Consumers’ roles are changingfrom passive recipients of mental health services to active participants. The Oregon Health Plan provided an opportunity to hasten this development, which required learning by all.

Consumers’ Experiences of Mental Health Policymaking Garrett Smith

Several years ago, there was no more clarity in Oregon concerning what sort of involvement service recipients should have in designing a new financing and service delivery system for mental health than there currently is in many other parts of the country. Indeed, the phrase “consumer involve- ment” is thrown around so loosely, and so broadly, that without a careful description of what we may mean in any particular context, a discussion of the role of consumers in the mental health system seldom translates into a useful set of policies that can lead to constructive behavi0rs.l I begin, there- fore, by defining the arenas and the types of possible consumer involvement and then comment on the situation in Oregon.

Clinical Arena

Persons whose symptoms and behaviors lead to being classified as mentally ill have historically sought, or have been required to have, “treatment” aimed at symptom reduction and behavior modification. The stated goal of treatment has been “normal” feelings and behaviors, as defined by medical and mental health professionals as well as by family members. The major mental illnesses were considered chronic and either of a periodic or con- tinual and worsening nature. Persons so diagnosed were considered to be of limited capacity and to have impaired judgment. Their own goals for the future were given secondary if any consideration in the clinical decision- making process.

One began to hear the term “empowerment” in the late 1980s. Few peo- ple seemed to know what they meant exactly when they employed the term,

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but clearly there was some recognition that people with mental illness might regain some measure of judgment and therefore be trusted to apply some con- trol over their own lives. Mental health professionals often asked me how they could empower somebody, which betrayed their misunderstanding of their role. Empowerment comes from a person’s belief of possessing capacity This belief is generated, in part, by the support and shared belief of medical and mental health professionals. This lesson is hard to teach and hard to learn. It is also dif- ficult for some professionals to believe that in relinquishing power and control voluntarily they are not endangering their status and jobs. To be fair, many per- sons who carry the label “mentally ill” believe they should possess total control over their course of treatment and choice of lifestyle. The inevitable struggle over the fixing of responsibility for public and personal safety creates tension and diminishes trust. Yet it is trust that enables collaboration to succeed, and trust requires good faith on the part of all parties concerned. Consumer involve- ment at the clinical level means that we believe responsible behaviors can be expected from all players more often than not, and that joint problem solving succeeds where unilateral treatment decisions fail.

Service Delivery Arena

A mental health service delivery model must include the provision of supports in addition to strictly medical interventions. Peer support can be considered a good indicator of, and a necessary ingredient in, the appropriate resources that need to be developed. The effectiveness of self-help is accepted more in other arenas than in mental health. Many persons who have experienced severe psy- chiatric symptoms find that peer support is an important component of their recovery-oriented activities and aggressively seek it. Self-help efforts obviously need to be consumer driven. Consumers need to be assisted in organizing, so that they can effectively propose models of involvement that fit their perceived needs and reflect their special capacities. Opportunities for persons to get together in the belief that they can become viable service providers must be fostered. Valid expressions of needed supports should be funded. Managed mental health care contractors must be required to show that they are willing to incorporate consumer self-help into their service delivery system. Contrac- tors also must be committed to hiring professionals who have experience as direct consumers of mental health services and are willing to use that experi- ence as part of their approach to their work. As the purchaser of services, the state mental health agency clearly has the responsibility to define, require, and enforce both integrated and alternative consumer-delivered services.

Monitoring and Quality Assurance Arena

An agreed-on service delivery system (even if adequately funded and cou- pled with a clear set of contract requirements) does not a paradigm shift.

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Nationally, there is raging debate and a plethora of initiatives addressing the issues of quality assurance, continuous quality improvement, what to mea- sure, how to measure, who measures, who defines desired outcomes, which outcomes are useful for whom and to what end, what data systems are needed, how to ensure comparability of data from one system to another, what constitutes quality, who credentials or certifies a minimum level of quality, what is a minimum level of adequacy, and so forth. These debates seem endless and are often self-serving, conflicting, and worthy of the best dialogue heard at the Tower of Babel. When all is sorted out, consumers may well ask, “Isn’t the point of a mental health system to assist people to get better? If so, shouldn’t we focus on the individual and collective evidence that a contractor is achieving that end? Shouldn’t consumers define what constitutes ‘better?”’ When public dollars are used to purchase services, it is clearly the responsibility of the public purchaser to define desired out- comes and to require that contractors demonstrate the achievement of these outcomes. Providers of public mental health services often convince the state that i t has no business defining benchmarks and measures to assess the realization of outcomes. The politics that intrude are palpable but inap- propriate. It is the role of advocates to hold the public mental health system accountable and to provide the political support necessary for the state men- tal health system to do its job, to “hold contractors’ feet to the fire.” This task is formidable, given the complexity of the games played, their political complexion, and the enormous monetary stakes.

Early Days

Because the Office of Consumer Advocacy was not established at the time, I am unfamiliar with much of the consumer advocacy that occurred as the OHP was being conceptualized, spelled out by the legislature, and imple- mented by Oregon’s state mental health agency. The Mental Health Asso- ciation of Oregon, however, was an active participant. That organization necessarily acted more as an agent for persons with mental illness, based on their collective perception of effective service delivery for clients, than as an organization of service recipients speaking for themselves.

Oregon has long had consumer representation on state-level policy committees in mental health. The principal such committee at the time inte- gration and prioritization were being discussed was called the System Man- agement Council. There was one consumer member on the council at the time. As that member, I saw it as evident that in terms of prioritization of conditions, decisions were not significantly influenced by consumers, save for those invited to testify before the Mental Health and Chemical Depen- dency Subcommittee of the Health Services Commission.

By and large, mental health consumer advocates were unaware of the work of the Health Services Commission.z In my view, we were fortunate

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that the outcome of its work was so largely satisfactory. Were the exercise to be repeated today, consumers would want to scrutinize closely whether the community-based supports facilitating a reduction in the need for medical services were being considered with sufficient gravity and in a way that allowed for their inclusion in the formula used to determine treatment effectiveness. Put another way, did commission members believe that rehabilitation and support lead to recovery and that they should be included in any consideration of medically appropriate and effective treat- ment? We might also have been wise enough to point out the difficulties in delivery of dual diagnosis (substance abuse and mental illness, for instance) treatment when those historically separated services are funded from different budgets.

Getting Involved As a member of the System Management Council, I was not informed about the activities of the legislature as it was presented with bills stipulating that mental health services were to be phased in under the OHP Consumers were largely unaware of advocacy opportunities as the phase-in legislation was debated. The stated aim of the MHDDSD to achieve the full integration of mental health, chemical dependency, and purely physical health services was also not a decision influenced directly by mental health consumer advo- cates. It is simply the case that from 1989 to 1993, as the components of the OHP were being debated by the traditionally interested parties, Oregon's mental health consumers had not organized themselves to be heard effec- tively. We did not understand the issues, their importance, the arenas where we needed to be, or the power structures, nor did we understand that a rev- olution was in the making that would affect us profoundly. So we concen- trated on advocating with traditional service providers about issues concerning self-help, client rights, housing, employment, and access. This effort was not wasted, and a group of effective consumer advocates emerged. We were simply slow to understand where the future lay. Many providers were similarly slow.

From 1989 to 1993, there were individuals who helped get us involved. Richard Lippincott, the state mental health administrator at the time, was a strong believer in listening to persons receiving treatment and conveyed that belief to some of those who worked for him. Consumers began to be invited to as many meetings as they could attend, and we began to learn about what was going on beyond the walls of our day treatment centers.

As to the OHP, we were in a sense fortunate, for none of the players knew enough about what they were doing to overwhelm the rest of us who did not know either. The special languages, the new funding mechanisms, the talk of outcomes, the public-private issues were all things that those of us who were interested or sufficiently frightened needed to learn about together. Because most persons labeled with mental illness begin from a

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position of disempowerment, it takes savvy and chutzpah to perceive that the various emperors are naked and to act on that observation with convic- tion. Over time, however, our seats at the tables were secured, and our observations were considered pertinent.

It was during the development of the RFPs for phased-in mental health services under the OHP that significant consumer and family input was available at the state policymaking level. Though preliminary work on the draft was completed by the staff of the state mental health agency, consumer and family members had opportunities to join work groups that reviewed, amended, and refined the product. One widespread assumption proved erro- neous-namely, that a potential contractor’s responses to questions posed in the RFP would be binding on later performance. In actuality, only the contract language and administrative rules would ultimately be binding. So although a consumer and a family member were included as full members of the review panel that analyzed RFP responses, they had no opportunity to review contracts, including special conditions that could substantially alter the nature of the final commitment. At the local level, although Ore- gon’s counties (which act as mental health authorities) are required to have advisory committees that include family members and consumers, those committees were seldom substantially involved in the development of the RFP response. In over half the counties, the committees were either dor- mant or nonexistent. When committees did meet, consumer seats were often vacant. On the other hand, commercial sector bidders generally did develop their RFP responses with operational mechanisms for family and recipient involvement.

Implementation

The Health Plan Unit of the state mental health agency assembled a state- level quality assurance committee once the contracts were let. Because the legislature had mandated that data be collected and analyzed in order to make more informed choices about extending the health plan benefits statewide, the contracts contained requirements for shadow billing (encounter data) and cost breakdowns. Contractors were not entirely com- fortable with having to do this work, and few if any of them had the record- keeping capacity to collect the data. They also seriously miscalculated the time and expense it would require. Contractors were members of the state quality assurance committee, and they met monthly with state staff. Much of the time in these meetings was spent negotiating and renegotiating these requirements. A “them” (state) versus “us” (contractors) dynamic devel- oped. I used the opportunity to remind both sides that there was every jus- tification to require accountability for the expenditure of public dollars, that in signing contracts the providers had agreed to meet the requirements of the contract, and that it was incumbent on the state to insist that they do so. It should be noted here that the tendency of long-time local providers to

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view the mental health allocation as their money to do with as they wish can be a major problem. Consumer advocates can help all parties review the appropriateness of their position and understand that their “trust me” atti- tude is not acceptable.

Site visits were one of the major monitoring mechanisms in Oregon. Reviewers would follow a semistructured process that included interviews and chart reviews, which led to a report. This report contained findings and might contain recommendations and required actions.

A new model for site visits was developed, which presented an oppor- tunity for the state to assume a new and clearer role in oversight. I was invited and encouraged to participate fully in all site visits. A notable com- ponent of the protocol was that consumers and families receiving services from the contractor were systematically interviewed. Another notable com- ponent of the site visits was the sharing of information with contractors about how other contractors addressed challenges. This approach provided an element of technical assistance as well as evaluation. When I participated, my views were often sought and were freely given. Drafts of site visit reports and recommended actions were shared with the review team as well as with the contractors. The exercise was constructive. It was also extremely useful for a consumer advocate to gain an understanding of operational problems that were generic, as the work of developing the RFP for statewide imple- mentation proceeded simultaneously.

Turf Wars

Although the enabling legislation provided for the expansion of the mental health benefit statewide after the two-year phase-in, the 1995 legislation also mandated an Oversight Task Force on Mental Health Integration to evalu- ate whether the plan should proceed. Composed of six legislators and three citizens at large, the task force was staffed by a steering committee of which I was a member.

The task force met monthly for nearly a year. The steering committee became an important forum for the parties at interest to debate their future roles. Those parties included traditional county mental health authorities, private for-profit and not-for-profit organizations, public not-for-profit agen- cies, and HMOs, all of which might choose to bid on the RFP; the MHDDSD; the state Medicaid agency (the OMAP); consumer, family, and advocacy organizations; and (in theory more than in fact) the legislature representing the public at large.

Tensions ran high. Huge amounts of money were to be contracted. Pro- curement policy would determine who might apply. Task force members, notably the chair, were lobbied heavily. The steering committee was ably chaired, and the parties at interest managed to avoid open conflict and reach consensus on a surprisingly broad set of issues. One of the monthly task force meetings was devoted to hearing testimony from consumers and fam-

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ily members. During that session, consumers, survivors, and family mem- bers spoke eloquently about their needs, about deficits in the existing sys- tem, about fears of an exclusively medical model in the future, about cut-and-run profit taking, as well as about the positive experiences of recov- ery that they and their peers had often had. As sometimes happens when groups are formed to address a particular issue, these meetings resulted in greater understanding, empathy, and trust among many of the players on a broad range of issues. The difficulty in capturing data that allowed for use- ful comparisons between fee-for-service and capitated systems was a con- tinuing problem for the task force and for the legislature. One piece of data obtained by the state that was compelling showed that consumers, in gen- eral, were as satisfied or more satisfied with services in the mental health phase-in counties as they were before the conversion. In the end, the task force recommended to the legislature that the mental health benefit under the OHP be expanded to include all eligible persons statewide.

Conclusions for Oregon

I t might be well to acknowledge that for many consumers receiving ser- vices under the mental health phase-in, the behaviors of their providers changed so little that satisfaction would be expected to remain at the same level. When a new contracting entity subcontracts with providers who have been in the business for years or decades, change reflecting new poli- cies does not necessarily occur, or at least not soon. In evaluating con- tracts with administrative organizations, all parties, including advocates, need to examine closely the nature of the linkage between the adminis- trative organization and the entities actually providing the service. The managed care organization may state its policy on a matter, but its sub- contractors may not feel bound to implement that policy, or may even be unaware of it. Information from other states suggests that Oregon has had a higher commitment to the inclusion of consumer and family advocates in all phases of the planning and policy processes than occurs elsewhere. This commitment is certainly true for key state officials in Oregon. This involvement was sought from the beginning, but there was no way that it could happen fully and instantaneously. Neither consumers nor families nor the established policymaking bodies were educated to play skillfully by the new rules.

The positive result, however, is that as Oregon moves forward with full implementation of a mental health benefit under the OHP, the requirements for consumer and family participation in planning, service delivery, and evaluation have been very significantly strengthened. At the local level, providers are coming to believe that this requirement is both real and rea- sonable. At the state level, resources have been allocated to provide addi- tional technical assistance to advocacy groups, and the quality assurance staff are devoted to ensuring that these requirements are heeded.

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I believe that progress toward the goal of including mental health ser- vice recipients as full partners in determining the nature of the services and supports that will be available to them must necessarily be incremental. Pre- requisite to any progress, however, is a clearly articulated value system enunciated by persons with power and the will to carry through. Consumers and family members must be equally committed and must be willing to engage in the work necessary to play their roles effectively.

Conclusions for Consumers in Other States

I was invited to present information and to participate in work being under- taken by many states struggling with the issues raised by conversion to managed mental health care. Differences in the dynamics among the play- ers, systems, legislation, and funding mechanisms from state to state make it useless to prescribe specific behaviors for consumer advocates. It seems clear, however, that wherever advocates operate, certain strategies work and others do not. The following guidelines proved pertinent in Oregon and ought to be relevant in other states as well:

Advocates generally have a strategic choice between a confrontational style and a collaborative style. In part, the advocate’s personal style dic- tates which approach is more effective. For me, with a background in public policy development, becoming one of the players was by far the more effective way to operate. The development of trust among players and consistently responsible behavior are prerequisite to being taken seriously, to being heard, and to having influence. Consumers who have the time, ability, and willingness to participate require the same level of support as those professionals who attend meet- ings, travel, study, and confer. A consumer advocacy organization that can recruit, train, and coordinate activities at both the state and local levels is essential. Such an organization usually requires funding, which is often made available by government. Independence to operate in the political arena is crucial. The legal basis for access and participation in all decision-making activ- ity needs to be understood by all parties.

Note also that in any system of managed mental health care, the following questions must be considered carefully:

Where and how is the term medical necessity defined? Does it include sup- ports as well as treatment? Which state agency has the power to award contracts and hold contrac- tors responsible for expected performance? What responsibilities are del- egated and to whom?

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What constitutes performance? Does one measure processes of care or consumer recovery? How does one ensure effective contractor perfor- mance? Which decisions are being made within the formal organizational struc- ture and which among informal networks? How is access to informal decision making achieved? How can support and assistance from other states or the federal govern- ment be obtained?

Mental health advocates who believe that consumer-delivered services have a place need to argue for policies that reward a contractor for foster- ing self-help and that penalize those who hew strictly to conventional mod- els. Advocates should also point out that to achieve this aim, technical assistance to both professionals and consumers will likely be necessary. Ini- tially, advocates need to focus their attention on the authority responsible for procurement. Subsequently, they need to assure themselves that contract requirements are met.

Notes 1. For a review, see J. Campbell, “Consumerism, Outcomes, and Satisfaction: A Review

of the Literature.” In R. Manderscheid and M. Hendersin (eds.), Mental Health, United States, 1998. Rockville, Md.: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, 1999.

2. The Mental Health and Chemical Dependency Subcommittee of the Health Services Commission had two consumer members at the outset. They participated in early value discussions, but their work took place before the author became involved with the Oregon Health Plan.

GARRETT SMITH, M.PA., was a mental health consumer advocate and is now retired.