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Quiet Tragedies

The major mental illnesses - schizophrenia, severe depression and bipolar disorder - used to be considered emotional disturbances, attributed to things like bad mothering or stress. But we now know that these conditions are biochemical illnesses affecting millions of people. With that knowledge have come better treatment methods, from more effective drugs to more comprehensive community-care programs. Still, thousands of people with mental illness are homeless, existing outside the mental-health system. Countless others represent the "quiet tragedies," as National Alliance for the Mentally Ill board member Carla Jacobs puts it, living isolated lives with little hope in their family homes, or in board-and-care facilities.

We called together some of the county's most impassioned voices to discuss the situation in Los Angeles. Roundtable participants included: Christopher Amenson of Pacific Clinics Institute; Peter Chen, chief of Community Care Programs for the Los Angeles County Department of Mental Health; Susan Dempsay, founder and until recently director of Step Up On Second, a drop-in center for people with mental illness; Carla Jacobs, member of the board of directors of the National Alliance for the Mentally Ill; and Mark Ragins, psychiatrist at the Village Integrated Services Agency.

WEEKLY: I suppose any discussion of mental illness and its impact on society needs to begin with a discussion of what severe mental illness is.

CHRISTOPHER AMENSON: We don't properly differentiate between mental-health problems and mental illness. Mental illnesses, things like schizophrenia and bipolar disorder, are neurobiological illnesses. With physical problems we make the distinction better. Most severe physical illnesses are not called the same thing as the day-to-day experiences. Severe headaches are not called headache syndrome, but rather a brain tumor. But very severe biological depression has the same name we give to a mild case of the blues. So people get confused and think that the true mental illnesses are similar to everyday mental-health problems. But they're not, just as a sore leg is not the same as a broken leg.

MARK RAGINS: I only partially agree, actually. I work in a place where a lot of people have become seriously disabled or are homeless, and although I do see a number of people with biochemical disorders, with many of the people I meet it's less clear what's going on, less clear that it's a brain disorder. I meet the person who was that weird-looking kid in third grade who used to go in his pants and hit the girls. He has now grown up to be a homeless person. Society is saying, "You're a medical specialist, and that's not a medical disorder. He's got some sort of personality or social problem, so don't deal with him." Or if I meet someone whose mother was murdered by his father when he was 3 and he ran away and was homeless and using drugs by 9, I can argue that his problem really isn't a mental illness, that it's a mental-health issue and so he shouldn't be in the public system. But he's still homeless, still suffering. I think a lot of the people that we should be helping do not actually have biochemical disorders, or have other issues on top of their biochemical disorders.

CARLA JACOBS: Mental-health issues are social problems, but severe and persistent mental illness, such as schizophrenia or bipolar disorder, is a physical brain disease. And we have to accept that and start from that point before we can prevent the profound chronicity that occurs from spending your life in the streets eating out of dumpsters, being in jail, being scorned by society. And so while I understand exactly what Mark is saying, that there are all sorts of people that can be helped by mental-health treatments, severe and persistent mental illness starts as a neurobiological condition.

SUSAN DEMPSAY: I think so much of what we are discussing stems from the stigma attached to mental illness. In my retirement, I have started to volunteer at UCLA's Neuropsychiatric Institute, because I want to get involved at the time of the first break, at the time an 18- or 19-year-old is in the hospital for the first time suffering from delusions and hallucinations. The family is usually very confused about what's happening, and they've maybe put off hospitalizing the person for longer than they should have, because they didn't want to admit there was a problem. It's a time at which a lot of professionals hesitate to talk about a diagnosis, because they don't want to stigmatize the person. I think we have to get to the point where we say openly and early, "I think we're dealing with schizophrenia here." Only when we're honest and forthright and talk about symptoms and talk about treatment and medications - which can make an incredible difference - will the individual and the family get the kind of early help they need. Statistics show that only 50 percent of the people who should be in treatment for schizophrenia are in treatment. It's stigmatization, I think, that's behind that.

PETER CHEN: I agree. Roughly 1.5 percent to 2 percent of the population is afflicted with a major mental illness - that's a given across cultures. But for many years, our statistics indicated that the Asians don't utilize county mental-health services much. So the impression was that Asians don't have serious mental illness in the same proportion as the rest of the population. But then you look at the state hospitals and other hospital statistics, and you find that a lot of Asians end up in the hospitals for treatment. Because of stigma or other reasons, they did not get help in the very beginning, and so they end up at the end of the illness cycle needing hospitalization.

WEEKLY: Do we have adequate resources to provide treatment to all those who need it?

JACOBS: We say that there's limited money, but I think that as a society we have to give priority to taking care of those people who are the weakest. In 1966, the California budget for mental illness was something like $111.5 million for 27,000 patients in state hospitals. At that same time, the budget for the California Department of Corrections was $84 million for 27,000 inmates. Today, the California public mental health system is treating about 360,000 people on a budget of about $1.8 billion - that's county and state money - whereas the California Department of Corrections has a budget of $3.7 billion for 150,000 inmates. Not only have we taken the people with severe and persistent mental illness and put them in jail, we have taken the money that we once dedicated to their treatment and thrown it into prisons. This way is not working. We have visible tragedies like Russell Weston [the man charged with killing two guards at the U.S. Capitol], but we also have the quiet tragedies that nobody hears about. When I walked up to the L.A. Weekly, there was a homeless man on the street. He had garlands in his hair and radio antennae and filthy clothes, and he was pushing a shopping cart. This is neglect. And if we are ever going to prevent the Russell Westons or those quiet tragedies, we have to look at how we are giving services, who we are giving services to, and how much money we should be spending.

WEEKLY: What should we be providing in the way of treatment and to whom?

RAGINS: I think we're still in massive disagreement, Carla and I especially. I would not use the county criteria of diagnosis for choosing the target population. I would use disability regardless of the cause, whether it's social, biochemical or caused by drugs. Rather than try to figure out who has a biochemical illness and who doesn't, we need to treat anyone who's disabled. Another model that doesn't work is the one that says that we need to educate people so they know they have a mental illness and then take their meds. The vast majority of young people who have biochemical illnesses are not willing to interact with caregivers on that basis. If we stick with that model, we're going to end up being coercive, which is going to end up with a lot of people in the hospitals again. My job is to relate to people who, for the most part, do not believe they have mental illnesses, people who do not cooperate with treatment. I have to find some way to be flexible about my way of looking at things, in order to make a treatment relationship. Let me tell you a true story. A man came up to me late one afternoon. He was holding up his hand like this, and he asked, "What do you see?" And I said, "I see your hand." He said, "No, no, be more specific." I said, "All right, I see the swirls of your fingerprints, I see the creases between your knuckles, I see your lifeline and your love line - I don't know which is which, but I can see them." He said, "When you can see nails and knuckles and hair, then you can start to be of help to me, because you'll be seeing the world from my side instead of from yours." We have to find ways to relate to people on their terms. And most of the time, they don't believe they have an illness. I will sometimes give out medicine to help strengthen somebody so the devil can't get into her; I will sometimes give medicines to help someone think clearly even though his girlfriend's left. I will change my model, my schema, to meet them wherever they are, because if I just sit and say, "You have schizophrenia; you have schizophrenia; you have schizophrenia," a third of them will never show up again after the first appointment.

JACOBS: Fifty percent of people with schizophrenia suffer from a lack of insight. Neurological studies have shown that it may actually be a brain abnormality. My older brother has schizophrenia. My older brother has an IQ of 180. My older brother has never received treatment, and the reason he has never received treatment is because in his mind he's not ill; it's just that the CIA and the FBI are chasing him. I agree with Mark. People need to be treated with dignity. But we do not have to pander to the symptoms of the illnesses, such as delusions. People deserve early intervention.

WEEKLY: Let's take a hypothetical. Let's say there is an 18-year-old college student experiencing symptoms of schizophrenia for the first time. Let's say he's delusional and having hallucinations but is unwilling to seek treatment. What should we do with this person?

AMENSON: You've got a major ethical decision to make. Science would tell you very powerfully that giving that person treatment, no matter how you accomplish that, will forever alter his life. Some of the newer studies indicate that if people receive medication at the beginning of the illness, their illness will be less severe for their entire lives. So scientifically, the answer is really easy. But what makes America great is the option for individual choice. So how much do you force people, even for their own good?

CHEN: In reality, that 18-year-old, even though he is gravely disabled, cannot be hospitalized against his will if he is not doing anything to harm himself or others.

AMENSON: I would like to see a system in which we take Mark's approach initially, reaching out and asking every person what they want and need. But if someone has a biological mental illness that is going to get worse without treatment and is going to severely impact the rest of his life, then I think we don't reach out to them for very long without taking other steps. If someone is too ill to recognize the need for treatment, then I think forced treatment makes sense. I don't believe you can force treatment on people forever if they're not doing something bad for society. So I think, coming out the other end of that forced treatment, we need to take Mark's approach of trying to join with them. On a more personal basis, though, if I had an 18-year-old son who was experiencing psychosis for the first time, I would get meds into his bloodstream for a year no matter what. I would sprinkle it on his Post Toasties; I would tie him up in a room; I would do anything I could, because science says, if he gets that medication early on, his brain will be less damaged for the remaining 50 years of his life. Ethics are very personal, but that's what I would do for my own son.

CHEN: Ethics aside, can you really do that legally?

AMENSON: No, of course you can't. But I'm not talking as a psychologist, I'm saying that as a father I would strap him in a room and do whatever I had to do.

DEMPSAY: Which, let me assure you, you can't do, either. We've all tried sprinkling it in their orange juice and all the rest.

JACOBS: I think we need a legislative and legal paradigm shift here. If severe persistent mental illness is a brain disorder, then what we need to do is start treating these illnesses as we do other illnesses. If I had a high fever, and I was delirious from that fever and denying that I was ill, no one would wait to give me antibiotics until I said I wanted them. I would say that if a person with a mental illness has the insight to recognize that they have the illness and can weigh the benefits and detriments of medication as well as the consequences of not accepting that medication, then no way should we force that person into treatment. But if the person doesn't recognize that he or she has an illness, then we as a society must intervene.

WEEKLY: Let's set aside for a minute ethical concerns entirely, and let's say that Carla's right and really there should be forced treatment. Is that even possible?

RAGINS: I've actually seen a system of compulsory treatment that works. Twelve years ago, I spent two months in the People's Republic of China. They did house-to-house surveys to find out who had biological mental illnesses. They then tried to get them to take treatment in their house, and if they were unsuccessful, they'd hospitalize them for as long as it took, usually several months. Then they'd put them back in the community, where they were forced to stay on medicine. There would be a policeman and a neighbor and a health worker and someone from the work commune all helping to make sure that the person kept taking the medicine. It seemed rather effective, but that was in a society where there were, at least then, similar controls on everybody. In our country, to create such a system would be incredibly difficult. You would need an elaborate means of keeping track of people, and police to go bring them in if they didn't come voluntarily.

AMENSON: I don't think it's reasonable in our society to force treatment on people forever. But what I would like to see is a system in which a person with a certain level of measurable brain dysfunction would be compulsorily treated for six months or a year. Then after that they could decide. If the medication were to restore some of the cognitive abilities, now the person can really make an informed choice. If that person then makes the informed choice of "No, I don't want medication," then I'm with Mark in saying we don't force people who aren't harming society. But people have to have a chance to have a clear enough brain that they can really make the judgment.

JACOBS: I want to comment on what Mark said. It's not just China that uses assertive community treatment. Dane County, Wisconsin, which is considered one of the most consumer-friendly systems in the United States, has a program where if a person with mental illness is cycling in and out of homelessness, and in and out of the hospital, and in and out of jail, then that person is given an option at the hospital. He is told, "You can leave the hospital and go into the community if you agree to take your medication." If the person agrees, then they get a court order that spells out that the person has to take medication in the community. If he doesn't, then the authorities don't have to wait until he becomes dangerous to put him back in the hospital to be re-established on medication. And it works. We don't have to go to China for that, we can do that here.

CHEN: Last year I entertained a group of mental-health administrators and hospital superintendents from the People's Republic of China. They told us that they had over 1.6 million mentally ill patients locked up in psych hospitals, and they said they need to build more hospitals. Because the commune system is no longer as strongly in place, and they are moving more toward a free-market society, the family is breaking down, and they're having to depend on the hospitals to take care of the problems, so they were here to learn from us.

RAGINS: That makes my point. Twelve years ago, when the society was more coercive, it worked. Now that they're getting more like us, it doesn't work.

WEEKLY: There is an argument that if we intervened earlier and provided better community treatment, the need for expensive hospitalizations would be reduced, and we would ultimately save money. But is that true? In fact, if 50 percent of the people with mental illness aren't being treated at all, isn't it cheapest to continue as we are? Isn't neglect the cheapest treatment?

DEMPSAY: I go back to my son again. My son had a break at 18. He was an incredibly bright, successful young man. Now he is 38 years old; it's 20 years later, and he has been on disability that entire time. We taxpayers are paying to keep him alive with very little quality of life, and we will continue to do it until he dies. It's very costly not to treat and not to try to help someone with a severe mental illness to become a productive citizen.

AMENSON: But there's a dichotomy. There's a set of people, maybe 20 percent of the people who have severe mental illnesses, who end up in and out of the hospital and in and out of jails. For them, it's much cheaper to provide good care. What we've talked very little about yet is the desperate, tragic, withdrawn other 80 percent. It may be cheaper not to treat them, but the reason it's cheaper is that they live with their parents. They never leave their bedrooms, putting aluminum foil over the windows. A lot of times, they aren't on disability; their parents are footing the bills. For a taxpayer, it's cheaper to continue neglecting these people living lives of quiet a desperation. But it's wrong.

CHEN: I hate to say this, but while we have an excellent system for the severely mentally ill, for the persistently mentally ill, there are still those we are not reaching. I think that is unfortunately the other part of the reality we must face.

JACOBS: With regard to costs, we also have to consider costs that get buried in other budgets. The most accurate statistics show that about 6-15 percent of the people in jail and prison have severe and persistent mental illness. Los Angeles County Jail has the dubious honor of being the largest psychiatric facility in the United States. The California justice system alone spends $1.2 to $1.8 billion to catch, adjudicate and attempt to punish people with mental illness. Why? Because we have waited for danger before providing community-assistance treatment. That is substantially more expensive than the best services.

CHEN: As chief of mental-health services at County Jail, I worked with mentally ill inmates for 10 years, and I must second what Carla said. The mentally ill inmates are not generally dangerous, they are just mentally ill.

WEEKLY: And yet we all know the cases where someone with mental illness has become violent. Last summer there was the Capitol shooting; there was the Unabomber. Are there lessons we can learn from these tragedies?

JACOBS: When violence does occur in such a person, it is usually out of proportion to violence that occurs in general society, and it is invariably a behavioral byproduct of untreated symptoms of the illness. The vast majority of people with mental illness are not dangerous. But I think one of the key problems with our approach today is that we do a lot of treatment based on the idea of danger. Waiting for danger - danger to self, danger to others - is just too late, a self-fulfilling prophecy.

CHEN: We still don't have a clue as to why people act out, become violent. We may have some ideas, but we really need to do more in studies and research on this subject.

DEMPSAY: My son manages most of the time to live in the community, in New York City. But I want you to know he is quite possibly a walking time bomb. He has enough delusions and hallucinations that, if they got really ahold of him, he could be a danger. And there are a lot of people like my son out there.

JACOBS: I have a brother with severe and persistent mental illness; my husband also had siblings with schizophrenia. His sister was receiving good care from her family; they were providing her a place to live, they were helping her raise her son, they were giving her clothes, they were making sure that she did not use money frivolously. The family took care of her until her delusions became too great, and she left the family home with her 10-year-old child in tow. My husband and I are resourceful, but for two years we tried to get treatment for her, we tried to get her and the child off the streets, and we were repeatedly told it would violate her civil rights. She was living in a camper; she was eating out of convenience stores. I remember we gave $250 to an attorney, who told us that we should stop looking at the situation with our middle-class morals. We never expected danger from Betty. We were only worried about danger to her and the child living on the streets. But then, without warning, she taxied 75 miles and brutally murdered my mother-in-law, whom she had not seen for two years. She had lost her ability to a exercise her civil rights when we allowed the hallucinations and the delusions to take control of her judgment. This was strictly societal neglect. We were prevented from getting her to a place of safety where she could have been restabilized on her medication. Had that occurred, she would now be adequately mothering her child, my mother-in-law would be alive, and the system would have saved one heck of a lot of money.

RAGINS: What worries me is that I think we have to make a choice about whether to build this system on fear or on hope. I think we tend, because stories like this are so horrible, to build on fear, to put our money into avoiding horrible things. But I don't think we can, in the end, prevent these horrible things, no matter how much research we do.

JACOBS: That story represents hope, because had we given Betty early intervention, compassionate intervention and treatment, that tragedy would never have occurred. Yes, we can say horrible things happen, but we don't have to wait for them. We have to look at individuals and provide them treatment commensurate with their needs, and we have to provide it early on so there is a good prognosis.

AMENSON: I think we've been talking mostly today about the treatment and system failures. But what is most exciting to me is the effectiveness of today's treatments if they're available early enough to people. At Pacific Clinics where I work, I can see such a difference in patients' level of functioning depending on the year they began getting treatment. The best treatment we or anybody else provided 20 years ago wasn't nearly as good as today's treatment. Those who are treated aggressively and early now have much better outcomes. I'm thinking of a young man named Jason who was identified as having schizophrenia two years ago at his very first break. Basically, he's been on medication every day since his first overt psychotic symptoms became apparent. In the first three years of his illness, he has spent a total of just 13 days in the hospital, and he's never been in a residential program. And he's worked steadily for the last year and a half. He's someone who - because he got the treatment early, got the medication, got the psychosocial treatment, got the family involvement - is now a productive member of society who's paying taxes as opposed to being on disability. All indications are that a lot of people can be like him, although not everyone.

RAGINS: I still think we are so busy worrying about liability - and we're spending so much of our money on the hospitals, and worrying about what if this person kills - that we don't have that much money to spend on what works.

JACOBS: Well, then, we have to ask for more money.

RAGINS: There isn't any more money.

JACOBS: Oh bull. It's all in the jails and prisons.

DEMPSAY: You read the statistics: People want punishment. The general public wants to punish, they want to imprison, they want to feel safe. We're just punishing everybody, and now we're taking all the rehab out of jails.

JACOBS: The public wants to feel safe - and the public can feel safe - from people with mental illness. Every single study shows that when people with mental illness are provided treatment commensurate with the level of their needs, they are no more dangerous than the general public.

WEEKLY: I'm curious: We've talked about violence committed by people who are mentally ill. What about being victims? Are they victims more often?

JACOBS: Yes. The rate of violence is horrendously high. There was a woman who wandered around my neighborhood, a beautiful lady who was never dangerous, but the homeless-outreach worker wasn't able to coerce her into treatment. She used to have to wear jeans under her long skirt to prevent being raped. Violence toward people with mental illness is certainly greater than violence committed by people with mental illness.

AMENSON: They have about a 20-year-shorter life span, mostly due to suicide, violence toward them, and inadequate medical care.

JACOBS: We are doing horrible things to people in the hollow idea of civil rights.

RAGINS: I don't think that that's the right place to put the blame. These very same people weren't offered any kind of treatment they wanted. I don't really think the laws need to be changed. I think we need to be more assertive, meeting people where they are and in ways they are comfortable with. They then end up far less resistant to treatment.

AMENSON: So all of us would agree that the first thing you do is everything possible to make services so they are responsive to the individual person, and to make the services fit him or her.

RAGINS: The system's unresponsivity is more of a villain then civil rights. Can I close with one point? With all its problems, our system has done spectacularly over the last 30 years. We always sit around criticizing ourselves because we should be better at this or that. But in fact, we may be the most successful social-service department there is in terms of improvement over the last 30 years.

CHEN: I think we have come a long way, and we have made a lot of progress. But we need more resources to do the job right.

JACOBS: And as a mental-health community, we have to stop saying we don't have the resources. We need to get out there and say, "Give us the resources."


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