Submitted by frese on Tue, 07/12/2005 – 04:28.
Frederick J. Frese, III, Ph.D.
Jonathan Stanley, J.D.
Kenneth Kress, J.D., Ph.D.
Suzanne Vogel-Scibilia, M.D.

Dr. Frese is Assistant Professor of Psychology in Clinical Psychiatry at Northeastern Ohio Universities College of Medicine. Dr. Stanley is Assistant Director of the Treatment Advocacy Center in Arlington, VA. Dr. Kress is a professor at the University of Iowa College of Law. All three authors are active as consumer/advocates. Send correspondence to Dr. Frese at Recovery Project, c/o ADM Board, 100 W. Cedar St., Suite 300, Akron, OH 44307.

ABSTRACT

Consumer advocacy has emerged as an important factor in mental health policy during the last few decades. Winning consumer support for evidence-based practices (EBP) requires recognition that consumers’ desires for and needs for types of treatments and services vary significantly. The authors suggest that the degree of consumer-advocate support for EBP is largely a measure a function of the degree of disability of those for whom they are advocating. Those focusing on the needs of the most seriously disabled consumers, such as the National Alliance for the Mentally Ill (NAMI), are most likely to be highly supportive of research grounded in EBP. On the other hand, advocates focusing more on the needs of consumers who are further along their road to recovery are more attracted to the philosophy of the recovery model. Garnering the support of this latter group entails making efforts to ensure that as consumers recover, they are given the increasing autonomy and greater input concerning the types of treatments and services they receive. The authors suggest ways to integrate EBP with the recovery model, in order to suggest a hybrid theory that maximizes the virtues and minimizes the weaknesses of each.

Shortly after the National Institute for Mental Health was returned to the National Institutes of Health in 1989, President George H. W. Bush declared the “Decade of the Brain”. Federal funding for research on the brain was greatly increased during this time, resulting remarkable scientific progress (1). The decade of the 1990’s advanced not only in our understanding of the working of the human brain, but also our approaches to the treatment of the mental illnesses caused by brain abnormalities. During the past decade confidence in scientific research, with its objective observations and measures, has risen considerably in the mental health arena.
Evidence-Based Practices (EBP)
In recent years, this increased confidence in scientific treatment methods for mental illnesses has given rise to a movement calling for greater adoption of treatment approaches that are more scientifically grounded. This movement has been developing under the rubric, “evidence-based practices” (2,3,4,5,6,7). Under this concept, the call for more reliance on scientific evidence is being extended to treatment approaches supported by psychological and sociological evidence, as well as the findings of biological research.

In an earlier article on EBP, Drake et al. (3) gave an overview of the topic, outlining the movement’s research findings and philosophical underpinnings. The authors spelled out specific reasons for this journal’s special highlighting of EBP interventions. These reasons included the authors’ belief that routine mental health programs do not provide EBP; that services that resembling EBP may lack fidelity to EBP procedures in implementation; and that especially given limited resources, consumers have a right to interventions that are known to be effective. So described, EBP appears unassailable. Who could object to promoting treatments that work, rather than those that do not?

These authors also explicitly delineated a core set of interventions. These were, 1.) medications prescribed within specific parameters; 2.) training in illness self-management; 3.) assertive community treatment; 4.) family psychoeducation; 5.) supported employment; and 6.) integrated treatment for co-occurring substance use disorders. Their article stresses that “mental health services for persons with severe mental illness should reflect the goals of consumers (3 p.180)”. They further stated that “mental health services should not focus exclusively on traditional outcomes such as compliance with treatment and relapse or rehospitalization prevention, but should be broadened to include helping people to attain such consumer-oriented outcomes as: independence, employment, satisfying relationships, and good quality of life” (p.180). Finally they allowed that EBP “do not provide the answers for all persons with mental illness, all outcomes, or all settings”(3 p.180).

In light of this characterization of EBP, particularly the openness to consumer needs and aspirations, one might expect that the consumer advocacy community would be pleased that views of consumers are emerging as a major matter of interest. This move beyond traditional, provider-centric, factors, would seem to be a healthy, consumer-friendly development. In consumer advocacy circles, “Nothing about us without us,” has been increasingly adopted as a slogan to express the desire for more dignity and autonomous control for the recipients of mental health services (8). This reaching out for consumer input should be a welcome development.

The Recovery Model

At the same time, however, that the scientific research driven, Decade of the Brain and EBP initiatives have been emerging in the mental health arena, another more personalized and subjective approach to caring for persons with mental illness has also been emerging. This is “the recovery model”.

William Anthony, a major supporter of the recovery model (9), describes recovery as “a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and/or roles. It is a way of living a satisfying, hopeful, and contributing life, even with limitations caused by the illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness”. Sullivan (10) has called for “a broad definition of recovery, one that not only focuses on the management of the illness, but also highlights the consumers’ performance of instrumental role functions and notions of empowerment and self-directedness.” The model emphasizes that responsibility and control of the recovery process must be given in large part to the person with the condition. Indeed, some recovery model advocates have stressed that over-dependence on others denies the possibility of recovery or prevents recovery. The locus of control thus becomes less external. Mental health interventions are designed to be empowering, with the persons themselves taking the responsibility for decisions concerning their lives (11,12).

Recently, entire states, such as Wisconsin and Ohio have been redesigning their mental health systems to stress recovery model values like hope, healing, empowerment, social connectedness, human rights, and recovery oriented services (12).

Although the recovery model has been garnering support among consumer advocates and mental health administrators, objections to this approach have recently been raised in the mental health professional community. Pointing out that the recovery model is subjective, not data-based or scientific, Peyser (13) has even suggested that the recovery model may in fact interfere with treatment. He points out that psychotic and similar illnesses can subvert the thinking process to the degree where the patient’s self is taken over by the disease. He asks how can we speak about empowerment and collaboration in such cases. Preyser suggests that that there are “dangers in going too far” toward fashioning a model that primarily focuses on hope, empowerment, and human rights.

Two apparently very different approaches to treatment of the mentally ill are emerging. The scientific, objective, EBP approach emphasizes external scientific reality, while the recovery model stresses the importance of the phenomenological, subjective experiences and autonomous rights of persons in recovery. The two models will conflict under many circumstances; the two most significant will be described here. Obviously, when consumers make treatment decisions, sometimes they will make choices that are not evidence based. The second type of conflict takes longer to describe, but is no less important. Treatment decisions cannot be made entirely on factual, scientific grounds. Rather, treatment decisions involve both medical facts and value choices. Science can identify alternative possible treatments, and an outcome probability distribution for efficaciousness and side effects for each treatment option. The decision as to which combination of anticipated improvement and anticipated undesirable side effects is preferable is a value choice. Consumer treatment decisions will be more likely to reflect consumer values than decisions by treating professionals, even when the treater attempts to determine consumer preferences. Thus, EBP treatments may differ from recovery model treatments insofar as they reflect different judgements of the value of various treatment outcomes by service providers and consumers.

The recovery model has found significant support in the mental health field, particularly among consumer advocates. Thus, the question arises if these apparently opposed approaches to mental health care can coexist. And can efforts to expand the influence of EBP somehow accommodate the more subjective philosophical thrust of the recovery movement?

Increasing the utilization of externally derived interventions while at the same time maximizing individual empowerment emanating from an internal locus of control will be a challenge. But if we are to win consumer advocacy support for EBP we should accommodate the insights of the recovery movement.

Integrating the Recovery Model and EBP

One approach to reconciling scientific and subjective approaches to treatment has recently been suggested by Munetz and Frese (13). These authors suggest that the traditional evidence based approach, or what they refer to as the “medical model”, can be compatible with the recovery model. In their view, the evidence-based, medical model has been highly paternalistic, emphasizing illness, weakness, and limitations, rather than potential for growth. They claim that the evidence-based medical model has been perceived as stamping out hope, by implying that biology is destiny and as emphasizing an external locus of control. The authors also mention that some consumer advocates view the physician as a powerful and oppressive figure who “at best is acting out of misguided beneficence” and at worst fosters “helplessness and chronicity.”

They describe extreme critics of the medical model who accept Thomas Szasz’s position that mental illnesses do not really exist as biopsychosocial disorders (15). These authors also point out, however, that some consumer advocates, including psychologist Drs. Patricia Deegan (16,17) and Fred Frese (18,19), accept the existence of their illnesses and recognize that they have certain limitations because of their illness. However, Deegan also particularly warns of the “cycle of disempowerment and despair” engendered by traditional, objectively based, paternalistic approaches to treatment of the mentally ill (17).

Munetz and Frese demonstrate how this alleged conflict between objectivity and subjectivity can be largely resolved. For persons who are so seriously impaired in decision making capacity that they are incapable of determining what is in their best interest, a paternalistic, externally reasoned, treatment approach would seem to be not only appropriate, but usually necessary, for the well being of the impaired individual. As these impaired persons begin to benefit from externally initiated interventions, however, the locus of control should increasingly shift from treatment provider to the recovering person. As individuals recover, they must gradually be afforded a larger role in their selection of treatments and services. Throughout the recovery process, persons should be given maximal opportunity to regain control over their lives. They should be given increasingly greater choice concerning EBP interventions as well as any other available services.

To accommodate the precepts of the evidence-based medical model with those of the recovery model, Munetz and Frese have suggested an approach consonant with the observations of Csernansky and Bardgett (20) and others. After surveying recent research concerning the pathophysiology of the brain, Csernansky and Bardgett point out that the degree of impairment in serious mental illnesses falls on a continuum varying from severe, refractory psychosis, through, less serious, responsive psychosis, and on toward normality.

Munetz and Frese indicate that many individuals are so disabled with mental illness that they do not have the capacity to understand that they are ill. Giving such individuals the right to make decisions concerning treatment is tantamount to abandonment and “is inconsistent with the recovery paradigm to allow incapacitated individuals to remain victims of their serious mental illness” (14 p.15).

Munetz and Frese argue that for these very disabled persons whose mental illness seriously impairs their capacity to make rational decisions, and sometimes their ability to understand that they are ill, measures must be taken so that they become well enough to be able to benefit from the recovery model. That is, one treatment goal whose significance EBP should accentuate is promoting enhancing the consumer’s ability to make autonomous treatment decisions, in order to regain control of his or her treatment.

Persons very disabled with mental illness are thus most likely to benefit from objective, evidence-based approaches to treatment. For these persons there is a lessened need to focus on the person-centered principles of the recovery model. As such persons begin to benefit from treatments, however, they should be afforded opportunity for increasing autonomy.

As they progress along the road to recovery, their growing autonomous capacities should be respected, eventually to the point where treating personnel assume the role of consultants, with virtually all decisions concerning treatment being in the hands of the persons who are making the journey of recovery.

Persons who have substantially recovered can be viewed as being maximally likely to benefit from the autonomy-centered recovery model. Alternatively, such persons could be viewed as having sufficient autonomous capacities to have the same right to make their own treatment decisions, even if those decisions are not evidence based, or maximally therapeutic, as is routinely accorded to persons who are viewed as having no decision making impairments.

Consumer Views

An important and logical step in increasing consumer empowerment is to identify the concerns of the consumer. Attempts to determine how psychiatrically disabled persons perceive their needs is a relatively new concept in mental health. Until the latter part of the 20th Century persons with schizophrenia and other serious mental illnesses were generally viewed as being so delusional or otherwise cognitively impaired as to be incapable providing substantive input concerning their care. While many such persons did recover, the opprobrium they faced was so ingrained that few of them, or even their family members, would openly acknowledge their experiences with these conditions. As is true now, there were significant disincentives against such disclosures for those who were, or had been, considered “insane”. A similar stigma discouraged openness by those having “insanity in the family”. Beginning in the 1960’s, however, some persons who had been subject to treatment for serious mental illnesses slowly began to identify themselves openly. Additionally, some of these recovering persons took steps to organize themselves, and started to give voice to their views.

Advocacy efforts of consumers and family members have mushroomed, and today are a valuable and formidable force affecting all aspects of mental health policy (23).

The National Alliance for the Mentally Ill (NAMI)
Of the consumer advocacy entities that were formed during the past quarter century, NAMI is by far the largest. NAMI (originally known as the National Alliance for the Mentally Ill) was only founded in 1979. As of the summer of 2001, NAMI had a membership of over 210,000, with over 1200 affiliates, located in all 50 states. NAMI currently supports a full time staff of over sixty employees.

NAMI initially functioned as a group advocating primarily for the families of persons with serious mental illnesses. Gradually, however, the influence of the consumers in NAMI has become increasingly important. The organization has a large consumer council, and during the past several years at least one quarter of the members of the NAMI Board of Directors have been consumers. Despite this growing influence however, the tens of thousands of consumer NAMI members do not speak as an independent organization, but blend their concerns with those of the majority of the NAMI members, who are for the most part, family members.

NAMI has a quite lengthy and complex policy agenda, but recently NAMI has given special prominence to what the organization sees as eight particularly important policy issues. These priorities are characterized by NAMI as being “based on the most effective standards and programs demonstrated to empower individuals on the road to recovery”. Published and widely distributed as the, “Omnibus Mental Illness Recovery Act: A Blueprint for Recovery – OMIRA”(21), these eight NAMI priorities are:

1. Consumer and family-member participation in mental illness services planning
2. Equitable healthcare coverage – parity (in health insurance)
3. Access to newer medications
4. Assertive community treatment
5. Work incentives for persons with severe mental illness
6. Reduction in life-threatening and harmful actions – restraints
7. Reduction in the criminalization of persons with severe mental illness
8. Access to permanent, safe, and affordable housing with appropriate community-based services

There is extensive overlap between NAMI’s policy priorities and the six EBP designated core interventions. One area, assertive community treatment, is clearly prioritized, under the same term, by both NAMI and EBP. The EBP call for medications prescribed within specific parameters is somewhat addressed by NAMI’s prioritizing access to newer medications (OMIRA #3). More to the issue, NAMI was an active participant in the public launch of the PORT findings, which gave wide distribution to the specific recommended parameters for prescribed antipsychotic medications (22). NAMI also produced and distributed over 500,00 brochures highlighting these recommendations. These efforts supporting the PORT results also highlighted the EBP recommended interventions for assertive community treatment and for family psychoeducation. Indeed, although neither is explicitly designated as EBP, NAMI has two major training initiatives related to the last item: the Family to Family program, which focuses on education of family members, and the Living with Schizophrenia Program, which teaches consumers how better to live with their disorders. This latter effort primarily involves illness self-management, therefore also being related to another of the EBP designated core interventions.

The EBP core initiative # 5, supported employment, is encompassed within the OMIRA # 5, work incentives for persons with severe mental illness, even though the two are not identical. Finally, although NAMI has yet to explicitly develop a policy initiative calling for integrated mental health and substance abuse treatment, the national NAMI Board has been actively weighing the pros and cons of taking a position supporting this initiative.

In a broader, yet specific, demonstration of support by NAMI for the EBP initiatives, the NAMI Board President recently sent a letter to all sixteen national board members highlighting the importance of the EBP movement.

NAMI, of course, was started by family members of those who were very disabled with mental illnesses. The organization continues to have the needs of the most disabled as its priority concern. Many of the consumers for whom NAMI lobbies tend to be too disabled to speak for themselves effectively. Many of them are not ready to benefit from the recovery model. NAMI support for EBP initiatives can be expected to be strong, but not necessarily uncritical.

On the other hand, there have been agenda statements from organized groups of consumer advocates during the past decade that have presented the collective voices of persons further along in their recovery.

The National Mental Health Consumers’ Association (NMHCA)
One of the more successful attempts to characterize the spectrum of concerns of recovering persons is embodied in the Mission Statement and National Agenda of the National Mental Health Consumers’ Association.

Although the organization has not been active during the past few years, from the mid-1980’s through the mid-1990’s NMHCA was widely viewed as being the most organized and largest, independent, non-disease-specific, organization for persons who had been treated for serious mental illness. Consumer advocates from all sections of the country regularly participated in the election of members of the NMHCA Board. Meeting monthly via conference-call, the Board had some claim to reflecting the collective voice of consumer concerns nationally because of the organization’s organizational structure. In the early 1990’s and after lengthy deliberations, NMHCA produced a statement of mission and national agenda. The wording of their document was approved overwhelmingly by both the Board and by the NMHCA membership in attendance at their meeting on December 12, 1992 in Philadelphia held during the annual national Alternatives Conference. Although the NMHCA statement was widely distributed in consumer advocacy circles, to our knowledge, it has not previously been published. The NMHCA statement is presented below: (continued in part II)