If behavioral health systems were performance art, then the behavioral health system in Southern Arizona would the Flying Karamozov Brothers juggling a dozen razor-sharp, double-edged swords. In many ways, Arizona, and particularly Southern Arizona with Tucson at its core, is ahead of the nation in managed care of behavioral health. An approach to care, and maybe even a new paradigm of care, is evolving. But we still have time to wait before the double-edged swords are made into plowshares, and the new dawn of behavioral health comes. And for some, that wait will be too long.
Little more than two years ago, I began a journey of discovery. I had just been to the wake of the third in a series of friends who had succumbed to drug- and/or alcohol-fueled suicide. I had not been close enough to see their implosions coming. It took observing the terrors preceding and the aftermath of another's very near suicide last May to precipitate my attempt to understand a system of care that is chronically understaffed, underfunded and so, very crowded.
For anyone in the throes of a depressive spiral propelled by mental illness alone or compounded by alcoholism laced with the pharmacopoeia that daily crosses our border with great efficiency, the maze of the behavioral health system is covered with jagged edges. There is of course a privately financed system of health care, to which many of our citizens subscribe, on their own or through employers. With private insurance, you may be bounced from drug treatment center to psychiatric couch without either knowing what the other has ordered or prescribed. You may be discouraged from getting help at all, because the office of the Employee Assistance Program you have to go through to access help is across the windowed hall from your boss and co-workers, or 700 miles and a call-waiting dance away from Tucson.
The kind of gold-clad insurance that assures earnest face-time with a doctor, and not a nurse practitioner or receptionist, is rare these days even for corporate top levels. As far as behavioral health is concerned, if you've got more than just a few minor anxious moments or are undergoing a "reaction adjustment" that can be fixed by no more than 10 visits to a clinical psychologist's office or a script of Paxil, you're most likely to meet those delivering behavioral health care for the public system.
Serious mental illness and drug or alcohol dependence get short shrift from private insurance and the HMOs. If what you're going through isn't susceptible to the quick fix, it's deemed a chronic condition. And even those policies that claim parity of coverage for all medical conditions will not so subtly limit your care with the paperwork shuffle, the phone-menu shuck and jive, and the I'm-sorry-but-you're-not-covered reply. To be fair, customer relators for your insurer probably don't know that the public system can provide help if you're not covered. But if they do tell you to go to the public system, and your insurance has parity for all medical treatment, they could then be welcoming their company to a lawsuit. See the edge of the sword?
Those guiding the delivery of care in the behavioral health system for Southern Arizona have got one helluva job. After seven months of reviewing the system, how it works, how it doesn't work, what approaches, theories, therapies and taxonomies are used by that system, I have to concede that I have more questions now than when I started to ask: "How does anyone get the help they need for behavioral health when they need it?"
Because behavioral health deals with people's very identities--their innermost secrets, hopes, aspirations and desires--how that system works for the citizenry it serves is more problematic than perhaps any other service system publicly supported. Already overpopulated and underfunded, the public system will have to do more and more with less and perhaps, less.
I'll not pretend that here you'll find a total and a balanced view. There are too many contradictions, too many contraries for a single view of behavioral health in this community. Contraries, in the rules of dialectic, do lead to resolution. The current system of care we're talking about is immense. Yet, it barely meets the needs of the problems citizens have. You won't find talk here about "consumers" or "clients" or "patients." We are all citizens, people of this community, and it is a sense of community that often seems most lacking in the various competing parts of the delivery system for behavioral health in Southern Arizona. That is not to say that those in that system are not doing well. They are, as one national expert put it, "Doing as well as they can one day at a time."
So now, how did the system come to be?
THE MACHINE OF THE SYSTEM
Instead of Waiting for the Other Shoe to Drop is the title of a forthcoming book published by the Community Partnership for Southern Arizona (CPSA). About 200 pages, it is a comprehensive guide to obtaining help for mental illness and substance use or dependence. It may be indispensable to anyone navigating the system. But read it when you're not in crisis. While written plainly, it is a weighty and complex tome, intended for a national, as well as local, audience. Its complexity is a clear indicator that persistence--plugging away, day by day--is key for successfully navigating the system's maze.
CPSA first took on the fight for behavioral health in 1995, after a nearly disastrous series of financial missteps and accounting errors had left its predecessor on the ropes. Today, CPSA runs the behavioral health care system for the five southeastern counties of Arizona, one of five Regional Behavioral Health Authorities (RBHA--pronounced "Ree-Bah") that contract with the Arizona Department of Health Services, Division of Behavioral Health Services. All five RBHAs, except for the one serving Maricopa County, are public, not-for-profit corporations. That doesn't mean they don't run things in a businesslike manner.
CPSA manages the funds it receives, and encourages competition among its providers so that choices can be available for different kinds of treatment. Funding channels down to CPSA from federal entitlement and some still-tenuous state sources to buy services from three "risk-based" providers.
These are: La Frontera Center, Inc., the oldest of the three and one of the region's original community mental health centers; CODAC, which evolved from programs dealing with addictions; and COPE, which evolved from a coalition of local churches providing housing for the mentally ill.
All three now provide a range of mental health and substance abuse treatment programs for those with serious mental illness, less serious mental health problems, and substance-use disorders. When one looks at what each provider offers citizens, there are differences, but there is often a sense that the offerings are assembled like pieces on an industrial production line. Take the citizen's diagnoses and from the menu he gets this batch of meds, one or two group-therapy sessions and a tri-monthly visit with the clinical psychologist, nurse practitioner or shrink. That's just a basic model. Case managers coordinate the delivered product, but can be handicapped by not having a great deal of experience, and often, a lack of information regarding the citizen's general health, which comes from a separate set of providers. It's a little like making a Ford without tires, and then having to fit tires from a different manufacturer, let's say VW. The wheels are going run on the tires' edge.
CPSA also contracts directly other providers, such as Compass Healthcare, which provides detox services for substance abuse and residential treatment for those with mental illness and chemical abuse, and Southern Arizona Mental Health Corporation (SAMHC--pronounced "Sam-Heck"), another of the original regional community health centers, which now provides emergency behavioral health services and is often the first point of contact for citizens entering the CPSA system.
Theoretically, any provider in the system can be a point of entry for someone looking for help. But typically, SAMHC, a hospital emergency room or the court system are points of entry for those with serious mental illness. Citizens access SAMHC from its hotline (622-6000) or by walking into its office at Sixth Street and Campbell Avenue. It is a 24-hour drop-in center. Once there, they can speak with trained staff, who will advise them about what they can do. In emergencies, they may see the psychiatrist on call.
"The diagnoses we see here at SAMHC with the greatest frequency are major depressive disorder and bi-polar disorder," says SAMHC clinical director Laura Waterman. "We are, in general, more often the agency for a person's first entry into the mental health care system. We see people at a time of significant crisis; it's generally a one-time contact. And when someone is in crisis, it's a time when great decisions can be reached, and most people leave here feeling very supported," Waterman says.
"We also have a program called crisis stabilization'" Waterman adds, "for people whose problem cannot be resolved in a one-time contact, and who don't have insurance. They'll have a prescriber and a clinician who work with them. That provides a linkage between those in crisis and longer-term care relationships."
Community-based approaches to longer-term behavioral health care began with the deinstitutionalization of state mental hospitals starting in the 1960s. Arizona's current system of care begins with a court suit filed in 1981, Arnold v. Sarn. That suit remains unsettled today, caught up in wrangling between the Arizona Center for Law in the Public Interest, representing Arizonans with serious mental illness as plaintiffs, and the state, which is still attempting to limit how much of the state budget will be used for care of those with serious mental illness.
In 1989, the Arizona State Supreme Court upheld a 1985 ruling in favor of the plaintiffs in the case, and the state has responded by increasing funding available for treatment of serious mental illness. The additional increase in funding streams began at about the same time CPSA was formed in 1995, and received a boost with passage of Proposition 204, which provides "subvention funds" to cover treatment for those citizens previously ineligible under federal funding guidelines. Another suit, referred to as Jason K. for the first plaintiff listed, was filed by a group of Pima County parents in 1991 to seek additional funding for kids with mental health problems. It is still making its way through the legal system, undecided.
As of now, any person in Arizona with a serious mental illness is eligible for care in the public system, irrespective of cost. But, given the state's current budget crisis, those additional state funds may be short-lived. "If anyone with a serious mental illness or substance abuse was looking to get help, now's the time," said one system administrator. "The window is open. How much longer it stays open is up to the wisdom of our state legislators and the governor," he concluded with an edge in his voice.
In the last year, substance-abuse disorders were added to the list of Arizona's covered diagnoses of serious mental illness. As many as two-thirds of those people with substance-use disorders also present symptoms of serious mental illness, and no less than half of those with serious mental illness also use substances like alcohol, street drugs and prescription meds in abuse or to the point of addiction. The numbers of those eligible for public system treatment for these co-occurring disorders is not decreasing.
RUNNING THE MAZE WITH A DOUBLE-EDGED DIAGNOSES
It is the best of times and the worst of times to be juggling the double-edged sword of serious mental illness and substance use disorder. There has been extraordinary progress in research through the 1990s, which was dubbed "The Decade of the Brain" by the National Institutes of Health. But many of the results of that research have yet to be applied. There is greater understanding today of how the mechanics of different components within the brain work, and how they can affect observable behavior. In particular importance to the treatment and better understanding of co-occurring disorders is work on the limbic system, a complex of organs within the undulating boule formed by the twin lobes of the cerebrum. Here's where a lot of learning, memory and response regarding fear, flight, anger and lust transpire. Impulsive and primal behaviors can often be unleashed by a storm of activity in the limbic system, with disastrous consequence.
It is not unusual for those suffering from co-occurring disorders to make multiple attempts at or to complete suicide. Arizona may be in the top 10 states in per-capita expenditures for mental illness, but it is also in the top 10 for suicides. Tucson is regularly one of the top five urban areas in the West for suicide and attempted suicide. The kind of impulsive dis-ease that many citizens diagnosed with co-occurring disorders have, leads many to resolve the truly unbearable psychic pain with a final solution. Others use the brink of death as way to stave off pain.
For these, primarily those who are often diagnosed with one of a range of disorders in what researchers now call "Dramatic-Erratic Personality Organization," attempted suicide by alcohol, drugs or other controllable means is a way of "resetting the system" for a new day's start. The damage to the body such an act creates has a benefit: a rush of pleasure-making, pain-stilling endorphin.
Most often, suicide attempters are brought to hospital emergency rooms. Those who attempt with alcohol or drugs occasionally find their way to Vida Libre, the detox center run by Compass Healthcare. To increase the capacity for system identification of citizens with co-occurring disorders, SAMHC plans to co-locate with Vida Libre at a new facility this year. "That facility will become an integral part of the system's service delivery," says SAMHC clinical director Waterman.
Today, still, behavioral health professionals have limited tools for deep understanding of complex behaviors like the use of suicide as a self-regulatory mechanism for psychic imbalance. Paradigms may be shifting, but what the new paradigm looks like, and with it a new, holistic basis for understanding serious mental illness as it co-occurs with substance use disorders, is tantalizingly on the horizon.
Under the current paradigm of care, those citizens who present with symptoms of co-occurring disorders are subject to mechanical diagnoses from lists of symptomatic behaviors. To qualify some citizens for care, diagnosticians can be reduced to spinning diagnoses to suit the system, rather than the people the system is intended to help. Savvy manipulators of the system can also tailor their own diagnoses. Both actions are a little like letting the punishment fit not the crime, but the prison.
Integration of treatment programs for those with co-occurring disorders is in many cases, in the CPSA system and elsewhere, a combination of better program parts, not necessarily wholes. One of the bright lights in co-occurring disorder treatment is the Admire Plus program of La Frontera Center. Based on five years of continuing research, the program has received national recognition as one of the few model developments for approaching serious mental illness and substance-use disorders simultaneously and in a holistic way.
Dr. Pat Penn, a clinical and research psychologist, led development of the Admire Plus program. "You weren't supposed to think outside the box, and now everything is changing," she says of the difference between times when dual, separate funding streams kept programs for mental health and substance-abuse treatment divided, and now.
Admire Plus offers as comprehensive an approach to care of dual diagnoses as La Frontera can. Individualized therapy and medication management and a variety of approaches to skills development with appeal for different clients are included. "It's not a choice of medication or therapy," says Penn. "Depending on the client's needs, those are processes which have to work together."
The Admire Plus program also recognizes that, while abstinence from substance use should be a goal for program participants, not all are able to maintain the kind of abstinence that 12-step programs often demand. "We'd rather see harm reduction than abstinence if it's a choice between the two," Penn says. Admire Plus counselors also develop other daily life supports for housing, general health care and vocational rehabilitation geared to each participant's needs. "We start always where the client is," says Penn.
"Our clients generally have long histories of being in various systems and for the most part, they've not had very good experiences," she says of those who are part of Admire Plus. "They've been punished. They've been ignored. They've been pigeonholed into one type of treatment or another." And Penn recognizes that co-occurring disorders have no quick fix. "What our clients come to understand is that we'll be here for them for years if necessary," she says with steady gaze. "Of course, the system has to provide stable funding for the long term."
A recent presentation displayed the successes of the Admire Plus program to a national audience of community psychiatrists, other clinical practitioners and citizens. A member of the audience asked, in the spirit of learning from past mistakes, what failures the Admire Plus program had experienced, particularly if there were certain diagnoses that were problematic. "Anti-social personality disorders," was the reply. "But that's not what our research shows," clarified Penn. "We haven't yet done particularly well with people who have polysubstance dependence or have other multiple medical problems. We have had success with antisocial personality disorder folks, but we generally only find them after they've been in jail and the courts assign them to us," she says. "They are, indeed, resistant types."
PRIVATE TERROR AND PUBLIC ACTIONS
Citizen J. didn't go to jail when she ran into the offices of her mental health care provider, broke windows and splashed red paint on the walls, intending to beat her case manager with a hammer. "To me it was symbolic. I was bleeding to death inside," she now recalls after 11 years. Citizen J.'s rage led her to a civil commitment at Kino Hospital for three months. The doctor who agreed to work with her then still sees her. "It's been a long process," Citizen J. says. With therapy, support groups and medication her life is different.
"Taking the meds opened a door to the experience of life that others have that I didn't know anything about, and that's stability," says Citizen J. "Now I have reactions, but they don't drag me off, and throw me down in the dirt and leave me beaten and bloody. I know who I am going to be all day long."
Citizen J. came to Tucson from the Midwest, and she had moved 37 times before age of 34. Both her husband of 11 years and mother were alcoholic, her father a rager she calls "The Shark" because he never slept; Citizen J. binged on alcohol. Citizen J.'s profile is very much like others suffering co-occurring disorders.
And she is part of that group which national estimates now put as high as 10 percent of the general population, once called borderline and antisocial personalities, which researchers now call dramatic-erratic personality organization. These are deceptive, biologically-based illnesses, because those who suffer them can appear "normal" for long stretches of time. "But I suspect," says Dr. Joel Paris, head of psychiatry at McGill University in Montreal and a key researcher of these disorders, "there are very few of us who don't know someone with the disorder."
"I knew when I was 9 that I wasn't like other children," says Citizen J. "The children could tell that there was something odd about me. So I started practicing in a mirror trying to respond facially and bodily like I saw other people respond. I could pass in different roles, and by the time I got to high school, I could pass and people wouldn't have any idea what was going on underneath."
Through college and most of her marriage, she carried the turmoil within. "The pain just got bigger and bigger," she says. "My husband didn't have a clue what I was really like, but from the first year I had to sleep with anyone I could get my hands on," Citizen J. recalls, now long separated from her husband and in recovery for the last five years.
"Maybe one of the biggest things I've learned in therapy is how to access support when I first get in trouble," says Citizen J. "There was a time, several years ago, I was feeling suicidal. "I took my razor blade, and cut my arms until I was really bleeding, and then I painted my face with it. I stood in the mirror and I took a picture of myself and I said, 'I am a warrior. I am fierce. I can defeat anyone. I will frighten you with my own blood.'
"Sometimes now I have to be a warrior. Because life is so hard, but I am going to survive.
"I'm just a very lucky person," she says. "There've been a couple of people who I've come across in my life who have saved my life. And for other people, there's been no one there for them, and they weren't saved."
Citizen K. was not nearly so lucky. Born into an abusive and alcoholic household, the father worked, and ignored his son except when it came time for discipline. "I could come home late, and get a board to the head," he recalls. That was before he was 12. Then came the running away from home, the petty crimes, the psychiatric hospitals and outpatient therapy, booze, drugs, more crimes. Today, at 32, Citizen K. spends his time alone in prison solitary confinement, often just looking at his shoes, a series of burglaries and an attempted murder to his name. "It could have been different, if someone had noticed, if anyone had cared," he believes.
"We have criminalized the life of the seriously mentally ill," says Tucson City Court Judge Michael Lex, who heads up one of only a dozen Mental Health Courts in the U.S. "If we can get people into treatment when they're just doing petty misdemeanors, we'd spend a lot less money for jail costs on these folks than we do," says Lex. Tucson is also one of the few cities, Lex points out, to have a set of probation officers at Pima County Superior Court who specialize in dealing with those who qualify for CPSA. "With a lot of cooperation, we've been able to act," says Lex, "which not only saves the community dollars, it saves lives."
Dealing with the most difficult of those citizens with co-occurring disorders is no easy task. They are difficult publicly, and live with private terrors to which few can relate. "But treatment is justified for people who have a risk of dying," believes Paris of McGill University.
The behavioral health system is on the edges of a paradigm shift. Holistic care, not select slices of it, is what integrating programs is about. Occasionally, even the best system may be so overwhelmed by the needs certain citizens present that it pushes these people away, and for a time they may lock themselves in the memory chambers of a nautilus. It is good to know that within behavioral health and the community at large there are people committed to care because it is the right thing to do.
Care can be focused, persevering and kind. Still, there may be those for whom all we can do is say, "Stay as far away as you need to feel safe." And wait.