Valerie Gaus, Ph.D.; Ellen Keller, Psy.D.; Mary Brady, C.S.W.; Matthew Sturiale, C.S.W.
I. BACKGROUND: DESIGNING A RESIDENCE FOR DUALLY-DIAGNOSED ADULTS: 1987-1989
In 1987 there was a need on Long Island, NY to place a number of institutionalized adults with mental retardation in the community who also had severely challenging behavior. Their long histories of destructive behavior caused each to have been unsuccessful in at least one group home placement in the past. Two years were spent designing an 8-bed intermediate care facility (ICF) in an attempt to meet that need. YAI had been running residential services for developmentally disabled adults since 1970. In that time YAI had developed twenty four group homes throughout New York City and Westchester County, but a home had not been designed exclusively for individuals with severely challenging behavior. Coordinators of the project recognized the need to modify the traditional model of group home development in several ways.
A) Treatment Planning: Designing a Person-Centered Model within the ICF: It was YAIs objective to develop a clinical approach that was 1) individualized for each person; 2) focused on the enhancement of self-esteem; 3) eclectic so as to encompass behavioral, educational and counseling approaches; 4) focused on individual and group objectives that set minimum standards for success; 5) focused on a positive control system that empowered each individual to choose how to engage with his/her environment; 6) coordinated with other providers (day treatment); 7) designed to be feasible for staff to control the environment and the individual as necessary.
B) Team: While the team approach is part of YAIs philosophy in managing all its group homes, it was well recognized that a strong team would be essential for the success of this program. The typical ICF team structure was modified to include a 1:2 direct-care staff to client ratio during awake hours, twenty hours of nursing, a full time psychologist, a full time assistant psychologist and a management team that would be visible and accessible to residents, families, staff and the community. Team activities were designed, so that training would be an ongoing process wherein team members would consistently be learning and collaborating in several formats: group inservices, pyramid training, one-on-one dual supervision alternating between supervisor and psychologist, daily shift meetings and weekly clinical team meetings.
C) Facility: Site selection took into consideration a need for adequate space for participants. Renovations were made to reduce the chance of injury or property damage while balancing the need for ongoing visible supervision by staff with the need for privacy, counseling space and an aesthetically pleasing atmosphere. A time-out room was also included in the design. This therapeutic room was seen as functional for individuals who would become aggressive for periods of time and required a place to calm down. It was intended to minimize the risk of injuries, the need for emergency service intervention and to prevent hospitalization.
D) Community: Collaboration with support systems in the community was crucial while laying the groundwork for the program. These included medical providers, day treatment programs, outpatient psychiatric services, government and community organizations. It was critical that an interdependent system be established to insure successful inclusion and community integration.
II. MEETING THE MENTAL HEALTH NEEDS OF RESIDENTS THROUGH A DECADE: 1989-1999
The above-mentioned planning resulted in the ICF opening in November of 1989 when eight program participants moved in. The primary objective was to facilitate community integration for a group of people who had not previously been able to live outside an institution. As in any ICF, it was necessary to design programs to teach independent living skills. However, the destructiveness of the behavior shown by these eight individuals had prevented them from benefiting from programs in the past. The focus on skills training had to therefore be balanced with the need for effective behavior management. The approach included behavior modification plans used in conjunction with psychotropic medication.
A) Behavior Management Plans: During the first year, the primary mental health need for all participants was to adjust to their new home and to experience a stable, predictable environment. Behavior management programs were designed to teach the residents alternatives to the maladaptive patterns of interacting with the environment, which they learned during years of institutional living. The residential team collaborated to design for each individual a personalized behavior plan, which instructed staff on how to work both proactively and reactively with the challenging behavior.
Through the years that have followed, the emphasis of all behavior management plans has continued to be on proactive approaches, which are designed to prevent crisis. Ongoing assessment of behavioral repertoires has allowed the team build a comprehensive formulation of each individuals mental health needs. It is now well recognized that some of the behavior problems which had prevented successful community placement in the past are actually signs and symptoms of mental disorders. All behavior management plans are based on individualized formulations which take into consideration the cognitive deficits arising from the residents mental retardation and disturbances in mood, perception and thought associated with their mental illness. Based on this, each person participates in a highly structured routine of activities which keeps them continuously engaged in skills training, groups, supportive counseling for problem-solving, and recreational activities. Also included in all routines is consistent and enthusiastic reinforcement for appropriate behavior. Reactive strategies are specified in each plan, which are designed to help individuals regain control when crisis situations arise. All plans are systematically reviewed and modified at least twice a year to meet the continually changing needs of the residents.
B) Collaboration With Other Providers: Crucial aspects of each individuals treatment plan come from outside providers. Ongoing communication was necessary throughout the first year and continues to be a routine part of team activities.
1. Day Treatment Programs: All individuals are enrolled in day treatment programs run by other agencies. Progress on habilitative and behavioral aspects of treatment plans is communicated through daily phone contact and semi-annual case conferences. Behavior management plans used in the residence are coordinated with plans used at the day treatment sites.
2. Outpatient Psychiatric Services: All residents were receiving psychotropic medications in their previous placements for behavior management. Upon moving into the ICF, each individual was therefore set up with a psychiatrist in the community to have the medication regimens evaluated. As mentioned above, it was recognized that many features of behavior problems documented in the past might, for some individuals, be symptoms of psychiatric disorders. All residents continue to receive psychotropic medication and make monthly outpatient visits to psychiatrists. Collaboration is crucial, however, to ensure accurate psychiatric diagnoses and appropriate medication regimens. The psychiatrist is considered a member of the residential team. This role is enhanced by communication through a progress note completed with the input of the entire team before each appointment. Behavioral observations in the home, the community and at day treatment programs are recorded in the progress notes, as well as any changes in medical status.
3. Inpatient Psychiatric Services: Due to the severity of psychiatric disorders seen in some residents, occasionally one has reached such a level of crisis that he or she could not be managed safely in the residence. These incidents have required emergency room visits and psychiatric admissions to local hospitals. To enhance communication, staff provides information to hospital personnel during the emergency room visit and admissions process. Clinical staff provide training on the individuals behavior plan, participate in setting goals for the inpatient treatment, and collaborate on criteria for discharge.
III. INTENSIFYING THE TEAM APPROACH FOR ASSESSMENT AND DIAGNOSIS OF MENTAL ILLNESS: A CASE EXAMPLE
A) When the Existing Approaches are Not Enough: All of the above is effective for most of the residents most of the time. In the third year the program was open one of the residents, who seemed to be very stable on her behavior plan and medication regimen, began to decompensate and present more and more unmanageable behaviors. For one year there were systematic modifications made in her behavior plan and her medication regimen. She continued to worsen and was finally hospitalized for several weeks. Through mutual agreement between her psychiatrist and the residential team, a new psychiatrist was sought who was more comfortable with persons who have mental retardation and who wanted to more aggressively collaborate with our team. For six months of medication adjustments and biweekly meetings with him, moderate improvement was seen, then a rapid decompensation and second hospitalization. It was decided at this point that a more comprehensive assessment and diagnosis was needed. The multi-modal approach presented by Gardner and Sovner (1994) was adopted and modified. Time and space constraints allow us to present only on the collaborative process, but not on details of the actual case material (e.g. description of behaviors or diagnostic hypotheses).
B) Multi-Disciplinary, Multi-Site Collaboration:
To do a comprehensive assessment and treatment plan for the individuals psychiatric disorder, it was necessary to put together a special diagnostic team or clinical task force made up of people from three different agencies. All of the key professionals in the residents life were invited, including some who had worked with her for five years.
The members included:
Residential SystemDay Treatment Outpatient Provider
3 administrators 1 administrator Psychiatrist
2 psychologists1 psychologist
This team met 5 times across six months Each two-hour meeting had a specific objective in the process of establishing a formulation, treatment plan and strategy for ongoing assessment.
Meeting One: The objective was to review the residents history in detail, including past placement, family history, social development and medication history. Past intervention approaches were also reviewed. Some areas that needed further clarification were established and the tasks were delegated to team members.
Meeting Two: Formulations and hypotheses were formed for the residents behavioral symptoms. They included medical, psychiatric, habilitative and social factors. A continuum the residents baseline level of functioning and several levels of crisis were also established. Intervention plans for her baseline level of functioning were established. Areas for further assessment were agreed upon. An assessment instrument was designed to monitor 8 key behavioral symptoms on a weekly basis (See Figure 1).
Meeting Three: Assessment information was reviewed and formulations were modified. The committee agreed to follow-up in six months, while a subcommittee would continue to meet monthly with the psychiatrist to modify the medication regimen.
Meeting Four: The committee met again for follow-up after only two months due to increasing difficulties displayed by the individual at her day treatment program. The team collaborated on further modifications to her treatment plan, including use of inpatient hospitalization.
Meeting Five: The last meeting was used to review strategies that had been attempted by the team to help the individual to benefit from day treatment services. Alternative day treatment placements were discussed and strategies for optimizing inpatient hospitalization were reviewed.
Current Status: This consumer was ultimately diagnosed and treated appropriately during an inpatient hospitalization. The success of that hospitalization can be attributed to the multidisciplinary collaboration that had been utilized during assessment. More than three years have passed since then and this consumer has exhibited no further psychiatric symptoms, has returned to day treatment program and has made tremendous progress toward becoming more integrated into the community. Her psychiatric status continues to be monitored through weekly staff ratings of the eight symptoms and by her outpatient psychiatrist during monthly visits.
YAIs Levittown Residence offers one program model that has been successful for almost 9 years in providing residential services for eight adults with mental retardation and mental illness. The program model must adhere to ICF guidelines, which is considered by many to be too prescriptive. However, the success of the program has been due to the creativity and flexibility of those involved to modify traditional approaches, individualize service plans and establish cooperative and interdependent relationships with other community supports, services and programs.
The task of designing services for individuals with a dual diagnosis has many challenges. Our experience has been that quality services require a commitment to individualized planning, community inclusion and effective collaboration. In some program models (ICF, CR, SLU) one can easily get burdened with regulations and requirements. These models challenge us to think outside the box to insure success. During the last several years, the philosophy of person-centered planning has been implemented through the Home and Community Based Services Waiver in New York State. This philosophical shift to individualize services in lieu of program type has great potential for people with a dual diagnosis. YAI embraces this new approach to designing residential opportunities for people with developmental disabilities and mental illness. In 1998, YAI opened two new residential options for people with a dual diagnosis and will open 4 more during 1999.
Gardner, W.I., & Sovner, R. (1994) Self-Injurious Behaviors: A Functional Approach. Willow Street, PA: Vida Press.
For further information contact:
Valerie Gaus, Ph.D.
Young Adult Institute
2 Meridian Road
Levittown, NY 11756