Posts
What does that mean?
Did you notice the behaviorists are changing the vocabulary on us?. The nabobs at the head of our federal mental health establishment like SAMHSA (substance abuse and mental health services administration) are now using the term “behavioral health care” to mean serious mental illness along with addictions and lesser mental problems. When the term is used to lump together mental illnesses like schizophrenia with substance abuse it indicates we are mainly looking at behavior and that isn't the central point about schizophrenia. Treating the illness is. There must be something behind it.
I suggest policy leaders at SAMHSA and the doctors and researchers and think tanks they do business with have invented the new behavioral health care terminology as cover to hide a variety of sins. They haven't had much success with solving the problems of schizophrenia and how the brain works in the research field. Both community and hospital care for the mentally ill are getting too expensive to go on growing indefinitely. And there's a flap all over the country about over-drugging children and over-medicalizing the treatment of serious mental illness in adults that has more than its share of critics.
Otherwise why would they call treatment of mental illnesses like schizophrenia “behavioral health care”? Surely the two concepts are separate and can't be combined. But they use the two interchangeably.
Look at the stuff they are putting out. SAMHSA is promoting the mental health patient recovery movement, the idea that even people with schizophrenia or bipolar disorder or severe depression can recover, perhaps fully. It wrote a release recently to announce it awarded grants to five national behavioral health care provider associations to hasten adoption of recovery-oriented practices in the delivery of mental health services. Two of them are the American Psychiatric Association and American Psychological Association, sure to benefit from the booming business ahead. Why would SAMHSA refer to them this way?
The NY State commissioner of mental health, Michael Hogan, uses the term, too. In an article in the National Council for Community Behavioral Healthcare's recent issue, he writes, “the general health sector, without our help, is incapable of reliably delivering good behavioral healthcare. We see this across the life span in care for depression.” What? Hasn't the psychiatric profession relied on general practitioner doctors for a century to treat ordinary depression in their patients?.
The National Association of Community Health and Developmental Disabilities Directors claims to be the national voice for county and local behavioral health and developmental disability groups. Its aims are to improve behavioral health services. Dr. Ron Mandershein, director of their group, asks members: “Will counties become the locus for a behavioral health/medical health home? That would be a kind of one-stop service center for people with mental illness and substance abuse problems.
A related group called ACMHJA, the College for Behavioral Health Leadership, held a summit recently for national behavioral health leaders, meaning those in mental health and addictions treatment.
Milbank Memorial Fund has issued a report on integrating primary care and behavioral health care. It speaks of “coordinated care services delivery models—those that connect behavioral and physical health.” It doesn't mean just drug addiction services—they're combined with mental health care plus general medicine in their usage..
The trouble with the combining form is that historically, behavioral health has referred to substance abuse and addiction, not psychiatric health. It has to do with people's behavior, not the illness itself. And while people with serious mental illness have some odd behaviors indeed, the focus is on the symptoms themselves and the services that doctors and medicine and organized systems of hospital and community care can afford this population.
Now, people with drug addiction can be sick, too. They need medical care and counseling and the rest. But their condition, for most of them, is volitional—they take drugs, abuse drugs, commit crimes for drugs, wind up in jail and prison for drugs, and can get off drugs and get clean if they want. A smaller number, I believe, has a greater propensity for being addicted to drugs than other people. This appears to be genetic and is also the product of their environment. We live at a time when illegal drugs are often available and people have the freedom to take them. However, like being obese or smoking cigarettes, taking drugs is a liberty that can be abused and costs the rest of us a high price.
The people with a schizophrenia don't think of their illness as volitional. They didn't bring it on themselves. It's stigmatizing and cruel. It's in a separate world from the addictions recovery business. (Roy Neville)
Friday, August 20, 2010
Monday, August 16, 2010
Why take a job?
Too much hype about jobs and recovery being promoted by PROS
PROS (personal oriented recovery services) as we know now, has three components and a clinic part to it—comprehensive rehab, intensive rehab and ongoing rehab. The first seems the most flexible to its adherents, letting people with mental illnesses and behavioral problems sign up for stress management and living skills and symptom reduction courses, for example. The other two are job oriented—teaching how to get a job, assisting in one's training and placement, and following up to see he or she stays in the job once landed.
The central idea is to expose people with serious mental illness to the world of work, to force them to focus on their own recovery. And that means for most of them, becoming capable of holding a job of some kind – the PROS minimum is 10 hours a week—but better still, it is to earn them a place in the competitive work world, working over 20 hours a week at a fulfilling job that will make them more self reliant and independent citizens
Now, people say they do want to work. That's okay--we already have existing opportunities for jobs that are part time and temporary. From what I read, PROS designers want more than that. They want these denizens of “smoking and rocking clubs” as one of them puts it, to wake up and go get themselves a real job with good wages and full days work. One wonders if they have any idea at all what serious mental illness is all about.
And if these managers disregard the barriers that someone has with mental illness—like distraction and relapse and sedation from the medicines they're taking; or persistent physical ailments, sleepiness, moodiness, anger—what can we expect from them?
Instead of offering some creative job ideas like apprenticing people in a trade or sending someone to a community college for courses that are tied to a specific job and employer, PROS will put people into the classroom to learn about work in general. The consumers are tired of resume writing and someone asking them what they want to do. PROS won't improve on affirmative businesses that employ consumers now and really do teach job skills and savvy in a protected environment, like Pie in the Sky Bakery in Albany. It has operated for over 30 years. People at RSS say it will have to be restructured to qualify it to continue as a PROS. If it's been good enough to serve hundreds of people until now, why does PROS even want to change it?
And our local providers employ quite a few of the consumers in their programs in-house to answer the phone, do business office functions, drive trucks, clean the rooms. These may need special dispensation from the state nabobs to continue if Reinvestment and Community Support Services funds vanish. With VESID funding, RSS and Northeast Career Planning have trained and placed people in outside jobs and coached them, along with the OMH. This arrangement should survive but it too, may change under federal rules for Medicaid participation. We also have peer assistants who work with patients inside Ellis Hospital and there are bridgers who do liaison work for patients coming out of hospital in other areas.
These jobs don't usually jeopardize social security benefits because people have been counseled and they work fewer hours to stay below the dividing line. That is why they are successful holding these jobs but there is great pressure for them to earn more and give up their benefits.
What the PROS designers want to do is take some of the seriously ill people off the social security rolls altogether. The state and federal agencies have been trying to do that for at least 15 years. They keep rolling out programs like “1619 b” under the Social Security Act and the “Pass” program and “Ticket to Work” under federal labor law, and now “Real Jobs” strategies involving a private employer. Those who are behind these urgent programs dreamed up in Washington want to believe everybody can work and uncomfortable symptoms like hallucinations and delusions, or inability to form speech quickly or avoid distractions in the workplace, are easily overcome.
This is the stickler—it's why in my opinion the push by the PROS enthusiasts to prepare people for paying jobs comes with too great a risk for most of them. The evidence is that too many of the ones with serious mental illness who enter the labor force using their skills and training will have difficulty making it or won't make it and they will lose their benefits. It's not just at the outset, it's what they face along the way, after they've been working for some time and find their illness doesn't disappear. It may recede and be manageable most of the time, but too many in this group have tried working and kept at it for some time and find their illness haunts them over a lifetime. At some point it recurs to the point they can't work and they find they're out of luck, they've lost the safety net.
Of course, it's a personal decision of the individual whether to take a regular job and lose out on benefits. Other workers make a similar choice. For the truly job-capable, it's always been worth the risk. They take their place in society. But for most of the others, it's a poor gamble. Look at the record—very few people with schizophrenia or bipolar disorder or chronic depression hold one of these jobs for any length of time. They would have to have some outstanding characteristics, like computer skills in high demand, and a lot of brains and determination. But even they will exasperate employers by suddenly taking days off or acting socially distant in the office or showing some other behavior that sets them apart. Even job coaches don't help this.
We forget sometimes how hard it is to learn job skills. It takes repeated study in the classroom and practice on the job, and some training courses are far too tedious for people with these disabilities. Someone who hasn't worked for a long time or doesn't possess the energy to focus on the school work isn't going to make it. They have to learn to do it right and they are not used to preciseness in their lives. We should be realistic. Even where there are openings for good jobs, like practical nursing, the training may be too difficult for this group. It's much easier to stick to part time, less demanding work.
And on a simple note, the economy itself is defeating. If people without disability can't find a job after months and years of trying, how can we expect someone with serious mental disability to find one? It's another reason why PROS designers should back off and stop trying to push people into competitive jobs that don't exist. (Roy Neville)
PROS (personal oriented recovery services) as we know now, has three components and a clinic part to it—comprehensive rehab, intensive rehab and ongoing rehab. The first seems the most flexible to its adherents, letting people with mental illnesses and behavioral problems sign up for stress management and living skills and symptom reduction courses, for example. The other two are job oriented—teaching how to get a job, assisting in one's training and placement, and following up to see he or she stays in the job once landed.
The central idea is to expose people with serious mental illness to the world of work, to force them to focus on their own recovery. And that means for most of them, becoming capable of holding a job of some kind – the PROS minimum is 10 hours a week—but better still, it is to earn them a place in the competitive work world, working over 20 hours a week at a fulfilling job that will make them more self reliant and independent citizens
Now, people say they do want to work. That's okay--we already have existing opportunities for jobs that are part time and temporary. From what I read, PROS designers want more than that. They want these denizens of “smoking and rocking clubs” as one of them puts it, to wake up and go get themselves a real job with good wages and full days work. One wonders if they have any idea at all what serious mental illness is all about.
And if these managers disregard the barriers that someone has with mental illness—like distraction and relapse and sedation from the medicines they're taking; or persistent physical ailments, sleepiness, moodiness, anger—what can we expect from them?
Instead of offering some creative job ideas like apprenticing people in a trade or sending someone to a community college for courses that are tied to a specific job and employer, PROS will put people into the classroom to learn about work in general. The consumers are tired of resume writing and someone asking them what they want to do. PROS won't improve on affirmative businesses that employ consumers now and really do teach job skills and savvy in a protected environment, like Pie in the Sky Bakery in Albany. It has operated for over 30 years. People at RSS say it will have to be restructured to qualify it to continue as a PROS. If it's been good enough to serve hundreds of people until now, why does PROS even want to change it?
And our local providers employ quite a few of the consumers in their programs in-house to answer the phone, do business office functions, drive trucks, clean the rooms. These may need special dispensation from the state nabobs to continue if Reinvestment and Community Support Services funds vanish. With VESID funding, RSS and Northeast Career Planning have trained and placed people in outside jobs and coached them, along with the OMH. This arrangement should survive but it too, may change under federal rules for Medicaid participation. We also have peer assistants who work with patients inside Ellis Hospital and there are bridgers who do liaison work for patients coming out of hospital in other areas.
These jobs don't usually jeopardize social security benefits because people have been counseled and they work fewer hours to stay below the dividing line. That is why they are successful holding these jobs but there is great pressure for them to earn more and give up their benefits.
What the PROS designers want to do is take some of the seriously ill people off the social security rolls altogether. The state and federal agencies have been trying to do that for at least 15 years. They keep rolling out programs like “1619 b” under the Social Security Act and the “Pass” program and “Ticket to Work” under federal labor law, and now “Real Jobs” strategies involving a private employer. Those who are behind these urgent programs dreamed up in Washington want to believe everybody can work and uncomfortable symptoms like hallucinations and delusions, or inability to form speech quickly or avoid distractions in the workplace, are easily overcome.
This is the stickler—it's why in my opinion the push by the PROS enthusiasts to prepare people for paying jobs comes with too great a risk for most of them. The evidence is that too many of the ones with serious mental illness who enter the labor force using their skills and training will have difficulty making it or won't make it and they will lose their benefits. It's not just at the outset, it's what they face along the way, after they've been working for some time and find their illness doesn't disappear. It may recede and be manageable most of the time, but too many in this group have tried working and kept at it for some time and find their illness haunts them over a lifetime. At some point it recurs to the point they can't work and they find they're out of luck, they've lost the safety net.
Of course, it's a personal decision of the individual whether to take a regular job and lose out on benefits. Other workers make a similar choice. For the truly job-capable, it's always been worth the risk. They take their place in society. But for most of the others, it's a poor gamble. Look at the record—very few people with schizophrenia or bipolar disorder or chronic depression hold one of these jobs for any length of time. They would have to have some outstanding characteristics, like computer skills in high demand, and a lot of brains and determination. But even they will exasperate employers by suddenly taking days off or acting socially distant in the office or showing some other behavior that sets them apart. Even job coaches don't help this.
We forget sometimes how hard it is to learn job skills. It takes repeated study in the classroom and practice on the job, and some training courses are far too tedious for people with these disabilities. Someone who hasn't worked for a long time or doesn't possess the energy to focus on the school work isn't going to make it. They have to learn to do it right and they are not used to preciseness in their lives. We should be realistic. Even where there are openings for good jobs, like practical nursing, the training may be too difficult for this group. It's much easier to stick to part time, less demanding work.
And on a simple note, the economy itself is defeating. If people without disability can't find a job after months and years of trying, how can we expect someone with serious mental disability to find one? It's another reason why PROS designers should back off and stop trying to push people into competitive jobs that don't exist. (Roy Neville)
Thursday, August 12, 2010
Remembering AMI-NYS in the 1980s and 1990s—Part 2
When we blocked State Street with hospital beds--1991
March 1991—We hatched the idea with great glee. We would get four heavy metal hospital beds, place them side by side across State Street right opposite the Capitol entrance, put four patients in them with pajamas and robes on, and block traffic on the street. On March 5 I drove up to Angelica Laundry in Ballston Spa and picked up several hospital sheets. Someone appropriated the beds. I borrowed blue johnny suits and robes from Ellis Hospital. That night lawyer Van Zwisohn told us how to react when blocking the road next to the Capitol and the mounted police charge us to break it up. He said, go limp—it will cost you $150 in court if you go limp. If you resist it will cost you $250 and you can face jail time. He showed us how to go limp and that was it.
And we did it. The beds were rolled out at the rally and everyone wearing the johnnys and robes scurried to their beds. I thought Carol Saginaw the fastest woman in the world because she flashed by me in an instant, ducking under the banner we held across the street and up to her assigned bed. The cops did break it up some time later. They were grouped on mounted horseback at the intersection ahead of us after Arnold Gould asked them to hold off a few minutes. We pulled the beds back and wrapped up our signs and put the johnnys in a pile. Harvey R gave them out to some of his people after I had promised to return them to the hospital, which left people at Ellis very unhappy.
February 2, 1993—The little jail on the Capitol lawn—in January we were going to follow the beds in the street gambit with something equally brash. We came up with a theme park idea for the winter rally where we would build our own buildings to look like a jail and group home and hospital and put them on the Capital lawn. The jail was the centerpiece, to draw attention to the poor treatment our family members received. Carol had a friend with enough construction skill to lead the effort. We had work parties at the office and in somebody's basement to hammer and saw and put the structures together out of scrap lumber and heavy paper and paint. The theme park took place on the Capitol lawn Feb. 2 with the little group of buildings set just off the steps on the grass, painted with doors and windows and signs on them if I remember correctly. It was quite a triumph.
Early in the '90s the AMI-NYS board meetings were lively and the board members were characters. Two or three people definitely dominated the talk and complained if the president tried to cut them short. Vera H came from NYC and felt strongly that we should press more advocacy. When the OMH commissioner passed the word that Vera was calling him up every day and it had to stop, we politely asked her to back off. She objected, saying she would do the dirty work and we could mop up after.
We didn't always get along so well on the board, coming in from all points around the state, some with our own agendas. At one session, DJ put his boots up on the table we sat around and wouldn't remove them. Jerry Klein raised a point of order to ask DJ to remove his boots, saying it was undignified. He refused. We asked politely, then more firmly—to no avail. We took a vote but this didn't help either. Finally we said we would get a policeman. The boots came off the table and we went on with the meeting. There was another time when the ballots for election of board members were hijacked in NYC and we had to cancel the election. Someone had collected the ballots for others and voted fraudulently.
1995--The AMI boss who slept at his desk gets a phone call
This is Joe Gentile's story. Joe was president of AMI NYS in 1994-and 95. Joe is a no-nonsense guy, a long time labor negotiator, a tanned, beefy man who still plays rounds of golf twice weekly and flies off now and then around the country to do his flings as a labor-law arbitrator. “It's like taking candy from a baby,” says Joe in his gruff voice. “I don't need to do this anymore but they keep calling me up.” I bumped into Joe and his wife, Peg, both Syracusans, in March last year when we drove by along the Gulf Coast. They had their two grown grandsons there. Joe says, “They're out all the time looking for skirts.” Joe doesn't like fool-arounds, nincompoops and malcontents and that's what led to the phone call. Not that our newly hired executive director, Frank A., was any of these but his behavior left him open for a pretty quick body slam, only a month or two into his tour of duty with AMI-NYS
Frank had not long before been hired by our gullible board of directors. His was simply the best of the resumes we had at the time and Frank in the flesh could spin a story around our novice ears with ease. He convinced us he could call up the mayor of NYC, Ed Koch, or the bishop of the Diocese of New York City, or Governor Cuomo himself to get help for our beleagured AMI, desperate for greater recognition. Frank didn't have a clue about running a program whose constituents were families with mental illness, it became apparent. He had to ask us about everything. He had held down a sinecure at the NYC board of education and we never figured for a minute he couldn't do what he said he could.
For a month or so we wondered what Frank was doing. We didn't see things getting done. We began hearing rumors from the state office higher ups that Frank has been saying strange things to them. Joe got wind of it and on more than one of his trips in to the office in Albany he caught Frank head down asleep at his desk. Not good. Joe went off to the annual NAMI conference in Washington, where he picked up the phone and told Frank he was canned. No ceremony here, just move your stuff out and get out. That was all there was to it. You don't usually end these things happily but it happened quick that time. Frank walked out and wasn't heard from for a long time.
Glenn Liebman and the baseball bats—In the early 1990s, Glenn was on the AMI staff with Carol Saginaw and later became our executive director. He conceived of going into the Legislature and handing each of the leaders a toy baseball bat bearing a message written on it in tape, I think, such as “keep the promise” and “save community mental health.” The governor got a bat, too, and they became famous. I think there was a similar awareness campaign inspired by Glenn and aimed at lawmakers another year with miniature basketballs, on a theme of “March madness”, but I can't recall exactly.
Passing out pizza pies for parity—this was Glenn's idea, too, in the mid-'90s. He had a pizza pie with a missing piece delivered to each of the legislative leaders' offices once a week during session. That signified the missing mental health benefits in health insurance coverage. Soon after, Senate leaders issued an edict we couldn't do this because it was bribery and against ethics laws. We pulled back the incriminating pizzas. Not until 2007 did Timothy's Law make the cut, creating parity for mental illness coverage in health plans in NYS. But the struggle to achieve this took 20 years.
On the insurance issue, it was way back in 1987 and 1988 that we met with then deputy insurance superintendent Jim Clyne and allies like Dick Gallo of the Psychiatric Association to urge better mental health benefits. Some insurance plans left out these benefits altogether. A proposed regulation came out that called for 60 days a year in a hospital bed for serious mental illness and 20 days outpatient visits. But during a public comment period, the insurance industry knocked this back to allowing 30 days inpatient and 20 visits outpatient, and those are the benefits that have existed for almost 20 years in most of these plans, until Timothy's Law finally kicked in. That's a 20-year itch. (Roy Neville)
March 1991—We hatched the idea with great glee. We would get four heavy metal hospital beds, place them side by side across State Street right opposite the Capitol entrance, put four patients in them with pajamas and robes on, and block traffic on the street. On March 5 I drove up to Angelica Laundry in Ballston Spa and picked up several hospital sheets. Someone appropriated the beds. I borrowed blue johnny suits and robes from Ellis Hospital. That night lawyer Van Zwisohn told us how to react when blocking the road next to the Capitol and the mounted police charge us to break it up. He said, go limp—it will cost you $150 in court if you go limp. If you resist it will cost you $250 and you can face jail time. He showed us how to go limp and that was it.
And we did it. The beds were rolled out at the rally and everyone wearing the johnnys and robes scurried to their beds. I thought Carol Saginaw the fastest woman in the world because she flashed by me in an instant, ducking under the banner we held across the street and up to her assigned bed. The cops did break it up some time later. They were grouped on mounted horseback at the intersection ahead of us after Arnold Gould asked them to hold off a few minutes. We pulled the beds back and wrapped up our signs and put the johnnys in a pile. Harvey R gave them out to some of his people after I had promised to return them to the hospital, which left people at Ellis very unhappy.
February 2, 1993—The little jail on the Capitol lawn—in January we were going to follow the beds in the street gambit with something equally brash. We came up with a theme park idea for the winter rally where we would build our own buildings to look like a jail and group home and hospital and put them on the Capital lawn. The jail was the centerpiece, to draw attention to the poor treatment our family members received. Carol had a friend with enough construction skill to lead the effort. We had work parties at the office and in somebody's basement to hammer and saw and put the structures together out of scrap lumber and heavy paper and paint. The theme park took place on the Capitol lawn Feb. 2 with the little group of buildings set just off the steps on the grass, painted with doors and windows and signs on them if I remember correctly. It was quite a triumph.
Early in the '90s the AMI-NYS board meetings were lively and the board members were characters. Two or three people definitely dominated the talk and complained if the president tried to cut them short. Vera H came from NYC and felt strongly that we should press more advocacy. When the OMH commissioner passed the word that Vera was calling him up every day and it had to stop, we politely asked her to back off. She objected, saying she would do the dirty work and we could mop up after.
We didn't always get along so well on the board, coming in from all points around the state, some with our own agendas. At one session, DJ put his boots up on the table we sat around and wouldn't remove them. Jerry Klein raised a point of order to ask DJ to remove his boots, saying it was undignified. He refused. We asked politely, then more firmly—to no avail. We took a vote but this didn't help either. Finally we said we would get a policeman. The boots came off the table and we went on with the meeting. There was another time when the ballots for election of board members were hijacked in NYC and we had to cancel the election. Someone had collected the ballots for others and voted fraudulently.
1995--The AMI boss who slept at his desk gets a phone call
This is Joe Gentile's story. Joe was president of AMI NYS in 1994-and 95. Joe is a no-nonsense guy, a long time labor negotiator, a tanned, beefy man who still plays rounds of golf twice weekly and flies off now and then around the country to do his flings as a labor-law arbitrator. “It's like taking candy from a baby,” says Joe in his gruff voice. “I don't need to do this anymore but they keep calling me up.” I bumped into Joe and his wife, Peg, both Syracusans, in March last year when we drove by along the Gulf Coast. They had their two grown grandsons there. Joe says, “They're out all the time looking for skirts.” Joe doesn't like fool-arounds, nincompoops and malcontents and that's what led to the phone call. Not that our newly hired executive director, Frank A., was any of these but his behavior left him open for a pretty quick body slam, only a month or two into his tour of duty with AMI-NYS
Frank had not long before been hired by our gullible board of directors. His was simply the best of the resumes we had at the time and Frank in the flesh could spin a story around our novice ears with ease. He convinced us he could call up the mayor of NYC, Ed Koch, or the bishop of the Diocese of New York City, or Governor Cuomo himself to get help for our beleagured AMI, desperate for greater recognition. Frank didn't have a clue about running a program whose constituents were families with mental illness, it became apparent. He had to ask us about everything. He had held down a sinecure at the NYC board of education and we never figured for a minute he couldn't do what he said he could.
For a month or so we wondered what Frank was doing. We didn't see things getting done. We began hearing rumors from the state office higher ups that Frank has been saying strange things to them. Joe got wind of it and on more than one of his trips in to the office in Albany he caught Frank head down asleep at his desk. Not good. Joe went off to the annual NAMI conference in Washington, where he picked up the phone and told Frank he was canned. No ceremony here, just move your stuff out and get out. That was all there was to it. You don't usually end these things happily but it happened quick that time. Frank walked out and wasn't heard from for a long time.
Glenn Liebman and the baseball bats—In the early 1990s, Glenn was on the AMI staff with Carol Saginaw and later became our executive director. He conceived of going into the Legislature and handing each of the leaders a toy baseball bat bearing a message written on it in tape, I think, such as “keep the promise” and “save community mental health.” The governor got a bat, too, and they became famous. I think there was a similar awareness campaign inspired by Glenn and aimed at lawmakers another year with miniature basketballs, on a theme of “March madness”, but I can't recall exactly.
Passing out pizza pies for parity—this was Glenn's idea, too, in the mid-'90s. He had a pizza pie with a missing piece delivered to each of the legislative leaders' offices once a week during session. That signified the missing mental health benefits in health insurance coverage. Soon after, Senate leaders issued an edict we couldn't do this because it was bribery and against ethics laws. We pulled back the incriminating pizzas. Not until 2007 did Timothy's Law make the cut, creating parity for mental illness coverage in health plans in NYS. But the struggle to achieve this took 20 years.
On the insurance issue, it was way back in 1987 and 1988 that we met with then deputy insurance superintendent Jim Clyne and allies like Dick Gallo of the Psychiatric Association to urge better mental health benefits. Some insurance plans left out these benefits altogether. A proposed regulation came out that called for 60 days a year in a hospital bed for serious mental illness and 20 days outpatient visits. But during a public comment period, the insurance industry knocked this back to allowing 30 days inpatient and 20 visits outpatient, and those are the benefits that have existed for almost 20 years in most of these plans, until Timothy's Law finally kicked in. That's a 20-year itch. (Roy Neville)
Recollections about AMI NYS in the 1980s and 1990s--Part 1
Mid-1980s-forward--Some bruises along the way as AMI NYS asserts itself in Albany
September 21, 1985—I went to annual conference of AMI-NYS at Holiday Inn in midtown Manhattan (I think it was just renamed Days Inn at the time). I stood outside the main meeting room with a psychiatrist, Dr. Bill Turner, from Long Island, who told me his theory that a marker for schizophrenia was baldness in the father. So when we finished I looked through the porthole window into the meeting room and looked over the sea of men, mostly older, white haired, paying attention to the speaker--and almost none was bald. I meant to tell the doctor afterwards. You never know.
About 1986--AMI Action and the fire in the trash box--this was a subgroup, not a regular affiliate in Albany, that met at this time and was partly subversive of the AMI NYS board of directors. Led by Gerry Comfort, they planned advocacy with less restraint than the AMI board. They wanted to attack every evil imaginable—the mail system, unemployment, several agencies of state gov't not closely related to mental illness, the health dept., insurance, drug abuse agency, etc. They called for direct action and came in conflict with AMI board policies. Once when we on the board were in a meeting with Cmr. Surles, Gerry lit up the annual report of the NYS Office of Mental Health, set it afire and put it in an outside trash box near the building. That took the cake. Cmr. Surles asked me if I needed an escort out of the OMH building because of our “disobedient, raucous” colleagues with AMI Action
October 5, 1987--Prayer walk comes to grief in the snow--Harriet Comfort organized the prayer walks (marches) in the 1980s and into the '90s that AMI members paraded in. Mame Lyttle remembers them: Bishop Hubbard and Episcopal Bishop Ball proudly marching by the Capitol at the head of followers paying respect to those suffering from mental illness. Sudden snowstorm the day of the march, Oct. 5, forced its cancellation. Nobody imagined a deep snow that early. Chris Carabateas, an activist who lived out in Nassau, had no electric power for a week or more, as the lines were down that long.
Court suit over High Tea 1987—Harriet lost a bid to be president of AMI NYS in 1987 and so quit the board. This falling out led the board to sue over her refusal to grant AMI a share of High Tea funds that year. Both sides got lawyers who did little but wrangle for a year. At one point William Snavely, AMI national president, a former Navy admiral, I think, came to Albany to solve the dispute. He went home with no luck at all for a reconciliation. Our suit ended in stalemate, with no satisfaction to either party. And it led to disaffection against AMI by several local affiliate members that lasted over 10 years.
In Feb. 1988 at a rally in Albany we were to release dozens of green balloons together high over the Capitol as a sign of unity, at the end of speeches that day. Every now and then someone would lose grip on the balloon and they began sailing one by one up in the sky while speeches went on and we all admired the show.
1988--An early foray into the legislative chambers to make our case. Went to see Joe Lentol, a Brooklyn assemblyman,who had his staffer, Joe Giamo, meet us. We got through 15 minutes telling this fellow all about us and what we do and the staffer asked: What army did you say you were from?
March 2, 1989 I was called in by Carol Obloy, AMI's first OMH contract officer, and signed a three year deal for AMI to set up business in Albany. I had taken over the presidency last fall from Phyllis Gerber, the long time leader with Muriel Shepherd who got AMI going in the early 1980s .That was our big move to respectability in Albany, to have a home after previous board meetings around the dining room table in the Gerbers' home and in a conference room at RSS headquarters.
Our job was to bring all the local AMI support groups together, do outreach and education to our members and the public and raise public awareness about mental illness around the state. It was a magnificent moment. We rented office space from the Mental Health Association in Albany County, then headed by Brian Klim, who actually designed our rooms on the second floor of the former car dealership at 260 Northern Blvd, off downtown Albany. NAMI is still there. We could walk to and from the Capitol and state Legislative Building from there and had allies in the building from the start—the mental health association, ACCLAIM (now ACL), headed by Steve Greenfield, and Potpourri consumer social club downstairs run by Harvey Rosenthal, which is still there.
We were to hire a director and secretary and equip their offices with a desk and soft chair; buy two IBM typewriters, some plain tables and side chairs for meetings and to fill the rooms up. On April 7 John Rosebrook and I bought tables and chairs at BJs Wholesale Club, carted them in the back of his van and lugged them upstairs to the office. We leased an early design copy machine that broke down repeatedly. We hired a secretary who couldn't type and was soon fired. We interviewed Carol S for executive director and she started work March 27. We soon hashed out strategies for political action with our new-found allies.
September 16, 1989—The famous jazz concert that flopped—At the same time that we're getting going in Albany we signed on to sponsor a jazz concert at the Palace Theatre in Albany as a fund raiser. This was led by Jean Shaw who had helped Capital District Psych Center the year before and presented herself as a grand impresario. She gathered a team and with our support signed up major bands like the Duke Ellington quartet, (and was it Count Basie?), plus a leading female jazz vocalist whose name escapes me, and the Shaws, a local piano duo. She had us solicit AMI members statewide to buy tickets at $25 or more apiece, estimated to bring in over $50,000. This was coupled with a black tie dinner at the Hilton Hotel downtown Albany on Sunday night with the commissioner and other luminaries there. The week of the concert there were fewer than 100 tickets sold and we cancelled at once, despite having paid the big name band and woman singer thousands of dollars up front. We did hold the black tie dinner and came out about $20,000 short, as I remember. Just got burned, that's all.
The characters we met—Jesse Nixon, director at CDPC. Really a nice man. But one wonders. Once he punched out a pizza delivery man outside the front door of the hospital. Pizza man had him arrested. I think he pleaded guilty, and walked. Jesse had a few more run-ins later on in his long tenure there.
And our own staff at AMI were mostly good souls, some young and untested, none of whom was paid a lot. A young man and woman worked together for us and soon were married. He had exceptional computer skills and left to work his way up at state OMH to become head of their research. Another, Ruth Foster, has become a top lieutenant for Families Together, working for childrens mental health in Albany. John N lost his wife to illness suddenly and had to leave us. Then again, a fellow we hired as secretary was caught walking off with some of our office equipment and we had to fire him. (by Roy Neville)
September 21, 1985—I went to annual conference of AMI-NYS at Holiday Inn in midtown Manhattan (I think it was just renamed Days Inn at the time). I stood outside the main meeting room with a psychiatrist, Dr. Bill Turner, from Long Island, who told me his theory that a marker for schizophrenia was baldness in the father. So when we finished I looked through the porthole window into the meeting room and looked over the sea of men, mostly older, white haired, paying attention to the speaker--and almost none was bald. I meant to tell the doctor afterwards. You never know.
About 1986--AMI Action and the fire in the trash box--this was a subgroup, not a regular affiliate in Albany, that met at this time and was partly subversive of the AMI NYS board of directors. Led by Gerry Comfort, they planned advocacy with less restraint than the AMI board. They wanted to attack every evil imaginable—the mail system, unemployment, several agencies of state gov't not closely related to mental illness, the health dept., insurance, drug abuse agency, etc. They called for direct action and came in conflict with AMI board policies. Once when we on the board were in a meeting with Cmr. Surles, Gerry lit up the annual report of the NYS Office of Mental Health, set it afire and put it in an outside trash box near the building. That took the cake. Cmr. Surles asked me if I needed an escort out of the OMH building because of our “disobedient, raucous” colleagues with AMI Action
October 5, 1987--Prayer walk comes to grief in the snow--Harriet Comfort organized the prayer walks (marches) in the 1980s and into the '90s that AMI members paraded in. Mame Lyttle remembers them: Bishop Hubbard and Episcopal Bishop Ball proudly marching by the Capitol at the head of followers paying respect to those suffering from mental illness. Sudden snowstorm the day of the march, Oct. 5, forced its cancellation. Nobody imagined a deep snow that early. Chris Carabateas, an activist who lived out in Nassau, had no electric power for a week or more, as the lines were down that long.
Court suit over High Tea 1987—Harriet lost a bid to be president of AMI NYS in 1987 and so quit the board. This falling out led the board to sue over her refusal to grant AMI a share of High Tea funds that year. Both sides got lawyers who did little but wrangle for a year. At one point William Snavely, AMI national president, a former Navy admiral, I think, came to Albany to solve the dispute. He went home with no luck at all for a reconciliation. Our suit ended in stalemate, with no satisfaction to either party. And it led to disaffection against AMI by several local affiliate members that lasted over 10 years.
In Feb. 1988 at a rally in Albany we were to release dozens of green balloons together high over the Capitol as a sign of unity, at the end of speeches that day. Every now and then someone would lose grip on the balloon and they began sailing one by one up in the sky while speeches went on and we all admired the show.
1988--An early foray into the legislative chambers to make our case. Went to see Joe Lentol, a Brooklyn assemblyman,who had his staffer, Joe Giamo, meet us. We got through 15 minutes telling this fellow all about us and what we do and the staffer asked: What army did you say you were from?
March 2, 1989 I was called in by Carol Obloy, AMI's first OMH contract officer, and signed a three year deal for AMI to set up business in Albany. I had taken over the presidency last fall from Phyllis Gerber, the long time leader with Muriel Shepherd who got AMI going in the early 1980s .That was our big move to respectability in Albany, to have a home after previous board meetings around the dining room table in the Gerbers' home and in a conference room at RSS headquarters.
Our job was to bring all the local AMI support groups together, do outreach and education to our members and the public and raise public awareness about mental illness around the state. It was a magnificent moment. We rented office space from the Mental Health Association in Albany County, then headed by Brian Klim, who actually designed our rooms on the second floor of the former car dealership at 260 Northern Blvd, off downtown Albany. NAMI is still there. We could walk to and from the Capitol and state Legislative Building from there and had allies in the building from the start—the mental health association, ACCLAIM (now ACL), headed by Steve Greenfield, and Potpourri consumer social club downstairs run by Harvey Rosenthal, which is still there.
We were to hire a director and secretary and equip their offices with a desk and soft chair; buy two IBM typewriters, some plain tables and side chairs for meetings and to fill the rooms up. On April 7 John Rosebrook and I bought tables and chairs at BJs Wholesale Club, carted them in the back of his van and lugged them upstairs to the office. We leased an early design copy machine that broke down repeatedly. We hired a secretary who couldn't type and was soon fired. We interviewed Carol S for executive director and she started work March 27. We soon hashed out strategies for political action with our new-found allies.
September 16, 1989—The famous jazz concert that flopped—At the same time that we're getting going in Albany we signed on to sponsor a jazz concert at the Palace Theatre in Albany as a fund raiser. This was led by Jean Shaw who had helped Capital District Psych Center the year before and presented herself as a grand impresario. She gathered a team and with our support signed up major bands like the Duke Ellington quartet, (and was it Count Basie?), plus a leading female jazz vocalist whose name escapes me, and the Shaws, a local piano duo. She had us solicit AMI members statewide to buy tickets at $25 or more apiece, estimated to bring in over $50,000. This was coupled with a black tie dinner at the Hilton Hotel downtown Albany on Sunday night with the commissioner and other luminaries there. The week of the concert there were fewer than 100 tickets sold and we cancelled at once, despite having paid the big name band and woman singer thousands of dollars up front. We did hold the black tie dinner and came out about $20,000 short, as I remember. Just got burned, that's all.
The characters we met—Jesse Nixon, director at CDPC. Really a nice man. But one wonders. Once he punched out a pizza delivery man outside the front door of the hospital. Pizza man had him arrested. I think he pleaded guilty, and walked. Jesse had a few more run-ins later on in his long tenure there.
And our own staff at AMI were mostly good souls, some young and untested, none of whom was paid a lot. A young man and woman worked together for us and soon were married. He had exceptional computer skills and left to work his way up at state OMH to become head of their research. Another, Ruth Foster, has become a top lieutenant for Families Together, working for childrens mental health in Albany. John N lost his wife to illness suddenly and had to leave us. Then again, a fellow we hired as secretary was caught walking off with some of our office equipment and we had to fire him. (by Roy Neville)
Saturday, August 7, 2010
ECT--Can't the consumers get over it?
The fact is, electroshock therapy may be the most important treatment we have. Why does it divide consumers (who call themselves patients/survivors on this issue) and families so badly about its use?
Electroshock therapy (ECT) is the treatment of choice for many psychiatrists, when medicine and psychotherapy have failed, for someone suffering from severe mental depression or schizophrenia who is in the most urgent circumstances.
Its power, I believe, comes from the recognition that this is the last resort. It's the one thing that can pull you through, as nothing else can, when you're suicidal and seem possessed of demons. Parents have watched their teenage or adult child spiral downhill in a hospital bed to literally go out of their mind, refuse to eat, become thin as a rail, talk crazy, spout religious fantasies, and not know who they are.
Yet it's still as controversial as lobotomies—sticking needles into your brain. (Did you know they still do that in some circles?) ECT consistently draws a violent reaction from the more vocal members among the consumers, some of whom have personally experienced its effects and felt they were injured. Usually they claim loss of memory or thinking ability or changes in personality and while some of these things may have happened, these functions are known to return. The early radicals who underwent ECT are vocal enough to enlist their followers to continue this line of resistance, however.
Nobody likes to mess with the brain physically, only doctors who are trained in electroshock procedure and its anesthesia, and they want to say it's safe. The rest of us can only imagine what it's like to have clamps slapped on the sides of your head and then be hit with a powerful surge of voltage that shakes the head violently. That's too close to the imagery for violence in an electric chair, and none of us wants to entertain those notions.
These consumer groups repeat the dangers of injury from ECT as if they are legion but rather in modern treatment we find they are very rare, if they exist at all. In the old days procedures were not the same as today, and those administering the shocks wouldn't have been as properly trained nor would the equipment be as safe. But that isn't the case anymore and the evidence is overwhelming that the procedures are safe and effective.
ECT--electro-convulsive therapy--has a checkered past, as most people know, lumped in with lobotomies and other pre-modern medical strikes to try to cure the thinking of madmen and madwomen. In its modern form it's nothing like the early versions that did indeed have victims and created the myths about it that have raised the ire of legions of consumers and their allies.
But this is one of the most useful therapies known in psychiatry, fully established and blessed by the medical establishment—the doctors' guilds (APA and AMA, etc). It's seen as safe and dependable, practiced in numerous hospitals by numerous physicians armed with the latest knowledge and technology about its use. Never mind that they still don't know exactly how it works.
It gives the brain a shock, much like forcing a convulsion, which hardly seems like painless therapy. There is a sudden excitation of brain waves and aftershocks, like the succession of tremors that hit Haiti after the quake. The shocks are administered in a series of up to eight or 10 over two weeks or so, but spaced out, not right on top of one another.
The person being tested is often someone with severe symptoms of depression or schizophrenia for whom medicine has failed. Others take ECT on a maintenance basis; they periodically relapse, receive ECT, and almost miraculously perk up—the evidence supports this.
Despite the evidence, consumers can't get over it. Last September a coalition of patients/survivors in Brooklyn launched a nationwide call to action against forced mental health treatment including drugging and electroshock therapy. They tie these to outworn forms of the medical model of psychiatry, which they find coercive. And anything coercive is too much for them. They demand the right to reject what is imposed on them by doctors and to make their own choices. But isn't this foolish if someone is so sick they are out of their mind, suicidal, unable to appreciate what they doing or saying?
Finally, it appears the leader of the statewide mental health consumer movement in NY, Harvey Rosenthal of NYAPRS, has taken a softer stance. In the love and hate war of words over electroshock therapy, Harvey wrote to the US Food and Drug Administration last January that the consumer movement doesn't oppose ECT any more, after decades of disagreement over this issue. They just want regular inspection of the equipment used and a ban on its use for children and the elderly.
Hear, hear! No blanket condemnation! Don't tell me they have come to their senses. But is the old guard still spouting the same old tales of woe over their treatment at the hands of doctors who ordered ECT. Maybe the organization is marching to a different drummer on this one, thank goodness. (Roy Neville)
Electroshock therapy (ECT) is the treatment of choice for many psychiatrists, when medicine and psychotherapy have failed, for someone suffering from severe mental depression or schizophrenia who is in the most urgent circumstances.
Its power, I believe, comes from the recognition that this is the last resort. It's the one thing that can pull you through, as nothing else can, when you're suicidal and seem possessed of demons. Parents have watched their teenage or adult child spiral downhill in a hospital bed to literally go out of their mind, refuse to eat, become thin as a rail, talk crazy, spout religious fantasies, and not know who they are.
Yet it's still as controversial as lobotomies—sticking needles into your brain. (Did you know they still do that in some circles?) ECT consistently draws a violent reaction from the more vocal members among the consumers, some of whom have personally experienced its effects and felt they were injured. Usually they claim loss of memory or thinking ability or changes in personality and while some of these things may have happened, these functions are known to return. The early radicals who underwent ECT are vocal enough to enlist their followers to continue this line of resistance, however.
Nobody likes to mess with the brain physically, only doctors who are trained in electroshock procedure and its anesthesia, and they want to say it's safe. The rest of us can only imagine what it's like to have clamps slapped on the sides of your head and then be hit with a powerful surge of voltage that shakes the head violently. That's too close to the imagery for violence in an electric chair, and none of us wants to entertain those notions.
These consumer groups repeat the dangers of injury from ECT as if they are legion but rather in modern treatment we find they are very rare, if they exist at all. In the old days procedures were not the same as today, and those administering the shocks wouldn't have been as properly trained nor would the equipment be as safe. But that isn't the case anymore and the evidence is overwhelming that the procedures are safe and effective.
ECT--electro-convulsive therapy--has a checkered past, as most people know, lumped in with lobotomies and other pre-modern medical strikes to try to cure the thinking of madmen and madwomen. In its modern form it's nothing like the early versions that did indeed have victims and created the myths about it that have raised the ire of legions of consumers and their allies.
But this is one of the most useful therapies known in psychiatry, fully established and blessed by the medical establishment—the doctors' guilds (APA and AMA, etc). It's seen as safe and dependable, practiced in numerous hospitals by numerous physicians armed with the latest knowledge and technology about its use. Never mind that they still don't know exactly how it works.
It gives the brain a shock, much like forcing a convulsion, which hardly seems like painless therapy. There is a sudden excitation of brain waves and aftershocks, like the succession of tremors that hit Haiti after the quake. The shocks are administered in a series of up to eight or 10 over two weeks or so, but spaced out, not right on top of one another.
The person being tested is often someone with severe symptoms of depression or schizophrenia for whom medicine has failed. Others take ECT on a maintenance basis; they periodically relapse, receive ECT, and almost miraculously perk up—the evidence supports this.
Despite the evidence, consumers can't get over it. Last September a coalition of patients/survivors in Brooklyn launched a nationwide call to action against forced mental health treatment including drugging and electroshock therapy. They tie these to outworn forms of the medical model of psychiatry, which they find coercive. And anything coercive is too much for them. They demand the right to reject what is imposed on them by doctors and to make their own choices. But isn't this foolish if someone is so sick they are out of their mind, suicidal, unable to appreciate what they doing or saying?
Finally, it appears the leader of the statewide mental health consumer movement in NY, Harvey Rosenthal of NYAPRS, has taken a softer stance. In the love and hate war of words over electroshock therapy, Harvey wrote to the US Food and Drug Administration last January that the consumer movement doesn't oppose ECT any more, after decades of disagreement over this issue. They just want regular inspection of the equipment used and a ban on its use for children and the elderly.
Hear, hear! No blanket condemnation! Don't tell me they have come to their senses. But is the old guard still spouting the same old tales of woe over their treatment at the hands of doctors who ordered ECT. Maybe the organization is marching to a different drummer on this one, thank goodness. (Roy Neville)
Monday, August 2, 2010
Shyness, sadness, gambling, sex offenses--are they mental illnesses?
There's a man who has written a book about shyness and contends it's a normal human trait, not a mental illness
There's another book out about sadness, feelings the author says have been associated throughout history as a normal reaction to loss—not the finding of modernists who want it labeled a mental illness.
How about binge eating...temper tantrums...gambling—are they mental disorders?
And then we have hoarding, compulsive shopping, alienation from parents, sex offenses. Where did these all come from?
It's really baffling to onlookers and to those with some of the kinds of odd habits like these afflicting humans. People don't get treatment who may need it. Does the medical profession have it all down straight?
They think they do—at least the American Psychiatric Association does. Shyness, sadness and a few other common traits and habits are said to be getting a working over in the new Diagnostic and Statistical Manual of Psychiatric Disorders (the DSM-V, not issued yet), and it's stirring the juices.
It's important for the people developing the DSM-V to get it right because the document is used by the mental health establishment when treating patients and helps insurance companies decide what disorders to cover. It serves as well as for clinicians, courts, prisons, drug companies and agencies that regulate drugs.
And you would think someone with these conditions wants to know if he or she is normal or less so. The book by Christopher Lane, called “Shyness,” exposes efforts of the big drug companies to have shy people view themselves as mentally ill. He shows how drug company ads have manipulated this to turn ordinary shyness into social anxiety disorder., something of a national emergency.
And another book, “The Loss of Sadness,” by Allan Horwitz and Jerome Wakefield, finds that sadness is often wrongly judged as depression, a diagnosis that has now become epidemic around the world. “Those judgments fail to distinguish between major depression, 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 when it is misread as a depressive disorder.”
What's in a diagnosis anyway? Is it something that hits you once or twice or does it have to happen often enough to lay you flat—change your personality or mood or outlook on life? Feeling blue now and then is not the same as depression. The new DSM-V is said to have nine symptoms that go along with that and weighs them as to seriousness, but even this is criticized as not faithful to reality.
There must be pressure from drug companies to add fringe diagnoses into the big book and from insurers to keep them out. The draft document is reported to leave out obesity as a formal diagnosis, as some have proposed. Obesity, you can argue, is metabolic. And it appears to be definitely a medical problem. But no-go in the big book.
They once called cigarette smoking a mental disorder. I suppose much the way marijuana smoking is thought of as an addiction. So--What's addictive behavior and what's a mental disorder?
Not long ago the NAMI NYS board of directors was confronted with the issue of the state putting sex offenders in with mental patients in some of the state hospitals (which they still do). The members wanted to object to this but weren't sure if sex offenders basically had an addiction problem or a severe personality distortion (or both). Some thought these offenders should be put in drug treatment facilities, not the hospitals, but this didn't happen. It's still not clear about sex offenders.
Internet addiction doesn't sound like a medical problem but it could be like other compulsive habits like gambling and binge eating or anorexia. These and other obsessive-compulsive habits are given sway in the DSM. Then there are “night people” who compulsively stay up at night and can't go to sleep and who don't seem to qualify as mentally unsound. Their brains would seem to not be working just right either.
Now sex addiction gets us into some serious business, even if it's not criminal behavior. There are a variety of these disorders already listed in the big book but until they go off the end of the scale, there doesn't seem to be much the docs do about them. People with these disorders deserve help and counseling. Some are sex offenders and some are child molesters who get hounded by fellow citizens, driven from neighborhoods and live with the scarlet letter of shame on them for much of their lives.
On this topic there's a common habit called masturbation, that upsets people when they think it might be mental illness. Here's an illustration: This guy comes up to me and says he has a mental illness he can't get rid of. “What mental illness is that?” I asked. And the talk came around to the fact he masturbates a lot. “What makes you think that's mental illness?” I asked. “I know it is because I can't get it out of my mind; it's a habit and it keeps coming back every day over and over. I'm not normal and this is mental illness. Do you know anybody who can treat it?” he responded
“Yeah,” I said, “it's not mental illness. It's just nature. You're like everybody else. You have a habit you can't get rid of, so what? The difference is that we're all weak and lead imperfect lives and will fall short in some things and feel we might have something wrong.
“You want to talk about an illness—think of schizophrenia. It hits you like a bomb—you'll know when it hits you. And you don't get a little schizophrenia—it's like pregnancy. You either got it, or you don't." (Roy Neville)
There's another book out about sadness, feelings the author says have been associated throughout history as a normal reaction to loss—not the finding of modernists who want it labeled a mental illness.
How about binge eating...temper tantrums...gambling—are they mental disorders?
And then we have hoarding, compulsive shopping, alienation from parents, sex offenses. Where did these all come from?
It's really baffling to onlookers and to those with some of the kinds of odd habits like these afflicting humans. People don't get treatment who may need it. Does the medical profession have it all down straight?
They think they do—at least the American Psychiatric Association does. Shyness, sadness and a few other common traits and habits are said to be getting a working over in the new Diagnostic and Statistical Manual of Psychiatric Disorders (the DSM-V, not issued yet), and it's stirring the juices.
It's important for the people developing the DSM-V to get it right because the document is used by the mental health establishment when treating patients and helps insurance companies decide what disorders to cover. It serves as well as for clinicians, courts, prisons, drug companies and agencies that regulate drugs.
And you would think someone with these conditions wants to know if he or she is normal or less so. The book by Christopher Lane, called “Shyness,” exposes efforts of the big drug companies to have shy people view themselves as mentally ill. He shows how drug company ads have manipulated this to turn ordinary shyness into social anxiety disorder., something of a national emergency.
And another book, “The Loss of Sadness,” by Allan Horwitz and Jerome Wakefield, finds that sadness is often wrongly judged as depression, a diagnosis that has now become epidemic around the world. “Those judgments fail to distinguish between major depression, 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 when it is misread as a depressive disorder.”
What's in a diagnosis anyway? Is it something that hits you once or twice or does it have to happen often enough to lay you flat—change your personality or mood or outlook on life? Feeling blue now and then is not the same as depression. The new DSM-V is said to have nine symptoms that go along with that and weighs them as to seriousness, but even this is criticized as not faithful to reality.
There must be pressure from drug companies to add fringe diagnoses into the big book and from insurers to keep them out. The draft document is reported to leave out obesity as a formal diagnosis, as some have proposed. Obesity, you can argue, is metabolic. And it appears to be definitely a medical problem. But no-go in the big book.
They once called cigarette smoking a mental disorder. I suppose much the way marijuana smoking is thought of as an addiction. So--What's addictive behavior and what's a mental disorder?
Not long ago the NAMI NYS board of directors was confronted with the issue of the state putting sex offenders in with mental patients in some of the state hospitals (which they still do). The members wanted to object to this but weren't sure if sex offenders basically had an addiction problem or a severe personality distortion (or both). Some thought these offenders should be put in drug treatment facilities, not the hospitals, but this didn't happen. It's still not clear about sex offenders.
Internet addiction doesn't sound like a medical problem but it could be like other compulsive habits like gambling and binge eating or anorexia. These and other obsessive-compulsive habits are given sway in the DSM. Then there are “night people” who compulsively stay up at night and can't go to sleep and who don't seem to qualify as mentally unsound. Their brains would seem to not be working just right either.
Now sex addiction gets us into some serious business, even if it's not criminal behavior. There are a variety of these disorders already listed in the big book but until they go off the end of the scale, there doesn't seem to be much the docs do about them. People with these disorders deserve help and counseling. Some are sex offenders and some are child molesters who get hounded by fellow citizens, driven from neighborhoods and live with the scarlet letter of shame on them for much of their lives.
On this topic there's a common habit called masturbation, that upsets people when they think it might be mental illness. Here's an illustration: This guy comes up to me and says he has a mental illness he can't get rid of. “What mental illness is that?” I asked. And the talk came around to the fact he masturbates a lot. “What makes you think that's mental illness?” I asked. “I know it is because I can't get it out of my mind; it's a habit and it keeps coming back every day over and over. I'm not normal and this is mental illness. Do you know anybody who can treat it?” he responded
“Yeah,” I said, “it's not mental illness. It's just nature. You're like everybody else. You have a habit you can't get rid of, so what? The difference is that we're all weak and lead imperfect lives and will fall short in some things and feel we might have something wrong.
“You want to talk about an illness—think of schizophrenia. It hits you like a bomb—you'll know when it hits you. And you don't get a little schizophrenia—it's like pregnancy. You either got it, or you don't." (Roy Neville)
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