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INCREASE CONSUMERS' ROLE IN SYSTEM REFORM

August 1, 2007
by ROBERT BERNSTEIN, PHD
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Although consumers have a larger role than ever before, their role is still relatively limited

The immediate response by the media and the public to the tragedy at Virginia Tech, predictably, reinforced the stereotype equating mental illness with violent behavior, producing the usual calls for increased legal intervention in the lives of people with mental illnesses. But as the facts emerged, they blunted these alarmist demands. It turned out that the shooter had indeed been ordered into treatment. The fact that he never received it—that the community mental health agency responsible for providing the judicially mandated services reported receiving no referral from the court—illustrates the real problem: a woefully deficient service (non)system, understaffed, underfunded, and unconnected among its elements.

In recent years, such incidents have led to the enactment of mandatory treatment laws, such as Kendra's Law in New York State. To their credit, Virginia policy makers are taking a broader look at the complex world of public mental healthcare. Some legislators are arguing for greatly increased mental health funding, and a commission originally formed to consider the need for expanded outpatient commitment is now exploring overall system reform.

As the Virginia commission and bodies in other states undertake such examinations, newly empowered consumers of mental health services are seeking an influential role in the process. That such a notion often is regarded as revolutionary defies common sense. After all, who better to define the goals of system reform than those for whom it is to be achieved?

It is important to recognize the irony when systems ostensibly dedicated to mental health belatedly and grudgingly begin to accept consumer inclusion. In the parallel world of physical healthcare, consumer empowerment is a good new business model, encouraging, for instance, a healthy lifestyle or a sense of shared responsibility for skyrocketing medical costs. Certainly, these aims can apply to mental health reform, but here the meaning of empowerment runs deeper and carries a longer history. Influence over one's world has long been considered a core element of healthy psychological functioning. Accordingly, in mental health circles, consumer empowerment should stand not only as an approach to prudent service delivery, but also as an important clinical hallmark.

This is still far from reality in current reform efforts. Notwithstanding prominent statements on state mental health agencies' Web sites professing commitment to consumer self-determination and policy directives for “consumer-centered” approaches, practices that dismiss consumer empowerment remain widespread. For instance, coercive tactics often enable providers to deal with consumers expediently, rather than therapeutically. And there is a strong push toward injecting “evidence-based” practices into mental healthcare. This is not in itself a bad thing, but the preponderance of inquiry in mental health reflects a pharmaceutical, rather than consumerist, mind-set.

One innovation ultimately may serve as a bellwether in consumer-oriented system reform. Pilot programs in several states allow mental health consumers to self-direct their services, managing individualized budgets and functioning as purchasers, rather than recipients, of services. Hypothetically, these models hold the potential for radically altering the power dynamic between consumers and providers, forcing the latter to sell themselves at the risk of consumers' walking with their wallets. In contrast to top-down efforts that may have dubious effects on empowerment, this approach directly asserts the consumer's authority.

However, self-direction initiatives are still very small, entail modest individual budgets, and don't include self-direction of the full service spectrum. And anecdotal reports suggest that some providers are cynical, anticipating fiscal and clinical disasters attributable to poor consumer decision making.

Nonetheless, a core of professionals and policy makers is promoting self-direction, peer supports, psychiatric advance directives, and other measures resonating with consumer empowerment. Yet, reminiscent of the expert-driven character of early system reforms, today's empowering reforms still exist at the discretion of professionals.

Four decades ago reform proponents lived in a time of optimism, energy, and innovation, thinking about mental health in broad terms and envisioning an imaginative array of community-based initiatives to supplant the state hospitals. Today matters are more complicated. For better or worse, at the time of the early reforms, state mental health commissioners were the identifiable system leaders, overseeing sizeable, if inadequate, budgets and having considerable say over hospital and community operations. Today, authority over services and supports critical to mental health consumers is dispersed through multiple bureaucracies. State Medicaid, employment, and housing agencies and their correlates in county and local governments are all key players. Few likely see mental health, let alone mental health consumer empowerment, as a priority. So although consumers are now offered a seat at the table, the question of who is, or should be, seated at its head is complex.

The consumer movement has a pivotal role in mental health system reform. As discussed, notwithstanding an air of conviviality and a heretofore unseen opportunity to be heard, it faces daunting challenges. The test will be whether the convoluted system can somehow step aside and allow consumer empowerment to demonstrate its impact and its worth.

Robert Bernstein, PhD, is Executive Director of The Bazelon Center for Mental Health Law.

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