Peer providers: Token employees or vanguards of change?

In the business world, workforce development requires not only a clear vision of where you want the enterprise to go and how you propose to get there, but also who the best people are to get you to the destination. As we wring our hands about the lack of funding to provide high-quality behavioral healthcare for all Americans and the chronic shortage of qualified professionals to deliver needed services, we seem reluctant to pursue either innovation or adequate investment in transforming the service delivery system.

Yet, even amid these struggles, people in recovery from serious mental illness—in the evolving role of consumer-providers—are not just playing bit parts in this transformation, but are emerging as producers, directors and stars of the "show."

Many of us in recovery feel that consumer-run organizations (CROs) are treated by mental health care and advocacy leaders as recipients of their benevolence, instead of workers and individuals who deserve more than token roles in developing and delivering community mental health services. I challenge public agencies and advocates to do three things:

1. walk the talk when it comes to recovery-based practices,
2. invest in consumer-run organizations with large infusions of cash from all sectors of the economy to reduce our chronic dependence on the uncertain resources and unwieldy restrictions inherent in public funding, and,
3. re-examine current models of advocacy that have not had a measurable impact on the reduction of prejudice and discrimination that continues to fester in many parts of society.

As to the first challenge, developing a mental health workforce that is truly recovery-oriented will require more than evidence-based studies and journal articles or small focus groups. It will require that community mental health service providers open their doors and their minds to the true experts in the field of recovery ... the end users (patients, consumers, and clients).

Are the leaders and line staff of mental health and allied service systems able to undergo the scrutiny of the end-users and then make changes that my peers and I can see, touch, and feel? I hope so because the alternative is to keep talking evidence-based, "recovery-oriented" services even while those striving to move their lives from system-bred helplessness to strength and personal power are met with indifference and tokenism in many agencies.

Investing money in new or unconventional social service start-ups takes courage, driven by the hunger for change and discontent with the status quo. And, just as shrewd entrepreneurs are risk-takers, people moving toward recovery are also risk-takers. We leave the house and drive to the store to buy a few items instead of living in fear and social isolation inside our homes. We find the courage to say to a physician or other health care provider that available 'treatment options' do not work or their side-effects are unacceptable, regardless of what the DSM or Physicians Desk Reference says. We also have the courage to risk rejection when we offer unorthodox solutions to intractable workforce problems.

In the last 30 years, despite public advocacy and education to reduce the stigma that families and consumers experience due to mental illness, the stigma seems as strong as ever. Despite some battles won against stigma, we may be losing the war. There are ominous signs on the horizon that social attitudes against those who suffer from 'storms in our brains' may be hardening; that the door to the Cuckoos’ Nest may swing open once again, ready to warehouse those who do not fit American social norms or those seen as dangerous or inconvenient.

A group of peers I met with last week raised this issue in a spontaneous discussion about 'what helps and what hurts' in mental health care. One participant, a veteran of barbaric 'treatment ' in psychiatric hospitals asked, “With all the efforts and money spent to reduce stigma against us, why do we still continue to experience it from family and employers? Why indeed.

Advocates on behalf of any group of people can get tunnel vision in their efforts. For example, the battle to win insurance parity for people with psychiatric disabilities took over 10 years. Correcting this gross injustice was something that needed to be done; kudos to the consumer leaders, family and professional advocates and politicians who crafted the legislation and convinced Congress and the President to pass it.

However, the parallel problem of access was not addressed. Therefore, if a consumer does not have insurance (public or private) to begin with, parity is an academic discussion. And, few have examined the difficulties we face when we have to travel 20, 50 or even 100 miles from home to find an psychiatrist who:

• is accepting new patients
• has expertise in treating the kind of symptoms a specific patient is struggling with, and,
• participates in the insurance plan that we are currently covered by?

Unless the problem of access is forcefully and creatively addressed, the impact of parity is and will remain limited.

From my limited contacts with leaders in the public and private behavioral health care world, I have come away impressed by the compassion and dedication of advocates, managers and front-line service providers. However, I am not sure there are enough strong, risk-taking leaders who are willing to ask tough questions and look for answers from among those who are on the receiving end of services.

Perhaps this quote from Warren Bennis sums up the point I'm trying to make: “Leaders are people who do the right thing; managers are people who do things right. Both roles are crucial, but they differ profoundly. I often observe people in top positions doing the wrong thing well.”

In these difficult times, we must consider that managed care in behavioral health has failed to provide easy access and quality care to those who need it the most. Is our addiction to taxpayer-financed services so entrenched that we are unwilling to encourage both consumer-providers and non-consumer providers to create new partnerships and alternative funding streams?

Our national mental health workforce and related infrastructure cannot thrive unless we figure out what is not working. We can only do this by asking end users what they need and want, and how such services should be delivered. To use a metaphor, a growing number of mental health consumers are ready to move beyond just clearing the tables and washing the dishes. We’re ready to own some of the restaurants, design the menus, prepare the food, and serve the customers. It's time to engage us, learn from us and employ us with respect.