NADD Bulletin Volume VI Number 4 Article 1

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A Model for the Provision of Psychiatric Services for People with Developmental Disabilities

Jay W. Bamburg, Ph.D.

Jodie S. Holloway, M.D.

Clifford Crafton, M.D., Ph.D.

Amy C. Clifton, B.A.

Louisiana Office for Citizens with Developmental Disabilities, Psychiatric and Behavioral Resource Center

Abstract

Persons with developmental disabilities exhibit the full range of psychopathology as described in the scientific literature. As a result, treatment regimens including psychotropic medication are prevalent in this population. The current study examined a biopsychosocial approach to psychiatric treatment for persons residing in a mid-sized Intermediate Care Facility in Louisiana. In addition to providing enhanced psychiatric care, the clinic format served to educate treatment team members in the premises of quality care in a dually diagnosed population. The combination of input from all members of the interdisciplinary team, specialized medical consultation as warranted, and increased education regarding psychiatric conditions resulted in a distribution of psychiatric diagnoses more in line with those found in current scientific literature. With improved diagnostics, the use of psychotropic medication for the sole purpose of behavioral control and the utilization of polypharmacy significantly decreased. Roles of team members in the psychiatric consult process, as well as implications for training professionals to better address the needs of persons with dual diagnosis, are outlined below.

Developmental disabilities are severe chronic disabilities inclusive of mental retardation, cerebral palsy, epilepsy, and autism. Additionally, the term includes conditions other than traditional mental illness that are closely related to mental retardation with regard to impairment in intellectual functioning and adaptive behavior (American Psychiatric Association, 2000). For many persons exhibiting developmental disability, aberrant behaviors or symptoms of psychopathology are the most salient features of the behavioral repertoire. Behavior problems such as aggression, self-injurious behavior, tantrums, property destruction, stereotypies, pica, and rumination are exhibited by upward of 40% of individuals in institutional placements (Baumeister, Todd, & Sevin, 1993). Moreover, the prevalence of psychopathology in persons with developmental disability has been estimated at four to six times that of the general population (Borthwick-Duffy, 1994). These conditions are readily observed by caregivers and professionals alike and are often the primary presenting problem for persons with the condition.

Treatment of symptoms of psychopathology and behavioral disturbance requires considerable resources and expertise. However, due to problems in implementing behavioral treatments and some agencies' unwillingness to apply these methods, many treatment teams have turned to pharmacological interventions as the primary means of treating maladaptive behaviors. The same is true for the treatment of psychopathology. Common practice is to treat most disorders with psychotropic medication alone, despite numerous studies suggesting that the combination of medication and behavioral treatments is most viable for treating many psychological disorders (Psychoses; Depression; Anxiety; Mania) (Baumeister & Sevin, 1990).

Reviews of pertinent literature indicate that psychotropic medications are extremely overused with persons evincing developmental disabilities. The actual prevalence rates vary for individuals living in institutional versus community based settings. Prevalence rates for persons living in institutional settings have ranged from 50-66%, with most (40-50%) receiving traditional or atypical antipsychotics (Reiss & Aman, 1998). For persons residing in community settings, prevalence rates have ranged from 7-74% and neuroleptic medications are the most widely prescribed in the population (Matson et al., 2000). Many reasons for increased psychotropic drug use exist and include lack of staff, lack of access to professionals, and lack of command of appropriate assessment techniques. However, these reasons alone are not sufficient to explain the large numbers of persons with developmental disabilities who are prescribed psychotropic medications.

Tremendous variability exists in the practice of providing psychiatric care to persons with developmental disabilities. Provider agencies that utilize biopsychosocial treatment and a multidisciplinary approach of assessment and monitoring are available. However, due to lack of expertise and funding, many agencies rely on medical personnel to address significant issues without the benefit of information from the multidisciplinary team. Inadequate information from team members represents a significant problem in the psychiatric consultation process and is often at the core of inappropriate diagnoses, overuse of psychotropic medication, polypharmacy, continued behavioral challenges, and deleterious medication side-effects.

Pharmacologic interventions have become some of the most widely used with persons evincing mental retardation despite the fact that many drugs are ineffective for behavior control, suppress total behavioral repertoires, and/or cause deleterious side-effects (Matson et al., 2000; Baumeister & Sevin, 1993). The purpose of this paper is to provide an overview of a multidisciplinary approach to assessment, treatment, and monitoring of individuals with dual diagnosis. We believe this is an important topic given the lack of understanding about the efficacy of these drugs in this population and the research that supports them in clinical practice.

Method

Outlined below is the comprehensive approach to assessment, treatment, and monitoring of a dually diagnosed population that was implemented at a medium sized Intermediate Care Facility (ICF-MR) for persons with developmental disabilities. This facility is located in the southeast portion of Louisiana and is home to 320 people with developmental disabilities.

Participants

Participants included 104 individuals residing at an ICF-MR in Louisiana. These individuals had received services from a variety of psychiatric consultants during their stay in the developmental center. The formal psychiatric clinic and the model outlined below were implemented by the authors when they began consultation with the agency. While the complete spectrum of mental retardation was represented in the clinic, most of the individuals functioned in the profound range (90%). The average age of participants was 45.2 years.

Procedure

Psychiatric consultation occurred in formal clinics that were held three times weekly at the developmental center. Each clinic allotted between 45 minutes and 1 hour per individual, and three to five individuals were seen in each clinic. All individuals in the clinic were seen a minimum of four times per year; however, those with significant psychiatric/behavioral issues and emergent situations were evaluated with greater frequency. All core team members were present for each meeting and were expected to arrive ready to discuss the issues pertinent to their particular discipline. Subsequent meetings were held at the end of each day's clinics to discuss findings and recommendations with the primary care physician in each case. The structured clinic served two primary purposes: 1) enhanced diagnostics and treatment planning, and 2) enhanced education concerning medical, psychiatric, behavioral, and social variables influencing the presentation of the individual in question.

The first step in our model of optimal psychiatric care for persons with developmental disabilities was the participation of an array of personnel in the treatment process. While it is clearly understood that some agencies may not have access to the complete range of professionals outlined below, it is our belief that the roles described are vital and should be undertaken by members of the treatment team. Core team members should include, at a minimum, the individual under consultation, his/her caregivers (family, personal care attendant, direct support professionals), psychiatrist/physician with experience serving persons with developmental disabilities, psychologist with behavioral training, nursing staff, and other personnel, including QMRPs, social workers, etc., that have regular contact with the individual in question. The list below denotes a primary list of duties/responsibilities as performed by each member of the interdisciplinary team.

A.Individual under consultation: The person under consultation should be at the center of the consultation process. In order to complete an accurate assessment, team members are reliant upon the individuals to whom care is provided to express their current thoughts and feelings. While it is true that many persons with developmental disabilities are nonverbal, their behavioral repertoires accurately convey their current status.

B.Primary caregivers: Primary caregivers are essential in the assessment and treatment process because of their more frequent daily interactions with the person. Furthermore, primary caregivers are normally charged with collecting the data necessary to evaluate treatment. Therefore, input from caregivers in the assessment, treatment, and monitoring phases is essential. Pertinent historical and current information is ascertained through the communications and interactions between the individual under assessment and his/her primary caregiver. Without this information, deriving accurate diagnoses and treatment plans becomes a more difficult task.

C.Psychologist/Team Leader: The psychologist must serve many integral functions in the assessment and treatment process. First, psychologist conduct functional assessments that are necessary to support consultation. Assessments should include evaluation of intellectual and adaptive abilities, functional analysis of challenging behavior, assessment for the presence of symptoms of psychopathology, social skills assessment, and communication assessment. Next, the psychologist takes this information, in conjunction with other relevant case information, and formulates working diagnoses to be considered by other team members. Third, when diagnoses are warranted, psychology staff should design treatment packages to work in conjunction with psychotropic medication for optimal treatment success. Finally, the psychologist must design data collection systems to effectively monitor the efficacy of all prescribed treatments. Data should be collected in multiple areas, including areas measuring quality of life, social/adaptive skills, symptoms of diagnosed psychopathology, and challenging maladaptive behavior. In addition, when psychotropic medication is prescribed, data pertaining to the presence of deleterious side-effects must be collected.

D.Nursing Staff: Nursing staff are a vital portion of the consultation process. Nurses are involved in the daily assessment and monitoring of health issues for the persons in their care. Often, when a significant change in presentation or status occurs, nurses are invaluable sources of information regarding such changes. The assessment and treatment process is reliant upon nursing staff's monitoring and collecting lab work when appropriate, assisting with physical statistics and vital signs as indicated, and working in conjunction with team leaders, social workers, and the primary care physician in the family education and consent processes.

E.Social Work Representatives: Representatives from the social work genre are also integral in the treatment and monitoring process. Pertinent social histories, including family information, past placements, history of abuse/neglect, past hospitalizations, and other information are provided by social workers in written histories and on an ongoing basis during consultation. This group also maintains family contact to convey information concerning daily functioning and the status of current treatments. Finally, social workers work in conjunction with medical personnel and team leaders in the family education and consent processes.

F.Primary Care Physicians: The consultation process is reliant upon the primary care physician for enhanced psychiatric care. The primary care physician denotes both past and current medical problems for each individual. It is also the responsibility of the primary care physician to facilitate referrals to other disciplines that may clarify the diagnostic process (e.g., genetics, neurology, radiology, endocrinology, dietary, etc.). Finally, the primary care physician works in conjunction with the consulting psychiatrist to review findings and order formal recommendations.

G.Medical Specialists: This psychiatric consultation process utilizes a number of physicians from specialized disciplines as recommended by the psychiatric consultant and ordered by the primary care physician. One such specialist is the geneticist. There are over 3000 known genetic conditions associated with mental retardation, and between 1500-2000 of these conditions can present with behavioral and psychiatric difficulties mimicking psychopathology (Jones, 1997). Without appropriate assessment, these conditions are often overlooked, diagnosed as traditional psychopathology, and/or inappropriately medicated.

Another specialty discipline that is frequently utilized in this psychiatric

model is neurology. The link between neurology, psychiatry, and behavioral disturbance has been well documented for many years (Meinardi, Cramer, Baker, and daSilva, 1993). In this model, the neurologist works for clarification in the diagnostic process through assessment, joint neuropsychiatric clinics, and interpretation of medical tests such as MRIs and CTs. Finally, the neurologist and movement disorder specialist work with the treatment team in the assessment, diagnosis, and treatment of the movement spectrum of disorders.

H.Consulting Psychiatrist: In this model the psychiatrist has two primary roles. The first of these roles is service to the treatment team and other branches of medicine as a knowledgeable liaison and resource. The psychiatrist utilizes all information and provided data in the assessment process and makes accurate psychiatric diagnoses. In those cases where diagnoses are appropriate, the psychiatrist must formulate systematic, data-based medication/treatment plans, identify target symptoms for treatment with medication, and modify treatment plans based on data presented from all members of the treatment team. Likewise, when it is determined that diagnoses are not warranted and existing medication regimens are inappropriate, the psychiatrist must formulate plans for dismantling the regimen and identify for the team those things to be evaluated during the taper of the medication.

The second role served by the psychiatrist in this process involves

continuing education for all team members with regard to assessment, diagnostics, and treatment of psychopathology in persons with mental retardation. Examples of information provided to facility team members included the presentation of particular psychiatric illnesses in persons with developmental disabilities, appropriate and inappropriate uses of psychotropic medication, the interplay of medical conditions in behavioral/psychiatric presentation, and medication side-effects, including the movement spectrum of disorders. This information was presented to team members in the psychiatric clinic and formal training sessions, as well as to provider agencies across the state of Louisiana in formal psychiatric workshops.

Results

Data presented as evidence of the efficacy of the consultation process were taken at two snapshots in time. The first data (Time 1) were those from August, 2001, the final month before the new, formal consultation process was implemented. The second data (Time 2) were gathered 18 months later, in March, 2003. Five data elements were chosen for analysis: 1) spread of psychiatric diagnoses; 2) classes of medication utilized and total number of individuals receiving medication in each class; 3) total number of persons receiving psychiatric care; 4) total number of persons receiving psychotropic medication; 5) total number of persons receiving treatment with polypharmacy (inter and intraclass).

As demonstrated in Table 1, the spread of psychiatric diagnoses has changed considerably during the 18 month period. At Time 1, most of the individuals in the sample were inappropriately diagnosed in 1 of 2 diagnostic categories (Schizophrenia; Autism). As the consultation process developed, data and information were presented and the diagnostic picture became more accurate and clear. Spread of diagnoses is presented below.

The second analysis considered a number of variables. First, the total number of medication classes were examined. Ten different classes of medication were being utilized at Time 1, but the number decreased to eight (8) at Time 2. The total number of psychotropic medications utilized across the sample was also examined at Times 1 and 2. The results of the analysis indicated a 40% decrease in the total number of medications utilized. Finally, the match between diagnostic category and medication regimen was much improved at Time 2, which served as a further indicator of the success of the team approach to assessment and treatment. Detailed presentation of findings are located in Table 2.

Percentages of individuals in the psychiatric clinic, the number receiving treatment with psychotropic medication, and the number receiving treatment with polypharmacy decreased significantly during the 18 month period. Changes in these areas are noted in Table 3.

Discussion

The psychiatric consultation process that was developed and implemented was successful in decreasing inappropriate medication use. Additionally, diagnoses became more accurate and more in-line with the spread of diagnoses expected in the developmentally disabled population (American Psychiatric Association, 2000; Reiss & Aman, 1998). The authors acknowledge that reductions in medication use are not, in every case, indicative of positive change. However, the case of this sample was similar to that reported in earlier research (Baumeister et al., 1993). Over one-third of the individuals were receiving medication for behavioral control without attempting to use behavioral interventions for amelioration of challenging conditions. Therefore, the reductions that have occurred as a result of these processes are considered both positive and sound.

It was noted by the authors that while the use of traditional antipsychotic

medications significantly decreased, the total number of individuals receiving treatment with antipsychotic medication remained relatively unchanged. However, this finding was viewed as a positive for a number of reasons. First, many individuals who have traditionally received treatment with traditional antipsychotic medications are now medicated with atypical (2nd generation) agents. Early research with these medications has indicated their effectiveness in decreasing positive and negative symptoms of psychiatric illness and lowering the likelihood/prevalence of deleterious side-effects (Conley & Mahmoud, 2001; Bondolfi et al., 1998; Chouinard,1995). These agents have been deemed as both cleaner and safer than the traditional neuroleptic medications. Second, as more of the newer antipsychotic agents have been labeled by the FDA as treatment for Bipolar Disorder, these medications have gained momentum as first-line or adjunct treatments for individuals in acute states. Finally, and most importantly in this sample, the atypical antipsychotic medications have become paramount in the treatment of the movement spectrum of disorders (e.g., Tardive Dyskinesia; Tardive Akathisia; Choreoathetosis; Blephorspasms; Tardive Tourette's). Many of the individuals in our psychiatric sample have medication histories that include 20+ years of treatment with traditional antipsychotic medications. While we have had limited success with completely discontinuing antipsychotic treatment or with replacing the traditional antipsychotic with a non-neuroleptic agent, it has been our experience that lower doses of the atypical antipsychotics have provided a safer alternative for relieving movement related symptoms.

It is important to note that this system has been evolutionary and continues to change as new challenges present. Many in this clinic are multiply handicapped. As a result, the role of team members in addressing pertinent issues, problem solving, and obtaining consultation from other specialists has become more salient in the diagnostic and treatment process. The educational component has also evolved over time. Where early educational efforts focused on basic assessment and diagnostics, newer presentations have led to training in complex areas such as medication management, identification of side-effects, and assessment and treatment of the movement spectrum of disorders. Finally, two major developments that have occurred as a result of this changing consultation process include specialized clinics for neuropsychiatry and management of the movement spectrum of disorders. These clinics have addressed a specific, advanced set of needs and served to enhance the quality of treatment delivered.

The primary drawbacks that families and many providers identify in providing thorough, comprehensive consultation are often related to resources. Many times providers have difficulty accessing professionals who are both trained in the developmentally disabled population and willing to work in the team approach outlined above. Additionally, when adequate professionals are identified, the cost for services is substantial and often outside the purview of what agencies can afford. In these cases, it is often necessary for agencies to downsize the number of team members involved and to allocate duties within the established consultation team. In smaller and mid-size agencies, consultation can be conducted with a person to gather pertinent information, a person to manage assessment and data collection, and the consulting psychiatrist. However, this smaller model is only recommended as a starting point, and the implementing agency should have long-term goals of incorporating a full team for the delivery of psychiatric services.

The provision of psychiatric services for persons with developmental disabilities is a daunting task at best. However, the fields of dual diagnosis and psychiatric consultation continue to evolve and have provided increased understanding in this area. It is our hope that the information presented in this article will serve to raise awareness concerning the need for a multidisciplinary approach to psychiatric care, thus improving the services and quality of life for individuals with developmental disabilities.

References

American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders (4th Ed., Text Revision). Washington, D.C.: Author.

Baumeister, A. A. & Sevin, J. A. (1990). Pharmacologic control of aberrant behavior in the mentally retarded: Toward a more rational approach. Neuroscience & Biobehavioral Reviews, 14, 253-262.

Baumeister, A. A., Todd, M. E., & Sevin, J. A. (1993). Efficacy and specificity of pharmacologic therapies for behavioral disorders in persons with mental retardation. Clinical Neuropharmacology, 16, 271-294.

Bondolfi, G, Dufour, H., Patris, M., May, J. P., Billeter, U., Eap, C. B., & Baumann, P. (1998). Risperidone versus clozapine in Treatment-resistant chronic schizophrenia: A randomized double-blind study. American Journal of Psychiatry, 155, 499-504.

Borthwick-Duffy, S. A. (1994). Epidemiology and prevalence of psychopathology in people with mental retardation. Journal of Consulting and Clinical Psychology, 62, 17-27.

Chouinard, G. (1995). Effects of risperidone in tardive dyskinsia: An analysis of the Canadian Multicenter Risperidone Study. Journal of Clinical Psychopharmacology, 15, 36-44.

Conley, R., & Mahmoud, R. (2001). A randomized double-blind study of risperidone and olanzapine in the treatment of Schizophrenia or Schizoaffective Disorder. American Journal of Psychiatry, 158, 765-774.

 

Jones, K.L. (1997). Smith's Recognizable patterns of human malformation. St. Louis, MO: W.B. Saunders Co.

Matson, J. L., Bamburg, J. W., Mayville, E., Pinkston, J., Bielecki, J., Kuhn, D., Smalls, Y., & Logan, J. R. (2000). Psychopharmacology and mental retardation: A 10 year review. Research in Developmental Disabilites, 21, 263-296.

Meinardi, H., Cramer, J. A., Baker, G. A., & daSilva, A. M. (1993). Quantitative assessment in epilepsy care. New York: Plenum Press.

Reiss, S. & Aman, M. G. (Eds.) (1998). Psychotropic medication and developmental disabilities: The International Consensus handbook. Columbus, OH: Nisonger Center, The Ohio State University.

Correspondence to:Jay W. Bamburg, Ph.D.

Associate Clinical Director

Hammond Developmental Center

45439 Live Oak Drive

Hammond, Louisiana 70401

Email: jbamburg@dhh.state.la.us