Continued from part I

NATIONAL MENTAL HEALTH CONSUMERS’ ASSOCIATION

Mission Statement
Guided by the principles of choice, empowerment and self-determination, the National Mental Health Consumers’ Association (NMHCA) is a human rights organization that advocates for employment, housing, benefits, service choice and the end of discrimination and abuse in the lives of persons who use, have used or have been used by the mental health systems.

NATIONAL AGENDA

Employment

We support the full implementation of the Americans with Disabilities Act and the Rehabilitation Services Act. We must be given every opportunity to be gainfully employed in occupations where we, with reasonable accommodation, can contribute. We call upon the mental health system to practice affirmative action in training and employing mental health consumers in professional careers in the mental health system.

Housing

All persons, particularly those identified as mentally ill, are entitled to adequate, permanent homes of their choice.

Benefits

All psychiatrically disabled persons must be entitled to sufficient income, social supports, and comprehensive health care to enjoy an adequate quality of life.

Mental Health Systems

Recovery and healing, not social control, must be the goal and outcome of the mental health system; therefore, the mental health system must be client-driven.

Self-Help

We support the full and sustained funding and development of user-run alternatives and additions to the traditional mental health system, self-determined and governed by and for members, in every community.

Discrimination

Discrimination, abuse, ostracism, stigmatization, and other forms of social prejudice must be identified and vigorously opposed at every opportunity.

Examination of the above statements reveals that the NMHCA priorities, by and large, are dissimilar from the EBP initiatives. While the latter focus heavily on the use of medications and on other services, the NMHCA priorities primarily stress factors that should better enable recovering persons to more easily integrate into society. Indeed, the six NMHCA agenda items overlap very little with stated targets of the EBP core interventions. The NMHCA Benefits Section calls for entitlement to comprehensive health care. This may or may not include various sorts of mental health care; such care is only explicitly mentioned in the Mental Health Systems and Self-Help Sections. And the major focus of these latter sections is on more consumer-oriented priorities in overall structure of the mental health system, not on increased availability of psychiatric services.

The statement of NMHCA priorities, in essence, is calling for a reexamination of the philosophy and focus of the mental health establishment. It endorses the primary purpose of the development and implementation of mental health services to be for “recovery and healing”, and not for “social control”. Those constructing and supporting the NMHCA statement are apparently reasonably far along in their own recovery. Indeed they would appear to be sufficiently recovered to focus primarily on how they can improve environmental barriers to recovery rather than examining which treatments they should be receiving. The mostly recovered NMHCA advocates clearly argue for more internal locus of control.

This heavy stress on increased autonomy and other recovery priorities by mostly recovered consumer advocates fits well with an approach that increases consumer autonomy as recovery progresses. But a serious question remains respecting the degree to which views of NMHCA activists reflect the concerns of less recovered, non-activist, and perhaps less articulate, consumers. Similarly, some advocates of the recovery model may not reflect the concerns or needs of these less recovered consumers.
To our knowledge there has been no national attempt to systematically capture the sentiment of more seriously disabled consumers. There have been attempts in Georgia, Pennsylvania, and other states to survey such consumers regarding their views on services.

For about five years now one of the more active of these efforts has been underway in Ohio.

The Ohio Consumer Quality Review Teams

Beginning in 1996, the Consumer Quality Review Teams (CQRT’s) were established by the Ohio Department of Mental Health for the purpose of determining consumers’ views of the mental health delivery system in 22 of Ohio’s 88 counties. Although a few family members and professionals participated as employees in the CQRT projects, the overwhelming majority of workers were persons in recovery from serious mental illness. The primary method for collecting data concerning consumers’ perceived needs in this CQRT effort was through consumer-conducted, structured individual interviews, each of which lasted for as long as two hours.

During a recent three-year period (July, 1996 – March, 1999) some 890 adult consumers were individually interviewed about their views of mental health services. Consumers volunteered for participation in the project. Their names were drawn in a quasi-randomized, stratified manner from both rural and urban areas of the state.

An analysis of the data gathered from these Ohio consumers indicated three general areas of concern. (24). One of these three areas focused on what consumers believed to be services that were needed but that were either not available or seriously under-supplied. These were:
1. Crisis stabilization
2. Longer term secure residential programs
3. Clubhouse services
4. Housing
5. Meaningful retraining and job placement opportunities
6. Consumer-run services (which were reported to be “highly valued by consumers”)

These consumers, as a group, also indicated that they viewed some services as being both available and as being particularly helpful. These were:
1. Emotional support
2. Education/information
3. Social support
4. Treatment (medication, counseling, etc.)
5. Stabilization
6. Financial support

A third area of interest that consumers identified as being important concerned aspects of care that were seen as in need of the greatest improvement. Aspects highlighted here were:
1. Access to services
2. Adequate numbers of staff
3. Increased consumer influence
4. More considerate behavior from mental health staff

One final finding of note was that a significant proportion of consumers was unsure or unaware of which services were, in fact, being provided in their areas.

The consumers who were the subjects of interviews by the CQRT interviewers were all clients of the public mental health system in Ohio. As attempts were made to ensure a maximally random selection of subjects, one could conclude that this sample of opinions was more representative of the “typical” person with serious mental illness than those who structured the NMHCA priorities.

Nevertheless, several of the NMHCA priorities are stressed by the CQRT consumers. These include housing, consumer-run activities, increased consumer influence, benefits such as financial and social support, and access to treatment/health-care services. Unlike the more recovered NMHCA advocates, however, CQRT consumers expressed a desire for services resembling EBP interventions. These include the explicit mention of medication (presumably in appropriate dosages), education/information (similar to training in illness self-management and family psychoeducation), retraining and job placement opportunities, which could include supported employment, and more and better understanding staff, both of which are, or should be, components of assertive community treatment.

The CQRT findings, then, suggest that consumers who are not as far along on their road to recovery may be more receptive of the types of services making up the EBP core interventions.

Conclusion

Over the past three decades, increasingly influential consumer voices have emerged and advocate for improvements in the treatment of persons with mentally illness. Two philosophical forces have recently been developing that are competing for the support of these newly enfranchised consumers. One of these forces is based on science, premised on the identification and implementation of modalities that have been demonstrated by scientific evidence to be effective. The other entrant is the recovery model, which emphasizes the personal nature of the recovery journeys and insists that the final arbiter of how one should recover should be the person who is recovering.

This article reviewed the viewpoints of three groups of consumers. While there are numerous similarities, such as a unanimous call for adequate housing, consumer advocate positions, in large part, reflect the degree of disability of those for whom they are advocating. Those representing the most disabled, such as family members who feel they are advocating for those who are not capable speaking rationally for themselves, tend to be very supportive of EBP initiatives. Consumers who have themselves come back to being fairly well recovered, tend to stress the importance of taking control of their own lives. Such persons value their own ability to make choices, and even value their ability to risk failure. For them the improvements in treatment that accompany EBP may be important, but not as important as the rights of consumers to make their own decisions regarding what services are best for them. As they see it, they, and not more detached scientific researchers, must be the final arbiters how they will go about proceeding with their recovery.

Examining the views of consumers who tend to be sufficiently recovered to be able to rationally discuss their opinions, but not so recovered as to have become “advocates”, we find the desire for a little of both worlds. They want better treatments but they also desire more influence and autonomy.

These observations have the following implications for those interested in garnering maximal support for EBP initiatives.
NAMI members and other advocates who sometimes speak for “those who cannot speak for themselves”, are likely to be very receptive to EBP initiatives. Indeed, the NAMI leadership already has indicated a willingness to help support and implement EBP interventions. Those interested in encouraging consumer advocacy support for EBP should find significant assistance here.

Advocates who speak for more recovered consumers are often such consumers themselves. They tend to be more focused on regaining personal control, placing a higher priority on rights and opportunities to improve quality of life. They also desire more interaction and influence with the mental health decision-making groups that affect their lives. To better gain support from these consumer-advocates the following are a few actions that might be considered.

First, more consumers can be invited to become participating members of groups responsible for conducting, overseeing, and implementing EBP activities. As treatments are being considered for change, having consumers “at the table”, goes a long way toward letting them feel their contributions are valued, and that the decision making process is fair.

Second, because participating in discussions of scientific matters usually requires familiarity with scientific methods and principles. Better efforts should be made to encourage graduate and professional schools that train and credential mental health providers to recruit consumers in recovery. Such efforts could help increase the number of consumers who are able to contribute to the development and implementation of EBP interventions. Some academic entities, such as the Nova Southeastern University Center for Psychological Studies and the Program in Psychiatric Rehabilitation of the University of Medicine and Dentistry of New Jersey, have made good starts in this direction, but the number of such efforts is woefully small.

Third, there is a small, but growing number of psychiatrists, psychologists, social workers and other mental health professionals in recovery from mental illness who have decided to openly identify themselves as such. Psychiatrists, Carol North (25), Dan Fisher (26), and Suzanne Vogel-Scibilia (27), have all publicly declared that they have experienced serious mental illness. Psychologists Ronald Bassman (28), Al Siebert (29), Kay Jamison (30), and Wendy Walker Davis (31) and the social workers, Donna Orrin (32) and David Granger (33) have also made similar disclosures. There are, in all probability, many other such professionals who are also persons in recovery.

If these professionals could begin to be more open about their experiences, and those of their family members, consumer advocates could better realize that mental health policy and research decisions are not being made as much in isolation from consumer influence as it may appear.

Most consumers fall in the middle, between the two ends of the cognitive impairment spectrum. These individuals, when asked, appear to desire more control and influence, but also seem to realize they need more and better treatment. In that this is the group that probably constitutes the majority of those served by public facilities, advocates for EBP would probably be well advised to meet often and frequently with public sector mental health professionals and administrators. In this regard, it would probably also be judicious to include recovering persons during such discussions.

While we all should embrace maximizing choice and the rights of consumers to make mistakes, we also need to ensure that enthusiasm for the recovery model does not become so sweeping as to deny the benefits of scientific progress to those in our care.

In summary, the main thesis of this article is that consumers who are more severely disabled, particularly in decision making capacity, can best be treated with EBP approaches with diminished attention to recovery model considerations. However, for those of us whose mental illnesses become less disabling, the principles of the recovery model become increasingly applicable.

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This article originally appeared in Psychiatric Services, November 2001, vol. 52, no. 11, pp. 1462-1468.