Posts
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)
Friday, October 16, 2009
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)
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)
“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)
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)
Subscribe to:
Posts (Atom)