Tuesday, December 22, 2009

Why not let clients see a doctor first, not a social worker?

Why does treatment in a mental health clinic not conform to treatment in any other health clinic where you come in to see a doctor first rather than a social worker? Are we so short on psychiatrists? Aren't general physicians just as capable to handle psychiatric patients today where the main treatment is to prescribe pharmacy? The psychiatric profession has had to learn about these drugs and so can the general practitioner. Besides, county mental health clinics and publicly subsidized hospital clinics, like Ellis, are often staffed nowadays with nurse practitioners and physicians assistants,who have power to prescribe medicines but may lack the rounded experience of a psychiatrist. Look at this—we are told that patients with symptoms of mental disorder other than a florid episode will go to the government-subsidized Hometown Health Center on State Street and see a doctor at first visit, usually same day they show up. In contrast, someone even with serious symptoms trying to see a doctor at the Ellis mental health clinic may be forced to wait 30 to 60 days and then will just see a clinician at the outset. For an emergency they'd suggest you go to the hospital emergency room. The therapist who intercepts you at the clinic needs to assess your condition before referring you on to a doctor. Why do we do this in the publicly assisted clinics but not a psychiatrist's office? The doctor makes his own assessment, keeps his own charts and records, makes the patient “his”, not the clinician's. But the clinician continues to see the patient, delving into social and adjustment issues called counseling. The counselor talks more to the patient than the doctor does, which helps patients feel more comfortable, even if some problems can't be talked out. And this counselor becomes the client's advocate, or not, to line up future doctor visits and other forms of assistance. It's a strange world in which public psychiatry is practiced. (Roy Neville)

why not permanent housing?

It must be near the top complaint of parents and individuals with mental illness in the state-assisted so-called treatment apartments that the state considers these apartments only temporary for that tenant. Why can't the state people accept reality that our relatives don't want to be told they must move within three years or less once they've been placed in a decent, suitable apartment, where they meet friends and get used to transportation routines and feel safe and familiar in it. For years NAMI members have banged the door of the state poobahs in Albany and exhorted policy makers to change the policy that declares these licensed congregate care units (there are several thousand statewide) non-permanent housing. Anyone who has ever been forced from their home knows the anguish it causes to be told to move. Our not for profit housing providers in Schenectady have shown good sense while observing state policy. They've often recognized that a person's needs come first rather than slavishly observing a poor policy that doesn't always fit. So they let some tenants stay on many years in a licensed unit. We were told years ago by a manager for Mohawk Opportunities that they won't move out someone who has greater need for that level of supervision (case manager visits, for example) than if he or she were placed in supported housing. They work this out with the tenant who has leeway to stay on if satisfied where he or she is. The state Office of Mental Health, meanwhile, seems to have a policy it knows doesn't always work, agreeing people should be moved out only if they've gained skills while in the treatment apartments to live more independently. And if they haven't advanced, at least upstate, they can stay on. We hope the good sense prevails, that people still in need of supervision won't be forced to move from assisted housing and the state will add to its housing inventory to solve the bigger problem. (Roy Neville)

Wednesday, December 9, 2009

People with mental illness are getting muscled to kick the cigarette habit-- why not leave some of them alone?

This is a bit contrary. Let's start with observations. Cigarette smoking is on the decline except for people with mental illness who now smoke about half the cigarettes sold in the US (who's counting?) These people must therefore find personal satisfaction with cigarettes despite the state's attempt to paint them as evil and price them beyond what poor people can afford. Smoking causes early death from health problems that include emphysema, heart disease, high blood pressure and cancer. But overweight causes these too, and smoking keeps your weight down. It's the medicines' side effects and peoples' lifestyles that cause overweight so why do doctors prescribe medicines that have such pernicious effects? Well, they are more concerned with regulating symptoms of your disease; that's why you get Risperdal or Zyprexa which blow you up like a ball in a matter of weeks.

Why are so many smokers lounging around outside the club? Doctors writing in the OMH News,August 2009, say family, friends and clients have viewed cigarettes as a way to ease the stress associated with mental illness. Nicotine is seen as helping to relieve symptoms and lessen the side effects of medicines. So, whether true or false, nobody's riding herd on these patients and the doctors want professionals to push people to quit more aggressively. They now counsel treatment to reduce tobacco dependence in combination with nicotine replacement therapy or medication that reduces craving.

That's all well and good but what feels good to someone who experiences the unpleasantness of stress as part of daily life, won't be exchanged for nicotine gum, some pills or pushups at the health spa without really pressing incentives. There's another point. Withdrawal brings its own pains, something these people are going to avoid like the plague. One explanation is that withdrawal symptoms can be confused with worsening of the emotional symptoms of their illness—people get irritable, depressed, anxious, or intense--and they fear this happening.

The state Office of Mental Health is adding muscle to its campaign for tobacco cessation. It wants outpatient clinic programs in state facilities to regularly check on their clients' smoking status and urge smokers to enter a smoking cessation project. Personalized recovery services (PROS), coming to Schenectady's Ellis mental health clinic soon, will pay Ellis to feature tobacco abstinence treatment. Providers are to receive training online to work on this. It will become more prominently part of combined mental health and addiction treatment.

A more guarded approach from NAMI

NAMI national has a guarded policy for smoking and wellness, trying to accommodate voices of smokers who are patients with the role of the guardians over their lives. NAMI wants education and support so people can make healthy choices in their lives. It says “smoking has been inappropriately accepted and even encouraged in therapeutic settings for treatment and recovery. Access to smoking is sometimes used coercively and can be a source of disruption in treatment facilities. Smoking and other tobacco use also increase stigma. NAMI encourages smoke free and tobacco free environments in treatment and other health care facilities, group centers and common areas in housing, including prohibiting smoking and other tobacco use by health care providers, caregivers and others working in and visiting such facilities, centers and housing. NAMI opposes any practice that uses access to smoking and tobacco as a form of coercion or reward.”

At the same time, the policy continues, “NAMI recognizes that the best time to provide and support smoking and other tobacco use cessation is not when consumers are in crisis because such treatment may exacerbate psychiatric symptoms and other conditions. Nicotine addiction is powerful and withdrawal is difficult for the general population, so it is particularly difficult for individuals experiencing a psychiatric crisis.”

A personal view is that the state and various hospitals and health authorities have mobilized huge resources to go after smokers at this late hour. We've known for almost half a century about cancer producing effects of cigarette smoking from huge federal studies done back then. State hospitals have forbidden smoking by patients and staff on campus for at least 10 years. It's against state law to smoke in restaurants, hospitals, almost every public facility and most places of employment. Millions of dollars are being spent to wring the habit out of the last remnant of smokers. The ones who persist can't or won't give it up. Many of them are mentally ill. Why not let them continue? Is this really an epidemic? The relatively small number involved does not seem to justify the massive resources aligned against them. Like children with a natural tendency to be hyperactive, do we need to classify them as disordered and stick them on Prozac?

For the smokers who puff their cigarettes outside in the cold these days, finding solace in the company of others like themselves, giving up the habit may be too much. With an eye on all the dollars the state throws at the problem, a better answer might be to Let them be! (Roy Neville)

Should the mentally ill be allowed to refuse to take their medicine?

It's really the same question all over again, explained very well in an editorial in the Boston Globe back in 2002, as follows: “Research shows that almost half of those with schizophrenia have an impaired awareness of their illness. This impairment, called anosognosia by neurologists, is caused by damage to areas of the brain that mediate self-awareness. The impaired awareness is thus biological in origin, similar to that seen in Alzheimers's disease, and may vary in degree from individual to individual and even in the same individual over time. It is not the same as denial, a psychological mechanism that we all use at times. This lack of awareness may explain why a number of the mentally ill are inconsistent in taking their medications, antipsychotic drugs that can help stabilize moods or eliminate delusions.

Dr. E. Fuller Torrey is one of the authors who supply us with the evidence about anosognosia.“Impaired awareness of illness is a major problem because it is the single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications," trumpets a page from the Treatment Advocacy Center in Virginia, where Dr. Torrey is the principal writer. "It is caused by damage to specific parts of the brain, especially the right hemisphere.”

Evidently that's the part that mediates self awareness. But do you mean that people with schizophrenia aren't self aware? The same people get around town every day, get up in the morning, take breakfast, go off to work or program, meet counselors, take pills, talk to friends, enjoy a read in the library? Do they do it all in a trance?

Now for the failure to take medicine. That's mainly because they hate what it does to their mind and body. It stretches them out, knocks them out, makes them listless and foggy minded. They lose any energy, any appetite, any sex drive. And they still have the hallucinations and delusions that are hallmarks of the disease. In Fuller Torrey's “Surviving Schizophrenia” he describes the knockout punch of schizophrenia: “Those of us who have not had this disease should ask ourselves, for example how we would feel if our brain began playing tricks on us, if unseen voices shouted at us, if we lost the capacity to feel emotions, and if we lost the ability to reason logically.This would certainly be burden enough for any human being to have to bear, but what if in addition to this, those closest to us began to avoid us or ignore us,to pretend that they didn't hear our comments, to pretend that they didn't notice what we did? How would we feel if those we most cared about were embarrassed by our behavior each day?”

So there are a lot of reasons, to my mind, for the person who realizes he or she is not thinking clearly or feeling right to act contrary or belligerent. And several reasons why they'll defy others, like parents and doctors, to take medicine when it's urged on them. Sometimes we've found it takes a friend or trusted medical professional to step in and make the visit with them to the clinic or doctor's office. It's always worth trying to get them there, whether it's their lack of self-awareness or just contrariness that keeps them aloof, arbitrary and unwilling to go along with what we want.(Roy Neville)

When they don't know they're ill, how can we blame them for what they do?

All together now, say Anosognosia!
This little poke at the establishment divides itself into two parts:1) questioning the claim that anosognosia is a brain disease that psychiatrists say shows that many people with schizophrenia and bipolar disorder can't understand that they are mentally ill. And 2) whether we are correct to let people with an intractable brain disease be freed from responsibility for their acts.

First, according to the neurologists, we seem to be talking about those with a brain “freezeup”-those who are so out of reality they don't know they are sick. And therefore they can thwart the norms and rules of society, refuse to take medicine, fall under the spell of their hallucinations and run afoul of the law. They don't know what they're doing, so why blame them? Well, they may just know more than researchers say they do.

In my experience, for the minority of people with schizophrenia who are profoundly affected, I find people do not act so blindly. Instead, I think they know they're different but they can't change their thinking and behavior--it's wired into their brains. And it's reinforced by society. They won't admit something is wrong with them because of how we react to them. They don't like what medicines make them feel like so they won't take them. They are non-compliant on purpose, not innocently. They can be manipulative and forcefully clear in expressing what they want and don't want to a doctor, counselor or disputing parent. We observe them as young men and women fully able to draw themselves up with whatever dignity and self respect they have to tell off their doting parents and doting doctors and underage social workers. We keep trying to change and repress their behavior. They want to have a good time now and then by drinking beer or smoking a joint. And they catch hell. “What do you want from us?” they seethe. “Look at the life you have for us.” I heard it the other night at the relatives support group-- a parent told how his son screamed back at him: “You don't know what I'm feeling! Give me some space!” Yep, they need space.

And if they are ill, should we hold them responsible for their acts?

This is sanctified territory to talk about blaming. Does someone's mental illness relieve him of responsibility for his acts? That is, is he helpless to change his ways because of a disorder called anosognosia? I think we have to accept that some people because of the illness, whether they know what they do or not, must be treated differently in society and under the law. And our courts are trying here in Schenectady to make allowances, to provide alternative hearings and sentencing and substituting treatment for jail when possible. The prison system hasn't awakened yet, it still treats prisoners who are mentally ill with disdain and a harshness unreserved for any other group; its use of solitary confinement for large numbers of these prisoners is one of the great injustices of our times.

In many other respects people with mental illness are expected to conform to society's rules and norms. We want them to thrive, live among us as independently as possible, accepted by their neighbors, landlords, employers, shopkeepers. Blessed with good treatment, most people with severe brain illness can at least partially recover, reshape their behavior and become responsible citizens.

Still, we know those with schizophrenia and the other severe mental illnesses lack insight, they lack skill in judgment, they act impetuously, they think in their own confining terms and fail to see the larger world around them. Those traits usually don't disappear and mean that someone who is brain-disordered will need life-long help and support. Those who can't live safely and peacefully in society may need to be separated from the others, in humane ways. In NY State we have Kendra's law as a method of shifting someone into outpatient treatment and then into more confined care if he doesn't respond to treatment. Even then, say advocates of a sterner policy, those who demonstrate they are dangerous should not be allowed to live among us. Too many tragic episodes are the clear result of not identifying these individuals ahead of time and putting them in custody.

The view is demonstrably contrary to law and policy, how the courts have ruled on these issues and how police agencies enforce the law. It's the most common complaint heard from families of the mentally ill around the nation that the state won't act to protect their son or daughter, husband or wife from hurting themselves or others. Rising against this are assorted voices in the consumer movement, unwilling to accept that dangerous behavior of a few threatens all of us. They oppose all restrictions on individual liberty and will accept the occasional violence and other personal tragedies as costs to be borne in order to uphold one's priceless liberty. But by letting someone off the hook, they breed contempt for the very people they seek to defend. Society, too, must be blamed for failing to come to grips with the reality that these powerful diseases have devastating effects on the mind. (Roy Neville)

Paying psychiatric patients to take medicine raises ethical questions

Here's an article in Treatment Advocacy Center e-News about a team at Queen Mary Hospital in London starting a study of the effectiveness of paying patients with schizophrenia and bipolar disorder to take their medicine. It's not a new idea, points out E. Fuller Torrey, the psychiatric researcher who has written the article and advocates for it. The 136 patients “have a very poor track record for taking their medication” and are all on long acting antipsychotics which they receive by injection every two weeks or so, Dr. Torrey explains. Half of them will be paid about $24 each time they come in for their injection and half will receive no money and will thus be controls. Both groups will be followed to see if the payments make a difference in preventing relapses and rehospitalization.

Now I know it's a common practice in research but it feels wrong. Let me start with the question: Why would you pay people to do something they don't want to do as much as you want them to do it? Some answers: the benefits outweigh the costs. The procedure does no harm. The researchers achieve their objectives. There is freedom of choice for subjects not to take part. And when it comes to severely ill mental patients, say researchers, they may not have the ability to judge whether the transaction is good for them or not because their brains are incapable of doing so (a tack that is also used to permit forcible hospitalization of some patients who might be a danger to themselves or society).

My discomfort is that these acts violate the ethics or morality (take your pick) we live by. Ideally we avoid exploiting groups of people like prisoners or hospital patients or nursing home residents, or even giving the perception of doing so. Who said exploitation? Don't they give up some independent choice to abstain from the research offer? Isn't the offer to pay to take your medicine a more subtle way of coercing behavior that does violate ethics in which people should be free at all times to reject the offer? When you pay people to do your bidding, you expect something in return and that includes more than docile acceptance of the terms of the deal. The patients or prisoners in the study are now part of the program, not really free to criticize it or influence others about going along, and they are faced with the anxiety that they can be punished for doing so (or kicked out of the program). Those who refuse to join not only give up the cash but have to wonder if they will be recriminated against by their superiors and “outed” by their peers. People in institutions think this way.

And those in the programs find ways to circumvent the rules. I seem to remember that someone proposed to pay patients at the Capital District Psychiatric Center a few years ago to take medicine or give up smoking,one or the other. What happened, I think, is that those who joined in and followed the rules were paid but this backfired. Patients were using the money to buy cigarettes for themselves and their friends.

The moral objections I raise do have to balance out against the simple utilitarian value of carrying out research that matters and finding enough people to volunteer for a project. Hospital patients, prisoners and those in old peoples' homes are among the easiest to find and most vulnerable to exploitation, as history shows us. It seems clear if the studies will do harm in any way, such as using medicines or treatments on the patients without safeguards and full disclosure, or doing interventions that expose the patients' lives to others through publicity or shoddy record keeping, or interventions that lead to these patients being regarded differently by others in the institution, then there is moral liability on the part of the researcher. If not, paying them as an incentive to take part in scrupulous research seems consistent with common convention. For example, in the latest NAMI Promise (Syracuse) newsletter, SUNY Upstate Medical University asks for volunteers for a genetic study of schizophrenia. It says all you do is complete a questionnaire, participate in an interview and have your blood drawn. For that you are paid $50 for your “time and inconvenience.” Sounds proper enough, who can argue?

What about paying people to give up bad habits?

Just to carry this further about the questionableness of paying people to do whatever we want--like throwing off bad habits or conforming their behavior to the rest of us—I have some illustrations how this can go awry. Health and wellness are goods that we all strive for. The state plays a large role in promoting our good health. But should the state be judging cigarette smokers as evil, going to great lengths to penalize smoking? Should it impose harsh jail sentences on those who smoke street drugs, lumping marijuana in with far more potent drugs? We would do well to try to understand why so many people take illegal drugs in a speed-up culture like ours and expand treatment opportunities for them rather than impose jail on them for even minor offenses.

We have this terrible problem of drug taking. Young people in school and college flaunt the rules and defy the police and treatment regimes. Why not pay them to give up a street drug habit or cigarette smoking? It won't work--it takes more than small money to motivate people to get off drugs or smoking and stay off. The habits are too strong. Some will fall victim to their addictions. They can't get off the drugs without long term counseling and supports from those around them, perhaps a radical change in lifestyle and direction. They have to believe in the benefits of abstaining. We have to believe they are worth saving, not try to pay them off to give up such worldly sins.

Why don't we pay others to get rid of unwholesome behaviors? For example: pay prostitutes to use safe sex. It would make the profession quite popular. How about getting overweight people to cut down on food consumption? Wouldn't it benefit them greatly? Yes, but in a free society people can choose to overeat and ignore their health. Why don't we just pay people to be good? It doesn't work. There was a time when parishioners who confessed their sins had to buy indulgences from the church in order to receive penance for their sins. That brought on a revolution in the 1500s. It proved the church couldn't make people good by having them pay their way out of sinning and it left an indelible mark on church history.

The arguments go even farther afield about the folly of paying people to solve a problem. None is more upstart and outlandish than Jonathan Swift's proposal to have the poor Irish in his home country sell their infants to the well to do British to cook them up for a hearty meal or two, so the Irish can escape starvation. In his essay “A Modest Proposal” (1729) he argued that “I have been assured by an American of my acquaintance, that a young healthy child well nursed is at a year old a most delicious, nourishing, and wholesome food, whether stewed, roasted, baked, or boiled; and I make no doubt that it will equally serve in a fricassee or a ragout.”

And politicians who get caught in payoffs cross the line into bribery and corruption, when the public interest is involved. That's a long shot away from the more ordinary practices we've discussed but it shows the desire to pay people for their compliance in any setting often has a tinge of immorality about it. (Roy Neville)

Wednesday, October 21, 2009

Letter to John Allen and Tom O'Clair: rating the counties

Family and consumer representatives John Allen and Tom O'Clair of the NY State Office of Mental Health published a survey rating the counties by how many constituents sat on county community services boards and mental health subcommittees. The idea was to stir up interest, should the county be failing its responsibilities. The way they did it, compiling a staggering table of meaningless data, drew the remarks below.

John Allen andTom O'Clair:

I really don't see any meaning in the table you have sent out to the NAMI organization and its affiliates. Someone at OMH has spent a lot of time putting this together at a time when community mental health services budgets are stretched thin and there has been no growth in services to keep up with the population changes and to see that needed jobs are done by provider agencies. The county offices of community services are understaffed, positions are missing and go unfilled and county political leadership does not promote a vigorous attitude for mental health.

This fact gathering is a misrepresentation about the participation level of families and recipients as well as provider personnel. It has inaccurate data about their participation, about the numbers of meetings and frequency. The county by county scores at the end of the table are laughable attempts to show one county does better than another when the grades have no basis.

There is in fact, very little participation by families and recipients on these county boards and committees. In Schenectady I'm sorry to see things on the downgrade with fewer family members attending, almost no consumers, and almost no directors of agencies. This is a high scoring county in your estimation. Instead, there is low morale, even disinterest, I believe, because mental health budgets are kept low and the Office of Community Services can't staff up promptly. Meetings are infrequent and poorly attended by providers.

I'll tell you what's wrong here, besides wasting taxpayer money on such mind numbing number checking. The OMH has abdicated its responsibility to see that the county community services boards and mental health subcommittees act according to law and regulation. These offices are weak and unorganized. The meetings are held infrequently and not on regular schedules, often being cancelled. These are not formal meetings. there are no minutes kept, no votes taken, no agenda published. No attendance is taken, no written record of continuity as to what was planned and what was accomplished. So a citizen cannot tell what the community services board or its mental health committee does nor what it has done over the years to show for its meetings.

For that matter, most of the parents I meet with in family support groups over here wouldnt know there are such boards and committees and if they do, they do not show interest in joining them when we publicize them. Here's what I want to say. The parents are far more interested in the immediate problems facing them and their adult children with mental disorders. they crave more counseling, advice, talking out their situations, which keep changing, particularly when someone is losing touch and uncontrolled with their illness, getting in trouble with the law, lacking housing, needing medicine, looking for social security and medicaid benefits, trying to work free the bureaucracy and waiting lists to get what they need.

I know both of you are trying to help with those things. And we in NAMI and the hospital support groups go over it again and again. But these necessities are never ending. New parents come along with the same problems and need a helping hand all along the way, the kind of support we need from both of you, as well.

What's wrong is that these citizen boards are set up to see there is leadership at county level with citizens invited on them to see that the private agencies in mental health are doing what they're supposed to and they're properly funded. Without the exposure the agencies don't have to do as good a job or they're far less visible. That's why I write. People in need are being left out. A few years ago mental health subcommittee meetings were attended by many more agencies--in housing and homeless services, family and child, mental health clinic and hospital inpatient, crisis-emergency, Catholic Charities, City Mission, YMCA--as well as families and consumers. I can remember healthy debates about where our county was going and what was missing and should be addressed in mental health. People looked to the county agency to step up and lead. It's not happening now. You can't help feel the difference from a few years ago. (Roy Neville)

Do we need more screening of patients or more treatment?

The NY State Office of Mental Health has a gaudy document--a new set of guidelines for mental health clinic standards of care that is sure to impact on the mental health clinics up here. It's borne out of a planning document undertaken by a NYC team in 2008 meant to improve services to people with mental illnesses who are at risk for poor outcomes or violence. And that document came about after the woman died in the mental health unit of a Brooklyn hospital and episodes of violence seemed to engulf the city that year.

The OMH is taking up the new standards as part of its renewed licensing process. The idea is to help it decide if a clinic has high standards of care, just adequate ones or ones needing improvement, and if it's the latter, to push the clinics in the higher direction. That's all right but they put too much attention on testing and not enough on treatment, in my opinion.

To the OMH Office of Quality Management:

I have a response to the draft Clinic Standards of Care that you have put out for comment. What is being proposed that is new? Don't we do these things now, that is, question patients during an evaluation about mental health history, drug use, violent and suicide ideation, general physical health? If any of these are missing it's obvious the clinic should get its act together. But to propose a horde of extra features for clinics to follow in the column marked "exemplary" and insist these are the ones recommended for all seems extravagant.

It suggests that you've added sophisticated test batteries, the sort run by psychological testing companies and specialists and you've put more emphasis on quality control. While helpful I doubt if they are essential to the good working of a publicly subsidized mental health clinic. I think they are too costly to justify.

To my mind the real problems to be tackled lie in treating the assortment of people with complicated mental and physical conditions who come to the clinic nowadays. Particularly, those whose problems are largely sociological--stemming from their environment. Now, assessment is coupled with treatment. But it's only part of it and you can't have a treatment clinic that only does assessment. The clinic has to identify the most seriously mentally ill and sort them out from behavior problems like "problems of living"and those who come from stressful situations such as living in poverty, or homelessness or who are drug addicted, or sexually deviant, for instance.

I don't think the screening tests get at these kinds of people. Their main problems are simply outside the standard questions. For example, sexual offenders--what are the treatment options for them? Elderly people with dementia and/or serious mental illness require health care, housing and supports outside the mental health system; large numbers of teenagers and young adults have drug addiction and unsocialized behavior coupled with mental disturbance, coming from conditions in which they grow up; men and women coming out of jail and prison need to be reintegrated into society; people who don't speak English, and are among legal and illegal immigrant populations need all kinds of help, as do those with overlapping mental health and developmental and physical disability, and the people in outlying rural areas who can't easily access health care.

As I understand, more and more people are showing up with variations of mental illnesses and physical disorders which can't easily be separated out at a single evaluation. Yet each disorder needs to be treated in its own right. So the patients are presenting with more complications than formerly. And the screening tools won't make their treatment any easier, will it?

So I suggest instead of promoting more elaborate testing schemes for patients entering the system (while it's important to do evaluations right), what is needed more is for the state Office of Mental Health to add high quality staff to the clinics. We need better trained and better paid people working there, to do more than just offer talk therapy. The staff have to become more expert on benefits and entitlements like SSI and Medicaid; in how to place people in jobs, in housing and support services; how to help them find meals and food pantries, overnight shelter, where to get food stamps and cash assistance, child care, bus passes, an affordable lawyer, for example. That's what's missing now. And it's what gets them through a crisis or with confidence to face another day. (Roy Neville)

Tuesday, October 20, 2009

Custody bill re-surfaces in legislature

Should parent be forced to relinquish child to the state on grounds of parent's mental illness or mental retardation?

Bills introduced in last session of the state legislature (S2835 and A6668) over child custody and parental rights that remain alive in committee are drawing rapt attention of mental health advocates. The bills would remove mental illness and mental retardation as separate grounds for terminating parental rights under social services law, section 384b(4). About 40 organizations support the repealer bills, including NAMI-NYS and Mental Health Association of NYS, sponsored by Senator Shirley Huntley and Assemblyman Peter Rivera, chairs of the respective mental health committees. The state's Family Services Agency and a Homeless Coalition do not.

Social Services law section 384b(4) has four grounds for permanently terminating parental rights, the Mental Health Assn. points out in its advocacy brief: abandonment, permanent neglect, severe and repeated abuse, and “the parents are presently and for the foreseeable future unable, by reason of mental illness or mental retardation, to provide proper and adequate care for a child who has been in the care of an authorized agency for a period of one year.”

MHANYS strongly opposes 384b(4) because, it says, “it is discriminatory; decisions to terminate parental rights should be based on behavior and not condition; the substantive and procedural provisions are vague, subjective and easily misapplied, thus undermining the required standard of proof of clear and convincing evidence; and termination of parental rights is a drastic, permanent measure, severing forever a parent's right to be part of his or her child's life.”

Furthermore, "This statute was written prior to changes in mental health treatment promoting recovery and this statute is destructive public policy because parents are afraid to seek treatment for fear of losing their children and children are removed from families where there is no abuse or neglect.”

Well said. I think most NAMI families would agree. However, as I see it, the bill is not a “slam dunk.” There are reasons why some mothers with severe mental illness, who form part of a class of all mothers with mental illness, should not be the ones to bring up a child. Young mothers, particularly, and those with a first child, may suffer from the trauma of having given birth and the enormous emotional changes to their bodies by becoming a mother. For weeks or months after the baby is born, she will typically be monitored by the followup social workers to see if she demonstrates if she can adequately care for the baby. In many cases, I believe, mothers who are sicker than some others will prove to be poor care givers, because they cannot take care of their own lives and cannot possibly take care of another.

They may or may not love the baby—they simply lack responsibility. We see this over and over. A young mother may be re-hospitalized. She may have intruding relationships with boyfriends. She doesn't show good judgment. These traits are to be expected for someone single and on her own. But someone who is so burdened by her own life crashing around her, is a good bet to fail the child or harm it or temporarily abandon it, and we can't have that. This isn't so rare at all.

As evidence, the bill states that there is “an alarming rate of custody loss among parents with psychiatric or intellectual disabilities—as high as 80%. (Does this mean, 80% of such cases before a judge?) Statewide, about one-fourth of foster care placements involve at least one parent with serious mental health problems.” Does this indicate that taking custody away from a mentally ill mother is discriminatory? The bill also explains the high numbers. It finds “parents with disabilities are particularly vulnerable to loss of custody and termination of parental rights due to preconceived notions about their ability to parent and the focus on their diagnosis or condition, rather than their behavior, that is, ability to parent.”

It adds: “Parents with disabilities are not more likely to maltreat their children than parents without disabilities. There are many other factors that can be contributing which are not singled out in statute. Rather it is the behavior itself which should be the basis for termination of parental rights, not the condition.” The bill further contends “the law discriminates against parents with psychiatric or intellectual disability by not requiring the Dept. of Social Services agency to show that it made diligent efforts to reunite the family."

While my personal experience is based on a single case and I would differ with this evaluation, I support the contention that courts in these cases are stacked against the hapless single parent facing so crucial a test with very little on her side. She may be guilty about what she has done or not done, but she and her lawyer probably have little on which to support her case. The facts are that too many of the mothers lose their child, who shouldn't, even if it is justified in some cases. (Roy Neville)

Monday, October 19, 2009

Federal judge rules against state in adult home case

What happens now?

This is a major triumph for the advocates and for Cliff Zucker, lead attorney at Disabilities Advocates, Inc. of Albany, which brought the landmark suit that now has supporters begging the governor not to appeal the decision. We refer to the ruling in September in which Judge Nicholas Garaufis of the federal district court in Brooklyn ordered NYS Governor David Paterson and commissioners of the State Health Dept and Office of Mental Health to find more suitable, integrated housing in the community for some 4,300 mentally ill residents of adult homes in NYC. The decision applies only to those larger, named adult homes that have at least 25 percent of residents with mental illness, called “impacted” homes. Many patients were placed there by the NY State Office of Mental Health as it emptied out its state psychiatric hospitals starting in the 1970s. While the ruling doesn't apply to homes other than those in the suit, it is seen to have wider implications.

According to the court document, these facilities which house former psychiatric hospital patients lack the staff and resources to provide integrated housing and services to promote community living. The court concluded that virtually all of the constituents are qualified to receive services in supported housing, “a far more integrated setting in which individuals with mental illness live in apartments scattered throughout the community and receive flexible support services as needed.”

The ruling says that the people in these homes should have access to all the services and opportunities of others living in the community and they do not do so now. The adult home prevents them from living in the most integrated setting possible, which is a violation of the Americans with Disabilities Act and the US Supreme Court decision in the “most integrated setting” case. The judge called the residents “psychological prisoners of the homes-- rarely going out for a meal, a walk in the park, going through a charade of rehabilitation, being herded into lines to take their medicine.”

Mr. Zucker, who heads Disabilities Advocates, a federally sponsored protection and advocacy law firm that has taken other class action suits on behalf of the mentally ill, filed the suit in 2003. While we commend him and the victory in this case, one wonders if the judge got it right. First, we notice the difference in the age group—residents in these adult homes are mostly over 60, while those placed in supported housing in our communities are more apt to be young people 18 and over, but seldom 60. Second, people who live in adult homes are in need of daily support services like showering and dressing, they get medication assistance, often get transportation to appointments and they eat meals in a common dining room. They must be ambulatory and continent when they enter the home even if some of them become incontinent once there. Some use a walker.

In contrast, residents in state-supported apartments may only have a case worker visit them once a month to check on them. They're on their own for meals and getting around. People wouldn't be placed in these apartments if they're incontinent or non-ambulatory. So how can the judge glibly find that these residents of adult homes can easily move into the lightly supervised apartments? The fact is, the alternate places don't exist at all—demand has exceeded supply for years and the state has tightened the apartments allotted to the counties. Schenectady County was only given six units this year and fewer in the last few years, with a far higher waiting list.

The non-profit housing sponsors won't even take the money to open new supported housing in counties north of NYC, with exceptions, because the stipend is so small and rents have climbed out of sight. So the housing companies have actually not renewed some apartments and frozen out their tenants. Could that happen to residents out of adult homes? Remaining state-backed housing for the mentally ill--licensed group homes and treatment apartments, are few and far between. The state would need a whole new housing regime to go ahead with more of them. So any newcomers will find a long wait even if the state makes a much greater investment in its housing opportunities.

Besides the shortage, some of us have continuing doubts about the judge's ruling. Families quoted in the NY Times Oct. 8 gave mixed feelings and some had fears that life on the outside for residents might prove difficult or even dangerous. The Times article says relatives are in a quandary because they have little or no power to dictate where they belong. They are not considered dangerous to themselves or others and are legally independent adults. The families do not support the homes, however. One of those quoted is Florence Weil, who as a NAMI member on Long Island has advocated for years for stricter state standards for the homes. She visited them, inspected records and testified before legislative committees. Little was changed in the face of the powerful adult home lobbies. And back in 2002, the homes received a scathing report in articles by Cliff Levy of the NY Times. The articles pointed to chaos in the sprawling homes in NYC, telling how those living in the worst homes were abused and neglected and f'orced to take medical treatments they didn't need.

Meanwhile, in an op-ed in the NY Post, E. Fuller Torrey, a well-known advocate for the mentally ill, calls the judge's decision “well-intentioned (but) will ultimately mean disaster for New Yorkers.” Torrey sees large numbers of untreated ex-adult home patients roaming the streets, winding up in shelters and jails. He blames the state Office of Mental Health for shifting state mental patients from hospitals to the adult homes starting in the 1970s. “What Judge Garaufis should do,” Torrey argues, “is to order the state to clean up the adult homes, limit their size, and set up a program of unannounced inspections by an independent state agency. Instead, he threw residents out on the street.”

Judge Garaufis hasn't ruled as of Oct. 20 on a specific plan to remove the residents or whether the homes can admit more mental patients. NYS OMH is said to be evaluating its options. While most of us would find closing the worst homes a godsend, the questions are how will these frail and elderly residents fare in the move outside the walls and will the state follow through in such precarious economic times. (Roy Neville)

Friday, October 16, 2009

Demise of the family-initiated housing model for people with mental illness

You must have heard about the family sponsored housing model for those with mental illness. Starting about six years ago, in 2003, a group of us in the Albany-Schenectady area met over and over to discuss plans to make this a reality. We would dedicate our own home or purchase a home together, or leave our home in an estate trust, to our own mentally ill adult child so he and others like him could live there. A not for profit housing sponsor could run the building or we could form a management group to do this. If the building itself was considered unsuitable, an agent could sell it and buy another, or an apartment or condominium that would fit the bill for our surviving mentally ill relative and perhaps another person chosen to live with him or her. The scheme would solve the impending problem of where will our mentally ill relatives live after we are gone, if they can't find government subsidized housing (or are thrown out of it) and can't afford an apartment on the private market.

We thought we had the answers. We went over all the details—about how to buy a house, set up a trust, decide who is to live there and by what rules, who operates the house, who pays the bills, whether this is wanted by our children, and is it financially feasible or just pie in the sky? We had a consultant at most of our meetings over the years 2003 to 2006. We invited in prospective partners from community agencies and a funding source to study more carefully the whole idea of families creating housing with all the risks that entailed. Why would we put money down on a house or leave our house in trust so that others who we may not even know would live there (with our own mentally ill relative)? It still made sense because we thought we could do it better than the government or even the housing providers, given our lasting devotion to our loved ones with these awful illnesses of the brain.

To explain our ideas to others I wrote up the family initiated housing proposals in the NAMI NYS newsletter, we talked it up at NAMI NYS meetings, and we met twice with members of the NY State Office of Mental Health, who responded with encouragement but no pledges of money. At one of our statewide NAMI conferences we held a workshop about this and received dozens of signups from other families who felt the same need and wanted to hear more about our plans. People called us from New York City to ask if their child could come to live in our house once it opened. All this was a harbinger for success. We only had to find the right house to buy or leave one to posterity to make a go of it.

Here is my story--the others have their stories, too. Back in 2003 I decided to buy a house for my son to live in with others like him who are mentally ill. I had the money, housing in Schenectady was quite cheap and I thought I knew the city well enough, as I had lived here over 40 years. Also, like the others I felt a need to secure a place for him (he has a sister who also is mentally ill and she might need a place, too) and there could come a time when the apartment he lives in will no longer be available or he will want to leave. I pictured various alternatives: a big old boarding house for men who could play pool and cards and the like; or a two-family house with men in one unit and women in the other; or a family type home for three or four with a live-in caregiver to be hired; or I buy the house and turn it over to a not for profit housing corporation in mental health to run and take care of the building. I talked to local directors of housing programs and to several parents in the NAMI orbit. While the parents expressed interest, our adult children didn't always seem good matches to live together—the first obstacle.

Toward the end of 2003 I put money down on a two bedroom flat near Union College, had a consultant look over the building and declare it in need of massive rework, so I got my money back. Once again I found a house I liked in mid-city and put money down, hedging my purchase on the need for a new driveway. The owner balked, so my check was returned. The third house on which I signed a purchase agreement proved successful. It was a large two-family in a nice section surrounded by single family homes where families raise their children. I didn't think it appropriate for a house full of mentally ill people to move in there. We shun discrimination of any kind but I had to know that placing disabled adults in a building alongside single family houses with children on a lovely tree lined street is a sensitive matter. You don't do it. So I rented to two families with children and put off my plans.

I thought if one of my tenants moved out I could reconsider leasing the apartment to two or three adults with mental illness. (If you saw our last newsletter for September-October you would have read about my trials this summer to rent to a disabled couple with children in the Section 8 housing program with the Schenectady Municipal Housing Authority. (See namischenectady.org for newsletter.) While the couple didn't eventually receive the apartment I was ready to face the questions: could they afford monthly payments even if the government pays all but 30 percent of their income for rent and utilities? Would they take good care of the building? Would they get along with neighbors? The important thing was that they badly needed a better place to live. They simply lost out to another bidder as time went by and I had to rent.

That was close. It almost worked, although the public housing agency had some crusty rules to break through. The MHA would have paid most of the rent up front, to my advantage. It does not provide case management however. If we are honest, we know people with serious mental illness often don't take care of their room or apartment. I would have had to secure extra help from one of the health care agencies to look in on those tenants. They have occasional crises and someone should be on call when they arise. As the house is in my name, or a trustee, one of us is responsible to see the house is kept in good condition, we must pay for maintenance and repairs, insurance, property and income taxes, and anything else. I think that few people with serious mental illness, the ones who need housing the most, can live independently without home visits from case workers. We know that things break down and emergencies arise from time to time unless there is professional assistance and this can be very costly.

If we turn ownership over to a not for profit housing provider, it generally wouldn't pay property tax or income tax on the property. That means it doesn't have to charge a high rent as we would have to do to cover taxes, mortgage and insurance costs. Our class of tenants have small incomes and can't pay rents of more than $400 or $500. The provider company conventionally makes repairs and provides at least minimal case management. But our group of parents couldn't agree on employing a housing provider and so we fell apart on this question as well as our children's incompatibility to live together.

We also failed to see how difficult it is for two or more of us to go in together to buy a house. With multiple owners there are bound to be disagreements about paying the bills and sharing the load. We wondered what we would do if one or two owners backed out of paying the mortgage or making lease payments, leaving someone else holding the bag. We really would have to own the property singly and that would exempt the others from having a voice in how it is used. We'd end up taking care of our own child at the expense of any other people in line for the housing plan with our design.

Meanwhile, house prices kept rising, reducing our options. Why not sell the house on the private market and use the proceeds to buy a condo or lease an apartment for our disabled son or daughter? With a special needs trust, the assets of the sale are safely invested for the disabled child for his lifetime and we can feel secure. But if we are to do so, we haven't helped solve the housing crisis for any of his comrades. We haven't lived up to the pledge of making this work out together, as families who cherish our children, know their vulnerability and fear they may become homeless in an uncertain future. The government can't be trusted to find enough housing for all those with severe mental illness. We hoped to copy the example of parents who joined hands to open homes for their mentally retarded children years ago.

But our children are significantly different. They won't agree to live where we want them to. They pick their own friends and roommates. We've had to realize the simple prospect of leaving our housing to our own kind won't even work if the child doesn't want to live there. And combining our effort with that of our friends makes the enterprise even less workable. We'd have to devote too much time and money and we're not meant to be business partners or know how to keep up a house. It's discouraging to realize we've failed. (Roy Neville)

Wednesday, October 7, 2009

Looking at the state's latest mental health master plan--Toward The New Jerusalem

The state just issued a draft in September of its latest five year projections for mental health services, called the 5.07 plan. This year's master plan is full of words like recovery, resilience and transformation, all pet expressions of the state commissioner of mental health, Michael Hogan.

These odd terms are at the core of the latest planning approaches and reveal a lot about what the agency thinks it is doing. Things start off with:“How do we create hope-filled, humanized environments and relationships in which people can grow?”

The commissioner replies forthrightly: “At the Office of Mental Health, we each find our own meaning in recovery and resiliency. At the OMH our embrace of recovery and resilience recognizes two truths. First, they each reflect a journey rather than a destination. Recovery is not remission. It is not a miracle cure. Rather, it is the process of living a good life despite illness and loss.”

He goes on to say, “The second truth is that recovery and resilience each depend on change made by the individuals involved. Treatment can help. Indeed, for most people, finding the right treatment is a foundation of recovery. But treatment alone is almost never enough. The recovery journey requires personal engagement and action.”

So it goes. We are on a journey toward transformation into better selves. We can pull ourselves up and out of our malaise if we see the light. Others have done it—read their stories. We can kick the habit of street drugs and alcohol, wake out of our stupor, start a brand new life, if we choose.

Maybe. The agency isn't really talking about people with schizophrenia, is it? The word is almost never mentioned, nor is bipolar depression nor any of the illnesses associated with emotional pain and suffering that can last a lifetime. These are the illnesses that may take another half century or longer to figure out and now offer few clues as to their origins, how to cure them or ease the suffering of victims.

The illnesses not mentioned are the ones most difficult and costly to treat, the ones that engender fear and distrust because people with severe brain illnesses can't always control their behavior. The seriously ill may not be on the OMH's radar anymore, along with people who are homeless, in jail and prison, on probation or parole, those with long or repeated hospital stays, who tie up emergency rooms and create problems for nursing home operators. There's a slew of severely mentally ill people who don't receive services and who never will from an agency that thinks the diseases are volitional—that is,where someone only needs to find the motivation to change their ways, find a job, or stay “clean”.

It's a mistake, I believe, when the planning is all about health and wellness and not illness. The book gets stuck on words like resilience and recovery, much like a sermon on Sunday morning. It wants us to believe there's a New Jerusalem out there, a shining light on a hill, a transforming vision of who we are and what we can become. If only we follow the precepts and guidelines of our benefactor, the state.

I'm being sarcastic because I think their stand has too much art in it, it's a smokescreen, part of a political strategy. In truth, they're cutting back millions of dollars in spending for community based mental health—where labor costs are high and some in the public and the legislature don't believe the money is well spent now.

As we suffer from stigma and disgrace, and the population of seriously mentally ill continues to grow, in the matter of spending on needed community services, the state capitulates, closes continuing day treatment programs, eliminates a valuable program called COPs, exerts pressure on the housing providers in order to recoup its so called “excess” Medicaid funds already spent by the group homes. Meanwhile, the state hospitals at OMH direction, refuse patients coming from psychiatric units of general hospitals who should be confined longer, in an unabashed policy reversal to save money

Much is said in the document about restructuring mental health clinics to see that their role is clarified and pay is better. Hospitals with psychiatric units are to receive rewards also. However, the state will continue to shift the locus of care from hospitals, nursing homes and adult homes to the community, without the money alongside. For children and adolescents, at least, there are more in-home services.

With all the emphasis in this document about mental health being an intricate part of general health and how problems are prevalent and troubling, we don't get a picture that they're going to make any frontal assaults on the barricades. “Gaining access to good care is like running the steeplechase--a long process with too many barriers” someone observes.

As to the state's vision, we are asked “What does good mental health care look like?” The reply: “Good care is accessible, personalized, continuous, and integrated, and it emphasizes the ability of each person to live, learn, work and participate fully in his or her community. The best of treatments, including medications, evidence-based behavioral intervention and psychotherapy, do not cure mental illness. Rather, they help people manage their symptoms.” And the new thrust helps people find the motivation.

That's as good as it gets in terms of a modest self appraisal. But we know how much more needs to be done to assure access and affordability of services and facilities. Too few with a serious mental illness hold jobs, live in decent housing, have companions and earn any real income.
Some topics are missing. For example, in the criminal justice arena: Why aren't steps taken to follow through under the law to take mentally ill prisoners out of punitive special housing in prisons? Why don't more city and town police officers receive inservice training from state and county mental health personnel? Why has OMH let the legislature put convicted sexual offenders in parts of some state psychiatric hospitals?

The plan does state that these are harsh economic times and budget cuts have stopped some progress. But it seems mentally disturbed people who are homeless or in jail or prison, who have significant physical problems as well as mental, who are elderly or frail, or stuck in nursing homes and adult homes, aren't attractive to the new creed. They're not included among the groups destined for recovery and we don't hear much about them in this document. .

The 5.07 plan doesn't really deal with them at all, yet they represent a good proportion of the state's troubled mentally ill. Some are wrongly confined in nursing homes in NY City, as a federal judge has recently ruled. It will take more than appeals to the soul to provide more spaces for these adults, to keep up with population growth, to serve veterans, the elderly and others—and this is the responsibility of the state Office of Mental Health. And it will take more than resilience to get it done. (Roy Neville)

Tuesday, June 2, 2009

Dr. E. Fuller Torrey--3

How does it feel to have schizophrenia?

“Surviving Schizophrenia,” first published in 1983 and now in 5th revision, is the bible for families who have lived with someone with that particular mental illness. It defines what schizophrenia is and is not, how it is treated, what causes it, what are the courses and outcomes, what comes after, it handles questions from consumers and families, and advises on how to be an advocate. I thought it's worth rehearsing what this wonderful book has to offer, whether you're directly involved or a casual reader.
First, the book is written in a style that's clear and easy to understand without condescending to the lay reader. I find it has the best explanation of how you would tell someone what schizophrenia does to you, what it must feel like. You might be a high school kid feeling your brain is suddenly crashing in on you, or you're a parent or sibling and want to know how you manage when your close relative is going through the gyrations of an upset mind where thinking and emotions go haywire
Families are up against these wild and stressful situations and Dr. Torrey is sympathetic to all of this. We hear of so many of their tragedies and triumphs at the relatives support group meetings inside Ellis Hospital Psychiatry on a weekly basis. Some, at least, report schizophrenia in their family, while there are more reports of bipolar disorder today and a lot of cases of teenage depression and among young mothers and some old folks. Each of these illnesses come and go, flare up and die down, or stick around, so you may need to know about public mental health services here, how to obtain maintenance medicines, come in for counseling or entitlement programs, among other things. Torrey goes through those, too.
Look--when a disease like schizophrenia first strikes it's terribly distressing because no one knows what to do. There are weeks and months of waiting to see if symptoms are confirmed, to see if medicines work, to find if the individual can get back on his feet and recapture his life. Young people who are resilient enough usually can go back to their jobs, drive a car and look after family responsibilities. But some will be hit harder. Every semester, it seems, a young man or woman drops out of a local college and is hospitalized. Will he or she go back to school? Some do.
Torrey's book is particularly helpful to young people, first time sufferers.
Some of us have gone in as a team to the high schools in this area to talk to students in health classes and read passages from Surviving Schizophrenia. The idea is to tell them these diseases strike young people their age or a little older, it's a no-fault brain disease, and you can get help. You should tell your parents and school counselor if you're feeling the symptoms. There is medical treatment in the community.
How must it feel? Torrey explains that it can have devastating consequences:
In an early chapter, he writes: “Sympathy for those afflicted with schizophrenia is sparse because it is difficult to put oneself in the place of the sufferer. The whole disease process is mysterious, foreign, and frightening to most people. It is not like a flood,where one can imagine all one's possessions being washed away. Nor like a cancer, where one can imagine a slowly growing tumor, relentlessly spreading from organ to organ and squeezing life from the body. No. Schizophrenia is madness. Those who are afflicted act bizarrely, say strange things, withdraw from us, and may even try to hurt us. They are no longer the same person—they are mad!”
“Those of us who have not had this disease should ask ourselves, for example, how we would feel if our brain began playing tricks on us, if unseen voices shouted at us, if we lost the capacity to feel emotions, and if we lost the ability to reason logically. This would certainly be burden enough for any human being to have to bear. But what if, in addition to this, those closest to us began to avoid us or ignore us, to pretend that they didn't hear our comments, to pretend that they didn't notice what we did? How would we feel if those we most cared about were embarrassed by our behavior each day?” Torrey asks.
We tell the kids they shouldn't make fun of others they see acting odd in class because it's not the individual's fault. We say treatment works most of the time for most people.
Torrey goes on to explain the symptoms of schizophrenia, citing the hallmarks of hallucinations and delusions and the difficulty sufferers face in interpreting and responding to auditory and visual stimuli. Someone may have difficulty concentrating on schoolwork or even watching TV. He or she may withdraw from friends, sports and school activities and change their personality.
In regard to treatment and the impact of the illness on society, Torrey picks a fight with many of his colleagues. He argues that schizophrenia has to be treated with medicine, not talk therapy, and those unable to be treated successfully must be put aside from society (hospitalized or segregated). Those opposed to this view, he believes, are creating the dangerous situations that lead to innocent people being harmed or killed, including the sufferers themselves.
Torrey takes a whack in his book at the lack of involuntary treatment laws that would take the most vulnerable patients off the streets, those at risk of hurting themselves or others. Stubborn laws prevent these sufferers from obtaining the treatment they need, he writes. (NYS has Kendra's Law, a model for the states and a brainchild of Fuller Torrey's.)
He is ever alert to the realities of mental health services in poor communities and among minorities. He is appalled at the tragedies of the homeless and untreated mentally ill who show up in emergency rooms and jails and prisons. We are urged to act more aggressively in our advocacy to get better mental health housing, treatment and support services for this population.
And he recognizes how powerful the stigma against mental illness is for families and individual sufferers. He's devoted to erasing that.
(For more information about NAMI locally and at state and national levels, call our phone number listed on the website. And be well.) (Roy Neville)

Monday, June 1, 2009

Dr. E. Fuller Torrey--2

NAMI's top advocate takes them all on

Meet E. Fuller Torrey, the heart and soul of the NAMI family movement and a world class advocate committed to eradicating schizophrenia,
Some call him flamboyant, dogmatic, shrill. He has always walked the straight and narrow in seeking recovery of severely mentally ill persons. He espouses the medical model of care and he will fight anyone, particularly the radical mental health consumers, who defies his belief that someone who can't live safely in society should be hospitalized or given priority for outpatient services.
That's his main calling as an advocate, I feel. As a researcher he can go into brains and he can claim there's a cat virus that may cause schizophrenia but from his political pulpit he mainly wants untreated mentally ill people taken legally into custody and not let loose on our streets. And he wants state laws changed to make this readily available.
Back in the 1950s his sister came down with schizophrenia as she was about to enter college. Dr. Torrey was aghast at the fake theories then prevalent about mental illness, inspired by the Freudians. He didn't believe that schizophrenia was a product of poor parenting nor that their mother was to blame. He never forgot his sister and has continued to visit her in Utica where she resides in a state hospital today. His sister's illness started him on a career in research into schizophrenia and on the way, he emerged as a leading advocate for the families of sufferers with mental illness.
Dr. Torrey is known as quiet and refined in private. But up front at the NAMI meetings he acts like a tiger (or wolf). I'm reminded of the times we saw Dr. Torrey in Washington and other cities. At one of these a few years ago we sat in a crowd of about 100 waiting for Fuller to appear. We all donned white tee shirts with a black wolf's emblem on the front. When he came down the aisle we howled and moaned like werewolves for a few delirious moments. He told us up front we have to fight harder, attack like wolves, if we're ever to change backward government policies toward the mentally ill. We greedily growled our applause.
Along the way there are a lot of other things he wants. He argues vehemently for a sufficient mix of community mental health services, including assertive community treatment, clubhouses, supported housing and supported employment, emphasizing illness and medication compliance throughout (see Wikipedia article on Torrey).
Many of us in NAMI follow the same lines, honor Fuller Torrey, but have learned something of his penchant for adoration and his snippiness toward dissenters. Despite a fruitful career, Fuller Torrey has a mixed reputation. Unless I'm mistaken, he's thought to be somewhat of a gadfly in the political arena.
In his time he's taken them all on, friend and foe:
--The NAMI crowd separated themselves from Fuller Torrey several years ago because of his reputation for disagreeing with others, particularly on the consumer issues. So he set up the Treatment Advocacy Coalition to take a harder line advocating changes in state laws that would force states to offer at least some limited form of involuntary hospital treatment (like our state's Kendra's Law). He called out NAMI leaders last year for backing the findings of a national study that supported some second generation medicines for schizophrenia, claiming they were reluctant to oppose drug companies who donated money amounting to more than half of NAMI's budget. He did accept an award from NAMI at the 2007 national conference.
--He has opponents among his old research colleagues who think he's all wet with his cat virus theory.
--He has urged Congress to put the National Institute of Mental Health (NIMH) back into the National Institutes of Health (NIH) which receive far more research dollars and have more political clout. And he's embarrassed top dogs at the NIMH, where Torrey worked, and Center for Mental Health Services (CMS), whom he charged with having a 1960s hippie mentality against medicine. He complains the CMS has wasted money on studies of pigeons' sex lives, for example, and paid for anti-psychiatry groups, while not focusing on severe mental illness.
--He thinks the states, not the federal government, should be where mental health policy is centered. But recently, and pointedly at NY State, he contends the Office of Mental Health has done too little and should be folded into the state Department of Health, which administers most of the spending anyway through Medicaid.
--A few years ago while on the board of directors of the prestigious Sheppard Pratt Hospital in Maryland, he is alleged to have prevented another researcher from joining the hospital staff because of their opposing views on the rights of mentally ill people to refuse treatment.
--Dr. Torrey is most furious about restrictive state laws, the result of federal court rulings in the 1970s and later, that prevent seriously mentally ill people from being admitted to hospitals or clinics for mental health treatment. These civil rights laws have sparked controversy around the nation and prompted Torrey to found the Treatment Advocacy Coalition about 10 years ago. TAC has advocated for states to pass assisted outpatient treatment laws, which give priority for someone acting out disruptively in the community to receive at least clinic treatment and medicines. In NY State this is known as Kendra's Law, passed in 2001 and a model for the rest of the states. Opposition still exists to these laws because they can legally force someone into treatment. When two mentally ill men were shot by police last year in NY City, Torrey penned an article in the NY Post headlined: “Deadly Madmen--Mental Health System Still Lets Them Roam.”
--He has harshly criticized state mental health officials for lack of community mental health services, including mental health courts and diversion from jail, police crisis intervention teams, drug courts, and shortages of housing and psychiatric beds available in emergencies. He blames today's epidemic of homelessness, violence and medication noncompliance among the mentally ill on the failures of governmental leadership. He finds that most of the violence occurs among those not in treatment.
--Torrey has also tilted over the years with the anti-psychiatry crowd including psychiatrists like Thomas Szasz, who think schizophrenia isn't a real illness, and with the neo-Freudians, whom he exposed in his book The Freudian Fraud.
The good doctor with the illustrious career is so thoroughly devoted to causes the families hold dearest, it's too bad we don't revere him more, instead of picking at his failings. (Roy Neville)

Dr. E. Fuller Torrey--1

The cat virus theory of schizophrenia

Dr. E. Fuller Torrey is the guru of the NAMI family movement. Over the past 50 years he has investigated mental illness, researched the causes, worked on the wards at St. Elizabeth's, worked for the National Institute of Mental Health, run the Stanley Medical Research Institute in Bethesda, Md., where they do brain studies, founded the Treatment Advocacy Coalition (TAC), which advocates for states to change outpatient treatment laws, all the while speaking out and writing books and articles at every opportunity. Many see him as the most provocative and accomplished psychiatrist in America.
He does all that with a passion and personality that gets him both high praise and in a lot of hot water with his allies and coworkers, his friends and supporters, and his bosses in top circles in government.
So we have a controversial genius moving on his own mad track to discover the connections of infectious agents with schizophrenia and bipolar disorder--the severest and most exasperatingly hard to understand of the brain disorders we call mental illnesses. And he's our man.
Here is a short recital of some themes in his research focus. (Learn more from Wikipedia—the internet encyclopedia; also from an interview with Fuller Torrey on SchizophreniaConnection.com (August 26, 2007); an article in NY Times Magazine, Feb . 22, 1998; and an article in Stanford Magazine called Brain Storm, Jan-Feb. 2003.
You can pick up almost anywhere with Dr. Torrey's amazing history. First, his fascination with the cat theory, a zany idea both for those who might own a cat and not have the illness and for those who have the illness and don't own a cat:

The cat virus connection
Fuller Torrey thinks viruses spread schizophrenia and bipolar disorder; specifically a domestic cat parasite called toxoplasma gondii. As reported, he says: “We've done two studies on exposure to cats in childhood of people who have schizophrenia and it was increased. We now have 46 studies that have been done looking at antibodies against toxoplasma gondii in individuals with schizophrenia and they (antibodies) are clearly increased. If we're right on this, we are guessing that the transmission takes place probably early in childhood.”
The cat parasite can lead to toxoplasmosis. Up to one-third of the world's population is estimated to carry a toxoplasma infection. Torrey and coworker Robert Yolken publish studies on seasonal variation with the infections. They're even using toxoplasmosa gondii agents (antibiotics) as an add-on treatment for schizophrenia. He believes that infectious agents will eventually explain “the vast majority” of schizophrenia cases. Has anybody heard of that? Is anybody interested?
“We've not proven it yet, so you should not go home and kill your cat,” Torrey says. “And if you are over the age of 30 and you have a nice cat, that's fine. On the other hand, if you want to minimize any chances in your children, then getting a cat for a young child is probably not the right thing to do.” (Opponents say he's off base. See Wikipedia article on Fuller Torrey for this discussion)

The brains delivered by Fed Ex
Fuller Torrey collects brains at the Stanley Medical Institute in Washington, which he heads. His team receives postmortem brains often on weekdays via Fed Ex for their brain bank, the largest in the world. He now has over 600 brains in his collection which Torrey calls “first-rate, brains of people younger and not dead long,” the kind of brains that “would be full of unaltered proteins and neurotransmitters, viruses and cytokines that might hold the answers to schizophrenia's cause. The only schizophrenic brains available before this have been very old and not in very good shape. They came from hospitals and nursing homes, from patients so elderly that by the time they died the brain had atrophied.”
Torrey gets the brains donated from medical examiners offices and “has built a national network that collects brains of mentally ill people who have died in their 20s, 30s and 40s, from suicide and heart failure, in car crashes and fires.” He employs several pathologists around the country to work hunting brains. The frozen brains are shipped to his lab, where, he says, “we have 44 freezers just full of brain.” While he uses some himself, he ships most of them free to researchers world wide. (See the NY Times piece mentioned above about this)
At the Stanley lab, the brain tissues are scrutinized by a team of researchers to identify cell damage that may point to viral infection. They are also searching for antibodies in brain cells and for chemical substances released when the body fights infections. The team hopes that finding the viral culprits could lead to effective new drugs and perhaps even a vaccine for schizophrenia. These studies are not conclusive. (See Stanford Magazine article cited above)

Torrey's twin studies
Fuller Torrey was principal investigator of a NIMH schizophrenia/bipolar disorder twin study conducted at St. Elizabeth's Hospital in the late 1980s and early 1990s. He co-published several studies on structural brain differences between affected and unaffected siblings. He differed from his collaborators in arguing that the genetic heritability of schizophrenia was lower than typically estimated. Disagreements followed with those reviewing his data. (see Wikipedia article)
Some of us in NAMI were first attracted to Dr. Torrey by his twin studies, which seemed to set the odds for inheritance of schizophrenia. He wrote in Surviving Schizophrenia (1995) that his study of identical twins shows that when one twin develops schizophrenia, the second twin has about a 30 percent chance of also becoming affected. Among fraternal twins the chance of the second twin becoming affected is about 10 percent, the same as for brothers and sisters.
While genes play some role in the development of schizophrenia, Torrey remarks, there is much debate about what that role may be. “If schizophrenia is truly a genetically transmitted disease, it does not fit existing dominant or recessive patterns. It is also difficult to understand why the disease has not died out since people with schizophrenia reproduce at an extremely low rate. Furthermore, first-cousin marriages or other inbreeding do not seem to affect the rate; the incidence of schizophrenia is not higher in areas where such inbreeding is higher. Finally, it should be remembered that only about one-third of individuals with schizophrenia have a family history of this disease, which means that two-thirds do not.” (See Surviving Schizophrenia, page 156).
Hence, we might understand Torrey's continued fascination with viruses, more than genes, as causes of schizophrenia, even if the findings are less conclusive. (Roy Neville)

Tuesday, May 26, 2009

What mental health consumers want for inpatient services

It's boring and it's not private while in the hospital

I came to listen to what the consumers had to say. They were gathered at the big tables in the open room at the Collage psycho-social club on a Thursday afternoon waiting for supper.
Holly Clark, who manages the clubhouse for Ellis Hospital, had their attention. She wanted to see what they thought about the inpatient psychiatric unit at the hospital. That's where you go when you're sick, and while many of the folks who attend Collage have had a turn in the hospital for a crisis with their illness or a panicky time or depressed time, they don't generally talk about it. There's a powerful stigma at work that keeps anyone's medical and mental health history unspoken, off limits—even to friends and family.
This wasn't to get at anyone's personal history. It was about the things that everyone knows go on when you're hospitalized but you don't have a chance to talk about them while you're there. Holly began by asking if they would have some ideas for improvements there.
Eager to talk, they began suggesting how their stays might have been more pleasant or rewarding. There seemed to be three themes: they wanted more groups and activities on the unit that would keep them involved; the right to go off the unit to neighboring Sunnyview where there is a gym and swim pool; and more privacy—for small group discussions and family visits, for instance.
About the groups, “We need weekend activity..they don't have enough on weekends to do,” a man offered. Like what? “Dancing, karaoke...hobbies—arts and crafts.” Someone said they have an arts and crafts room but it's not open weekends.
What else would you like to do? Holly asks. “I'd like to play Trivial Pursuit...and Boggle.”... “I'd like to do beads”.... “We could make jewelry.” Holly says: “Oh, that's a good idea.”
Do you have books and magazines? “Yes.” What about writing—like poetry? “Yes, they give you paper and crayons.” Could you make scrapbooks? “They don't allow scissors.” Can you use a camera? “No. You can't take pictures of anybody on the inpatient unit.”
“We could do quilting, suncatchers...'journalong'--another hospital did that,” they began saying. Do you have TV.? “There's just one TV in the dining room. We don't have TV in our own rooms.” They agreed on more TVs.
How about a radio—can you listen to music? “No radios,” they replied, “they're not allowed.” How about headphones so you don't disturb anybody? “No,they won't allow those either—it's the wires.” And no tapes. Apparently the hospital considers the magnetic tape inside cassettes a safety risk.
But, Holly persisted, “If the headphones are wireless, self-contained? And they are one-piece that go over your head?” That idea sounded safe enough even if no one's using them on the unit.
Then came suggestions about exercise and freer movement. “What we need is a gym, a place to exercise. We'd like to use the gym at Sunnyview. They have a pool—why can't we swim there and play volleyball?” (wide agreement). Evidently, other patients at Ellis have had such privileges. Holly thought they could look into it. And someone sensibly suggested: “We'd need bathing suits.”
The gym at the Capital District Psychiatric Center was mentioned as a big attraction for patients there. CDPC also has a workshop where patients can put in time and earn some money by doing mostly routine assembly jobs the hospital takes in under contract.
When they were asked about working, they replied: “We can do jobs. We could help pass out menus or wrap the silverware for the kitchen.” Such chores are needed every day in the hospital. “Why not?” they asked. No one had a ready answer. It just wasn't in the cards.
Another suggestion was: “We need to get fresh air, to go out. Why can't they let us go out on the grounds? At another hospital they let us do that,” a man said. While some agreed, others were hesitant, doubtful they would be allowed out on their own.
They brought up the idea of more privacy and small group spaces. “They need to let you smoke cigarettes, so we have a place to talk,” a woman remarks. (ready applause-- but they know Ellis has rules against smoking inside or outside the hospital.) “I used to enjoy that so much—talking to each other in the small room they had. Why can't we still have a small room?” she persisted. She and others said they'd like to have the room, where it's private, even without smoking. (As an option, the hospital will give them cigarette gum.)
“We need more privacy for family visits. You need a room where you can talk, apart from your neighbor,” someone noted. (There is just one visitor room per floor in psychiatry?)
“Patients need to have a pay phone.” (there is only one per floor for patients). “We can't use a cell phone. People don't get messages.” Several others agreed.
“I don't like them taking my valuables,” a woman said. “They put them in a safe. They might not be there when you leave.” “No,” said another. “They put your valuables in a locker with your clothes. That's all right.”
A member said patients should be notified ahead when they're going to be discharged. “They don't tell you anything.” (it drew approval.)
Along the way there were remarks about the food. “The food doesn't have enough variety,” they contended. (It's evidently the same food as in the rest of the hospital but they said they don't have as much choice. Patients in Psych fill out a slip and an aide picks it up each morning for the day's meal choices. Other patients, like those on medical-surgical floors, choose meal selections from a larger menu and phone them in. On Psych they said they do get a snack in the evening—including a sandwich and ice cream. During the day they aren't served coffee, just juice.)
Part way through this chatty session, Holly is handed a note. She opened it and turns to a fellow: “This comes anonymously. Are you sure you want me to read it?” When he nods, she reads the note. “Okay, it says: 'I'd like to have nude nurses and a sponge massage.'” A lot of cheers followed. It was one of the moments that broke up the crowd. (Roy Neville)

Monday, May 25, 2009

Commissioner fiddles while Rome burns

How state Office of Mental Health falls down on its responsibilities

Government has to ask now and then if it is the problem, not the solution. And if it is the problem, how about getting out of the way so that other people can get on with their lives
State government leaders in mental health are talking so piously about making reforms they don't look at the obvious—that their own policies make for some of the problems that exist that cost taxpayers millions of dollars and cause hardship for consumers of mental health services and their families.
Imagine fighting a health care system that is so fragmented that you can't get what you need to recover from a serious medical illness. That's a number one concern for many families with schizophrenia
As National NAMI reports: More than 2 million Americans and their families face these conditions every day because of an illness called schizophrenia. It's an illness that is twice as common as HIV/AIDS. It does not discriminate. It strikes people of all races and both genders, and cuts across all social and economic classes.
We've been saying that for more than 20 years, pointing to the state legislature and Office of Mental Health for remedies. Do they have remedies?
Imagine being homeless, or having a son or daughter who went missing and has not been heard from in years. There are so many wanderers among the mentally ill population. And families can't find them because of a vicious system the state and national governments use to stifle any talk about a mentally ill patient's condition or whereabouts without his or her consent.
We've objected strenuously to that, too but haven't gotten anywhere. Known as patient confidentiality laws, both state and federal, these keep families in the dark about their loved one's hospital stay or place of residence, for example. They keep treating professionals from easily sharing information, and finally, perpetuate stigma against the mentally ill by silencing and threatening anyone who discloses.
The institutional review boards were set up to bird-dog similar surveillance over what people say or write about the mentally ill in research projects. Every college and university research paper for publication undergoes this review in our state as do papers from researchers in government mental health facilities, hospitals and private laboratories and centers. The reviewers will delay and block publication if there is any suspicion that the subjects can be identified. The result is to freeze any serious research on behaviors of mentally ill people in different contexts like prisons or nursing homes, for example. This is another area where the state needs to adjust policies.
While the commissioner flirts with tracking systems and computer improvements, his policies affecting community mental health are questionable. He has written that continuing treatment programs must be cut back while the state boosts payments to co-existing mental health clinics. This would remove a vital part of the treatment system in our community.
Also, the state has announced it has changed the role of the state mental hospitals to make them into short term and intermediate care facilities. This eliminates their traditional duty to take patients from the psych units of general and private hospitals for extended stays before returning them to the community. The change makes it harder for discharge coordinators in Ellis Psychiatry to place patients now that the state is balking on taking patients as formerly. Are these sensible practices?
The commissioner is emphasizing rehabilitation, independent living and self-directed treatment as ingredients in a new model of care. His “transformation” philosophy is liberating to some. But we shouldn't turn away from pressing needs of the most seriously mentally ill who cause the greatest impact on society when they are not treated, I believe.
He seems to say as much in an article he and his medical director, Lloyd Sederer, have written in Health Affairs (Vol. 28, No. 3, 2009), titled Mental Health Crises and Public Policy. They say the state is responsible for mental health policy, while the states have to develop strong local government systems of mental health care to be effective. Referring to crises, like the shootings in NYC last year, or the woman who died in the waiting room of a Brooklyn hospital, or the Karen Webdale case back in 1999, they say those in charge try piecemeal fixes, none of which prevent more of these events from happening again. They call for “clinical alerts” in NYC and improved clinical standards to follow up on high risk patients, as “touch up” changes proposed by a NYC task force.
But many more decisions not being made should haunt our state leaders. What about protective services for families where violence occurs? How about “housing first” programs that take people off the street as they're trying to do in NYC? How about more halfway houses for men with mental illness who have just been released from prison, so they won't immediately be returned? What about tackling the difficult question of whether it should be state policy to lock up mentally ill people who prove they can't live safely in society?
The state can do much more on a variety of fronts.
--Over the years we can't recollect a single case of the Office of Mental Health tapping the NYS Dormitory Authority for funds to build apartment projects. Other NYS departments have gone this route, leading to housing projects for mentally retarded people, the elderly and college students, among others.
--Assertive Community Treatment teams are underfunded in the state mental health budget which causes them to be less effective. Schenectady County originally had to put up its own funds for its first ACT teams.
--the state fails to open more crisis stabilization homes for the mentally ill, which are medically staffed group homes that take more fragile patients than those admitted to other licensed group homes. As a result many people are admitted and readmitted for short term stays in the hospital at high expense when they could be supervised appropriately in a crisis residence.
--the state office has not promoted the employment of mentally ill people by state agencies under section 55b and 55c of the state Labor Law. These jobs used to be a reliable source of employment for them.
--There is excessive record keeping and report writing in annual state recertification and Medicaid reviews that are extremely costly and time wasting for hospital and clinic personnel in psychiatry. Staff have to write progress reports in longhand in psychiatry to please recertification teams. Workers spend more time doing reports than treating patients, it is alleged. Computers would speed up the reporting.
--Similarly, the group home and apartment programs run by not for profit corporations under contract with the state office also contend with heavy record keeping, particularly to account for medicines doled out. Daily treatment reports filed for Medicaid reimbursement are paid only after considerable lag time and are often kicked back to the agency if not filled out properly.
And what about the homeless in the streets, the repeaters in the emergency rooms and psychiatric wards, and the people with restless voices clamoring in their heads. Shouldn't this commissioner put first priority on them? One of the programs the legislature approved to address these issues is Kendra's Law, or assisted outpatient treatment. It has saved the state money and recaptured lives. And it serves as a model for other state mental health systems. But the commissioner is ambivalent about this, citing a report saying since the law was passed, crimes continue to occur and the effectiveness of AOT is still being evaluated. Give us a break! (Roy Neville)

Tuesday, April 21, 2009

Demise of the Medical Model of Mental Health Care

The revolution that people foresee coming to mental health care in New York State carries risks and challenges. For some, it means the end of the medical model of care, with doctors, hospitals and medicine being tossed aside where possible. For others a transformation to patient self-directed care, independent living and people gaining greater control over their lives represents a “great leap forward” in mental health.

The US Surgeon General sounded the death knell for the old system a decade ago, summing it up like this: “So the medical model, primarily focusing on symptom relief, passes in favor of recovery, which casts a much wider spotlight on restoration of self-esteem and identity and on attaining meaningful roles in society.”

The demise of the medical model follows on the heels of events that shook up the world of psychiatry in the past decade.

In the past few years we've seen evidence of culpability of state hospital directors and their staffs who expelled thousands of sick, mostly elderly patients from the big state hospitals on Long Island to crummy nursing homes and adult homes in Brooklyn, Queens, New Jersey and elsewhere.

Later came revelations that leading psychiatrists and researchers around the country including those we regularly invited to our NAMI conferences for truth and inspiration were in cahoots with the drug companies and peddled their products unashamedly. That whole world came crashing down in which we had trusted those at the top of the medical profession to explain the mysteries of these powerful diseases crippling the minds of our sons and daughters, husbands and wives.

And there came revelations about over-drugging children who couldn't learn in school and disturbed their teachers and classmates. Doctors firmly believed that pills were the only effective route to behavioral change. This came with the pharmaceutical revolution in psychiatry where most doctors now prescribed medicines for every kind of emotional and mental ailment and relegated counseling, known as “talk therapy,” to a second rung. Only later did we realize that a combination of the two--medicine and counseling--proved the best treatment approach.

Then came startling results from a top level study group, the President's Freedom Commission in 2002-03, that found that the nation's system of mental health care was a flop, costly and ill-achieving. Too many sufferers were not getting any care at all while others lacked access to housing, hospitals and outpatient facilities. Children with emotional problems were particularly limited, with a severe shortage of child psychiatrists and confusion about how to treat children's rampantly wild behavior in the classroom.

And a follow-up study reported that newer brands of anti-schizophrenia drugs, like Risperdal and Zyprexa, called “atypicals,” were no better than older drugs that had been discarded, like Haldol and Prolixin, in treatment of the most severe mental illnesses. The newer drugs couldn't be distinguished from the older ones in efficacy even though the new drugs cost several times more and were now being prescribed almost exclusively to more and more sufferers.

That gave rise to the suspicion that doctors were prescribing the same drugs the companies were paying them to promote in professional journals, at conferences and in company advertising. We read that doctors had to resign from prestigious positions with these journals and others lost their university standing as a result of exposes of tie-ins and payoffs from pharmaceutical companies.

Finally, Rising Costs and Public Disaffection

Meanwhile, the nation began feeling the high costs of mental health care, associated with not only drug prices but a growing frequency of emergency room visits and hospital stays by people facing mental crises. A small segment of this population took up the lion's share of psychiatric beds and ran up huge bills. Lawmakers grew angry at these failures in treatment and began to question the mental health industry.

Too often, the mentally ill were associated with violent acts in the news media. Calls have come from some in the field to lock up persons who can't live safely in the community with others. Such violence has antagonized the public against the mass of innocent sufferers.

Those entities paying the bill--insurance companies and state, federal and local governments--found the combined medical and mental health costs of these patients were rising faster than for any other group of patients, and they had to do something. Companies fought for years to eliminate any mental health insurance coverage in employer health plans or make it inferior to other coverage. Only recently have parity insurance bills passed in most states and at the national level.

The state has converted most of its programs to Medicaid to reduce its own spending, which has limited the ability of doctors and other practitioners to bill for services. It has also frustrated many with an overload of recordkeeping forms and payment delays. For these reasons and the fact that psychiatrists are now devoted to dispensing pills, fewer new recruits are being trained. Those who practice talk-centered therapies based on analysis have lost respect.

With the economy reeling in 2008 and -09, hospitals have closed psychiatric beds and counties have slashed community mental health budgets. The result has been growing numbers of young and disaffected men and women in jail or left homeless in our cities with their mental health needs largely unattended to. Jails have become the stopping place for those who can't get treatment in hospitals and community care.

The system appears to be coming apart. New York State's mental health commissioner, Michael Hogan, wants to move away from hospital and other institutional care to more services in the community. He would look for alternatives to the traditional doctor-medical delivery system by reforming the roles professionals play and creating incentives for better performance. His is the last word while the system struggles to redeem itself from a decade of indecision, false promises and backward steps. (Roy Neville)