Michael Tucker, MA; Valerie Fisk; Charlton Hart
As community-based residential services for people with developmental disabilities continue to expand, individuals who remain either in institutional settings or on waiting lists are likely to have more than one disability. Designing innovative residential programs to meet the needs of the person with multiple disabilities may well become the primary challenge of the next decade. The YAI-National Institute for People with Disabilities (YAI-NIPD) Kingsbridge Individualized Residential Alternative (IRA), an example of one such program, is an eight-bed, all-male residence that was designed to serve a specific subset of this population: men who have a developmental disability, a mental illness, and a history of substance abuse. The Kingsbridge residence opened in March of 1998.
This paper will present a number of issues that were encountered when designing the Kingsbridge residence. The first section describes the client population and factors that were important in determining which individuals were appropriate for residential placement. In the second section, factors that affected the residential service design are discussed. The YAI-NIPD Policy and Procedure for Substance Abuse Testing of Consumers, as well as the need for such a policy, is briefly described in the third section. A case study of a consumer living in the residence follows, in an attempt to present the concepts described in this paper in a more concrete manner.
When we began, we found very little information available on this population; as a result, we were operating on hunches and best-guesses at times. To say we have learned a lot through the development of this program would be an understatement. We hope that other service providers who are attempting to design similar residential programs will find this paper useful.
As the efficacy and success of residential-based interventions are likely to vary as a function of the appropriateness of the individuals being served, consumer selection is a crucial component in designing any residential program. Prospective consumers for the Kingsbridge residence had to meet three diagnostic criteria: each had to have a primary diagnosis of mental retardation, a psychiatric diagnosis, and a history of substance abuse. Although we considered these to be exclusionary criteria in deciding which individuals would be screened for residential placement, they were by no means considered sufficient in determining appropriateness for this program. This section will describe the factors associated with each disability (or diagnosis) that were used to determine each individuals suitability for placement in the Kingsbridge residence.
In terms of the individuals developmental disability, the primary factor we considered was overall functioning level. Individuals whose approximate functioning level appeared to be in the high end of the moderate range of mental retardation or above were considered to be more appropriate for placement. This decision was based primarily on treatment considerations. Because there was virtually no literature focusing on this population, we intended to employ therapeutic interventions that were effective for individuals who had at least two of the three diagnoses (i.e., mental illness and substance abuse or developmental disability and mental illness). Many of these interventions, as well as our teaching inclinations, tended to be cognitive-behavioral in nature. As other authors have reported success in using cognitive-behavioral techniques with higher-functioning individuals (Black & Novaco, 1993; Lloyd, Talbott, Tankersley, & Trent, 1993), we felt that individuals of similar functioning level would be more likely to respond to the interventions we intended to use.
Selecting individuals who were high-functioning also helped to increase the homogeneity of the group. As one would expect a selection bias toward high-functioning individuals when being limited to a population that has a history of substance abuse, we did not expect to exclude individuals because of low functioning level. However, one of the first individuals we screened was excluded for this reason. Additionally, one of the first consumers to move into the residence was later moved out and into a more appropriate residential setting after we determined that his functioning level was much lower than previously thought. These cases may indicate that the problem of substance abuse in the population with developmental disabilities is much more pervasive (and less selective) than previously believed.
The individuals we screened for residential placement were relatively homogenous in terms of psychiatric diagnosis. All had histories of a psychotic disorder, with diagnoses including Schizophrenia, Schizoaffective Disorder, Bipolar Disorder with psychotic features, and Organic Brain Disorder with psychotic features. As individuals with developmental disabilities have been reported to be frequently inappropriately diagnosed as psychotic (Sturmey, 1998), we expected this to be the case with many of the individuals we were screening. However, most of the potential residents we screened exhibited unmistakable signs and symptoms of psychotic disorders, such as active hallucinations and delusions, incoherent or tangential speech, flattened affect, and avolition.
Although almost all of these individuals truly suffered from mental illness, there was great variability in psychiatric status. In determining which individuals were appropriate for residential placement at that time, the primary factor we considered was the persons psychiatric stability. In determining stability, we examined two component factors. The first of these concerned psychiatric hospitalization, including the number of times the individual had required hospitalization, the length of stay, and the date of the most recent hospitalization. We felt that these variables were important because length of stay (or psychiatric decompensation) and number of previous hospitalizations are both related to future decompensation (Korkeila, Lehtinen, Tuori, & Helenius, 1998). In general, the fewer the hospitalizations and the longer the period of time since the most recent hospitalization, the more comfortable we felt in the persons stability. Unfortunately, because many of the prospective residents had been living in hospital settings for long periods of time, this index of stability was of limited use. As such, we began to consider the persons response to medication as a measure of stability. In this sense, an individual was considered to be more psychiatrically stable (and therefore more appropriate for residential placement) if most of his psychiatric symptoms were either effectively treated or at least partially managed by medication. Interestingly, even after considering each of these component factors and accepting only those individuals who were most stable, we found that a large amount of variability remained in terms of psychiatric symptomatology. Of the eight men who were accepted for placement in the Kingsbridge residence, only two were completely free of psychotic symptoms.
Because virtually nothing was known at that time about substance abuse in people who have developmental disabilities, we had few expectations regarding this when we began the screening process. Similar to the heterogeneity we encountered with psychiatric status, there proved to be a great deal of variability in the individuals histories of substance abuse as well. For a few individuals we screened, histories of substance abuse were limited to alcohol consumption that was only problematic for a short period of time many years in the past. In these cases, the substance abuse appeared to have been a function of the their environment (i.e., they drank because those around them drank) and was not an ongoing concern. For other individuals, histories were more pervasive and included drugs such as crack cocaine, marijuana, and LSD. Many of these individuals had been incarcerated for varying periods of time as either a direct or indirect result of his substance abuse (to be discussed more later). In these cases, the person had been more active (or at least opportunistic) in his drug-seeking behavior. Consequently, substance abuse was a primary concern for these individuals. The majority of people we screened had histories that fell somewhere between these two patterns.
Given the amount of variability we encountered in the individuals histories of substance abuse, we considered two primary factors in determining suitability of residential placement. In the first, we reviewed the individuals topography of abuse, including their drug(s) of choice, the pervasiveness of abuse, and the amount of time (if any) that the person had been free of abusive behavior (i.e., how recent was the abuse?). The second factor we considered was the individuals attitude toward future substance use. The person needed to be able to verbalize in some form that avoiding drugs or staying clean was important to him. In general, individuals were considered to be good candidates for residential placement if they had not engaged in serious substance abuse in the preceding year (regardless of their drug of choice) and if maintaining sobriety was one of the persons valued outcomes.
As mentioned above, more than a few of the people we screened had histories of incarceration. In fact, approximately 30% of these individuals had been arrested for engaging in some form of criminal activity. In many cases, the crimes for which they were incarcerated were related to their substance abuse. In other cases, the criminal activity was more of a function of the persons mental illness. Although we had not expected to encounter so many individuals with criminal histories, we did not think that this factor alone should be used in an exclusionary manner. In determining if these individuals were appropriate for residential placement, we considered the nature of the crime (violent crime was deemed riskier than property crime), when the crime occurred, the probability of the individual engaging in that type of behavior again, and the impact such behavior would have on other residents. Accepting individuals with criminal histories meant that we would have to provide safeguards (as mandated by New York State) to protect both the potential perpetrators and their victims. Some of these safeguards affected the residential design and will be discussed further in the next section. Of the eight men who now live in the Kingsbridge residence, three have forensic histories.
Residential Service Design
In order to appropriately serve individuals with developmental disabilities, mental illness, and substance abuse histories, therapeutic and environmental structures that are easily integrated yet disability-specific are required. These are necessary in order to maintain these individuals in the community (i.e., prevent re-institutionalization), ensure each individuals health and safety, as well as aggressively address all treatment needs. These therapeutic and environmental structures can be divided into three broad categories: staffing concerns, physical plant/environmental modification issues, and accessing appropriate services. This section will outline salient issues from each of these categories.
Due to the multiple disabilities and histories of the individuals selected for the Kingsbridge residence, we anticipated needing a higher ratio of staff to consumers than is found in most residential programs. As these consumers had lived a significant portion of their lives in institutional settings, successful transitions to a community setting would be challenging for each individual. Additional staff would help to ease this transition by providing increased individual support and guidance. In addition to a higher staff to consumer ratio, we also felt that clinical supports (at least part-time) were warranted within the program for two primary reasons. First, an in-house clinician would help to ensure that all treatment decisions were knowledge-based. Secondly, an in-house clinician would be able to provide all staff with ongoing training on how to effectively work with individuals with multiple disabilities as well as recognizing signs and symptoms of psychiatric decompensation. As both of these issues would be financially determined, we sought and received additional government funding. As a result, the Kingsbridge residence has both an enriched staffing pattern (minimum of three staff to eight consumers during waking hours) and a 20-hour per week Masters-level psychologist.
The second category of issues we faced in designing the Kingsbridge residence focused on the physical plant itself. As mentioned above, helping each individual to make a successful transition from living in institutions to community-based living was of paramount importance. We wanted each consumer to feel like the residence was his home. In this vein, a great deal of planning and attention to detail was devoted to making the residence as home-like as possible. Beyond creating a pleasant living space, we were faced with two issues regarding environmental modification. In the first, because some of our consumers had forensic histories, we needed to provide adequate supervision to ensure that they would not engage in further criminal activity. This was necessary to protect the individual from further incarceration as well as to protect members of the community. In order to achieve this, an alarm system was installed that would sound when someone left without approval. The second issue involved cigarette smoking. As smoking is very common in psychiatric populations (Kendrick, 1996; Hughes, Hatsukami, Mitchell, & Dahlgren, 1986), we anticipated that many of our consumers would smoke. Because we were limiting access to outdoors (at least initially) for safety reasons, individuals would not be free to smoke when they chose unless smoking was permitted indoors. As a result, we installed an exhaust fan in one of the rooms in the residence so it could serve as a smoking room. It was fortunate that we anticipated this issue, as all eight of the men who presently live in the Kingsbridge residence smoke.
Of all the issues we encountered when planning the residential service design, none were more important to the success of the program than the third category of issues, accessing appropriate services. Although we intended to provide an array of habilitative services within the program, the consumers would need to have the majority of their treatment concerns addressed by providers in the community. As a result, finding providers who could effectively work with individuals with multiple disabilities became (and to some extent, remains) the focus of attention. Day treatment programs that were designed for individuals with developmental disabilities were not appropriate for many of our consumers, as the Kingsbridge residents tended to be higher-functioning. On the other hand, day treatment programs designed for people with mental illness had little experience in working with people with developmental disabilities. Workshops and work-readiness programs, though appropriate to functioning level, could not provide levels of supervision that our consumers (especially those with criminal histories) required. For the person with multiple disabilities, the approach to accessing appropriate day program services must be done on a case-by-case basis. As a result, five separate day program services are represented by the eight men of Kingsbridge.
As each of the Kingsbridge residents suffered from some form of mental illness, psychiatric services also needed to be accessed for each individual in order to maintain stability. Furthermore, perhaps because all of these individuals came from institutions, many of them came to Kingsbridge on higher than necessary dosages of psychotropic medications. Finding psychiatrists who were both familiar with working with the consumer with dual-diagnoses and willing to attempt medication decreases was of primary concern. In addition to finding psychiatric care to help maintain these individuals in the community, we also wanted to be prepared for the event of a consumers decompensation and need for psychiatric hospitalization. To this end, we were able to establish a relationship with an area hospital whose staff was familiar with treating individuals with dual-diagnoses (and substance abuse in some cases). As of this writing, we have not needed to utilize these services.
In regard to substance abuse, accessing appropriate treatment required considering the substance abuse profile of each individual consumer. For some, substance abuse was not a current concern and did not warrant more than education and support, both of which could be provided within the residence. For others, substance abuse histories were more pervasive and required ongoing treatment. In order to address the treatment needs of these individuals, we considered facilitating a twelve-step group (such as Alcoholics Anonymous or Narcotics Anonymous) within the residence. However, because non-developmentally disabled people with psychiatric disorders do not respond well to this type of treatment (Case, 1991; Bartels & Drake, 1996), the idea of an in-residence group of this type was rejected. Instead, we decided to access substance abuse treatment for those who needed it on an individual basis. As a result, one of our consumers attends a twelve-step group, four receive educational and relapse prevention counseling on an individual basis within the community, and the other three receive educational and supportive counseling within the residence.
Substance Abuse Testing Policy
Given the histories (both drug and criminal) of the Kingsbridge residents, there was much concern about the potential risk of unsupervised community access for these individuals. Consequently, independent community access for these consumers was viewed as a privilege rather than a right. Even though this access would initially be restricted, we knew that many of the residents would eventually demonstrate that they were ready for this privilege. When this occurred, a method of monitoring any drug-taking behavior would be needed in order to ensure each individuals safety in the community. As this represented new ground for our agency, there was no existing framework that would help guide our decision-making. As a result, the YAI-NIPD Policy and Procedure for Substance Abuse Testing of Consumers was developed.
This policy outlines the reasons for which an individual may be asked to submit a urine sample for testing, including both scheduled testing (as part of an individual program plan) or as-needed testing due to consumer behavior that would lead staff to suspect substance use. The policy also describes the procedure staff should follow to procure this sample to ensure that the urine is from the selected individual as well as the amount of training staff should receive before using drug-testing kits. Perhaps most importantly, the policy states that each individual who is asked to participate in drug-testing for any reason receive education and training that would help the person to prevent substance use. Such a provision is an extension of our agencys philosophy of teaching new skills rather than simply attempting to eradicate problem behavior. Each of these guidelines were delineated in the policy to ensure that each individuals rights were being protected.
Joseph is a 48 year-old Hispanic man with diagnoses of Mild Mental Retardation, Schizophrenia (Paranoid Type), and a history of alcohol and marijuana abuse. Joseph was diagnosed with a developmental disability as a child and attended a special school until age eight, at which time it is reported he became too aggressive to continue. According to records, Joseph began receiving outpatient psychiatric treatment as a young adult. He continued to receive outpatient treatment for approximately 15 years while he was living at home with his mother. In 1988, Joseph was becoming increasingly paranoid and aggressive. His mother reported that he had been acting erratically, carrying all of his possessions around with him and talking irrationally. He was hospitalized at Bronx State Psychiatric Center after being arrested for throwing rocks at strangers in the street. Joseph remained hospitalized for approximately four years, being released to his familys care in 1992. Unfortunately, Joseph soon began to decompensate and was re-hospitalized less than six months later, where he remained until 1998. Once the New York State Office of Mental Health realized that Joseph had a developmental disability, it became a priority that he be transferred to the Office of Mental Retardation and Developmental Disabilities (as these offices and systems are funded differently in New York State). As such, Joseph was one of the original consumers we were asked to screen for residential placement in the Kingsbridge IRA.
During the initial screening process, Joseph presented as a friendly man with strong verbal skills who was disheveled in appearance. Although his psychotic symptoms were being well-managed by neuroleptic medications, his speech remained tangential at times and evidenced remnants of paranoid ideation. In addition to his psychiatric illness and developmental disability, Joseph also had a history of chronic renal failure, a condition most likely caused or exacerbated by alcohol abuse. At the time of the screening, Joseph had been free of drugs and alcohol for a number of years. As Joseph met the criteria described in the first part of this paper, he was judged to be appropriate for residential placement.
An initial assessment period of one month followed Josephs arrival at the Kingsbridge IRA. During this time, Josephs poor hygiene and difficulties with anger management proved to be his most pressing needs. As such, basic habilitative program plans designed to teach him hygiene and self-care skills were begun in conjunction with a behavior management plan that emphasized deep breathing as a coping technique. Joseph began to make slow but steady progress regarding hygiene skills, but tended to perseverate over issues that made him angry rather than use the deep breathing exercises. As a result, we began to teach Joseph how to use coping statements when he first realized he was becoming angry (i.e., how to perseverate on the positive rather than the negative). This change has helped Joseph to exert better control over his anger and allowed him to progress in other areas as well.
Approximately six months after Joseph moved to the residence, it became evident that he would soon be ready to independently access the community. In preparation for this, we began teaching Joseph how to navigate the local community while also ensuring that Joseph could safely cross streets and find his way back to the residence. Once he demonstrated these abilities, an individual program plan that slowly increased the amount of time he was allotted in the community was developed. In the beginning, Joseph was allowed four independent trips in the local community each week. Residential staff were to follow Joseph without his knowledge on two of the four trips to ensure both his safety and that he was accurately reporting his whereabouts. After a designated amount of time of incident-free community access, Joseph was allowed as many trips in the local community as he wanted. During this step of the plan, staff needed to follow Joseph on only one trip each week. After nine months of working on this program plan, Joseph satisfied the objective and mastered the plan. Currently, he is able to come and go as he pleases and staff no longer need to follow him.
In conjunction with the independent community access plan, Joseph also began working on a plan designed to prevent substance abuse. As part of this plan, Joseph attended substance abuse counseling in the community on a weekly basis. Relapse prevention was (and remains) a major component of this counseling. Additionally, Joseph began meeting on a weekly basis with residential staff to learn about his mental illness, the medications he takes for this disease, and the potentially dangerous interactions between his neuroleptic medication and street drugs and alcohol. This plan also called for random drug-testing, the frequency for which was to be determined by test results. Initially, Josephs urine was tested for drug use once each week (on random days). After six months of negative test results, the frequency of drug-testing was reduced to once every two weeks. Joseph has progressed to the point to where he is currently tested for substance use only once each month.
If Joseph continues to progress at current levels, we may eventually get to the point where drug-testing is no longer warranted. Additionally, if Joseph desires, we will teach him how to independently use the city travel system so that he is not limited to local community access.
Although great strides have been made in providing residential services for people with developmental disabilities, much work remains in developing appropriate residential services for the individual with multiple disabilities. The YAI-NIPD Kingsbridge residence is an example of a residential program that was designed to serve a specific subset of a multiply-disabled population: individuals who have a developmental disability, a mental illness, and a history of substance abuse. As noted above, our knowledge of this population of consumers was quite limited when we began. Through both our successes and failures, we have gained a better understanding of the individuals we are serving and the difficulties they face. Of note, we have gained enough confidence in working with these individuals that YAI-NIPD is currently arranging to open a two-person IRA for a married couple, both of whom have a developmental disability and significant histories of substance abuse.
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For further information:
Michael Tucker, Residential Psychologist
Valerie Fisk, Coordinator of Bronx Development
Charlton Hart, Residential Supervisor
YAINational Institute for People with Disabilities
170 West Kingsbridge Road, #1A
Bronx, NY 10463
(718) 543-0269; fax (718) 884-8610