Posts
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)
Tuesday, June 2, 2009
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)
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)
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)
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)
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)
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)
Wednesday, April 15, 2009
Fighting the Good Fight
How Disability Advocates, Inc. Racks Up Wins for Mental Health Consumers and Families
Disability Advocates, Inc. is a public interest law firm in Albany, one of six in the state set up by Congress in 1991under the Protection and Advocacy for Individuals with Mental Illness law.
It's a kind of secret weapon for mental health consumers and their families, while keeping a low profile.
There are half a dozen lawyers manning the Albany office (at least three are women), sitting a floor above a famous eatery, McGeary's, just across from the Palace Theater, downtown. They serve a 16 county area, a regional legal resource for seriously mentally ill people. They will offer assistance to individuals and represent them in court, and on a broad scale they press litigation statewide in cases involving the civil rights of these folks.
In one of these cases, the office made news recently by winning a challenge to go to trial against NY State in a lawsuit involving residents of adult homes in New York City. Cliff Zucker, executive director of the agency, says he thinks the case is strong, alleging that the state violates the Americans with Disabilities Act by unlawfully segregating these residents from better housing they might have in the city.
The suit aims to force the state to end discrimination against the residents in these often decrepit buildings, impacted with mentally ill residents illegally sent there from state psychiatric hospitals. The charge is that the state is not finding other homes and apartments for them where they might receive more financial and other assistance. Zucker said he is preparing for trial May 11.
The nearly six-year-old lawsuit follows years of reports about horrific conditions for older and weaker residents in the homes. In 2002 an investigation by the NY Times of 26 adult homes revealed numerous deficiencies over patient safety, medical and money management and other shortcomings.
The federal judge noted in his decision that the state had failed to implement the recommendations of an adult home work group convened by former governor George Pataki to develop a timetable to move 6,000 adult home residents to alternative housing.
How did so many mentally ill residents wind up in these flea bags? we wondered back then. It turns out the state Office of Mental Health put one over on the advocates by keeping secret the mass move-out of state hospital patients to nursing homes in Brooklyn, New Jersey and Massachusetts in the 1990s.
We didn't know this was happening while we applauded the annual rundown in patient census at the big state hospitals on Long Island. The Office of Mental Health was shipping out patients who were costing the state more than twice the amount they would in these nursing homes. Medicaid paid the bill in nursing homes and adult homes but not in the OMH hospitals. The tragedy was the homes took the people in without always having staff and facilities to care for them, and the people were really sick.
This decision was the latest in a string of successes in court by Disability Advocates. Last year Zucker's firm won a lawsuit against the state for failing to honor a ruling in the Gowanda case back in the 1990s that forbade state hospital directors from taking the monthly social security checks of patients. They were using the money to pay their hospital charges instead of saving the money aside according to the patients' wishes. And now Governor David Paterson tried to restore the same practice by the hospital directors in a bill of his own but the legislature didn't buy it and refused to allow it.
Before that the PAIMI office and other law firms settled a five-year-old suit in trial in federal court against the state Department of Correctional Services and Office of Mental Health that led to the “SHU law”. It called for reforming the practice of putting mentally ill prisoners in solitary confinement 23 hours a day and instead putting them in treatment housing, training officers and changing hours of confinement. This ruling coincided with passage of the prisons' special housing law last year but it has not yet been implemented.
Disability Advocates won another suit in 2003 to have the OMH change its regulations so that residents in licensed community residences wouldn't be summarily forced to move out of them. These evictions, which Zucker's office claimed were violations of due process and equal protection of law, gave residents the right to challenge them and appeal an adverse decision. Housing sponsors still have the right to force someone out, however.
In the 1990s there were more court victories--over the state's termination of special education services for home-schooled children, over halting the state's practice of forcibly administering psychiatric medicine to non-dangerous patients; and another to stop the state from placing individuals judged incompetent in court in psychiatric hospitals, without regard to their dangerousness.
Zucker's office is sometimes confused with the state's Mental Hygiene Legal Services, which works out of the Appellate Courts and assists patients in the Capital District Psychiatric Center. Disabilities Advocates, on the other hand, represents seriously mentally ill people wherever they live—opposing, for example, the operators of nursing homes, adult homes and mental health community residences as well as private landlords and employers.
For these reasons the agency isn't always popular. It has a record of opposing parents and other close relatives of someone mentally ill who challenges them in court, too. There was a time when the PAIMI lawyers seemed too willing to take on cases against families when we tried to intervene in privacy matters over hospital or medical records involving our adult children. NAMI NYS board members didn't like them on the other side of t he fence.
But this doesn't happen much anymore, Zucker said. He thinks the families and his office are often in agreement with one another in cases about better housing and job rights and protections for disabled people. He sees our two groups working together harmoniously from here on out. Times have changed!
(Roy Neville)
Disability Advocates, Inc. is a public interest law firm in Albany, one of six in the state set up by Congress in 1991under the Protection and Advocacy for Individuals with Mental Illness law.
It's a kind of secret weapon for mental health consumers and their families, while keeping a low profile.
There are half a dozen lawyers manning the Albany office (at least three are women), sitting a floor above a famous eatery, McGeary's, just across from the Palace Theater, downtown. They serve a 16 county area, a regional legal resource for seriously mentally ill people. They will offer assistance to individuals and represent them in court, and on a broad scale they press litigation statewide in cases involving the civil rights of these folks.
In one of these cases, the office made news recently by winning a challenge to go to trial against NY State in a lawsuit involving residents of adult homes in New York City. Cliff Zucker, executive director of the agency, says he thinks the case is strong, alleging that the state violates the Americans with Disabilities Act by unlawfully segregating these residents from better housing they might have in the city.
The suit aims to force the state to end discrimination against the residents in these often decrepit buildings, impacted with mentally ill residents illegally sent there from state psychiatric hospitals. The charge is that the state is not finding other homes and apartments for them where they might receive more financial and other assistance. Zucker said he is preparing for trial May 11.
The nearly six-year-old lawsuit follows years of reports about horrific conditions for older and weaker residents in the homes. In 2002 an investigation by the NY Times of 26 adult homes revealed numerous deficiencies over patient safety, medical and money management and other shortcomings.
The federal judge noted in his decision that the state had failed to implement the recommendations of an adult home work group convened by former governor George Pataki to develop a timetable to move 6,000 adult home residents to alternative housing.
How did so many mentally ill residents wind up in these flea bags? we wondered back then. It turns out the state Office of Mental Health put one over on the advocates by keeping secret the mass move-out of state hospital patients to nursing homes in Brooklyn, New Jersey and Massachusetts in the 1990s.
We didn't know this was happening while we applauded the annual rundown in patient census at the big state hospitals on Long Island. The Office of Mental Health was shipping out patients who were costing the state more than twice the amount they would in these nursing homes. Medicaid paid the bill in nursing homes and adult homes but not in the OMH hospitals. The tragedy was the homes took the people in without always having staff and facilities to care for them, and the people were really sick.
This decision was the latest in a string of successes in court by Disability Advocates. Last year Zucker's firm won a lawsuit against the state for failing to honor a ruling in the Gowanda case back in the 1990s that forbade state hospital directors from taking the monthly social security checks of patients. They were using the money to pay their hospital charges instead of saving the money aside according to the patients' wishes. And now Governor David Paterson tried to restore the same practice by the hospital directors in a bill of his own but the legislature didn't buy it and refused to allow it.
Before that the PAIMI office and other law firms settled a five-year-old suit in trial in federal court against the state Department of Correctional Services and Office of Mental Health that led to the “SHU law”. It called for reforming the practice of putting mentally ill prisoners in solitary confinement 23 hours a day and instead putting them in treatment housing, training officers and changing hours of confinement. This ruling coincided with passage of the prisons' special housing law last year but it has not yet been implemented.
Disability Advocates won another suit in 2003 to have the OMH change its regulations so that residents in licensed community residences wouldn't be summarily forced to move out of them. These evictions, which Zucker's office claimed were violations of due process and equal protection of law, gave residents the right to challenge them and appeal an adverse decision. Housing sponsors still have the right to force someone out, however.
In the 1990s there were more court victories--over the state's termination of special education services for home-schooled children, over halting the state's practice of forcibly administering psychiatric medicine to non-dangerous patients; and another to stop the state from placing individuals judged incompetent in court in psychiatric hospitals, without regard to their dangerousness.
Zucker's office is sometimes confused with the state's Mental Hygiene Legal Services, which works out of the Appellate Courts and assists patients in the Capital District Psychiatric Center. Disabilities Advocates, on the other hand, represents seriously mentally ill people wherever they live—opposing, for example, the operators of nursing homes, adult homes and mental health community residences as well as private landlords and employers.
For these reasons the agency isn't always popular. It has a record of opposing parents and other close relatives of someone mentally ill who challenges them in court, too. There was a time when the PAIMI lawyers seemed too willing to take on cases against families when we tried to intervene in privacy matters over hospital or medical records involving our adult children. NAMI NYS board members didn't like them on the other side of t he fence.
But this doesn't happen much anymore, Zucker said. He thinks the families and his office are often in agreement with one another in cases about better housing and job rights and protections for disabled people. He sees our two groups working together harmoniously from here on out. Times have changed!
(Roy Neville)
Subscribe to:
Posts (Atom)