Posts
(from the NAMI Schenectady newsletter, May-June 2010)
It's 8:40 am. They've had me in pre-op two hours already, taken my clothes and wallet and glasses and dressed me in a johnny shirt. Abruptly, someone grabs my bed and pushes me roughly into the hall, zigzagging along as I study the ceiling tiles flashing by overhead. They come to a plain door in the hall and it opens and they wheel me into bright lights. What a disappointing little room with a few scattered people flitting by and a few tables for apparatus. Imagine—this is the core of the hospital—the grand operating theatre, where people survive or die at the hands of skilled surgeons while nurses watch the blips of electronic machines and liquids in translucent bags flow silently into the body to keep vital life signs going. Like we see on the hospital shows on TV. The eerie aura of life and death hanging in the balance is in there and it's unsettling unless you put it out of mind and take as comfort that you are in the hands of the best people we have,the best trained, the best team, the latest equipment. I say to myself: Brother, I trust. I feel special in the center of the room. They've whisked me out of my bed onto a narrow bench or table. I could almost fall off of this it's so small. Is that the best they can do? I thought. They whisper hello. I think it's the anesthetist who now greets me. They're assuming positions around me. He clamps a plastic mask over my nose and mouth, lifts it off and says, you'll be out in a few seconds. I'm not out right then, but the mask comes down again and I'm off in dreamland.
Next—it seemed an eternity later--I woke up in post-op, with a head full of cuddly dreams and imaginings of stars and moons. How are you feeling? Someone asked, the same question I would receive umpteen times a day from now on. I felt like I'd been away a long time. They took me by gurney to my room on A-3, post-surgery and somehow slipped me into my bed where I slept for hours. Then hospital life begins: the first night or two they wake you just about every hour to take vital signs--blood pressure, pulse, and temperature (the last is done by machine with a swipe of your forehead—no more thermometer under the tongue. Someone from the hospital lab comes in at 5 or 6 am to wake you and draw your blood, every day. The nurses and student nurses who crowded into my room ask me questions and have to write everything down. They check my dressing. My hip surgery went well—the incision is clean and untroubled with a cross hatching of dark staples down its length, like repair after a shark's bite. The housekeeper even woke me at 6 one morning to introduce herself. The day nurses streamed in and out, 18 or 20 separate visits the first day, inquiring, soothing, wordlessly doing their chores. They push a console with a laptop computer on it and spend awhile pushing the screen to record my vital signs and assess my condition. Out in the hall they're doing more of that, nurses studying their computer screens and punching keys. That's modern nursing.
My bed is wide and comfortable and above my head is a line of switches for them to turn lights on or off. They can elevate or lower my bed's upper half. I have a phone to order my meals and a remote control for the thin-screen high-def tv on the wall. This must be the queen suite in Ellis Hospital, armed to the teeth with modern technology. I'm hooked up to an intravenous line with a fluid bag hanging overhead on a metal tree with an electronic contraption blinking out red or green numbers on its face. Then there's the pump. It's ingenious, a small plastic grip with a button on it in bed alongside your hip which you press whenever you feel pain. Well, every body knows after getting part of you removed you're going to feel pain and so you push that pump pretty darn often. The line from the pump goes up to an overhead bag with liquid dilaudid, an opiate narcotic that Ellis chooses to use as its main pain mollifier, in place of pills and other injections that have been used in the past. Imagine—no pills, just push the pump and feel instant relief. It invites odious comparisons with the appeal for instant gratification that junkies must feel with their drugs on the outside. This is more humane, of course, to comfort us, to let us know our every tremor and ache can nevertheless bring peace of mind. (Oh, to have the drug maker's contract with hospitals that issue this magical drug.)
As the days grow and I begin to feel less pain and more like a human being, they talk of discharging me, first to Sunnyview and then home. But there's a catch—my MVP Gold insurance doesn't cover rehab at Sunnyview for some reason so they cant get me in there even though the head discharge nurse says, we're going to take you down there Saturday morning and roll you through the gates. They were stopped before they started. So Ellis goofed here, they suggested I go home only three days after my surgery and that wouldn't work. Why should someone at home do the rehab and close care that's needed so soon after? Rehab is part of the process of getting better—daily exercise and attention to each step of the way. And you don't dump people back home right away. The compromise,which suited me, was to have a home-duty visiting nurse-physical therapist come to our house several times after I finally left the hospital after the weekend. She put me through my paces and this worked well, thanks to Visiting Nurse Service (bless them for what they do).
Now, it's much later when I write this, three weeks after the big event. I can sit up and type on the computer and answer the phone, even with the last of the aches and pains coming from my rump. Oh, still I long for the pleasures of the Ellis pump, the assurance it gave each of us, the lofty, dreamy feelings it created. I remember I couldn't read the first few days in hospital while taking that stuff. My mind wouldn't concentrate, my eyes wouldn't focus on the page, they ran off to other lines of text. I thought it was me but it was the drug. Anyway, if you're thinking of surgery at Ellis, you'll have the chance to enter dreamland like I did and you'll make it through, thanks to the pump. (Roy Neville, April 30)
Thursday, May 27, 2010
Why hospital care costs so much--the expansion of medical records
It's always been the business of doctors, nurses and health care givers of all kinds in hospitals, nursing homes, doctors offices, clinics and the like to keep close and detailed patient records. Depending on the circumstances these range from a folder your doctor keeps that contain his handwritten notes about your complaints and condition, test results, his analysis or assessment, treatment recommendations and prescriptions ordered. If you're hospitalized you might have a more detailed health history taken, plus data sheets and charts, progress notes of those taking care of you, results of lab tests and the analysis and diagnoses of various practitioners who have had a whack at you. That's my guess. It's simply taken as truth that the doctors and clinics and other health care practitioners who take responsibility for your care will review these records and rely on them when they next evaluate you. And they will plan for your continued care and what role others might play, on the basis of what is written down in your records.
As sensible and eternal as this system has been for everybody serving in an office or clinic or hospital, modern corporate medicine has made big changes in medical record keeping in the last decade. The changeover to electronic records is still going on, with ever more complex and extensive kinds of data gathering and analysis required. This creates an amazing burden on nurses (as well as the Ellis mental health clinicians downtown) who are the primary record keepers. I've recently witnessed the fact that nurses spend more than half of their time on the orthopedic floor at Ellis at their computer workstations in the patient's room and out in the hall. They're not talking to the patient, or observing or doing treatments or giving out medicine, which are the things that nurses do.
They take vital signs (blood pressure, pulse and temperature) at your bedside in seconds, then retreat to their consoles to record everything that the computer program calls for including such inanities, I'm told, as whether the bed rails are up or down. And I suppose, they assess whether you look bright this morning, if you're eating and sleeping and have had a proper bowel movement. And they will do this type reporting over and over, filling in boxes on the computer screen using different codes and shorthand that some computer whiz has designed for them.
It's enough to make nurses turn away from the profession. The student nurses I had at my bedside during my recent recovery from hip surgery at Ellis in April said they spent several hours a day at their computer. One said they had to assess what my condition meant, not just the physical signs. That means using their imagination. It's done so that supervisors can see what they've done, every shift, every day.
Do they want to do this? Not at all. They told me they disliked it, it kept them away from direct patient care and their reason for becoming a nurse. They were asked to put down far more detail than needed. My professional home-care physical therapist said when she went into nursing 27 years ago she did it to be close to patients, to make a difference in their recovery. Now she works on a laptop in my house for part of her time with me and spends more time on it at night—all to satisfy federal rules for her position.
Why do they do it? The nurse said it's required by federal Medicare regulations. That governs Medicaid and private insurance companies as well. The hospital has to do it to be reimbursed. They also do it because the hospital wants to be protected in the event of lawsuits over the treatment someone has received or a medical malpractice claim, for instance. That's why we knuckle under to these outrageous claims on the time and energy of our doctors and nurses.
While electronic records are touted as cost-saving, critics say this is not demonstratedly so. Instead, the price tag to switch over to these systems has cost hospitals and the public millions of dollars. There's an extreme concern in the hospital about sharing and safeguarding the extensive system of electronic records, which adds to cost. They must protect both patient and physician confidentiality under federal and state laws. So the sharing and access is likely missing. The visiting nurse's computer record on me cant be shared with my surgeon, who ordered her care, nor the hospital, both of which have systems incompatible with hers. And time spent at the computer console is certainly a consideration. Nurses can't be assigned more patients than now, just as the Ellis mental health clinicians can't take on more patients, leading to the backlog in appointments the past few years.
While computerized records are all the rage, and have clear benefits for storage and versatility of use over the handwritten ones, hospitals and clinics and doctors offices still must rely on longhand notes for many applications. For one thing, it's simpler to write down what the patient says when face to face. These are the customary progress notes and charting that nurses are trained to do. Why should they recapitulate the record on a computer screen? For whom are the records kept, after all, if not the immediate patient? Instead, the computer records seem destined for data banks that serve the institutional purposes of regulators and insurance companies and research entities. I don't think my hospital records have much value to anyone else, except for somebody's studies and we shouldn't have to pay for that.
By the way, NY State is about to implement a multi-million dollar computer network to store and manage our medical records, called eHealth. It's like a data bank for each of us so doctors and other care providers can access information about us when we need them to. The information would come from hospitals, physicians, pharmacies, clinical labs, health insurers, and the Medicaid program. It can pave the way for safer, more convenient health care,say the people touting eHealth. It will tell others if we've changed doctors, seen a specialist, visited a clinic, or checked into a hospital and much more. I call it invasive and super-expensive, not needed or wanted. The state will receive federal surplus money through ARRA, the Recovery and Reinvestment Act to pay for it. It's also called SHIN-NY and you'll be hearing about it soon, as
hospital costs keep rising, and you wonder why. (Roy Neville)
As sensible and eternal as this system has been for everybody serving in an office or clinic or hospital, modern corporate medicine has made big changes in medical record keeping in the last decade. The changeover to electronic records is still going on, with ever more complex and extensive kinds of data gathering and analysis required. This creates an amazing burden on nurses (as well as the Ellis mental health clinicians downtown) who are the primary record keepers. I've recently witnessed the fact that nurses spend more than half of their time on the orthopedic floor at Ellis at their computer workstations in the patient's room and out in the hall. They're not talking to the patient, or observing or doing treatments or giving out medicine, which are the things that nurses do.
They take vital signs (blood pressure, pulse and temperature) at your bedside in seconds, then retreat to their consoles to record everything that the computer program calls for including such inanities, I'm told, as whether the bed rails are up or down. And I suppose, they assess whether you look bright this morning, if you're eating and sleeping and have had a proper bowel movement. And they will do this type reporting over and over, filling in boxes on the computer screen using different codes and shorthand that some computer whiz has designed for them.
It's enough to make nurses turn away from the profession. The student nurses I had at my bedside during my recent recovery from hip surgery at Ellis in April said they spent several hours a day at their computer. One said they had to assess what my condition meant, not just the physical signs. That means using their imagination. It's done so that supervisors can see what they've done, every shift, every day.
Do they want to do this? Not at all. They told me they disliked it, it kept them away from direct patient care and their reason for becoming a nurse. They were asked to put down far more detail than needed. My professional home-care physical therapist said when she went into nursing 27 years ago she did it to be close to patients, to make a difference in their recovery. Now she works on a laptop in my house for part of her time with me and spends more time on it at night—all to satisfy federal rules for her position.
Why do they do it? The nurse said it's required by federal Medicare regulations. That governs Medicaid and private insurance companies as well. The hospital has to do it to be reimbursed. They also do it because the hospital wants to be protected in the event of lawsuits over the treatment someone has received or a medical malpractice claim, for instance. That's why we knuckle under to these outrageous claims on the time and energy of our doctors and nurses.
While electronic records are touted as cost-saving, critics say this is not demonstratedly so. Instead, the price tag to switch over to these systems has cost hospitals and the public millions of dollars. There's an extreme concern in the hospital about sharing and safeguarding the extensive system of electronic records, which adds to cost. They must protect both patient and physician confidentiality under federal and state laws. So the sharing and access is likely missing. The visiting nurse's computer record on me cant be shared with my surgeon, who ordered her care, nor the hospital, both of which have systems incompatible with hers. And time spent at the computer console is certainly a consideration. Nurses can't be assigned more patients than now, just as the Ellis mental health clinicians can't take on more patients, leading to the backlog in appointments the past few years.
While computerized records are all the rage, and have clear benefits for storage and versatility of use over the handwritten ones, hospitals and clinics and doctors offices still must rely on longhand notes for many applications. For one thing, it's simpler to write down what the patient says when face to face. These are the customary progress notes and charting that nurses are trained to do. Why should they recapitulate the record on a computer screen? For whom are the records kept, after all, if not the immediate patient? Instead, the computer records seem destined for data banks that serve the institutional purposes of regulators and insurance companies and research entities. I don't think my hospital records have much value to anyone else, except for somebody's studies and we shouldn't have to pay for that.
By the way, NY State is about to implement a multi-million dollar computer network to store and manage our medical records, called eHealth. It's like a data bank for each of us so doctors and other care providers can access information about us when we need them to. The information would come from hospitals, physicians, pharmacies, clinical labs, health insurers, and the Medicaid program. It can pave the way for safer, more convenient health care,say the people touting eHealth. It will tell others if we've changed doctors, seen a specialist, visited a clinic, or checked into a hospital and much more. I call it invasive and super-expensive, not needed or wanted. The state will receive federal surplus money through ARRA, the Recovery and Reinvestment Act to pay for it. It's also called SHIN-NY and you'll be hearing about it soon, as
hospital costs keep rising, and you wonder why. (Roy Neville)
Tuesday, February 9, 2010
DSM-V: Part 2--What's a brain disorder?
Should it be what the DSM says it is?
The Diagnostic and Statistical Manual of Mental Disorders (DSM) has been coming out since 1952 and has changed dramatically since then. “Human nature has not metamorphosed but each DSM has included more disorders than the last,” writes Frederick Crews in NY Review of Books (Dec.6, 2007). By the fourth edition in 1994, (which some of us were fed on like mothers' milk), there were over 350 disorders listed, “marked by dubious symptoms such as feeling low, worrying, bearing grudges, and smoking.” Those items were put in checklists so that “in Bingo style, for example, a patient who fits five out of the nine listed criteria for depression is tagged with the disorder.”
Christopher Lane, a literary critic and not a psychiatrist, who follows the Freudian line (and hated that the third edition abolished the neuroses), opposes the attempt in these volumes to categorize disorders according to their “detectable traits”. He writes that the DSM has ended “almost a century of psychoanalytic thought and (is) thus a reversion to Victorian psychiatry.” (I think he means in Victorian England these disorders were thought to be morally corrupting and curable, and so they put people away, which led to the way mentally ill people were treated in our country until the 1960s and '70s.)
What is a mental disorder? Well, here's the way the current manual, the DSM-IV-TR, puts it: “While this is a classification of mental disorders, no definition adequately specifies precise boundaries for the concept of a mental disorder. (They) have been defined by a variety of concepts, e.g., distress, dysfunction, dyscontrol, disadvantage, disability, inflexibility, irrationality, syndrome pattern, etiology and statistical deviation. Each is a useful indicator but none is equivalent to the concept and different situations call for different definitions.
“The DSM-IV uses categories to divide mental disorders into types based on criteria sets with defining features,” it continues. “That's the traditional method of organizing. (But) there is no assumption that each category of a mental disorder is a discrete entity with boundaries dividing it from other mental disorders. There is also no assumption that all individuals having the same disorder are alike in all important ways.”
With this much leeway to go on, no wonder the critics are having a field day. As one writer points out, “the rapid pace of pharmaceutical innovation has resulted in a corresponding need for the discovery of new diseases as well. As long as the drug industry continues to develop new products, the American Psychiatric Association guarantees a steady supply of new diseases requiring treatment.” And these find their way into the DSM. There are “diseases and subcategories, co-morbidities, prodromal forms of combined clinical subtypes, shadow syndromes and the like. ..(also) the catch-all category known as Not Otherwise Specified, or NOS, which is applied whenever the symptoms of any given mental disorder do not meet the criteria of any specific disorder within that category.” (bonkersinstitute.org)
Every new disorder is supposed to meet a host of criteria before being accepted into the manual. But transparency is a big issue and “behind the dispute is the question of whether the vague, open-ended terms being discussed even come close to describing real psychiatric disorders,” writes Lane in the Los Angeles Times. One of the past consultants to the DSM, he says, has revealed that editorial meetings over changes “were often chaotic. There was very little systematic research.” And the main author of the previous volume, Robert Spitzer, said he's against science by committee because of the willy-nilly way that psychiatrists have defined dozens of disorders in the past.
There is suspicion, too, that industry profit motives are bound to influence what goes into the DSM. Lane's book, “Shyness,” exposes efforts of the big drug companies to have shy people view themselves as mentally ill. He cites “the manipulations that promoted social anxiety disorder to a national emergency,” created by Madison Avenue and Big Pharma that have led to billions in profits for the companies. An ad for Zoloft in the American Journal of Psychiatry, August 2003, for instance, shows a woman with downcast eyes and asks: Is she just shy? Or does she have social anxiety disorder?
Sadness is another trait that is focused on. In “The Loss of Sadness,” Allan Horwitz and Jerome Wakefield comment on the fact that depression is now declared epidemic around the world by the World Health Organization. “Those judgments rest on failure to distinguish between major depression, indeed devastating to its sufferers, and lesser episodes of sadness, they argue. “Episodic sadness has always been a socially approved means of adjusting to misfortune and much is lost, both medically and culturally, when it is misread as a depressive disorder.”
The book implies that nearly every non-psychiatric complaint is subject to over-diagnosis unless contextual factors—familial, cultural, relational, financial—are weighed in the balance.” The authors beg the compilers of DSM-V to inquire into each patient's circumstances before concluding that they are faced with a bona fide disorder. But as author Crews points out, the DSM's inability to separate “vague discontents from real maladies” serves the profit making purposes of the medical profession and isn't likely to be changed. (Roy Neville)
The Diagnostic and Statistical Manual of Mental Disorders (DSM) has been coming out since 1952 and has changed dramatically since then. “Human nature has not metamorphosed but each DSM has included more disorders than the last,” writes Frederick Crews in NY Review of Books (Dec.6, 2007). By the fourth edition in 1994, (which some of us were fed on like mothers' milk), there were over 350 disorders listed, “marked by dubious symptoms such as feeling low, worrying, bearing grudges, and smoking.” Those items were put in checklists so that “in Bingo style, for example, a patient who fits five out of the nine listed criteria for depression is tagged with the disorder.”
Christopher Lane, a literary critic and not a psychiatrist, who follows the Freudian line (and hated that the third edition abolished the neuroses), opposes the attempt in these volumes to categorize disorders according to their “detectable traits”. He writes that the DSM has ended “almost a century of psychoanalytic thought and (is) thus a reversion to Victorian psychiatry.” (I think he means in Victorian England these disorders were thought to be morally corrupting and curable, and so they put people away, which led to the way mentally ill people were treated in our country until the 1960s and '70s.)
What is a mental disorder? Well, here's the way the current manual, the DSM-IV-TR, puts it: “While this is a classification of mental disorders, no definition adequately specifies precise boundaries for the concept of a mental disorder. (They) have been defined by a variety of concepts, e.g., distress, dysfunction, dyscontrol, disadvantage, disability, inflexibility, irrationality, syndrome pattern, etiology and statistical deviation. Each is a useful indicator but none is equivalent to the concept and different situations call for different definitions.
“The DSM-IV uses categories to divide mental disorders into types based on criteria sets with defining features,” it continues. “That's the traditional method of organizing. (But) there is no assumption that each category of a mental disorder is a discrete entity with boundaries dividing it from other mental disorders. There is also no assumption that all individuals having the same disorder are alike in all important ways.”
With this much leeway to go on, no wonder the critics are having a field day. As one writer points out, “the rapid pace of pharmaceutical innovation has resulted in a corresponding need for the discovery of new diseases as well. As long as the drug industry continues to develop new products, the American Psychiatric Association guarantees a steady supply of new diseases requiring treatment.” And these find their way into the DSM. There are “diseases and subcategories, co-morbidities, prodromal forms of combined clinical subtypes, shadow syndromes and the like. ..(also) the catch-all category known as Not Otherwise Specified, or NOS, which is applied whenever the symptoms of any given mental disorder do not meet the criteria of any specific disorder within that category.” (bonkersinstitute.org)
Every new disorder is supposed to meet a host of criteria before being accepted into the manual. But transparency is a big issue and “behind the dispute is the question of whether the vague, open-ended terms being discussed even come close to describing real psychiatric disorders,” writes Lane in the Los Angeles Times. One of the past consultants to the DSM, he says, has revealed that editorial meetings over changes “were often chaotic. There was very little systematic research.” And the main author of the previous volume, Robert Spitzer, said he's against science by committee because of the willy-nilly way that psychiatrists have defined dozens of disorders in the past.
There is suspicion, too, that industry profit motives are bound to influence what goes into the DSM. Lane's book, “Shyness,” exposes efforts of the big drug companies to have shy people view themselves as mentally ill. He cites “the manipulations that promoted social anxiety disorder to a national emergency,” created by Madison Avenue and Big Pharma that have led to billions in profits for the companies. An ad for Zoloft in the American Journal of Psychiatry, August 2003, for instance, shows a woman with downcast eyes and asks: Is she just shy? Or does she have social anxiety disorder?
Sadness is another trait that is focused on. In “The Loss of Sadness,” Allan Horwitz and Jerome Wakefield comment on the fact that depression is now declared epidemic around the world by the World Health Organization. “Those judgments rest on failure to distinguish between major depression, indeed devastating to its sufferers, and lesser episodes of sadness, they argue. “Episodic sadness has always been a socially approved means of adjusting to misfortune and much is lost, both medically and culturally, when it is misread as a depressive disorder.”
The book implies that nearly every non-psychiatric complaint is subject to over-diagnosis unless contextual factors—familial, cultural, relational, financial—are weighed in the balance.” The authors beg the compilers of DSM-V to inquire into each patient's circumstances before concluding that they are faced with a bona fide disorder. But as author Crews points out, the DSM's inability to separate “vague discontents from real maladies” serves the profit making purposes of the medical profession and isn't likely to be changed. (Roy Neville)
From Sad to Mad—the new DSM-V is to be issued in 2012
Part 1--Mystery surrounds picking the diagnoses to be included
The bible of the psychiatric world, the Diagnostic and Statistical Manual of Mental Disorders, produced by the American Psychiatric Association, is being rewritten to produce a new version in 2012, a dozen years since the last revision known as the DSM-IV-TR. A draft was issued Feb. 10 to show the world some new diagnoses, like temper dysregulation, and for the first time it calls for binge eating and gambling to be considered disorders.
The fifth revision of this masterful document, which is routinely used by mental health professionals when treating patients and helps insurance companies decide what disorders to cover, serves as well as for clinicians, courts, prisons, drug companies and agencies that regulate drugs. Countries all over the world treat the DSM as gospel, so even minor changes and additions will have powerful ripple effects on mental health diagnoses around the world, notes Christopher Lane writing in the Los Angeles Times (Nov. 16, 2008).
As patients and their families know, a doctor, clinician or other practitioner had better line up treatment that is consistent with one or more of the codes for the individual disorders listed in the diagnostic manual. That's so Medicaid, Medicare or other insurance or NYS-subsidized mental health services, which have their own lists of codes (these may correlate directly to the DSM) can determine which get reimbursed and which do not. These decisions become major issues for community mental health providers in housing, rehabilitation, social and vocational programs, as well as clinics, hospitals and emergency facilities. Some services are declared non-medical or unauthorized for the patient's circumstances and won't be reimbursed.
There are several themes here: (1) how the authors of the new volume deal with the increasing clutter of diagnoses and how they separate them into definable diseases or various non-disease conditions; (2) the secrecy felt to be needed by the authors in researching and analyzing these disorders to avoid bias and lend scientific reliability to the DSM's goals; and (3) whether the ever-expanding numbers of disease categories reflect the pressures of doctors, the medical products industry and drug companies to make bigger profits from the over-diagnosis of these disorders.
In press releases Feb. 10 the draft document is said to leave out obesity as a formal diagnosis, internet addiction or sex addiction, as some have proposed. A bone of contention in the new document is that the checklists of symptoms a patient needs to have to add up to a disorder will be replaced with a scale of severity for every disorder. The experts at the APA say the checklists don't really capture how mental disorders work in the real world.
The DSM is like a cookbook of recipes. For example, in diagnosing major depression, doctors use a checklist of nine symptoms. Patients who meet five out of nine criteria can be said to have major depression. Under the newly proposed system, the severity of the symptoms a patient has would be factored into the diagnosis. The DSM isn't about treatments, unlike the PDR (Physicians Desk Reference) created by the industry for prescription drugs and used as guidelines for treatment.
Discussion of what goes in the manual already has drawn hot reaction from critics and supporters in articles and a book or two over the way the DSM-IV treats the huge array of illnesses and common emotional attitudes like shyness and sadness. Scientists are battling over whether the next revision should be done openly so mental health professionals and the public can follow along, or whether the debate should be held in secret.
As the Lane article puts it, “hanging in the balance is whether, three years from now a set of questionable behaviors with names such as apathy disorder, parental alienation syndrome, premenstrual dysphoric disorder, compulsive buying disorder, internet addiction and relational disorder will be considered full-fledged psychiatric illnesses.” It may sound like an insignificant spat, he remarks, “but the debates have far-reaching consequences. To large numbers of experts, apathy, compulsive shopping and parental alienation are symptoms of psychological conflict rather than full scale mental illnesses.” (Roy Neville)
The bible of the psychiatric world, the Diagnostic and Statistical Manual of Mental Disorders, produced by the American Psychiatric Association, is being rewritten to produce a new version in 2012, a dozen years since the last revision known as the DSM-IV-TR. A draft was issued Feb. 10 to show the world some new diagnoses, like temper dysregulation, and for the first time it calls for binge eating and gambling to be considered disorders.
The fifth revision of this masterful document, which is routinely used by mental health professionals when treating patients and helps insurance companies decide what disorders to cover, serves as well as for clinicians, courts, prisons, drug companies and agencies that regulate drugs. Countries all over the world treat the DSM as gospel, so even minor changes and additions will have powerful ripple effects on mental health diagnoses around the world, notes Christopher Lane writing in the Los Angeles Times (Nov. 16, 2008).
As patients and their families know, a doctor, clinician or other practitioner had better line up treatment that is consistent with one or more of the codes for the individual disorders listed in the diagnostic manual. That's so Medicaid, Medicare or other insurance or NYS-subsidized mental health services, which have their own lists of codes (these may correlate directly to the DSM) can determine which get reimbursed and which do not. These decisions become major issues for community mental health providers in housing, rehabilitation, social and vocational programs, as well as clinics, hospitals and emergency facilities. Some services are declared non-medical or unauthorized for the patient's circumstances and won't be reimbursed.
There are several themes here: (1) how the authors of the new volume deal with the increasing clutter of diagnoses and how they separate them into definable diseases or various non-disease conditions; (2) the secrecy felt to be needed by the authors in researching and analyzing these disorders to avoid bias and lend scientific reliability to the DSM's goals; and (3) whether the ever-expanding numbers of disease categories reflect the pressures of doctors, the medical products industry and drug companies to make bigger profits from the over-diagnosis of these disorders.
In press releases Feb. 10 the draft document is said to leave out obesity as a formal diagnosis, internet addiction or sex addiction, as some have proposed. A bone of contention in the new document is that the checklists of symptoms a patient needs to have to add up to a disorder will be replaced with a scale of severity for every disorder. The experts at the APA say the checklists don't really capture how mental disorders work in the real world.
The DSM is like a cookbook of recipes. For example, in diagnosing major depression, doctors use a checklist of nine symptoms. Patients who meet five out of nine criteria can be said to have major depression. Under the newly proposed system, the severity of the symptoms a patient has would be factored into the diagnosis. The DSM isn't about treatments, unlike the PDR (Physicians Desk Reference) created by the industry for prescription drugs and used as guidelines for treatment.
Discussion of what goes in the manual already has drawn hot reaction from critics and supporters in articles and a book or two over the way the DSM-IV treats the huge array of illnesses and common emotional attitudes like shyness and sadness. Scientists are battling over whether the next revision should be done openly so mental health professionals and the public can follow along, or whether the debate should be held in secret.
As the Lane article puts it, “hanging in the balance is whether, three years from now a set of questionable behaviors with names such as apathy disorder, parental alienation syndrome, premenstrual dysphoric disorder, compulsive buying disorder, internet addiction and relational disorder will be considered full-fledged psychiatric illnesses.” It may sound like an insignificant spat, he remarks, “but the debates have far-reaching consequences. To large numbers of experts, apathy, compulsive shopping and parental alienation are symptoms of psychological conflict rather than full scale mental illnesses.” (Roy Neville)
Monday, February 1, 2010
Mentally ill prisoners moving into new residential housing
State Office of Mental Health in a blustery press release says a “first of the nation” residential mental health unit has opened at Marcy Correctional Facility in Oneida County, the result of a 2007 court settlement which forced the state to move mentally ill inmates out of the SHUs (special housing units).
The program, developed by the state Office of Mental Health with the Corrections Department, began taking the first of about 100 inmates in December from various prisons around the state who reside in or are candidates for the notorious special housing (the box, or solitary confinement) and have serious mental illness. The advocacy law firm that won the case against NY state is proud of achieving reform, as are supporters, considering the state has spent almost three years and over $50 million to set it up.
The state was forced to budget $57 million to convert one of its two-story cell blocks at Marcy to the new facility after an out of court settlement in 2007 with Disability Advocates, Inc. of Albany and its law partners. The not for profit law firm, which has won other high-profile lawsuits against the state, claimed that prisoners were put in solitary confinement or lockdown in their own cells because of infractions that were often brought about by their mental illness, not unruly behavior from other causes.
It also charged that disproportionate numbers of mentally ill inmates have been placed in special housing and have spent longer terms there, some for years. This is discriminatory and abusive. Special housing units in NY State prisons consist of locked steel boxes or cages with no amenities where the inmate is locked in for 23 of every 24 hours, given one hour of recreation. The practice, which NYS prisons feature, has brought outcries from families, including those in a prisoners' rights group called MHASC (mental health alternatives to solitary confinement). This group calls the confining boxes torture chambers and has pushed for a SHU bill in the legislature for years to end special housing in prison for the mentally ill altogether. The SHU bill asks the state to review inmates' disciplinary sentences, including those with the most difficult to treat symptoms, in order to remove them from solitary confinement.
Freed from a cell up to four hours a day
According to the state's release, the new facility will replace solitary and offer three or four hours a day for treatment and recreation. When the agreement was announced in April 2007, Cliff Zucker, executive director for Disability Advocates, said “It's going to make a tremendous difference. There are people with serious mental illness who are very, very ill in SHU receiving little treatment and many of those people are discharged directly from those solitary confinement cells to the street.”
MHASC has written that the settlement would make conditions better for mentally ill inmates but improvements were still needed. Keeping people with psychiatric disabilities in isolation units amounts to torture and often exacerbates their illness, they said. They cited cases in which inmates have taken their own lives under those conditions and put the safety of correction officers and others at risk, according to the NY Times (April 23, 2007).
The court agreement came at a time when the legislature, led by Jeff Aubrey in the Assembly and Mike Nozzolio in the Senate, was struggling to pass identical bills that would outlaw putting mentally ill inmates in the special housing. Those bills would set up the residence program and add staff from mental health and corrections to manage these inmates. They also called for more training and an oversight commission to look into abuses of the mentally ill in prison. The bills finally passed, to be implemented in 2011. Then Governor Eliot Spitzer cut back on some provisions and moved to delay its start till 2014. Advocates argued successfully to restore 2011 for startup last summer.
State officials are crowing
Now for the latest release. It says the new facility has opened and “participants will have the opportunity to develop skills that address their individual needs, with at least four hours a day of out of cell treatment and programming, primarily in open group settings. Congregate exercise will be allowed for inmates who have demonstrated treatment progress.” It says earlier steps have included screening on admission for all inmates, a wide array of treatment programs and special attention to aftercare when they're released (per OMH Commissioner Michael Hogan).
But a lawyer at Disability Advocates has some questions in the early going. She said while many prisoners are designated as having serious mental illness, not all have been designated with serious mental illness who should be. The big goal is the quality of the program, she pointed out, and people should be assessed so they have this program if needed. Some of those have BHUs, behavioral health units, for the men where they already get four hours a day out of the cell in the later phases., but the program has not been a success, with few inmates graduating and now it has a very low enrollment. The RMHU (residential mental health unit) will need to be different. Corrections officers will have to be well trained and stay with the program, she added.
The mentally ill shouldn't be in there at all
It's the remorseless tone of the state press release that gets you down. They don't admit to any wrong. They think the world should reward them for what they've done to help. Sure, the settlement is a triumph for the law firm in Albany, the families and the men themselves. But look at this: Here are men who are very sick, who may well have been jailed because of what their mental illness caused, not their being criminals with prior records. They've been pushed around by a hide-bound prison system that rewards order and discipline and punishes slowness to react and follow directions. Some can't adjust to those conditions. If they are stuck in solitary, their illness gets worse in these tiny cells and causes them to become more disruptive than before. That in turn, lengthens their sentence in the SHU.
The court agreed that these men are being abused and maltreated because of their mental illness. But in its first resounding statement to mark the opening of its “new Jerusalem” facility, NY State goes on record as saying the new program “builds on 15 years of enhanced services for inmates with mental illness.” The state fails to accept that tens of thousands of mentally ill prisoners—fathers and sons and husbands, people we know, have been thrust into these awful cells. And they all have to come out of there some day. Instead, the state boasts about how good it will be for some of them, up to 100 at a time, to get three or four hours out of a cell each day instead of one hour.
The press release calls this “the most comprehensive and complex mental health prison treatment program developed in the US in the past 20 years.” One might add that only in New York, with its regressive prison mentality toward the mentally ill do they need such a momentous change of policy. They've spent millions of dollars of taxpayer money on the new prison blocks with their uncompromising rows of steel cells. The prison unions seem to have gotten what they want out of this: more than $50 million in new construction, hiring a considerable number of additional security guards and special training for the guards and their supervisors to manage things in the new residence units. The press release says this would be one-week training, which won't go very far unless the men are well motivated.
What they're doing is still a long way from what is needed. Someone mentally sick and disruptive should get help through the Kendra's Law program and alternative treatment courts before they have to go to jail or prison. They need to hook up with medical treatment and services in the community, and someone should be held responsible to see they stay on medicine. If they can't make it they need to be placed in temporary hospital custody where treatment is at hand, as many times as necessary; not put in the unholy places our prisons have become. (Roy Neville)
The program, developed by the state Office of Mental Health with the Corrections Department, began taking the first of about 100 inmates in December from various prisons around the state who reside in or are candidates for the notorious special housing (the box, or solitary confinement) and have serious mental illness. The advocacy law firm that won the case against NY state is proud of achieving reform, as are supporters, considering the state has spent almost three years and over $50 million to set it up.
The state was forced to budget $57 million to convert one of its two-story cell blocks at Marcy to the new facility after an out of court settlement in 2007 with Disability Advocates, Inc. of Albany and its law partners. The not for profit law firm, which has won other high-profile lawsuits against the state, claimed that prisoners were put in solitary confinement or lockdown in their own cells because of infractions that were often brought about by their mental illness, not unruly behavior from other causes.
It also charged that disproportionate numbers of mentally ill inmates have been placed in special housing and have spent longer terms there, some for years. This is discriminatory and abusive. Special housing units in NY State prisons consist of locked steel boxes or cages with no amenities where the inmate is locked in for 23 of every 24 hours, given one hour of recreation. The practice, which NYS prisons feature, has brought outcries from families, including those in a prisoners' rights group called MHASC (mental health alternatives to solitary confinement). This group calls the confining boxes torture chambers and has pushed for a SHU bill in the legislature for years to end special housing in prison for the mentally ill altogether. The SHU bill asks the state to review inmates' disciplinary sentences, including those with the most difficult to treat symptoms, in order to remove them from solitary confinement.
Freed from a cell up to four hours a day
According to the state's release, the new facility will replace solitary and offer three or four hours a day for treatment and recreation. When the agreement was announced in April 2007, Cliff Zucker, executive director for Disability Advocates, said “It's going to make a tremendous difference. There are people with serious mental illness who are very, very ill in SHU receiving little treatment and many of those people are discharged directly from those solitary confinement cells to the street.”
MHASC has written that the settlement would make conditions better for mentally ill inmates but improvements were still needed. Keeping people with psychiatric disabilities in isolation units amounts to torture and often exacerbates their illness, they said. They cited cases in which inmates have taken their own lives under those conditions and put the safety of correction officers and others at risk, according to the NY Times (April 23, 2007).
The court agreement came at a time when the legislature, led by Jeff Aubrey in the Assembly and Mike Nozzolio in the Senate, was struggling to pass identical bills that would outlaw putting mentally ill inmates in the special housing. Those bills would set up the residence program and add staff from mental health and corrections to manage these inmates. They also called for more training and an oversight commission to look into abuses of the mentally ill in prison. The bills finally passed, to be implemented in 2011. Then Governor Eliot Spitzer cut back on some provisions and moved to delay its start till 2014. Advocates argued successfully to restore 2011 for startup last summer.
State officials are crowing
Now for the latest release. It says the new facility has opened and “participants will have the opportunity to develop skills that address their individual needs, with at least four hours a day of out of cell treatment and programming, primarily in open group settings. Congregate exercise will be allowed for inmates who have demonstrated treatment progress.” It says earlier steps have included screening on admission for all inmates, a wide array of treatment programs and special attention to aftercare when they're released (per OMH Commissioner Michael Hogan).
But a lawyer at Disability Advocates has some questions in the early going. She said while many prisoners are designated as having serious mental illness, not all have been designated with serious mental illness who should be. The big goal is the quality of the program, she pointed out, and people should be assessed so they have this program if needed. Some of those have BHUs, behavioral health units, for the men where they already get four hours a day out of the cell in the later phases., but the program has not been a success, with few inmates graduating and now it has a very low enrollment. The RMHU (residential mental health unit) will need to be different. Corrections officers will have to be well trained and stay with the program, she added.
The mentally ill shouldn't be in there at all
It's the remorseless tone of the state press release that gets you down. They don't admit to any wrong. They think the world should reward them for what they've done to help. Sure, the settlement is a triumph for the law firm in Albany, the families and the men themselves. But look at this: Here are men who are very sick, who may well have been jailed because of what their mental illness caused, not their being criminals with prior records. They've been pushed around by a hide-bound prison system that rewards order and discipline and punishes slowness to react and follow directions. Some can't adjust to those conditions. If they are stuck in solitary, their illness gets worse in these tiny cells and causes them to become more disruptive than before. That in turn, lengthens their sentence in the SHU.
The court agreed that these men are being abused and maltreated because of their mental illness. But in its first resounding statement to mark the opening of its “new Jerusalem” facility, NY State goes on record as saying the new program “builds on 15 years of enhanced services for inmates with mental illness.” The state fails to accept that tens of thousands of mentally ill prisoners—fathers and sons and husbands, people we know, have been thrust into these awful cells. And they all have to come out of there some day. Instead, the state boasts about how good it will be for some of them, up to 100 at a time, to get three or four hours out of a cell each day instead of one hour.
The press release calls this “the most comprehensive and complex mental health prison treatment program developed in the US in the past 20 years.” One might add that only in New York, with its regressive prison mentality toward the mentally ill do they need such a momentous change of policy. They've spent millions of dollars of taxpayer money on the new prison blocks with their uncompromising rows of steel cells. The prison unions seem to have gotten what they want out of this: more than $50 million in new construction, hiring a considerable number of additional security guards and special training for the guards and their supervisors to manage things in the new residence units. The press release says this would be one-week training, which won't go very far unless the men are well motivated.
What they're doing is still a long way from what is needed. Someone mentally sick and disruptive should get help through the Kendra's Law program and alternative treatment courts before they have to go to jail or prison. They need to hook up with medical treatment and services in the community, and someone should be held responsible to see they stay on medicine. If they can't make it they need to be placed in temporary hospital custody where treatment is at hand, as many times as necessary; not put in the unholy places our prisons have become. (Roy Neville)
Saturday, January 30, 2010
When can a mental health housing provider remove a mentally ill person from his or her apartment?
Under what circumstances might a housing provider for people with mental illness in this area remove a resident from a group home or apartment? And in what cases may a housing sponsor refuse someone with mental illness who has applied and waited his or her turn for an available bed? Answers are a bit elusive while the questions get more important now. The state Office of Mental Illness has scaled back its annual contract awards to the counties for apartment and group home beds in the severe economic environment we have. The implication is that the state is pressuring the housing agencies to move people along faster from the more heavily serviced end of the spectrum of publicly subsidized beds to those with less support or to beds with no support at all. And there is evidence for this happening here.
Also, in the group homes and apartments run by mental health housing providers today there are more seriously mentally ill than before and those with a variety of co-existing medical and behavioral conditions. The state is known to pressure the housing providers to take in more patients from this mix, including the worst off, rather than have them sent to nursing homes or special care facilities which are more costly. So issues are sure to come to the forefront in the agencies about accepting someone with greater health complications for placement or not, and whether a resident is entitled to stay on with the agency once a complicating condition is noticed or aggravated.
The two main suppliers of apartments and group home beds in this county are Mohawk Opportunities and Rehabilitation Support Services (Schenectady YMCA has state subsidized beds but it primarily serves a broader clientele). Word has leaked out from families that here and there are examples where group home and apartment dwellers have been asked to move along the line or even out of the apartment system altogether. There might be several reasons for this, for example, the person's social and rehabilitation goals no longer fit the program at the level he is in with the housing sponsor. So he can logically be switched to another apartment giving him more independence, even if he isn't ready to move.
What are tenant rights in this regard? First, it's clear those who reside in the subsidized apartments have the same protections granted to all tenants under landlord-tenant laws in NY State. That means that tenants have due process—the tenant has to be notified of the charges against him ahead of a hearing in court, and can only be evicted for non payment of rent or behaviors that have led to complaints and would let a judge find good cause for removal, or for some other rules that favor landlords' regaining possession of their property.
And for the mentally ill specifically, here are rules in Section 595.9 of the state Office of Mental Health regulations: “A discharge planning process shall include, at a minimum, the following: (1) involvement of the resident, program staff, other community service providers, and collaterals as appropriate and agreed to by the resident; (2) clinical assessment of the resident's psychiatric status as well as his rehabilitation, physical, social and residential needs and goals, which is conducted by clinical staff. (3) p rovision to the resident of options. (4) referrals to appropriate community service and residential providers and (5) arrangements for appointments with service and residential providers.” It also says that to be “discharge-ready,” “the resident is willing to relocate to such housing.”
Furthermore there are the policy guidelines of the housing sponsors themselves. One of the agencies has these rules: “Decisions to discharge are based upon an individual's needs and circumstances. Discharges from the program are planned to correspond with an individual's achievement of rehabilitation goals....every effort is made to fully involve the individual, other service providers and his or her family in implementing a positive, planned discharge from the program.
“A written discharge summary/service plan is completed for every individual leaving the program. (It) indicates the circumstances surrounding discharge, summarizes progress in key areas, lists participants in the plan and includes services arranged and follow-up contacts. The guidelines also state, “when an individual satisfactorily demonstrates abilities in such areas as medication and symptom management, money management, personal hygiene, performing household chores, shopping, preparing meals, maintaining an adequate diet, etc., discharge is encouraged.”
With these safeguards would come the right to legal defense from attorneys at the Mental Hygiene Legal Service, part of the state Appellate Division court system.
Nevertheless, these rules don't make clear whether an agency can refuse to admit someone or remove a person who has a complex medical condition or behavioral problem or physical limitations. Many people living in the group homes have these special circumstances. Others have been asked to leave if they are using drugs or alcohol in the building, for instance, or if they are violent and pose a safety hazard to anybody else. It's the same with the broader population in the city--housing for the mentally ill doesn't seem different from group housing for drug dependent people or youth with problems or men and women living at the YMCA and YWCA.
Among the complicating conditions, the providers report that they are asked to take patients upon discharge from a hospital who are incontinent, and some of these people do reside in the homes. Are they entitled to refuse these patients from admission to a group home? There are residents with the HIV-AIDS virus. A staffer has suggested there is no reason for the other residents to fear having any of them as housemates. More objections might be posed to admitting someone with a criminal background because there have been occasions of reported theft of belongings or credit cards and misuse of the phone, for example. A parent insists the providers have to be more alert to this, given the vulnerability of these residents. There are also residents who cause accidents that might result in harm to themselves or others and endanger the facilities.
In each of these cases it would seem to depend on individual circumstances whether to admit someone or allow him to stay on. It should be up to the housing agency to decide if staff has the capability to manage patients with these complications, and not be forced by the state to accept patients otherwise. At the same time it is up to the agencies to show responsibility to admit patients waiting discharge from Ellis Hospital when they have a bed and reasonable ability to provide care for them. It would certainly save on the cost of care. (Roy Neville)
Also, in the group homes and apartments run by mental health housing providers today there are more seriously mentally ill than before and those with a variety of co-existing medical and behavioral conditions. The state is known to pressure the housing providers to take in more patients from this mix, including the worst off, rather than have them sent to nursing homes or special care facilities which are more costly. So issues are sure to come to the forefront in the agencies about accepting someone with greater health complications for placement or not, and whether a resident is entitled to stay on with the agency once a complicating condition is noticed or aggravated.
The two main suppliers of apartments and group home beds in this county are Mohawk Opportunities and Rehabilitation Support Services (Schenectady YMCA has state subsidized beds but it primarily serves a broader clientele). Word has leaked out from families that here and there are examples where group home and apartment dwellers have been asked to move along the line or even out of the apartment system altogether. There might be several reasons for this, for example, the person's social and rehabilitation goals no longer fit the program at the level he is in with the housing sponsor. So he can logically be switched to another apartment giving him more independence, even if he isn't ready to move.
What are tenant rights in this regard? First, it's clear those who reside in the subsidized apartments have the same protections granted to all tenants under landlord-tenant laws in NY State. That means that tenants have due process—the tenant has to be notified of the charges against him ahead of a hearing in court, and can only be evicted for non payment of rent or behaviors that have led to complaints and would let a judge find good cause for removal, or for some other rules that favor landlords' regaining possession of their property.
And for the mentally ill specifically, here are rules in Section 595.9 of the state Office of Mental Health regulations: “A discharge planning process shall include, at a minimum, the following: (1) involvement of the resident, program staff, other community service providers, and collaterals as appropriate and agreed to by the resident; (2) clinical assessment of the resident's psychiatric status as well as his rehabilitation, physical, social and residential needs and goals, which is conducted by clinical staff. (3) p rovision to the resident of options. (4) referrals to appropriate community service and residential providers and (5) arrangements for appointments with service and residential providers.” It also says that to be “discharge-ready,” “the resident is willing to relocate to such housing.”
Furthermore there are the policy guidelines of the housing sponsors themselves. One of the agencies has these rules: “Decisions to discharge are based upon an individual's needs and circumstances. Discharges from the program are planned to correspond with an individual's achievement of rehabilitation goals....every effort is made to fully involve the individual, other service providers and his or her family in implementing a positive, planned discharge from the program.
“A written discharge summary/service plan is completed for every individual leaving the program. (It) indicates the circumstances surrounding discharge, summarizes progress in key areas, lists participants in the plan and includes services arranged and follow-up contacts. The guidelines also state, “when an individual satisfactorily demonstrates abilities in such areas as medication and symptom management, money management, personal hygiene, performing household chores, shopping, preparing meals, maintaining an adequate diet, etc., discharge is encouraged.”
With these safeguards would come the right to legal defense from attorneys at the Mental Hygiene Legal Service, part of the state Appellate Division court system.
Nevertheless, these rules don't make clear whether an agency can refuse to admit someone or remove a person who has a complex medical condition or behavioral problem or physical limitations. Many people living in the group homes have these special circumstances. Others have been asked to leave if they are using drugs or alcohol in the building, for instance, or if they are violent and pose a safety hazard to anybody else. It's the same with the broader population in the city--housing for the mentally ill doesn't seem different from group housing for drug dependent people or youth with problems or men and women living at the YMCA and YWCA.
Among the complicating conditions, the providers report that they are asked to take patients upon discharge from a hospital who are incontinent, and some of these people do reside in the homes. Are they entitled to refuse these patients from admission to a group home? There are residents with the HIV-AIDS virus. A staffer has suggested there is no reason for the other residents to fear having any of them as housemates. More objections might be posed to admitting someone with a criminal background because there have been occasions of reported theft of belongings or credit cards and misuse of the phone, for example. A parent insists the providers have to be more alert to this, given the vulnerability of these residents. There are also residents who cause accidents that might result in harm to themselves or others and endanger the facilities.
In each of these cases it would seem to depend on individual circumstances whether to admit someone or allow him to stay on. It should be up to the housing agency to decide if staff has the capability to manage patients with these complications, and not be forced by the state to accept patients otherwise. At the same time it is up to the agencies to show responsibility to admit patients waiting discharge from Ellis Hospital when they have a bed and reasonable ability to provide care for them. It would certainly save on the cost of care. (Roy Neville)
Friday, January 22, 2010
Why should parents let their adult children go?
Part 2
Social workers (not Kevin Moran, our counselor at the Ellis Hospital support group) have at times accused the parents of coddling a son or daughter who has a serious mental illness or of abetting their bad behavior. That's because we lean over backwards to help them and sometimes lean too far. Now look at the examples we have of the difficulties parents face. (I've heard them interminably at our support group meetings.) And you'll see why we have to persist as not only the main source of their support but as advocates who justly seek more for them.
The question is whether parents try to do too much for this bunch of sometimes disorderly citizens, our mentally ill children, who live on the verge of society. Or whether we are right to do all we can, and in fact, should fight much harder on their behalf. After all, they are very sick at times and their conditions are so variable and present such complexities for treatment, we can't expect the mental health system to meet all their needs, or ours. But if we don't press harder, who is going to do it for them?
Listen to the stories of parents who come to the support group and you'll see that all is not right with services and benefit programs. They make the case that we ought to scream much louder to get people access to housing and clinic and into a bed if that's what is needed. Families want to help but can't because of bureaucratic rules and backlogs and the usual hangups of lack of staff or money. But the people in charge have no excuse when someone is truly sick and needs services now—not at the end of the line.
The government based mental health system defies logic and is blocked up needlessly. The mental health clinics in these counties are badly backed up, doctors are few and some are foreign speaking who may not fully understand our culture; children's services are weaker than adult services, with much less to offer. As an adult you must wait longer than necessary for the available apartments, SRO and group residence beds. You will meet obstacles applying for and getting approved for social services emergency benefits in this county, social security, Medicaid or Medicare, housing of all types, service visits to the home, children's services, transition services for teenagers moving into the adult system, drug and alcohol services—all in the mental health arena. Tragically, the jail is the only place where mentally ill people don't wait to get in and get a little attention.
Here are more complaints: social workers at the clinic do not mesh well with housing people and jobs people and continuing treatment and the alcohol counselors—some say, in order to hold onto their clients. They are mostly trained to do talk therapy and it won't do the trick for seriously ill people. The system has waiting lists and waiting lines, single points of entry that slow the process, rules that forbid someone on Medicaid from receiving two or more of the same kind of services at the same time, much too much paperwork for hospital and outpatient staff, big clogs in the hospital emergency room and psychiatric crisis service. In short, what parents say is that the system is muddled up, particularly to the new and uninitiated. It is as full of potholes as a late winter day in Schenectady. You have applications and approvals, confirmations and certifications, appeals and denials—enough to make many of us give up. It's why we have to go front for our loved ones more aggressively than before.
One of the parents in the circle has a son who takes off for NY City—he has no money, no friends there, just on his own. They get a call from him at a shelter. It's a different shelter this time. Is he safe? It can't be good. Someone's going to line up a job, he says. They will wire money That's what they live with, the anxiety of receiving the next phone call.
Another mother reports her son lived in his truck for much of the year, sponging off the parents, after he was hospitalized and then refused to take meds. He won't go in for treatment, he lost his job and broke up with his girlfriend. He doesn't speak civilly to his parents. Mom finally enrolled him in Medicaid. She's worried, forlornly searches for help.
And there's a couple with a daughter in her early 20s who repeatedly gets in trouble with the law, is in and out of hospitals, arrested and jailed in different counties. Her mother says she's cute as a pin. What's to become of her? I'll tell you what. It's more heart rending than most counselors or outsiders can imagine. The parents had nearly given up. Their lives were in turmoil with their daughter in and out of scrapes until they had a change of heart. If she wouldn't take their advice, they wouldn't let her back in the house. That was the game plan. But this is a young woman with all kinds of ambition and talent—she's held jobs and graduated college and no one gives up on someone so promising, yet so absorbed in her sickness and addiction.
So a few months ago she asked to come back once again, contritely, and her mother accepted. It lasted only a few weeks before her daughter absconded with a boyfriend, someone they disapprove of. They love the girl, like we all love our children. Their defense is like that of many of us, a kind of tough love, dealing with the unexpected and every possible disappointment. Nobody said it was going to be easy.
We don't give up on our children, even over a lifetime, but we won't try to fix their ways any more. Usually medicine and treatment can hold things even. If he or she is non-compliant, we must wait till they've faced enough of the pain and the tough life of going it alone. Then maybe he or she will come in to the clinic on their own. We'll be there for them. (Roy Neville)
Social workers (not Kevin Moran, our counselor at the Ellis Hospital support group) have at times accused the parents of coddling a son or daughter who has a serious mental illness or of abetting their bad behavior. That's because we lean over backwards to help them and sometimes lean too far. Now look at the examples we have of the difficulties parents face. (I've heard them interminably at our support group meetings.) And you'll see why we have to persist as not only the main source of their support but as advocates who justly seek more for them.
The question is whether parents try to do too much for this bunch of sometimes disorderly citizens, our mentally ill children, who live on the verge of society. Or whether we are right to do all we can, and in fact, should fight much harder on their behalf. After all, they are very sick at times and their conditions are so variable and present such complexities for treatment, we can't expect the mental health system to meet all their needs, or ours. But if we don't press harder, who is going to do it for them?
Listen to the stories of parents who come to the support group and you'll see that all is not right with services and benefit programs. They make the case that we ought to scream much louder to get people access to housing and clinic and into a bed if that's what is needed. Families want to help but can't because of bureaucratic rules and backlogs and the usual hangups of lack of staff or money. But the people in charge have no excuse when someone is truly sick and needs services now—not at the end of the line.
The government based mental health system defies logic and is blocked up needlessly. The mental health clinics in these counties are badly backed up, doctors are few and some are foreign speaking who may not fully understand our culture; children's services are weaker than adult services, with much less to offer. As an adult you must wait longer than necessary for the available apartments, SRO and group residence beds. You will meet obstacles applying for and getting approved for social services emergency benefits in this county, social security, Medicaid or Medicare, housing of all types, service visits to the home, children's services, transition services for teenagers moving into the adult system, drug and alcohol services—all in the mental health arena. Tragically, the jail is the only place where mentally ill people don't wait to get in and get a little attention.
Here are more complaints: social workers at the clinic do not mesh well with housing people and jobs people and continuing treatment and the alcohol counselors—some say, in order to hold onto their clients. They are mostly trained to do talk therapy and it won't do the trick for seriously ill people. The system has waiting lists and waiting lines, single points of entry that slow the process, rules that forbid someone on Medicaid from receiving two or more of the same kind of services at the same time, much too much paperwork for hospital and outpatient staff, big clogs in the hospital emergency room and psychiatric crisis service. In short, what parents say is that the system is muddled up, particularly to the new and uninitiated. It is as full of potholes as a late winter day in Schenectady. You have applications and approvals, confirmations and certifications, appeals and denials—enough to make many of us give up. It's why we have to go front for our loved ones more aggressively than before.
One of the parents in the circle has a son who takes off for NY City—he has no money, no friends there, just on his own. They get a call from him at a shelter. It's a different shelter this time. Is he safe? It can't be good. Someone's going to line up a job, he says. They will wire money That's what they live with, the anxiety of receiving the next phone call.
Another mother reports her son lived in his truck for much of the year, sponging off the parents, after he was hospitalized and then refused to take meds. He won't go in for treatment, he lost his job and broke up with his girlfriend. He doesn't speak civilly to his parents. Mom finally enrolled him in Medicaid. She's worried, forlornly searches for help.
And there's a couple with a daughter in her early 20s who repeatedly gets in trouble with the law, is in and out of hospitals, arrested and jailed in different counties. Her mother says she's cute as a pin. What's to become of her? I'll tell you what. It's more heart rending than most counselors or outsiders can imagine. The parents had nearly given up. Their lives were in turmoil with their daughter in and out of scrapes until they had a change of heart. If she wouldn't take their advice, they wouldn't let her back in the house. That was the game plan. But this is a young woman with all kinds of ambition and talent—she's held jobs and graduated college and no one gives up on someone so promising, yet so absorbed in her sickness and addiction.
So a few months ago she asked to come back once again, contritely, and her mother accepted. It lasted only a few weeks before her daughter absconded with a boyfriend, someone they disapprove of. They love the girl, like we all love our children. Their defense is like that of many of us, a kind of tough love, dealing with the unexpected and every possible disappointment. Nobody said it was going to be easy.
We don't give up on our children, even over a lifetime, but we won't try to fix their ways any more. Usually medicine and treatment can hold things even. If he or she is non-compliant, we must wait till they've faced enough of the pain and the tough life of going it alone. Then maybe he or she will come in to the clinic on their own. We'll be there for them. (Roy Neville)
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