The post below comes from Russell K. Schutt, co-author with Stephen M. Goldfinger of the recently published Homelessness, Housing, and Mental Illness.
A recent New York Times article examined the tragic and brutal murder of the group home counselor Stephanie Moulton by Deshawn James Chappell, a group home resident diagnosed with schizophrenia. The circumstances of the murder force our attention to two questions: What is schizophrenia? And what are the prospects for community integration of persons with schizophrenia? We need look no further than the comments elicited by the NYT article to realize the extent of controversy about these questions. But what does scientific research actually show about these issues?
Schizophrenia is a serious mental illness, the causes of which are not yet well understood. It afflicts about 1% of the population, typically emerging in late adolescence or early adulthood. Neuroimaging and functional testing identify diminished brain volume in key areas and declining cognitive and social functioning at the time that symptoms of the disease emerge. After onset, the symptoms persist, although their intensity fluctuates and some long-term research has identified patients in whom symptoms have dissipated many years after onset. Psychotropic drugs relieve symptoms such as hallucinations and paranoid delusions for some patients, but they have no effect on cognitive or social functioning.
Debates over the prospects for community integration of persons with schizophrenia have framed mental health service policies since the 19th century. The first state psychiatric hospitals were designed to provide a protected, humane environment for persons with serious mental illness. Without much quality evidence, state hospital superintendents in the 19th century issued glowing reports about patient improvement. Even still, the hospitals were soon overwhelmed by a rapidly increasing patient census, inadequate resources, and a shift in professional psychiatrists’ focus to private patients. Exposés in the 20th century suggested that the environment of state hospitals was more likely to exacerbate patients’ symptoms and diminish their prospects for return to the community than to restore their health.
The proponents of deinstitutionalization sought to end the warehousing of persons with serious mental illness and to instead provide community-based care that would normalize treatment services and facilitate community engagement. They were motivated as well by the discovery of psychotropic medications that lessened symptoms; state governments’ desire to shift costs to Medicaid-reimbursable community-based care; and the growing demands of advocacy groups for patients’ right to make their own treatment decisions.
Whatever the precise mixture of commendable and crass motives, the goals of deinstitutionalization were only partially achieved. State hospitals were indeed depopulated, but alternative community-based care was only partially funded and psychotropic medications proved to be only partially effective. In addition, rising housing costs and the widespread destruction of cheap single room occupancy hotels made it impossible for many persons with serious mental illness to maintain any type of community residence. The large number of people with serious mental illnesses who became homeless or were incarcerated indicates the failures of this new service system.
So there has been good reason to reexamine the goal of community integration and the means used to achieve it. In Massachusetts, as in many other states, this reexamination together with new budgetary pressures resulted in a decision to carry the process of deinstitutionalization even further. This has entailed encouraging homeless persons with serious mental illness to move into independent apartments, rather than service-oriented group homes, and reducing staffing in group homes or eliminating them entirely. The stated goal has been to further the process of community integration by treating persons with serious mental illness like other consumers who function on their own and make their own decisions.
The murder of Stephanie Moulton highlights this new strategy’s potential for tragic consequences. Of course this is only one case, but there have been others. There is also much stronger evidence that points in the same direction: the Boston McKinney Project, for which I was one of a team of investigators and about which I wrote Homelessness, Housing, and Mental Illness with Stephen M. Goldfinger, MD.
The National Institute of Mental Health and HUD funded the Boston McKinney Project in 1990 to support a test of how far we could push the process of deinstitutionalization. We used a randomized design to determine how best to house this compromised population: participants were assigned either to group homes or to independent apartments, after we measured their housing preferences and allowed clinicians to make housing recommendations. Those placed in group homes spent fewer days homeless and gained more cognitive functioning than those living independently. Group home staff helped residents develop their capacities, build positive social ties, and control substance abuse; when staffing was reduced, problems increased. We also found that clinicians’ evaluations of participants’ ability to live independently tended to be correct, while participants’ assessments of their own ability to do so were far from the mark. Participants with the strongest preference to live independently were in fact least capable of doing so.
These results suggest that providing only minimal staffing in group homes and pushing group home residents into independent living decreases the likelihood of success and increases the risk to residents and staff. Well-managed group homes enable motivated staff like Ms. Moulton to help residents become more independent, while helping chronically ill persons to build more hopeful futures.
Why is it difficult to translate these findings into more effective housing policies? Several avoidable roadblocks impede progress:
- Cost: It is much cheaper to house clients in independent apartments than in group homes with staff.
- Inadequate understanding of serious mental illness: Some mistakenly believe that normalizing the living circumstances of persons with schizophrenia by placing them in independent apartments will in turn result in normal functioning.
- Misplaced treatment focus: There is growing recognition of the importance of meaningful social ties for human well-being, but this necessary dimension of treatment is often neglected in favor of the individually-centered approaches of medication and therapy.
- Overemphasis on patient desires: The understandable value placed on individual autonomy and patient rights encourages housing placement that accords with what most patients want—independent living—rather than with a more gradual approach to community integration, which our study shows to be more effective.
- Shortage of scientific evidence: The Boston McKinney Project is the only study that has tested independent and group housing alternatives using a scientifically sound randomized design. It is important to replicate and extend our research so that others can have more confidence in our findings.
The Boston McKinney Project required a unique interagency collaboration between NIMH and HUD, as well as a total of $13.1 million in funding. Such collaboration and funding has rarely been available from government sources. Yet Stephanie Moulton's murder reminds us that the ultimate costs of ineffective service policies are very high indeed. Service staff, service consumers, their families, and the general public should not have to wait longer for a more effective approach to achieve the goal of community integration.