RECOVERY
By
Edward L. Knight, Ph.D.

Presented at: Alexander MJ, Knight E, Robins C, Bush B, Onken S and Hopper K (discussant). Factors that promote recovery: A holistic approach to service systems change. 13^th Annual Conference on State Mental Health Agency Services Research, Program Evaluation and Policy, sponsored by the National Association of State Mental Health Program Directors, Baltimore MD, Feb. 11, 2003

According to Pat Deegan, a psychologist with schizophrenia, recovery from serious mental illness is defined as “Rediscovering meaning and purpose after a series of catastrophic events which mental illness is.” When someone becomes mentally ill, he loses not only sanity (albeit temporarily for most people), but also position in society, income, friends and, in many cases, family and possessions. A person receiving a diagnosis of schizophrenia looses hope and enters a state of anguish caused by an experience of meaninglessness, hopelessness and helplessness. Much of this hopelessness is not due to the disease but to the mental health systems designed to treat it. Mental health systems are set up for maintenance and usually communicate that life is without hope of significant accomplishment once serious mental illness has set in. Yet, experience shows that recovery from mental illness is possible. Experience teaches that with expectations of recovery and proper support, people can regain their lives and their independence.

Recovery theories are grounded in longitudinal studies of schizophrenia. According to Nancy Andreasen, MD, schizophrenia is probably the cruelest and most devastating of all the persistent mental illnesses. It, therefore, serves as a touchstone for recovery based models of treatment.

Two of the studies on which the recovery model is based were done by Courtney Harding, PhD. Dr. Harding’s definition of recovery has four criteria:

• having a social life indistinguishable from your neighbor
• holding a job for pay or volunteering
• being symptom free, and
• being off medication.
  
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Dr. Harding’s data in a recovery oriented system in Vermont point to recovery or significant improvement in 62% to 68% of people studied. Dr. Harding’s data are all the more powerful because she was studying the bottom 19% in the functional hierarchy in a large state hospital. Some of the people in her study had regressed to speaking in animal like sounds. Most had been in the institution for 10 or so years, many had been in and out repeatedly. The cohort is the least functional ever studied in world literature on schizophrenia. Nevertheless, of this bottom 19%, 62% to 68% fully recovered or significantly improved. Half of the cohort of 62% fully recovered meeting all four of Dr. Harding’s recovery criteria and half met three out of four criteria, usually continuing to take medications while meeting the other criteria.

In a companion study to her Vermont study, Dr. Harding studied a system in Maine oriented to maintenance instead of recovery . Patients were considered incapable of accomplishing anything like holding jobs or volunteering. They were expected to be in and out of the hospital for the rest of their lives and basically live as totally disabled. In this system, in spite of the adverse expectations, people recovered or significantly improved at a rate of 47%. Vermont’s 62% to 68% recovery rate was significantly better. Those who had been studied in Vermont were significantly more likely to have lower symptoms and to work or volunteer. This points to the healing effects of meaningful activity, which the individual chooses to pursue.

There are six other studies of a longitudinal nature, all over 20 years in length and demonstrating similar recovery rates. Recovery percentages are based on criteria similar to Dr. Harding’s definition, cited above, except for the Iowa study, which added marriage as a criterion of recovery. The studies are summarized in Table 1 below.

Table 1: Longitudinal Studies of Recovery from Schizophrenia
*For schizophrenia subsamples

Dr. Harding’s data speak to the much-debated question of whether recovery from mental illness is an end state or a process. For those who live without medications, recovery is an end state. For the majority, recovery is a life long process of coping and pursuing meaning while taking medications. Many people try repeatedly to come off medications and find that their condition worsens when they do. Because it is extremely painful to go into psychosis, it is not advisable for most people to go off medications. Nevertheless, in spite of some symptoms and in spite of taking medications, many have regained meaning and purpose after the catastrophic events of mental illness. By this definition, many consider themselves recovered or in a process of recovery.

The recovery model has some well-defined elements. The system that encourages recovery is based first and foremost on the expectation of recovery. It includes helping the individual choose a meaningful goal in life, and providing appropriate social and therapeutic supports, especially by teaching goal-specific skills, to help the individual move toward self-sufficiency.

An essential element is helping people set goals for themselves. In the recovery process people research the feasibility of their goals and then explore what skills and supports they need to get and keep the goals the choose to pursue. This is the basic process of psychiatric rehabilitation. It is particularly important to people who became ill at a young age and did not go through a process of getting emancipated from home, learning to find apartments or jobs, etc. It is also helpful in overcoming the “de-skilling” effects of institutionalization. Even short periods of institutionalization, including many “community” placements, which are congregate in nature or “maintenance” in nature, lead to loss of skills and goals.

In addition to individual goal setting and skills improvement, mutual support is an important element in the recovery process. Mutual support works by enhancing self-efficacy. In self-help groups that do not include professionals, it becomes clear to individuals that they can be successful in doing something new even in the face of stress. This is the definition of self-efficacy. Mutual support is a life laboratory where consumers can test new skills in a safe environment. Professional presence in these groups would destroy the need for self-reliance and would continue dependence. Scientific data supports this notion. In four efficacy studies, adding mutual support groups to traditional treatment significantly reduced hospitalization.

In another efficacy study for persons dually diagnosed with serious mental illness and substance abuse, Double Trouble in Recovery, a 12 step group run completely by those who are dually diagnosed, significantly reduced substance abuse, mental illness symptoms and crises.

Research has shown that self-help groups also work because they provide a social network based on commonly shared experiences. Self-help facilitates moving people out of the role of being helped to the role of being helpers. In self-help groups people share specific ways of coping based on experience. Those who cope successfully serve as role models for individuals with less successful coping strategies. Finally, self-help groups provide self-generated meaningful structure. If such structure were imposed, it would be resisted.

The recovery model has been extensively used and tested in Colorado. In an effectiveness study using a random draw from all Medicaid mental health clients, training of professionals in the Boston University psychiatric rehabilitation technology and consumers in self-help group methods resulted in significantly reduced hospitalization, substance abuse and suicide, and significantly increased daily activity and social contact for consumers. All of this occurred while the ratio of persons with serious mental illness to persons with adjustment disorders was increasing, i.e., persons with severe symptoms were increasingly coming into the system.

One site in particular has pushed the recovery model further than others. This site is Southeast Mental Health Services located in LaJunta, Colorado. Until mid-2000, this community mental health center operated on the traditional model, which included group residences, day treatment of six hours a day five days a week, Assertive Community Treatment (ACT) teams and once a week counseling. It was a model strongly held within the milieu. In mid-year 2000, the center switched from a traditional model to a recovery model.

When the decision was made by the executive management to train the staff in psychiatric rehabilitation, the treatment staff moved to individualized goal setting and skills teaching. The group homes were shut down and replaced by individual housing. Five or six consumers were placed intentionally in the same normal apartment complexes, which allowed them to form informal support groups. The ACT teams withered because people were doing so well that the teams were no longer needed. Outpatient commitment orders were successfully dropped on all consumers except those with criminal holds. After outpatient commitment orders were dropped, staff observed a spontaneous maturation process in consumers as consumers shed the infantile expectations that someone will be taking care of them full-time.

About 30% of the most disabled at Southeast have home health care aides managed by a mental health worker who trains the aides in the individualized symptoms of each person they deal with. Home health aides are expected to help support the consumer and to tell the case manager if the consumer’s condition worsens. Depending on the nature of the change in the condition, there are many available options. The first choice is increased support with the availability of a consumer hostel. Consumers can take responsibility for their own well-being. The consumer hostel, staffed by professionals, is a place where people may voluntarily go at any time of day or night for support without having to reach a predetermined threshold of dangerousness or distress. Therapy is by individual choice on the problems of choice with the counselor of choice for a length of time chosen by the individual. In this model, designed for people with serious mental illness, 38% of participants in the program are working, volunteering or going to school. On a five-point scale of overall functionality, as measured by the Colorado Client Assessment Record, scores have gone up a full point from below average functioning to average functioning. In addition to improving functional outcomes, this model also reversed a 22% cash flow deficit at the health center. Cost saving were shifted to providing better services.

This is the potential of the recovery model. We believe that this model can be replicated elsewhere, as long as funding is provided to train professionals in working in the new model and to continue appropriate therapeutic and social supports.

1. Deegan. P.E. (1988) Recovery: Lived Experience of Rehabilitation, Psychosocial Rehabilitation Journal, 11(4), 11-19.
2. Andreasen, N.C., Brave New Brain, Oxford University Press, 2001, p. 193.
3. Harding. C. The Vermont Longitudinal Study of Persons with Mental Illness I, American Journal of Psychiatry, 144, 718-726 and Harding C. The Vermont Study of Persons with Mental Illness II, American Journal of Psychiatry, 144, 727-735.
4. DeSisto, M. The Maine and Vermont Three-Decade Studies of Serious Mental Illness, British Journal of Psychiatry (1995, 167, 331-342.
6. Personal communication from Dr. Harding. Used with permission.
7. Turkelson, K.: A Dialogue Between Psychiatrists and Recipients (videotape). New York, New York State Office of Mental Health, 1993.
8. Edmonson, E.D. Integrating Skill Building and Peer Support in Mental Health Treatment: The Early Intervention and Community Network Development Projects. Community Mental Health and Behavioral Ecology. A.M. Jeger and R.S. Slotnick. New York: Plenum Press, 1982: 127; Galanter, M. Zealous Self-Help Groups as Adjunts to Psychiatric Treatment: A Study of Recovery, Inc., American Journal of Psychiatry, 1988,: 145 (10) : 1248-1253; Kennedy, M. Psychiatric Hospitalization of GROWers. Paper presented at the Second Biennial Conference on Community Research and Action, East Lansing, Michigan 1990; Kurtz, L.F. Mutual Aid for Affective Disorders: The Manic Depressive and Depressive Association. American Journal of Orthopsychiatry, 1988, 58(1): 152-155.
9. Magura, S. etal Medication Adherence and Participation in Self-Help Groups for Dually-Diagnosed Persons, accepted for publication in Psychiatric Services, in press.
10.Carpinello, SE and Knight, EL A Qualitative Study of the Perceptions of the Meaning of Self-help, self-help group processes and outcomes by self-help group leaders , members and significant others. Bureau of Evaluation and Service Research, New York State Office of Mental Health, 44 Holland Ave., Albany, NY, 12229, OMH contract #C0002529.
11. Forquer, S. and Knight E. Psychiatric Services January 2001, Vol 52, NO1,pp25-26.
12. ACT teams are teams of mental health professionals focusing generally on maintenance, with case workers directed by a psychiatrist and nurse whose main aim is delivery at the sites where the consumer is located.

Supported in part by
The Center for the Study of Issues in Public Mental Health:
NIMH Grant: 2P50MH51359
and by