The Need for Continuity of Care

As with any broadly disabling condition, the person coping with major mental illness often requires a wide scope of services. These include basic needs such as food, shelter, and clothing. Various types of treatment and rehabilitation are also required. Ideally, these services are delivered in an uninterrupted flow over time until the disability is corrected or compensated for. This concept of receiving all the services necessary for the length of time they are required is called continuity of care. The continuity of care issues for people experiencing severe and persistent mental illnesses are critically important and, because of the nature of the disability, often difficult to solve. Hospital environments had been designed to meet the basic needs of patients with serious mental illnesses. Major continuity of care problems first arose as individuals moved from the centralized, institutional environment of the psychiatric hospital to the decentralized, multiagency environment of the community. Some researchers believed that the continuity of care needs of individuals was an important hospital benefit that was inadvertently lost with the rush to dein-stitutionalize (Kirk & Therrien, 1975). The hospitals usually included medical staff, housekeeping staff, and recreation workers, all integrated within one large institution. In contrast, community services are usually provided by different agencies and programs that often communicate poorly with one another. Today, more than 30 years later, a similar situation exists. In most areas, individuals' needs are addressed by several poorly coordinated services (President's New Freedom Commission, 2003).

On returning to the community, a typical consumer might find herself attending a partial care program or clubhouse during the day, receiving her medication from a private physician, and living in a private boarding home. Previously, within one organization, the hospital staff orchestrated even the smallest details of her life. In the community, she now has to deal with three or more separate organizations. In the hospital, her modest economic needs for food, clothing, and shelter were met. Outside the hospital, she has concerns about maintaining her income through disability or welfare payments. In addition, she now needs medical benefits, from Medicaid or a similar program, in order to pay for her physician, medication, and treatment services. Worse still, if she failed in any of these community settings she might find herself on the street, out of medication, or back in the hospital. In one sense, at the very moment she is trying to reestablish herself in the community, her opportunities for failure have been multiplied. Furthermore, the potential sources of stress in her life, which might aggravate her illness, have greatly increased. Paradoxically, improvements in her life might prove to be equally troublesome. A large reduction in symptoms or obtaining regular employment might make her ineligible for her disability benefits and perhaps medical coverage. A number of recent improvements in this area are reviewed in Chapter 9, but these concerns still persist.

In the early years of deinstitutionalization, the service delivery systems available in the community for released individuals were new and often uncoordinated. With several agencies or programs responsible for different aspects of an individual's treatment, a systemic kind of "diffusion of responsibility" problem arose. Diffusion of responsibility refers to a situation in which shared responsibility for an issue or problems allows each of the responsible parties to assume that another party will take care of it with the result that no one takes care of the situation (Daley & Latane, 1968). This social psychological phenomenon can be observed in large cities where bystanders have been known to literally step over someone lying on the sidewalk, or when drivers pass a broken down car by the side of the road, assuming that someone else has already called for help. In the context of community services for persons with severe and persistent mental illness, while every service or program had some degree of responsibility for some aspect of an individual's treatment and care, no one was responsible for the whole person. Staff at one agency would assume some other agency or person should be taking care of issues that his or her own agency was not designed or funded to deal with. This increased jeopardy created a situation by which consumers were said to "fall through the cracks" of the service delivery system. These consumers would often return to the hospital, end up living on the streets, or become homebound recluses.

In addition to the difficulty of connecting with needed community services, the newly discharged people often found that certain services simply did not exist (Test, 1979). Partly because of a lack of affordable housing, in many areas individuals were given bus tickets and literally discharged into the streets. Vocational programs were also in very short supply during the early stages of the deinstitutionalization process. In these situations continuity of care could not be achieved because of a lack of available services.

To appreciate the vast scope of this problem, we must multiply the plight of each individual consumer by the hundreds of thousands of deinstitutionalized individuals. The increased stress associated with dealing with a complex, often disorganized and unconnected treatment delivery system contributed to the high rates of recidivism experienced by the deinstitutionalized population.

In recent years substantial progress has been made in the development of community-based supports and services for people with psychiatric disabilities, yet many of the challenges faced by people discharged from institutions in the 1970s still exist for people being discharged today. There are still major gaps in the service systems, many of which remain poorly coordinated, and recidivism rates are still too high.

The risk of rehospitalization is highest during the first 6 months after a person is discharged from the hospital. People are hospitalized during the acute phase of their illness and this instability may extend past their discharge. The obvious stress related to psychiatric relapse or decompensation, and then the return to the community may also add to high rates of recidivism in the 6 months following discharge.

Probably the most important single cause of recidivism is failure to connect with needed services and supports in the community. Everyone is aware of the difficulties and

BOX 7.1

An Innovation in Psychiatric Rehabilitation

Just as with other fields, many of the innovations in psychiatric rehabilitation have emerged from seemingly casual observations and the initiatives of regular staff members "doing what comes naturally." The following description of the "discovery" of what would emerge as the assertive community treatment model, describes such an event.

About the fall of 1970, soon after Dr. Arnold Marx had assumed leadership of the Special Treatment Unit (a research unit of the Mendota Mental Health Institute), and after Mary Ann Test had been at the STU for two of what had become rather standard six-month-long studies, a critical event happened at the traditional staff party held to celebrate the end of each study and to generate ideas about what type of study to do next. Few staff came. Those present pulled their chairs into a circle and began to discuss why others did not show up. Some staff did not come, it was observed, because their morale was low. They were discouraged because, despite their energetic efforts to create innovative inpatient treatments enabling discharge (Mendota is a Wisconsin state psychiatric hospital) recently discharged patients kept coming back to the hospital. Some aides suggested that they would not do another similar study.

In this discussion, one aide observed that when a social worker, Barb, followed patients into the community and provided aftercare, these patients tended not to come back to the hospital. As the evening wore on, they talked about how Barb did this. Someone suggested that the STU should do what Barb did and abandon the inpatient interventions. Eventually, it was agreed that this is what they would do, and the STU leadership, Drs. Marx and Test, stuck to this decision in the morning and thereafter. The next STU study was to be one about caring for persons with severe mental illness in the community. (Greenley, 1995, pp. 9-10)

frustrations involved in dealing with large, impersonal bureaucratic systems. The newly discharged consumer often has to connect with new agencies, doctors, and staff persons. They have to make these connections at the very time when they may be least likely to cope with the frustrations and stress that we all experience when dealing with large organizations or new situations. It is little wonder that persons often become ill during the months directly after discharge.

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