Positive Approaches Journal, Volume 10, Issue 2

Volume 10 ► Issue 2 ► August 2021

Moving in the Same Direction: A Case Study of How Integrated Care Can Support Independence and Community Living for Individuals with Complex Needs

Brian Rabian, PhD

Abstract

The case of “Steven” highlights the progress possible for individuals presenting with complex challenges when stakeholders are committed to open communication and coordination, and when systems support innovation in programming. For Steven, the journey from managing crises through hospitalizations to stable community living was achieved through development of a new treatment model, and ongoing expansion of his care team to include members able to help address unique needs. Steven’s case highlights the breadth of services available to individuals when all available treatment systems and funding sources are utilized.

Through collaboration with members, families, providers, advocates, and counties, Community Care Behavioral Health (Community Care), a nonprofit behavioral health managed care organization (BHMCO) created in 1996 to support HealthChoices, Pennsylvania’s mandatory managed care program for Medicaid recipients, has implemented and supported innovative programs reflecting the core principles of the Everyday Lives¹ initiative of the Pennsylvania Department of Human Services. These principles include that all individuals with disabilities should be able to experience the same opportunities, relationships, rights, and responsibilities as their fellow citizens, and this includes being a member of a community, with appropriate supports available. The independence of individuals dually diagnosed with mental illness and an intellectual disability or autism can best be achieved through a shared commitment by stakeholders to best practice guidelines, ongoing education, and shared decision making. Representatives from Community Care, including these authors, have been fortunate participants in the ongoing Capacity Building Institute (CBI) a joint initiative of Pennsylvania’s Office of Developmental Programs (ODP) and Office of Mental Health and Substance Abuse Services (OMHSAS). CBI offers an in-depth learning opportunity to professional stakeholders, across a diverse array of agencies (e.g., direct support providers, managed care organizations, residential treatment centers, state hospitals) with the goals of promoting best practices, while building a statewide cohort of individuals and systems better equipped to effect change. These goals are particularly important in the treatment of individuals who are dually diagnosed, as they are often subject to experiencing frequent transitions in treatment due to complex and fluctuating needs. The diversity of participating stakeholders in CBI shed light on how traditionally distinct service systems with separate funding sources and eligibility requirements can work in concert for the benefit of the member. The following case discussion highlights the use of ongoing evaluation and frequent coordination to support transitions and foster independence in the treatment of an adult man presenting with challenging medical and behavioral concerns.³ This description does not represent an actual individual. Rather, it reflects the collective clinical experiences of members of the Community Care workgroup and is intended to highlight the positive change available to all individuals when stakeholders work together.

Steven

Steven is a 45-year-old man diagnosed with impulse control disorder, and intellectual disability-severe. He presents with multiple medical conditions that require regular attention, and that have caused some to describe him as “delicate.” During an extensive history of treatment, Steven experienced multiple involuntary hospitalizations, due to difficulties in maintaining medical stability, and safety concerns related to aggression directed toward staff and self-injurious behaviors. The hospital was viewed as critical to helping Steven regain stability when in crisis, with extremely limited community options available to help fill this role. These hospitalizations underscored the concern carried by Steven’s parents, and fueled their advocacy for the establishment of better community options for people like Steven². Steven’s parents, now both in their late 70’s, are committed to Steven’s goal of being maintained in a community setting, with as much independence as he is able to develop.

When younger, Steven often experienced regression in medical and behavioral functioning due to several factors. Steven possesses a limited vocabulary, and his articulation makes him difficult to understand. Steven’s parents have worked regularly with providers to transfer their understanding of his speech. Steven has long had problems with poor sleep, with no obvious contribution from sensory or environmental factors. He is prone to leaving his bed and walking around the house at night, and lack of sleep contributes to dysregulation, including refusal to comply with his medical treatment.

Steven’s medical well-being is often seen as a driver of his behavioral functioning. He experiences frequent physical discomfort, and his medical needs have resulted in a significant medication regimen, and ongoing nursing assessment and assistance. Most of Steven’s medications are managed through his primary care physician, but he does also see a psychiatrist for the management of anxiety and mood, and a urologist to help manage persistent incontinence. The coordination of medical professionals is critical to his well-being, as he is prescribed medications for more than seven different conditions. Not surprisingly, in addition to his ongoing behavioral goals, Steven has goals related to adherence with his medical treatments. The most constant indicator of discomfort and predictor of behavioral regression has been Steven’s engagement in medical refusal behaviors, aggression, and self-injurious behaviors. When agitated, Steven attempts to pinch staff. He also scratches or pinches himself. A major point of coordination between Steven’s parents and his treatment team focused on helping team members better understand indicators of Steven’s discomfort, and to proactively use preferred activities to help distract from these sensations. Avoidance of the use of restraints in the treatment of individuals who are dually diagnosed is of paramount importance to protect their rights. In Steven’s case, restraints were further deemed inappropriate due to his physical fragility and risk of injury. Following a particularly dangerous episode, Steven’s treatment team sought and received a short-term prescription for Steven to wear extra-long sleeves to prevent pinching, and they began offering soft objects to occupy Steven’s hands temporarily. Use of these methods was also paired with several preferred activities, such as singing, watching videos, and walking with a staff member. Steven eventually began to seek out the soft objects, in part to signal his desire to engage with others. Steven’s progress in reducing hitting and pinching opened the opportunity for him to safely participate in activities through the ARC in his home county, and he built positive relationships with peers through shared walks and recreational activities.

An ongoing challenge in Steven’s treatment involved the inability of any one agency or provider to adequately accommodate Steven’s significant needs related to housing, communication, nursing, safety, and recreation. It should be noted that most of Steven’s early support came through his diagnosis of intellectual disability, which opened eligibility to specialized services through his home county and ODP. However, his parents were unaware of behavioral supports that might be available to Steven through Medicaid and his county HealthChoices program until this option was raised at a school coordination meeting. This discovery opened opportunities for Steven to receive case management, behavioral consultation, and staffing to implement positive behavioral strategies.

Efforts to help Steven transition to the community as an adult resulted in multiple rejections for placement. It was the shared commitment across multiple stakeholders that eventually opened opportunities for Steven slowly to transition out of his parents’ home, and to be maintained long-term in his community. The first step involved getting all stakeholders to the table together, with Steven’s interests as the central focus. In Steven’s case, stakeholders include Steven, his parents, a community supports coordinator, representation from ODP, and a Clinical Manager from Community Care. Weekly coordination meetings identify community resources available to Steven, engage in collective decision-making, and support natural and paid resources. In Steven’s case, the stakeholders regularly attending coordination meetings has grown to include multiple prescribers, consultants, and a dietician. Despite the benefits experienced through this coordinated effort, Steven’s placement continued to be characterized by crisis episodes leading to hospitalization, and occasional short-term respite stays at his parent’s home due to unforeseen challenges brought on by experiences such as staff turnover.

A significant change in Steven’s care followed the development of several community resources through the Behavioral Health Alliance of Rural Pennsylvania (BHARP). Specifically, Steven benefited greatly from the development and availability of the Dual Diagnosis Treatment Team (DDTT) model in 2014, which was the result of a workgroup focused on how to respond to unmet needs of dually diagnosed individuals. The workgroup included representatives from county Mental Health and Intellectual Disabilities departments, Community Care, ODP, OMHSAS, and psychologists with specialized knowledge of this population. The multidisciplinary treatment team developed in the DDTT model allows for medical and behavioral needs to be met in a community setting, in which independent living skills might be developed. Specifically, the DDTT treatment team includes a psychiatrist, Program Director, Behavioral Specialist, Nurse, Service Coordinators, and Pharmacy Consultant. For Steven, the integration of physical and behavioral health allowed for better avoidance of crises, and the ability to respond more quickly to acute needs.

Several years after development of DDTT, a partner model was created. Community Stabilization and Reintegration Unit (CSRU), a residential treatment facility for adults, is particularly helpful as a temporary step-up for individuals in crisis. Together, CSRU and DDTT function as a continuum of care for adult members, as members can easily go between both programs, which are meant to assist each other. Steven is representative of many individuals who have benefited from the existence of these programs. Data from Community Care’s records over the past two years indicate that DDTT has served more than 379 distinct individuals, ranging in age from 15 to 76 years, across dozens of counties in Pennsylvania. Similarly, CSRU has served more than 75 distinct individuals in that time, ranging in age from 15 to 70 years. Programs such as these, along with nearby availability of hospitals in the member’s community, serve as important safety nets in the transition to community placement.

One of the hallmarks in Steven’s treatment that should be observed in the treatment of individuals with similar needs, is the role of ongoing evaluation and coordination. When Steven first presented at his DDTT agency, he suffered from significant physical challenges. The treatment team recognized that Steven’s transition could not be viewed as routine or predictable. As a result, they brought in a medical consultant to conduct a thorough evaluation of Steven’s needs during the transition and beyond, which resulted in a change in dietary recommendations, temporary use of a visual board to aid in communication as staff learned to understand Steven’s speech, and a recommendation to increase tactile activities to maintain social interaction and reinforcement. Ongoing evaluation has allowed the treatment team to adapt to the changing nature of Steven’s needs, and expand team members as needed to meet Steven’s developmental, cognitive, emotional, behavioral, and medical needs in as comprehensive a manner as possible. It is fair to say that, without the excellent coordination between service systems, Steven’s ability to be maintained in a community might have been untenable. His case underscores how even complex challenges can be overcome to the benefit of service recipients when available stakeholders are committed to common goals and creative problem solving.

 

References

Biographies:

Brian Rabian is a Manager of Psychological Services and Professional Advisor for Community Care. Prior to joining Community Care, he was a faculty member at the Pennsylvania State University, University Park, and Director of the Penn State Psychological Clinic.

Contact Information

Brian Rabian, Ph.D.,

Community Care Behavioral Health Organization

rabianb@ccbh.com

Workgroup members from Community Care, who participated in the writing of this article include the following: Tiberiu Bodea, Duncan Bruce, Michael George, Jamie Pyo, Teri Stanley, RaeAnn Taylor and Jennifer Willier