Volume 18, No. 2 • June
1997
— by Courtenay Harding
OUTCOME
The Maine-Vermont Comparison Study, which was recently published in the British Journal of Psychiatry (DeSisto et al. 1995 a and b), was the first long-term project with matched samples, protocols, diagnostic criteria, and catchment areas where one group received a comprehensive model demonstration rehabilitation program and the other did not. The work histories of both samples were the same before hospitalization and yet the findings were significantly better for the rehabilitated group after hospitalization in work, reduced symptoms, and overall levels of functioning. These findings held strongly even after many analyses covaried out the effects of unmatched factors, such as education, urban/rural residence.
We also learned that the decisions and policies made at the top layers of the mental health system sift down to the patient layer and affect those outcomes. Vermont had self-sufficiency, rehabilitation, and community integration as its goals while Maine had maintenance, stabilization with medications, and entitlements as its goals. These findings held true for the most profoundly disabled patients with serious and persistent mental illnesses. In fact, the Vermont cohort has been considered to be a study of the most chronic and disabled group and thus their findings should be the most conservative.
There was wide heterogeneity of outcome for this cohort (Harding et al 1987 b and c). We had a group which was working and relating well, with no symptoms or medications. This group, we labelled as "recovered" people. There was another group that was widely heterogeneous within itself. Some subjects were working and relating well but still had residual hallucinations or delusions. They had learned to manage these symptoms and not to tell anyone about them anymore. Being symptomatic and yet being able to work was strongly supported by the work of Strauss and Carpenter (1974), who found in their Washington sample of the IPSS (WHO, 1973) that previous work best predicted current work, that social skills best predicted social skills, and that symptoms or hospitalization did not predict much at all. They formulated that these factors were "open-linked systems" and only loosely related.
Another type of client found in the Vermont study were people who were working, asymptomatic, in the community, but had few or no friends. Yet another group related well to family and friends, lived in the community, and appeared able to work. When asked why they were not, the general reply was, "Well, I had one last episode of psychosis when the community mental health centers were up and running, and they gave me medications and entitlements. Entitle-ments had so many disincentives to go back to work that I did not." Estroff et al (1996) wrote that 1/2 of 1 percent of patients ever get off SSI/SSDI entitlements once they get on, and that being put on these entitlements is of substantial import to the client's sense of self and impacts directly on the options of the outcome. These systems are beginning to change with increased flexibility, but all too slowly. A recent study conducted in Colorado by a large metropolitan community mental health center showed that, within its 4 teams treating the most seriously and persistently ill clients, 41% had a prior work history, skill, or profession, but only 5% were employed full time.
In the unrecovered group, we also found a group of single middle-aged men sitting in rocking chairs on the front porches of board and care homes. When asked why they were not working, a typical reply was, "Well, my family gave up on me; so I gave up on me." Demoralization appeared to be at work in these instances (Harding et al, 1987c).
One of the many myths about schizophrenia (Harding and Zahniser, 1995) is that clients can only work at low level jobs for short periods of time and that only 15% or less have been able to do so in competitive employment (Anthony et al, 1992, p. 44). Yet, the Vermont study had about 40% working at all times throughout the follow-up period with an additional 20% in volunteer work, making 60% of the cohort productive citizens (Harding et al, 1987b). In addition, I had the pleasure of reporting this study for National Public Radio's program called "Morning Edition" (1987). I received many calls thereafter from professionals throughout the U.S., Canada, and even Panama. These callers identified themselves as physicians, nurses, lawyers, engineers, and high school teachers. They uniformly said, "I once had schizophrenia, but I don't tell anyone about this event because of the stigma. Thanks for telling my story." Such people may have been in the lucky group that has had only one episode early in their careers, may have been misdiagnosed, or simply persistent. They also may have had some educational opportunities and come from being in the Hollingshead I, II, or III social classes instead of IV and V with their attendant poverty and lack of opportunities making them triply disenfranchised people (Hollingshead and Redlich, 1958). However, what then explains the success of Patricia Deegan (1988) who become a highly respected and eloquent PhD psychologist after a very chronic and painful career as a seriously ill mental patient or Marcia Lovejoy (1982), who ran high profile mental health programs after a 20-year stint labeled with chronic paranoid schizophrenia and was headed for maximum security? How many of these stories do we have to hear before we pay attention to the possibilities?
PROGRAMMING
After conducting two long-term studies and assisting with a short, 3-year project, we propose that there may be differential effects of rehabilitation depending upon the timing in the client's particular course trajectory (Harding and Keller, in press). Schizophrenia is a disorder in which a person generally has more than one episode. He or she generally has an early virulent incapacitating group of episodes that generally taper off with the aging process (Harding, 1991; Harding et al, 1987c). If you provide rehabilitation in the early stages, you most likely reduce symptoms and dysfunction. If a program provides rehabilitation in the later stages, it may increase function and promote adult development. We also learned that work is treatment if there is a good match between the person and the environmental demands, symptoms can be reduced and any strategy that reduces symptoms is treatment. Stable affordable housing can reduce symptoms and is therefore treatment as well.
Len Stein tells a story of a patient from Mendota State Hospital in Wisconsin who had walked the tunnels of the hospital for about 30 years before he was deinstitutionalized. This patient kept getting arrested by the police in Madison because he persisted in breaking the law by walking down in the sewers. Finally someone had the bright idea to hire the man to change light bulbs in the sewers. He was happy, the town was happy, and all was well.
From our work in New Haven, Connecticut, another story focuses on a woman in a sheltered workshop. She had a very spotty attendance record even though she could earn a little money for herself. Later, we found that she always attended a volunteer job teaching art at a senior citizen's housing development. The client had been an art major in college. One situation was a match and one was not. Another story comes from the Mass Rehabilitation Association (Personal communication, T. McCarthy, Boston, May 27, 1987). The Commission was shaking its head about a fellow who had been working one of their sheltered workshops for a year. The staff was worried that he seemed not to be able to do very well and concerned about his small motor dexterity. Finally, someone on the staff asked where the client disappeared to on Wednesday afternoons. He replied that he was playing in a string quartet down the street!
These stories persist across states. We have very important lessons to learn. Clients are often significantly underestimated and put into a sheltered workshop. Further, a match of client to job is considered not as important as just getting a job. A generic fast solution provides little success. We often give fragile patients, who are highly responsive to stress, entry level jobs in highly stressful places such as fast food chains and then wonder why they didn't make it! These situations are considered their failure not ours and confirm our own short-sightedness.
Further, McCrory (1980) has suggested that we often unwittingly squelch normal adult development when clients come to us as soon as they are a little bit stabilized in a hard won victory over major mental illness symptoms. He states that we tend to be afraid to rock the boat and say to the patient who asks if he or she can return to school or to a job or to move out of the parent's house or ask a person out on a date, "Oh no, we just got you stabilized and those are very stressful things to do ... Please wait!" He counterproposes that we, as clinicians, say, "Okay, let's figure out ways to reduce the stress while you are doing this," and he proposes increased visits, role play, practice, supports, etc. He calls these strategies, creative and productive ways to meet the challenge of the "rehabilitation crisis."
The subjects from the Vermont Longitudinal Research Project (Harding et al, 1987b) also found that being a productive citizen was on their top ten list for factors that helped these once profoundly ill people significantly improve or recover. These clients were given a comprehensive assessment and evaluation by a clinically savvy DVR counselor, asked about previous skills, interests, and job history, current interests, given specific training, help with job seeking, finding, and keeping matched to their interests, and employer/client education and support. These patients all had jobs during the major recession period when other people were looking for jobs.
The Yale Longitudinal Study run by John Strauss (Strauss et al, 1985) followed patients during their inpatient stays in the hospital and out the door for the next three years with repeated structured interviews across that period. These subjects taught us that the structure in some work settings helped their disorganized brains become more organized except that, after a while, the same structure was too organized for a now reorganized brain and exerted the opposite effect.... that of being psychotogenic! Their feedback made it very clear that re-evaluation for the client-job match needs to be an ongoing strategy. We also found that there were identifiable phases in the course of recovering from psychotic episodes (Strauss et al, 1985); we discovered that patients played a very active role in these processes (Strauss et al, 1987); we saw that they used social relationships differentially depending on the phase of recovery (Breier and Strauss, 1984); we learned that patients could and did learn to control their own psychotic mechanisms (Breier and Strauss, 1983). All of these discoveries affect how we perceive clients and their capacities to work.
INSTRUMENTATION/METHODOLOGY
Given the recent work from Michael Green at UCLA (1996) researching the degree and types of cognitive dysfunction, I believe it is crucial to add this type of information to the factors involving research on vocational rehabilitation. Data show that the notion of "once a broken brain... always a broken brain" may be true for only a small portion of the schizophrenia population. Therefore, it behooves us to periodically remeasure cognitive dysfunction as a dynamic and changing process across time. It also is apparent that we should be thinking in terms of cognitive retraining as a first line strategy in the rehabilitation of such patients to maximize their vocational capacities.
As a leader of a Work Support Group for SMD patients returning to the competitive work force, I learned directly from the horse's mouth that a nice, "tidy-looking," repeated measures protocol at 1 month, 6 months, 1 year, etc., was considered practically useless by our clients. They proposed that if we "really wanted to learn" about the impact of work on symptoms, that we should look at trying event-based strategies — such as when they had been on the job for 6 weeks and all their usual supports dropped away by Vocational Rehabilitation Services, or during the holidays, such as Christmas. These were the stressful times!
In the Yale Study mentioned earlier, we found that the degree of structure, self esteem, social supports, environmental conditions, meaning system about work, patient-illness-environment match, (and, I would add, place in course trajectory), need to be measured as well as the usual variables if we truly want to understand these complex processes that define success or failure at work for that time period.
In addition, Holstein and Harding (1992) have suggested that measurement of work roles for women especially is woefully inadequate to reflect the multiple roles they play. By only measuring one role, we miss the stressful complications arising from many roles (such as home and child care as well as work). Other considerations include such factors as the double messages given by society about work and child care, which add to conflictual situations and increase stress. The females in the Yale study were rated twice as functional and twice as symptomatic! Without the understanding of the additional stressors, erroneous conclusions might be made.
ISSUES
System Interface
In the mid-1980s, we (Harding et al, 1987c), conducted an extensive study of all the principal players in the New Haven catchment area, looking at the degree of interaction between the mental health and vocational rehabilitation systems. We interviewed clients, families, frontline clinicians/counselors, administrators, and employers. We reported the following findings at the interface were: "rigidity, isolation, compensatory ad hoc operations, and narrow frames of reference..." Vocational and other forms of rehabilitation were accomplished by persistent, energetic personnel, inventing ingenious solutions to the roadblocks set up at system interfaces. Their problem-solving techniques pointed to ingredients that might help to integrate treatment and rehabilitation efforts. These key elements were flexibility, collaboration, data-based training, and a unified theoretical framework." p. 317). Further discussion may be found in Strauss et al (1988) from a conference report at the NIMH, which described 9 models and their influence upon treatment programming, research, and policy-building in the field.
The Forgotten Promise
There are pockets of excellence scattered all over the world, such as the programs in Trieste, Italy (Rotelli et al, 1991), Madison, Wisconsin (Test, 1992), the BU Supported Education Program, or the BU "Choose, Get, Keep" model (Anthony et al, 1992). However, I would propose that most community mental health centers have become just as sturdy institutions as the old state hospitals were. The CMHCs in the U.S. have chosen the medication management and entitlement model of care because "that's what the Fed's pay for." Stabilization and maintenance are the goals. Such strategies promote and extend chronicity.
We now have worldwide data that show that, given half a chance, patients can be rehabilitated, become self-sufficient, and integrated into the community. They become taxpayers instead of tax drains. Given these data, the era of managed care, and the fact that many new patients will need to be treated in the future, is it not time to complete treatment and maximize for these clients what they can recoup through rehabilitation, self-sufficiency, and community integration? Is it not time to stop standing in their way and help a little?
Abstracted from a presentation at the Boston University Research Colloquium, Brookline, MA, April 17, 1996.
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