. . .consumers in the driver's seat

What will the health care system of the future look like when it is based on wellness and prevention rather than trying to fix people after they get sick? And what will happen when participants determine their needs for well-being?

For many, this is a daunting question. It asks that we muddle through the residual of rigid and failed programs which are heavily dependent on funding programs decided by service providers rather than on patient needs. In mental health and substance use disorders, even the jargon speaks outdated realities with words like "silos," "fragmentation," and "exclusion" used to explain the challenging failures. How will coordinated, consumer-driven choices fit into this?

Some look at the cluttered landscape gripped by fiscal crisis and budget cuts as an opportunity to transform anemic community services, end reliance on hospitals and emergency rooms, and harness poly-pharmacy, or what has become the almost exclusive use of drug therapies. It is a moment not to be lost to entrenched interests.

What will it be?

If the conversations of people attending a conference called by the New York Association of Psychiatric Rehabilitation Services (NYAPRS) are any indication, new models must begin with the voices of those receiving services not those creating them. It may sound like a revolutionary proposal. But it's been around, mostly ignored more often than not, for more than three decades. "Nothing about us without us," framed it well.

Innovation is in the air, if not firmly on the ground. One of the ideas receiving attention in Pennsylvania, Texas, and Florida, allows consumers to control how public funds are used for them in the service of recovery. They can purchase goods -- a new suit, a set of dentures, a cell phone, a membership in the local gym -- as well as services that contribute to goals for future well-being. A pilot study in Pennsylvania, headed by Erme Maula, in collaboration with Magellan Health Services, the Mental Health Association, and Temple University, is now enrolling people with a diagnosis of schizophrenia or bipolar disorders who will work with a certified peer specialist while in the study. Based on work in Florida, there is reason for optimism.

Important for this type of reform in the midst of fiscal collapse is that it not cost more. In fact, where these are being introduced, they are meeting the requirement of being "revenue neutral," said Judith Cook who directs the Center on Mental Health Services at the University of Illinois. Even though long term savings will most likely result from a return to work with a shrinking of disability rolls, Cook said cost savings should not be the motive for giving people a say in what they need. But early studies indicate savings are likely.

Why would people need goods and not services? For someone who can't get to a job without a car, filling up the tank is not optional. For someone waiting to hear when to come to a job interview, a cell phone is a requirement. These are stepping stones to recovery, not status-based consumer items. How different are they from directing public moneys in the form of income tax credits to people who work out of their homes and deduct home offices; who travel for business and charge that against their taxes; who invest in the future with new equipment, fax lines, computers, or printers. They are charges against the public.

Investing in the actual needs of people with a mental illness, who are trying to create a life in the community, rather than a career as a disabled patient, will bring returns to the public as well.

Cook says she is often asked how people in self-directed care programs spend their money. She pointed to data to show the largest amounts went to individual therapy and psychiatric services. This compares to those for whom services were predetermined in which psychiatry and case management ranked highest. People involved in the decisions were not making frivolous choices.

The idea of self-directed care derives from models of helping children with developmental disabilities, others with physical disabilities, and the elderly. For meeting the true needs -- not the monthly prescription renewal with a psychiatrist, or the patchwork programs with add ons meeting Medicaid or program menus -- the time has come.