a mental health problem is suspected and remains involved to be certain individuals receive necessary services.

The Community Specialist Psychiatric Service

Another example of effective service is the Community Specialist Psychiatric Service (CSPS) in London. Initially, interdisciplinary teams were formed by England's National Health Service to support people with developmental disabilities in the community, but plans for mental health services for these individuals were not made until the development of CSPS, which provides clinical and consultative functions (Davidson et al., 1999). A CSPS clinician becomes involved with the team if a mental health diagnosis is suspected and provides assessment, home-based support, outpatient care, and inpatient psychiatric treatment. In the consultative role, clinicians in this program provide not only expertise on dual diagnosis to the interdisciplinary teams, but also education to relatives, service coordinators, and other organizations involved (Davidson et al., 1999). CSPS is an excellent example of a program that employs qualified clinicians to provide direct services to clients, while also educating and training other individuals involved in a client's life.

The ENCOR Model

The Eastern Nebraska Community Office of Retardation in Omaha, Nebraska, was designed almost two decades ago to promote community involvement and citizen advocacy for people with developmental disabilities and individuals with dual diagnosis (Davidson et al., 1999). Approximately 19% of the individuals served by ENCOR have a dual diagnosis, and the types of mental illness among this population include schizophrenia, personality disorders, and anxiety disorders, among other diagnoses. (Fletcher, 1993; Menolascino, 1989). Clients with dual diagnosis who are served by ENCOR can be classified into three levels of involvement; Level I includes people who present daily behavioral management problems; Level II includes of people with occasional behavioral problems; and Level III includes people with infrequent behavioral problems. This classification does not make service provision dependent on a specific diagnosis; rather personnel, supports, and services are determined by the level of a client's need (Menolascino, 1989). Along with this classification system, ENCOR has a policy of zero rejection, which means no individual will be denied services due to the severity of the mental illness and/or mental retardation (Fletcher, 1993). In addition, ENCOR is committed to active treatment of people with dual diagnosis and continually works to link professionals from local mental health and mental retardation programs (Fletcher, 1993). ENCOR's services include family support, specialized group homes, crisis assistance programs, preschool services, in-home teachers, integrated job placements, and inpatient/outpatient care provided by psychiatric professionals (Davidson et al., 1999). The specialized clinical staff at ENCOR become involved in nearly every aspect of the client's life in order to provide the most effective services possible.

The Interface Model

The Interface Program was developed over two decades ago in Cincinnati, Ohio, to provide multi-system services to individuals with dual diagnosis (Woodward, 1993). Although the Interface Program is funded by the Hamilton County Community Mental Health Board, it is administered by the University Affiliated Cincinnati Center for Developmental Disorders, which removes primary responsibility from both the mental health and mental retardation/developmental disabilities service systems (Davidson et al., 1999). The Interface Program is composed of three dual diagnosis specialists and one coordinator with responsibilities in the development and implementation of individualized service plans, provision of necessary mental health and mental retardation services, maintenance of effective interdisciplinary team characteristics, data collection on dual diagnosis subgroups, and local and regional educational programs (Davidson et al, 1999; Woodward, 1993).

Crisis intervention. In addition to this team of specialists, who pull professionals together and access necessary services for individuals with dual diagnosis, the Interface Program also provides crisis intervention services. Until the implementation of these services in 1986, individuals with dual diagnosis who were in crisis were often taken by police to the local psychiatric emergency service, which was not always equipped to serve them (Woodward, 1993). As a result, a contract between the hospital and the Hamilton County Board of MR/DD funded three additional specialists to provide assistance seven days a week to hospital mental health professionals in serving individuals with dual diagnosis. This contract also provided for four short-term hospital beds exclusively for people with dual diagnosis (Woodward, 1993).

Specialized residential programs. In addition to the crisis intervention program developed through the Interface Program, the mental health and mental retardation boards also funded an eight-bed group home designed to serve individuals with dual diagnosis (Woodward, 1993). Following the collaboration of both systems to build this residential facility, it was jointly agreed that the Hamilton County Board of Mental Retardation/Developmental Disabilities would provide case management services to these individuals, while the Hamilton County Mental Health Board would provide counseling and psychiatric services (Woodward, 1993). The collaboration between both systems that created a residential program exclusively for individuals with dual diagnosis and opened the door for individuals with dual diagnosis to receive additional benefits from multi-system service.

The Illinois-Chicago Mental Health Program

Similar to the solutions to provide multi-system services to individuals with dual diagnosis already mentioned, Steven Reiss and Joseph Szyszko created a program designed to meet the mental health needs of individuals with mental retardation sponsored by the Illinois Department of Mental Health and the University of Illinois at Chicago (Fletcher, 1993). The Illinois-Chicago Mental Health Program includes research, educational, and clinical components. The research component primarily addresses prevention, causation, assessment, and treatment of individuals with mental retardation and psychiatric disorder, and the educational component provides service and training to students and professionals at various community agencies (Fletcher, 1993). The clinical component of this program consists of a large outpatient mental health clinic for people with mental retardation. The clinic's primary purpose is to provide mental health services to individuals with mental retardation in the greater Chicago area, but it also serves as a training facility for students from a variety of disciplines (Fletcher, 1993). Not only does this program effectively combine state and university efforts to serve individuals with dual diagnosis, but it also provides an excellent facility for collaboration of professionals from multiple disciplines.

The Ulster County Comprehensive Mental Health Model

In Ulster County, New York, community agencies serving individuals with mental retardation worked together with the local mental health board to create a comprehensive plan that meets the needs of people with dual diagnosis (Davidson et al., 1999). The plan includes seven specific service components designed to meet the specific needs of this population. The outpatient mental health services are provided by the Dual Diagnosis Unit of the Ulster County Mental Health Department, and they include assessment, diagnosis, treatment, case management, and consultation services. Day treatment services are provided by both the mental retardation and mental health systems, and two local hospitals are responsible for acute psychiatric treatment. Most residential services are provided by the mental retardation system, but there is one 12-bed group home for individuals with dual diagnosis that is funded by the mental health department. Two local agencies provide vocational services, with options that include sheltered workshops and supported employment. Most importantly, the Ulster County model provides training in dual diagnosis to a wide variety of staff and helps to coordinate services in both systems through regular team meetings (Fletcher, 1993). Ulster County is able to provide effective services to individuals with dual diagnosis due to the substantial amount of efforts in coordinating services between the two systems and encouraging professionals to work together to meet the needs of each individual client.

Summary and Recommendations

Individuals with dual diagnosis are presented with a serious obstacle when seeking necessary services. There is a lack of specialized services and professionals available to serve this population, and the systems responsible for funding and providing services are typically separated from each other. The mental health and mental retardation service systems have separate budgets, missions, and philosophies. In addition, these two systems are often slow to accept financial responsibility for dually diagnosed individuals and to collaborate on the development of comprehensive service plans. Therefore, individuals with dual diagnosis often do not receive appropriate treatment and services.

In response to these problems, programs have been developed across the country to bridge the gap in service provision for individuals with dual diagnosis. Most of these programs involve an interdisciplinary team, which pulls together professionals from several disciplines to create an effective plan for services. One of the first models to develop a comprehensive service plan was the START Model in the greater Boston area. London also established a Community Specialist Psychiatric Service, which formed an interdisciplinary team to provide diagnosis, assessment, home-based support, outpatient care, and inpatient psychiatric services to individuals with dual diagnosis. Another example of an effective service plan was implemented in the greater Chicago area through the Illinois-Chicago Mental Health Program. This program provides an extensive outpatient clinic for individuals with dual diagnosis with services from a variety of disciplines.

In order to continue the trend of providing effective services to individuals with dual diagnosis, there are several guidelines that communities must consider when developing a comprehensive and collaborative service plan. Initially professionals must be willing to put forth the necessary time and effort in the development of a program. Putting into practice values centered on community integration and system collaboration can be a time consuming process (Menolascino, 1994). Secondly, professionals involved must be willing to serve all individuals regardless of the level of mental retardation and the extent of the psychiatric disability (Menolascino, 1994). A program designed to serve individuals that easily fall through the cracks of the system cannot be selective when choosing clientele. In addition, there must be a consensus among professionals in the community that there is a need for a comprehensive service program. Once a general consensus is established, the community must provide cross-system access by employing staff who are experienced and respected by both the mental health and mental retardation systems (Davidson et al., 1999). Using an interdisciplinary approach promotes this cross-system access, along with development of multiple interventions that may be beneficial for individuals with dual diagnosis. Finally, effective service provisions for individuals with dual diagnosis must be community-based because that is where most resources for this population are found (Davidson et al., 1999). By following these guidelines and the examples of programs already in place, individuals with dual diagnosis can begin to receive specialized services by qualified professionals, rather than falling through the cracks of both the mental health and mental retardation systems.

References

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Jill L. VanderSchie-Bezyak
University of Wisconsin-Madison

Jill L. VanderSchie-Bezyak, 1118 Delta Ave., Apt. 1, Cincinnati, OH 45208. Email: [e-mail]