The New York State Office of Mental Health (OMH) has a novel approach to mental illness. It's called "science."
In 1998, scientists at Johns Hopkins and the University of Maryland did an exhaustive review of the scientific literature and discovered just how unscientific treatment was. They found inadequate practices in a half dozen areas of care, including medication management, ECT, psychological treatment, family education, vocational rehab and other community-based services. The study was called Schizophrenia Patient Outcomes Research Team or PORT.
The PORT study has stimulated a nationwide effort to standardize successful treatments, otherwise known as evidence-based practices (EBPs). OMH believes that EBPs will enable institutions and professionals to offer every consumer state of the art treatment. Wouldn't it be great for consumers to choose from a menu of services with a reasonable chance of success instead of wasting their time in programs that just keep them busy! According to OMH's Molly Finnerty, MD, "The state wants to move the system in such a way that a consumer walking into any state licensed program would at least be offered access to EBPs-this is not currently the case in the vast majority of programs." Apparently, OMH is so hopeful they have dubbed EBPs the "Winds of Change."
OMH's Office of Recipient Affairs is helping to lead the charge toward EBPs and the idea is catching on. OMH has established a steering committee of consumers and OMH staff that has grown from 15 to 44 people as well as sub-committees to deal with each of the eight EBPs. Right now OMH is encouraging providers to join in through a promotional campaign of presentations, handouts, and news on the OMH website.
Core Evidence-Based Practices (EBPs)
The six core services derived from the PORT study are 1) Care Coordination, such as Assertive Community Treatment (ACT) teams; 2) Supportive Employment; 3) Wellness Self-Management; 4) Family Education; 5) Integrated Substance Abuse and Mental Illness Treatment; and 6) Medication Management.
OMH added two other core services, 7) Self-Help and Peer-Support Services; and 8) Treatment for Post-Traumatic Stress Disorder (PTSD). Although the evidence is still growing to support these promising treatments, these services were deemed important enough to be included in the EBP initiative.
Any list is going to leave questions about the services left off. Why not housing, especially for the homeless mentally ill. Why not psychotherapy? There's been a lot of research reported lately showing cognitive behavioral therapy is as effective as medication.
But finding the right evidence is not as simple as it seems, which is probably why it has taken so long for everyone to agree. Hence Jay Neugeboren wrote in his book Transforming Madness: "It is much easier to quantify 'symptom reduction' than, say, 'an increase of hope,' or the long-term effects of either, and easier to quantify "shorter hospitalizations' than 'a fuller sense of well-being.' Vague as the concepts of hope and well-being may seem to a physician, a researcher, or a managed care company, they are quite real to a person recovering from mental illness. Individuals who have recovered from mental illness repeatedly insist that hope itself-the belief that one can recover and that one's own efforts toward this recovery make a crucial difference-becomes a tangible source of genuine change."
PEOPLe, Inc. leads the EBP charge for consumers
PEOPLe, Inc., a consumer-run mental health agency based in Poughkeepsie, believes science can be used to improve the lives of the mentally ill, to make doctors live up to the Hippocratic oath. The organization has gained a contract from OMH to explain the Winds of Change to consumers and solicit their recommendations for other services that need to be examined as possible EBPs.
PEOPLe already provides a number of programs from the EBP menu, such as peer advocacy, supportive employment, and wellness management. PEOPLe's Rose House, in Milton, has the same goal as ACT, keeping people out of the hospital. However, PEOPLe's program is based on peer support and non-traditional or complimentary methods to defuse psychiatric crises.
This raises a question. When it comes to funding or licensing of services, will OMH use EBPs to eliminate "unscientific" programs or programs that have different means of achieving the same results? Dr. Finnerty of OMH said, "It is important to offer a number of approaches to care."
Another question is whether EBPs are the building blocks for a new mental health system or simply new labels for old practices? Dr. Finnerty added, "The list of EBPs being endorsed at the national level has a very strong science base-that is why the list is so short-not many practices reach that level of evidence. It requires several different scientists, working with different populations or geographic regions to find independently that a practice is effective in promoting better outcomes for consumers, such as housing stability, decreased hospitalization, better employment outcomes, and reduced symptoms.
Steven Miccio, Executive Director of PEOPLe, Inc., told the consumers gathered for the New York City Evidence-Based Practices seminar in January, that "It takes a village to get well." In other words, there is no one approach that works. Nevertheless, caring is essential to all approaches.
Said Miccio, "We see the other side of the system: A client staring out the window doing nothing. Another who hasn't bathed in weeks. We help navigate the system. A lot of case managers get so frustrated with the system, they put their clients in warehouses because there's nothing else available."
The Role for Consumers
Miccio continued, "Consumers need to be part of the process to license facilities, for contracts and regulations, for uniform standards of assessment, planning, and outcomes management." To navigate the system, Miccio wants to develop a guide, like the Zagut's guide to restaurants. It would be driven by the culture of recovery rather than the culture of the status quo.. Said Miccio, "Our workshops encourage consumers to go beyond the EBPs and choose alternatives that eventually might be proven scientific."
Hundreds of consumers have turned out for the PEOPLe, Inc. seminars, to create consumer demand for changes. Miccio is preparing to take the consumer version of Winds of Change public with a "white paper" full of recommendations for action and a petition drive to support the recommendations. The goal is 10,000 signatures. (Consumers who would like to see the white paper and sign the petition, can contact PEOPLe, Inc. at 845-452-2728 or PEOPLeHQPK@aol.com.) Miccio meets regularly with a committee of consumer groups and OMH to keep those winds of change blowing in the right direction.
Can Miccio really excite the imagination of consumers with EBPs? Here are PEOPLe, Inc.'s proposed principles for the mental health system:
There must be informed choice;
It must be person-centered;
There must be free access to records;
It must be recovery focused;
It must be based on trust;
It must have a focus on cultural issues;
It must be knowledge-based;
It must be based on a partnership between consumers and providers;
There must be a commitment to "harm reduction;"
There must be equal opportunity to treatment regardless of benefits.