THE FIRST UNITARIAN CHURCH OF HONOLULU
A Unitarian Universalist Congregation
Shall the Federal Court Run Hawai'i's
Adult Mental Health Programs?Sermon by Rev. Mike Young delivered February 27, 2000,
at the First Unitarian Church of HonoluluI intended this morning, first of all, to be an acknowledgment and celebration of those who have experienced the dark night of the soul of a mental health crisis. Many of you have experienced it. Many of you have had family members who have experienced it. Some have come through to health and happiness and victory. Some have come through to survival if not trivial.
There was a movie back in the sixties. It was called the King of Hearts. In the movie a soldier gets separated from his unit in second world war France and stumbles into a village where the only people left are the folk in the insane asylum. The doors have been thrown open. The staff have all fled. The people in the insane asylum have stayed there. As the story unfolds the question is implicitly asked, "Who is crazy?" And the second implicit question is raised, "Before the armies came, who was being protected from whom?"
For all the advances in many areas of medical science and medical health there still rages the most incredible stereotype and fear of the mentally ill.
Very few of the mentally ill are dangerous. The dangerousness of those who are is largely the consequence of their having been treated in ways that have resulted in a rather understandable if not fully appropriate rage. They are sometimes awkward and difficult to talk to. Their responses are unpredictable and unfamiliar but the ones who are the most dangerous look and act normal.
For virtually all of us, when we experience any of the full range of mental problems, to seek or even accept help is to acknowledge that I am wrong, I am naughty, I am weak, I am self-centered, I am lacking in some way, I am no longer reliable. It is to admit that I am an inadequate human being. That stigma is still powerful.
If an organ in your body called the Isles of Langrahan fail to produce a substance called insulin or for somewhat more complicated reasons your body cannot use the insulin it does produce effectively, then you have an illness. It is called diabetes. In response your medical insurance will pay the bills for the physician to treat you, to teach you how to manage your illness and pay for the drugs you need to function in the normal world. They do this, first of all, because it is recognized as an illness. They do this secondly because the earlier it is diagnosed and treated, the cheaper in the long run it is for your insurance company.
If your body fails to produce the correct amounts of any of a range of substances like serotonin and dopamine, or if for more complicated reasons your body cannot use these substances effectively, then you have a mental illness. We know for pretty sure this paradigm accounts for about eighty per cent of the mental illnesses that people suffer. In response your medical insurance will pay for a narrowly limited number of visits with a physician, maybe; may pay for some drugs but will not pay for enough case management to be reasonably sure that they are the appropriate drugs and that you understand adequately how to manage your illness.
Everything I said about early diagnosis and treatment with respect to diabetes, the earlier and better the cheaper, et cetera, is also true of mental illness. Why the difference?
I am convinced that the major difference in the way we respond to so-called physical illness, as opposed to the way we respond to mental illness in our society has almost entirely to do with that ancient fear that the mentally ill strikes in us. Somehow, in our modern minds they are still possessed of a demon. Is that not in fact the way we respond?
The response is not difficult to understand. As any of you who have worked with or had family members who had major emotional mental difficulties know, it is scary, it is frightening, it is unfamiliar! But it is no less an illness.
Why should we, as a society, demand adequate mental care for the mentally ill? We are only beginning to demand adequate care for the physically ill. It does not come as a great surprise to me that we are having difficulty making that same leap of imagination for the mentally ill. But the fact that we are having difficulty making it does not mean that we do not need to lean against this, push against this, and stand up for some basic humanity in the ways in which we deal with those who need mental health resources.
We are tempted to say we have to do it because it's a right. The entitlement and victim vocabulary comes sneaking in and we become uncomfortable with the notion of this kind of treatment, any kind of treatment, being a right. But at the very least it seems to me that, as a society, these are things we need to do in our own enlightened self-interest. The alpha and omega costs of untreated mental illness are staggering.
Alpha and omega costs ? You all remember the FRAM oil filter commercial on television years ago. The mechanic on the screen has the FRAM oil filter in his hand. He says that this oil filter costs less than five bucks. Overhaul of your engine costs about five thousand bucks. It's up to you: you can pay me now or pay me later. Alpha ($50), or Omega ($5000).
It is almost impossible to put serious dollar numbers to the consequences of the failure to treat because the implications reach into virtually every nook and cranny of our society. There is the lost income; the plain old ordinary economic loss from otherwise productive citizens. There are the wasted human resources, the broken families, the consequences on the children, the law enforcement costs, the public health costs, the alcoholism and drug addiction and their attendant societal costs, as the mentally ill, not given proper treatment, try to medicate themselves. The law enforcement costs and the jails and prisons which are too often the only way a mentally ill person gets into a mental health treatment facility.
I am a member of the Patient Protection Committee at the Hawaii State Hospital. We try to find appropriate responses for allegations of neglect and abuse of patients at the hospital. One of the things that is interesting to note as the cases come across our table is the number of patients who are in the hospital because they were arrested, went to trial and were found not fit to proceed for the crime of terroristic threatening. You know what that really means? It means they were having a psychotic episode on the street and scaring the crap out of everybody in sight.
Right now, as the result of a 1991 consent decree, large segments of this state's adult mental health system are under the supervision of the federal courts. In effect that means the Department of Justice. The State has agreed to make certain changes. If those things do not happen the judge is going to take over the adult mental health programs of the state and run them. To fund those programs, the Federal Court can sell state resources. My recommendation to the judge is that the first building that ought to be put on the block, if it comes to this, is the state legislature building, the big box downtown. Most of the problem and the failure to respond to this, comes from that big box.
(Comment from the congregation:) It's been for sale from the outset!
Thank you, Richard! The fact that it's been for sale may be a part of the reason why we're in this mess.
There are three pieces moving through the legislature at the moment. One of them is the emergency funding bill that will pay for some of the resources to continue the process of ameliorating a problem that was so extreme that the federal judge had no difficulty sustaining the case years ago and intervening.
A second bill that's moving through the legislature is one that at first blush you may not realize is related to this issue. That one says that, at least insofar as the government is in any way involved, medical health insurance cover mental illness the same way that it covers any other illness.
The scream is going to be that this is horribly expensive; and the appropriate response to that is the alpha and omega costs answer:
The costs of not dealing with our citizens who have need for mental health services won't go away just because we decide it's too expensive to deal with them. We will pay other ways and pay a great deal more.
There is a third bill that's working its way through the legislature. This is a bill that will provide additional special needs housing for those needing mental health services in the community. We have a few of them on this island that are really quite good, providing models readily available to follow. They work with a number of disadvantages. The state two years ago took away all the case managers outside of a couple of downtown offices. Case managers are the people who see to it that the necessary things happen at the right time so that patients don't fall back into the same situation they were in before treatment was initiated. Is it not obvious that this is a long term cost saving measure ?
All three of these bills we hope move through the legislature. There is perhaps the best chance for them this year that there ever has been before. If you are one who is willing to lobby your state senator and representative, I strongly urge that you write letters, make phone calls, send e-mails, do FAXes and tell them: "Hey, we don't want to pay the omega costs down the way. Let's pay the bill up front. Pass these bills!"
The bill numbers are:
SB 2878/HB 2537 Adult Mental Health Emergency Appropriation
SB 2877/HB 2536 Children’s Mental Health Emergency Appropriation
SB 2579/HB 2105 Provides in community Mental Health Services and Special Needs Housing
SB 2891 Mandates equal insurance coverage by carriers for mental health services.
This is Sharon Yakote. She, too, is a member of the Patient Protection Committee at the State Hospital. She was recently honored by the Mental Health Association for her work as an advocate for consumers of mental health resources.
Sharon, what have I left out?
Sharon Yakote: You need to think in these terms: here you are in this congregation on Sunday morning. You have friends here, and you have members of your family. The most frequent statistic is that one person in five will experience a mental illness problem in their lifetime. So look at the people around you and think of five that you know and realize that one of you is going to experience difficulty in one area or another that you probably cannot predict and you certainly have not planned for.
The Surgeon General's report last fall says it's one in five every year. As a consumer I frankly don't care. I would like it to be one in five in a lifetime, but if we don't work on the one in five every year, we'll never get the numbers down. If we don't work on the one in five, we are not going to have the opportunity to help people live meaningful lives.
Rev. Young: Questions and responses?
Congregant #1: O.K., I'll take a deep breath. I may be one of those one in five of which you speak. I'm dealing with some problems now which are pretty self consuming which is the reason I pull back from a lot of people. The one thing I can tell you right now: You feel terribly, terribly alone, especially when you're brought up in a culture that I was, where you bootstrap yourself out of your own problems, don't lay them on other people.
Number two. I discover that you get yourself into situations whereby people are coming at you and they are just joyous in doing things, probably unintentionally, which exacerbate the problem. And finding my way through it with the help of one of the people in this congregation, worked my way out of it considerably well, and I will continue to do so. However, there are other things.
I notice in the population at large you have Ann Landers, lovely, sexist, questionably wise, dispenser of advice, who when she's faced with somebody who has written a letter which says "I have been having mental problems" she says "Go get help!" Right. For two hundred and fifty dollars an hour. If you can find somebody who will take you. If you can find somebody who will listen to you.
Locally, there's an attitude which I found very prevalent in Japan. I know it touches here as well. If you are mentally ill and seek treatment, you are automatically defined as inferior, you are automatically defined as vulnerable, and you are automatically defined as socially unacceptable. In a culture where the "face" is all and you have a mental problem behind the face, that attitude exacerbates the problem terribly for those individuals.
And lastly, I find myself dealing with other people who have really destructive mental tendencies but who are marvelously able to mask this. So, unless you've been around these people and dealt with them for some length of time, you don't see it, and that's the worst of it.
Rev: Young: Thank you.
Congregant #2: In treating these things, in dealing with this, a longer question comes up. We can deal with mental illness and mental deficiency and mental difficulties in the society at large, but by doing this are we dealing with a symptom, or are we really dealing with the problems? I think I see a longer problem here.
Congregant #3: If you haven't seen the movie Patch Adams, and are interested in this subject, it's both amusing and amazingly analytical. It covers all kinds of mental illness and has, of course, a humorous, interesting solution to the problems, but it is a marvelous movie to take out. Tower records has it for you. I fully recommend that anybody interested in this subject, and I presume most of you are, if you haven't taken out that movie, do so. It will be helpful to you. It was to me. Thank you.
Congregant #4: Patch Adams, the person on whose life and work the movie is based is speaking at U.H. on March the fifteenth, so you can see him in person.
Congregant #5: If Society takes care of everyone who's got a mental problem, how many of us are not gonna be taken care of? For instance, we have a film, "Final Exit", now on a tape. It's to be shown on TV Channel 52 at midnight. Now the reason it's going to be shown at midnight is they do not want people who are not mentally competent, or too young, or easily influenced, to see this film. Now it's all right to see chain saw murders, but to see someone do something to help a person out of misery should be seen only by adults, and I'm assuming that most of you people are adults and mentally competent to see the film and if you do, will you make a tape of it for me?
Rev. Young: Thanks for your generous assumption on my behalf.
One of the things that Sharon and I see in the adult mental health system far too often is that we do not apply the same kinds of professionalism to those treatments that we apply to other forms of medical treatment. In the case of medical malpractice, the standard is: was the treatment up to what generally accepted medical practice requires? Too often it has not been anywhere near that.
An illustration some of you are aware of happened here not too long ago. A staff member took a patient out of the mental hospital to the patient's bank, had the patient withdraw a thousand dollars out of the account and invested it in a pyramid scam that was making it's way through the Samoan community. Now the crazy part for me here is not that this occurred, but that when confronted about it, the staff member who did it did not understand that--even if this patient had made money on the deal--it was still unprofessional and inappropriate behavior. It's that basic level of leap of imagination that those who need mental health services get the same level of professional competence that we assume in all other areas of medical health that concerns me.
Congregant $6: I feel lucky that all my neuro-transmitters seem to be working OK because mental illness runs like a lightning bolt through my family. And the one in five just doesn't touch the root of the pain and loss that is there. When I was about thirteen my mother took me over with her to sit with an aunt who was suffering terribly, and had for years. She had been victim of very poor treatment and electric shock therapy and drugs and such - wouldn't have anything to do with the mental health profession in the later years of life. Her husband had been trying to care for her at home and just exhausted himself 'til finally he called on my mother. Please, he asked, could you come sit with her for a few hours while I go out. Here I am a young child and I sat here with my aunt who sort of quivered with terror at all the fierce unknown things lurking all around the windows and rocking. She was terrified and my mother just stroked her and calmed her. That is no equivalent to proper mental health care, but trying to comfort her as a human being. The impact of that on me as a teenager to see the pain that someone could be in from their own mind made a deep impression on me. I think it is important in our families that as our children become old enough to understand we talk about the people in our families who have faced this terrible illness. As they become old enough to understand and deal with it, we let them see so that they are not afraid of the unknown.
Congregant #7: My son has schizophrenia and this was diagnosed last year. He came over to live with me and I must say has gotten excellent support from the local mental medical care folks. One of the elements of that care is a group called GROW. This was begun in Australia about 25 years ago. It's a kind of a 12-step approach to personal support. I've attended the groups along with my son for about a year and half. If any of you know people that would like some outside support, just contact me and I can help you. It's been very supportive for me when I've been dealing with issues that I found difficult. You can go either as a person who needs care or you can just go or recommend it to somebody who needs support.
Rev. Young: Part of the difference for folk who do get appropriate treatment is having an advocate that helps them manage the system so that they find the resource that's appropriate. This is one of the reasons why the loss of the case managers two years ago has been so expensive for adequate service delivery here.
Congregant #8: Some years ago I lived on the grounds of the mental hospital because my husband was a doctor there. They would send me down patients to help clean house. One lady came down and my children found a spider web in the dining room. They would catch flies and throw in the web and watch the spiders spin them up and it was their pet. So I said to this lady "Clean the house but don't touch the spider web in the window." She said "Why am I locked up and you're not?"
Congregant #9: For those of you who don't know, I was brought to Hawaii to help resolve these problems. In fact I think I live in the same house. We do live in the same house.
Questioner: Spider still there?
Congregant #9: Probably. It's still there. I could go on and on for hours. It drives my wife crazy when I do, so I won't. I would just like to say two quick things.
The notion of caring for people is the wrong notion. We are trying to help people care for themselves. And if we do it properly, you don't even have to worry about the hidden costs. The best care is the cheapest care by far. By half. But we have to build that system. We're trying to make that a reality.
But the other issue was alluded to at the beginning of the talk and that's the stigma. The hospital is too big. We don't need lots of beds. The psychiatric hospital is not for treating mental illness. The psychiatric hospital is for treating dangerousness. You can be very, very mentally ill and live in the community. The only reason you go to the hospital is because you are a danger to yourself or to the community at large. Our job there is to help deal with that and then let people get the services they need in the community.
So while you are talking to your legislators, help them avoid the NIMBY attitude (Not In My Back Yard) because these folks are citizens and have a right to live in the community.
Rev. Young: Yeah. That one raises a whole issue that is at least as big. We have it not just with mental health services delivery but with so many other programs that belong in the community. That's where they work best and where we need them most; but NIMBY is a powerful force to exclude them.
Congregant #10: With regard to "Not In My Back Yard" we have a current controversy about whether or not to feed feral cats, and who is eligible to feed them, at what time and what place and how to clean up after them and it appears the community has more care about feral cats than it does about human beings who are living homeless on the streets.
Rev. Young: In conclusion, I urge indeed that your voice be heard in the legislature. I also urge that when you encounter and experience those within our community that are the consumers of the mental health services that you remember some of the pieces we've touched this morning.