NAMI lunch meeting Thursday June 14 at Van Dyck

Hear ye! hear ye!

NAMI Schenectady holds its next lunch meeting on Thursday, June 14 at 12:30 pm at the Van Dyck Restaurant, 237 Union St., Schenectady. We will have City Court Judge Matthew Sypniewski as our guest to speak to us on the progress of the alternative treatment court at city level. Matt is one of three city court judges, with Mark Blanchfield and Guido Loyola, and he is the one handling the alternative (mental health) court. As such, he hears from people in different degrees of difficulty with some kind of mental illness or drug addiction who the court gives special attention to because of their circumstances. It's been found a poor procedure to process these cases in front of the entire audience of those who appear that day in city Criminal Court, so the alternative court is held in separate chambers at a different time of the day and week. We need to convey to the judge our concerns about the process in which our family members with the illness sometimes do not purposefully commit an act that leads to their arrest. It might instead be the outgrowth of their illness where their behavior is inappropriate. We want to learn from the judge how the court works and how it might work better; what we can do in support of our family member to better represent him or her, and know what to anticipate. And what kind of legal representation is best, particularly when there are serious charges being brought. The courts are serious business and have led to jail and prison sentences that don't do our family member much good in his or her treatment and eventual recovery. Please come to our session on June 14 at the Van Dyck--you don't have to be a NAMI member to attend and you can bring friends or other family members. We're in the second floor dining room at 12:30. (Roy Neville)

NAMI Schenectady lunch meeting May 14, 2012

Hear ye! hear ye!

We meet next at noon on Monday, May 14 at the Schenectady YMCA in Center City for lunch with Lou Magliocca, director of the Y. Park in one of the city lots behind the building (Franklin Street--parking is free), enter back door and ask receptionist for the teen community room downstairs. We're having a catered lunch of pizza and salad from Isopo's Pizza on Erie Blvd. Lou will tell us about the miraculous changeover of the downtown YMCA and give us a tour of the building with its busy gym and fleet of exercise machines, upstairs classrooms and far flung offices filled with other tenants. He'll try to sign you up as a member also. We have other important business to discuss--our advocacy agenda includes the need to call the governor to support improvements in Kendra's Law now close to a floor vote in the Legislature (May 10). We'll bring up the need for a peer recovery center here, need for special police training to stop the violence against people with mental illness, and need for more housing and services. Learn about future plans for meetings and events coming up. (Roy Neville, 377-2619)

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NAMI Schenectady lunch meeting April 9, 2012

Hear ye! Hear ye!

NAMI Schenectady holds its next regular lunch meeting at noon on Monday, April 9 at Center Stage Deli, 2678 Hamburg Street, Rotterdam. Our speaker will be Dr. Heidi Van Bellingham, a senior psychiatrist at the Ellis Mental Health Clinic on Lafayette Street. Dr. Van Bellingham also serves as a doctor on staff for the Personal Recovery Oriented Services (PROS) program adjoining the mental health clinic and she is the psychiatrist assigned to the county jail. We expect Dr. Van Bellingham to tell us about her role at the clinic and how she perceives the current status of publicly assisted mental health services in Schenectady. We can also learn how we might help to make treatment of our family members more successful at the clinic. To reach Center Stage Deli, starting from the corner of State Street and Brandywine Ave., turn south on Brandywine and go three short blocks to stoplight at Duane Avenue. Turn left, east, on Duane and proceed over the bridge to first stoplight. Take left fork at the light onto Hamburg Street and travel south about two miles to the deli. It is on the right just after a U Haul truck rental place with big signs. Park in front or along side the deli building. We have tables reserved at the rear of the restaurant and begin to take our seats at 11:45. If you are new to join us you might call Roy or Mary Neville or Flora Ramonowski to ask for more details about our meetings. You do not have to be a NAMI member to attend our meetings. Other topics on the agenda are the Forensic task force and police training, housing for men living at the YMCA, the state budget just passed and bills we advocate for, and our NAMI affiliation business. See you there!

Reminder: Two relatives support groups continue to meet weekly for the families of someone with a mental illness. One is led by Kevin Moran, a psychiatric social worker at Ellis Hospital, meeting inside the hospital in classroom B-3 every Wednesday evening at 6 pm. Call Kevin on 243-4255 if you are new to the group. Park in the hospital garage and proceed through the main floor corridor to the B wing elevators. Take elevator to the third floor and see signs on the wall pointing to the classroom. The other support group is held at the CDPC Franklin Street clinic at 426 Franklin Street, Schenectady and is led by Frank Greco, a social worker at the CDPC hospital in Albany. The group meets from 5:30 to 7 pm every Monday night in a first floor room at the clinic. Call ahead on 374-3403 to check on availability for that evening. Besides these groups there is a DBSA--Depression, Bipolar Support Alliance--group intended for consumers with either of these illnesses. It meets every Thursday evening at 7 pm at Grace Lutheran Church, 1930 Hillside Avenue, Niskayuna. Celeste Trotz leads these meetings. Call her at home on 374-9753 if you are new to the group.

NAMI lunch meeting Monday March 12 at Center Stage Deli

Our next NAMI Schenectady lunch meeting is at noon on Monday, March 12, 2012 at Center Stage Deli, 2678 Hamburg St., Rotterdam. Our speaker will be Jody Kovach, manager of the Assertive Community Treatment (ACT) team in Schenectady, under Mohawk Opportunities auspices. The team, with a staff of seven and 48 clients, conducts visits to patients in their homes and meets with them at other locations. The aim is to monitor their health and mental health care and try to keep them from having to be rehospitalized. Our NAMI group has reserved seating at the back of the restaurant. We arrive just before noon. Parking is available in front and along the side of the building. Look for the Center Stage Deli sign right after a U-Haul Truck Rental place. The deli is about two miles south of the intersection of Hamburg St. with Altamont Ave. at its northern end. We will also discuss the Health home initiative in Schenectady, the Forensic Task Force, and progress on our affiliation agreement with NAMI national.

NAMI Holiday dinner party at Turf Tavern Dec. 15

Hear ye! Hear ye! NAMI Schenectady holds its annual holiday dinner party at Turf Tavern, 40 Mohawk Avenue, Scotia, on Thursday, December 15. We arrive at 6 and sit down at 6:30 in the Bentwood Room, an arm of the main dining room. We order off the menu so there is no need to prepay for the meal, but we do need you to tell us if you're coming so we can tell the restaurant. The Bentwood Room holds 23 and we usually fill or nearly fill the room, so call the Nevilles (377-2619) as early as possible. We have Joe Gallagher, executive director of Mohawk Opportunities, as our guest speaker. Turf Tavern is a cozy place with delicious food. Hope you will join us on the 15th.

NAMI Schenectady meets Monday, Nov 14, 2011

Hear ye! Hear ye! NAMI Schenectady has scheduled its next lunch meeting at noon on Monday, Nov. 14 at Denny's Restaurant, Nott Terrace and Liberty Street, Schenectady. We arrive at the restaurant at 11:45 and sit down for lunch at 12. We have tables together in the rear room of the restaurant.

Our guest speaker will be Mark Chaires, Schenectady police chief. Mark will tell us how police officers might encounter an upset or violent person in the home or out in the community and what happens from there. Mark has previously shown interest in providing more advanced training for his officers to learn to manage similar situations involving a mentally ill person.

NAMI Schenectady fund raiser chicken barbeque August 19

Folks: We've scheduled our annual NAMI Schenectady fund raiser chicken barbeque dinner for Friday, August 19 at Central Park Pavilion. Festivities start at 4 pm with continuous music from disc jockey Vic Furnari. Dinners served by Center Stage Deli starting at 5 pm. Grilled half-chicken dinners served buffet style with side salads, roll and butter, dessert, coffee and iced tea. There's a Chinese auction with tables out full of gift items for people to take tickets and bid on. Prizes for the best karaoke singers and for the worst ones. 50-50 raffle included. We're counting on families and friends together with many others in the community to come out and make this a success.

Tickets were mailed out to many people in mid-July. If you didn't get a ticket you can call Flora Ramonowski on 372-6771 or Mary or Roy Neville on 377-2619. You can't buy tickets at the door unless you have called one of us first and ordered one or more dinners at least three days ahead of the event. Tickets are $20; consumers of mental health services are charged $10. We hope to see you there on the 19th.

NAMI lunch meeting Monday October 10 at Center Stage Deli

hear ye! hear ye!

NAMI Schenectady holds its monthly lunch meeting Monday, October 10 at noon at Center Stage Deli, 2678 Hamburg St., Rotterdam. Speaker is Darin Samaha, director of the Schenectady County Office of Community Services. Darin will tell us about the local effects of the changes in delivery of mental health services directed by NYS Dept of Health and Office of Mental Health. We've learned there are three providers of services vying to be the operator of a health home in this area and beyond. RSS, Inc. is one, Ellis Hospital in combination with Hometown Health and Visiting Nurse Service is another and Fidelis Care, Inc. is the third. One or more will be chosen by NYS Health Dept to run a network of agencies and organizations as case managers and care coordinators. They will focus on monitoring high cost users of medical and mental health care in hospitals and nursing homes to find ways to hold costs down.

We arrive before noon at the deli, have tables reserved for us at the rear of the restaurant and start the meeting shortly after 12. We order individually off the menu--no need to reserve with us. Center Stage Deli is about two miles south of its juncture with Altamont Avenue at its northern end. From intersection of State St and Brandywine Avenue, go south on Brandywine three blocks to Duane Avenue on your left, turn east on Duane and proceed around bend and over bridge to stop light. That is where Hamburg joins Altamont Avenue. Take left fork at the light onto Hamburg and drive at least two miles south to restaurant. It is on the right, just after U-Haul truck rental place and in small block of stores near the road, with sign in front.

Pls read of other events in our October E-News newsletter to be sent by e-mail about Oct.1. It lists dates and times for weekly relatives support groups and the DBSA consumer support group as well as events happening this month. Find back copies of the E-News on our website, namischenectady.org. See you there. Roy Neville 377-2619

Swimming with the sharks or What I did on vacation

I was out in the Gulf off Florida's Sanibel Island in late March swimming in six feet of water parallel to the beach. I go about a quarter mile up the beach and then turn around and swim back, leisurely, just enjoying the pleasure of it. I'm almost always the only one in the water who swims out this far and stays out for any length of time. I overcome the resistance of waves lapping, the bumps in the water as I paddle along in broad, even strokes. The minutes pass. Nothing disturbs me. There is no sound out here. The children and the grownups I see on the beach as I slowly pass them are silent from here even though it is noisy where they are. Their chairs and beach umbrellas and swimsuits dot the shore with bright colors.

Now I swim with my face underwater and see only yellow--the color when water has a white sandy bottom. When I look toward the shore the water is gray-green and when I look the other way farther out facing toward Mexico it turns dark blue. The line of the dark blue meets the middle blue of the sky at the horizon. I float on my back and look up the sky and the sky infinitely absorbs the color blue. I can stare into the blazing sun, too, which makes me see a blob of orange. It is dreamy and delightful. The sea buoys up my body, now motionless. I roll to one side and take in the whole scene on the beach, pleased that I am the only one here and they can look out and see me daring to be out alone--the old guy with the bald head. I cruise along swimming slowly, my arms moving effortlessly, my breath coming easily and I regard all those on the beach as off in another world.


The days are perfect for a swim--85 degrees and water temperature 72. It is so peaceful. I am aware, however, of the slightest feeling of dread. That spooky feeling that everything could be smashed in a split second. There are sharks around. They roam close to shore in the warm waters surrounding Florida. They are all predators but the small ones that the anglers pull in out of the surf and less aggressive species like hammerheads aren't going to bother me. Just the big guys. You eat sharks—they serve fried shark balls at one of the restaurants, even though they're garbage eaters and carry germs. My father served us shark steaks that he caught with an ordinary line off the pier at Clearwater Beach in 1937.

Over on the Atlantic side you do hear of encounters. It isn't fun because these marauders are sheer power and evil. They have rows of big, sharp teeth like you see on Discovery Channel when they extract one from the sea and open its jaws. No way to escape those jagged tines. The thing is, sharks are dumb or don't see well because they sometimes bump into a swimmer with an immense whack and miss getting a good bite. That's the story I keep in mind, how a teenage girl on her board off Lantana Beach on the Atlantic side was smashed into but the shark missed making a kill. She told the newspaper it felt like getting hit with a truck. And he drove her down in the water to drown her. I'm in only a few feet of water so that doesn't scare me but the idea of being bowled over while I'm innocently watching the girls on the beach, does.

I believe sharks have a miserable time trying to catch anything at all. They don't want a human, that's not their main food. The story is that the surfers lie on their boards waiting for a good wave and the poor shark mistakes the shape of the board for a dolphin, his favorite meal. So I'm careful not to lie motionless on my back too long or dangle a leg that might look like a meal to a shark. I keep moving a little.

Would I know how to fight back if one of these monsters attacked? I learned from Discovery Channel you punch them on the snout in a sensitive place just above the upper lip. Or was that an alligator? They release their grip, although your arm or leg may be inside their jaws by then. Those rows of teeth—BIG, pointy and razor sharp, are going to take a chunk out of you. And you know what that means? You bleed profusely in the water and that immediately attracts all the sharks from South Beach to Acupulco, because they smartly pick up the scent.

So the gambit is not to flop in the water and fight tooth and nail, so to speak, or try to wrestle with a leathery skinned beast far bigger than you and uglier, who loves chomping pieces of flesh off other animals. That's what he does for a living. You run for it—you swim like you never swam before, straight for shore, like you're Michael Phelps racing for the wall in the 100 meters in the Olympics. You yell for help —they will point to you but they won't come. Would you head out from shore to make a second meal for some leviathan? Anyway, you don't stop till you reach beach because the shark has had a taste of you and he's just following the trail of blood now, with a few of his brothers, licking at your toes.

They will lay you flat on the sand while the blood oozes out and the waves lap at your feet. The bystanders will ooh and aah at your gaping punctures. Your wife can't look. The children are told to draw away. When the EMC's come they gently shift you onto a gurney and carry you through the crowd to their vehicle. You wake up to find yourself in a whitewashed hospital room, attended by sweet young nurses. They coo and hover over you while you put aside the pain and tell them how you fought off the biggest of the big sharks. The photographer snaps your picture with the gash in full color. And you'll take a copy of the newspaper back home to show your buddies up north what bravery is really all about. (Roy Neville)

The doctor as God and how to talk to one

(from A Letter To Patients With Chronic Disease, July 21, 2010 by Dr. Rob in Better Health Network)

This is from a piece in Better Health, a bloggers network on the internet. Dr. Rob opens by confessing he's just an ordinary guy who happens to be a doctor and he's really afraid of chronic patients because they know their illness better than he does. With someone seriously mentally ill, he's aware he can't do much more than practice pharmacy. He's up on that but knows its limitations. So we have this strange apology from Dr. Rob to his chronic patients: “You have it very hard. After spending 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I, too, can’t understand what your lives are like. “How do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body?

Dr. Rob says he can’t imagine. He says “You scare doctors. I am talking about your understanding of a fact that we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand. But chronic, unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.”

OK, Dr Rob: Where is this going?

“So when you approach a doctor,” he continues, “especially one you’ve never met before--you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? Let me give you advice on dealing with doctors:”

“Don’t come on too strong--yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.
“Show respect--I say this one carefully, because there are certainly some doctors who don’t treat patients with respect, especially ones like you with chronic disease. These doctors should be avoided. 
“Keep your eggs in only a few baskets--find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. 
“Use the ER only when absolutely needed--Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. 
“Don’t avoid doctors--one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. . 
“Don't mess with the wrong people--you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship.”

My comment: the trouble with this is that there are patients arrogant enough to try to bamboozle the doctor into prescribing medicine they want in the amounts they want, rather than listen to the doctor. If doctors are this insecure they're missing something in the relationship. He's underestimating the role he plays in society as God. In our culture we bow down to doctors. Only if they reek of malpractice--poor prescribing, misdiagnosis and the like, do we complain and move on. People with serious mental illness have indeed had it hard with doctors, not because of what he says but because doctors don't trust the patient to accurately describe symptoms and history. And the docs don't have an awful lot to go on.

So how do you talk to your doctor? Just to take one example. Let's say you're overweight. Or you're switching from one drug to another because the drug you're taking isn't working. There's a great book that talks about this, by Peter J. Weiden, MD et al, called “Breakthroughs in Antipsychotic Medications--A Guide for Consumers, Families and Clinicians” (1999). Weiden says people get nervous talking to their doctor about medication. “The doctor is the expert and they don't feel comfortable raising the question of switching medications.”

He suggests a respectful approach that also lets you in on the decision. You might say, “I'm having a lot of side effects on the medication I'm taking now. Do you think I might have less trouble with one of the new atypical antipsychotics?”or “I've been taking this medication for six months and I'm still having a lot of symptoms. I'm wondering if it might be time to try a different medicine. What do you think?”

Weiden affirms, writing over 10 years ago, that “it's important for you and your doctor to reach a decision together. Be sure to give your doctor all the information you can about what is going on with your illness and your life at the moment. If your doctor says it's not the right time for you to switch medications, be sure you understand why.”

Let's say you and your family have already met with your doctor and decided that it's time to change your medication. “Make the switch,” he says, rather than hesitate. “It's impossible to know ahead of time exactly how your body and brain will react to going off your old medication and starting the new one.” You'll be taking the new medicine while staying on the old in what is called a cross-over. He goes on to talk about the effect of the change on your side effect medicines, how to avoid relapse, and deal with a temporary increase in symptoms. “Sometimes switching medicine is like doing road work,” he says. “When the highway department starts repairing a road, things usually get worse before they get better.” The doctor has good sense. His way of dealing with his patients has a lot more going for it than the hustlers who sell a message today that recovering patients should tell the doctor what is best. That won't work for long. Doctors are changing, too, we believe. They no longer act like God, or shouldn't. (Roy Neville)

”New era” electronic health records not so promising--Part 1

We should take a good look at these schemes the state and federal governments have for embellishing the already gargantuan systems of electronic medical records that you see in use in hospitals, clinics and doctor's offices. The State of New York is making a big pitch for a big “new era network”, a multi-million dollar program of advanced electronic medical records which supposedly would let one doctor pull up the medical records of another doctor's patient and work on him right off, easy as pie. It would open your medical records and mine to the eyes of others and would needlessly keep on file every detail of our medical history for posterity. That's the substance of a story in the Albany Times-Union October 27.

I think this is mindless record keeping. We can't afford it. The jobs this would create won't go to ordinary working people. The promoters haven't worked the kinks out of the privacy issues at all. Nobody wants their hospital records open to others. The promoters claim the promise of more information flowing to doctors and care centers is “like a public utility—a sort of highway system for medical information.”

“Better information helps doctors do a better job” said the executive director of NY eHealth Collaborative which went in on the proposal with the NYS Department of Health. It's a $129 million plan to the federal government to create the country's largest network for medical records. Now I ask you: Do we need this?

Sharing medical records doesn't happen now and it may not happen soon, despite the shrill publicity.

Here's why. In the patient wards inside Ellis Hospital you see the nurses clicking on their computer consoles, morning, noon and night. They keep up to the minute information on the patients in their care. Endless facts and trivia go into the entries on the screen, I was told, like whether the bed rails were up. They do their progress notes and charting. I don't think the nurses share the screens with one another. The data isn't for outside eyes. The patients can't see their own records, nor can other professionals without using access codes. That's because the system in use in the hospital is going to be different from another system used by a doctor in his office who serves patients on the unit. And the doctor's computer isn't accessible to other professionals. The whole system is built for defense, protection of patient information and protection of the hospital in this case.

That's what I was told. The hospital has the nurses tapping away for hours at their computers in the hall rather than do direct patient care because the hospital worries about lawsuits. And it wants to be sure all the little things are done. What if someone missed doing a test or procedure? We'll catch it. What if a reading is challenged? We have the data on board. Records are kept for the benefit of the hospital and possibly the insurance carrier, not for the patient or competitors or other outsiders.

This whole system seems to be designed to not give access to others. It would be foolish to keep things entirely secret, but careless to let information flow without patient approval. It doesn't seem likely a doctor will share his patient's records without an okay, and he won't be able to share without modifying the system. Of course that's what the state is proposing to achieve in the new generation computer service.

We need to keep an open mind about electronic medical records and the huge systems some people envision for the future. As I see it, the article in the Times Union amounts to public relations for the statewide Health Care (hospital) industry, the state Health Department, electronics data systems corporations and many others in the field. Why should we be interested?

These systems have serious drawbacks. They are extremely expensive. They take away from spending that is needed badly by the institutions and agencies that do direct care for people, in health and mental health. They are not needed in today's care system. No one is going to get better with the added information these systems are to contain. No one's life is going to be saved with them. As patients, we don't need them to keep track of every moment of our hospital lives with data. Most of the data to be kept is useless for future reference. They are a luxury we cant afford.

Our NAMI families should take a good look at what the new systems are doing. We want personal care, not record keeping. All the data that is needed in the ordinary course of events for a patient's care is already being gathered and it soaks up much of the time and cost of mental health care for our family members in the hospital. We should not pass along this information without being better judges of it. Of all the things that are needed for better care, this is not one of them.  (Roy Neville)

NAMI needs to monitor programs, and it doesn't

Our local NAMI bylaws call on us to provide a mutual support, education and advocacy group for the families and friends of people with serious mental illness and to work to improve the lives of people with serious mental illness. There’s a little more to that—we’re to support research and advocate for improved treatment, housing, and other services and for the rights of persons with mental illness, as well as propose and conduct programs in the community, and raise funds.

Nowhere does it say how we are to be effective. And one way to be effective is to observe and monitor what goes on in government and the local service programs so we have an idea what we’re talking about. We’ve really dropped the ball on this, just as NAMI national doesn’t keep a line by line voting record of Congress people on issues important to us. And NAMI NYS doesn’t monitor the NYS Legislature to see that constituent wishes are followed through on.

On that score, how lawmakers vote, we lose out by never following up with them to ask how they voted on a single issue and what we might do to change their minds. It’s all fair game.

Monitoring goes hand in hand with advocacy. We have to put some teeth in our advocacy and one way is to keep tabs on what the lawmakers at state and local levels and directors of agencies do affecting mental health and Medicaid, homeless services, housing, elderly care and assistance to the poor, among key topics. Most of their money comes from the state to be distributed to the county and various agencies. But people who make up these boards and committees voice their politics over these issues and they influence the community in which we live.

It’s not easy to monitor company board meetings but we can get the information once we know what to ask for. We can interview directors of mental health and housing programs about the actions they take. We can ask the hospital’s public relations office or community relations at the health care insurance plans like MVP. We can go to public meetings like those of the county community services board and its mental health subcommittee, and we can join these boards.

But we still don’t learn much unless we know how to press for facts about their performance on the issues we raise. We haven’t been doing this, not because we’re not capable of it, but we’re lazy. And if we don’t press them we don’t keep them honest and ready to defend what they do in this arena. That goes for city, town, county and state and federal officials and lawmakers.

We do have examples how monitoring can pay dividends. Our allies on the criminal justice committee of the League of Women Voters have observed the county’s alternative treatment court (mental health court) over the years, two or three of them sitting in sessions month after month. They now have a good estimate of how the court works and what it needs.

Some other issues have to do with law enforcement and criminal justice. We’ve already formed a committee and are urging the city police department and sheriff’s office to train officers for a Crisis Intervention Team (CIT). It’s a safer way to deal with someone with disruptive behavior on the street or in the home. We want to form a criminal justice task force by inviting the police chief, district attorney, public defender and city judges to meet together with people from mental health, probation and social services. They’d deal with sentencing, the issues of alternative courts, diversion to treatment instead of jail and the other needs of people involved in the criminal justice system. That’s monitoring, too.

We need a few friends at city and county government level who we can reach out to. The county board reviews and votes on spending for mental health, Medicaid, and nursing homes, for instance, although most of it comes in the form of state aid. The City Council votes on the federal Community Development Block Grant and awards money to police and firemen rather than to needs in the low income community. Individual members on city and town boards and on their planning committees have blocked needed housing applications for the disabled population. City council has promoted the move out of the YMCA and Bethesda House from downtown. If we choose to, we can write or call these leaders or speak at council meetings. Why not hold them responsible for how they vote?

Schenectady Municipal Housing Authority is another agency that bears watching to see it applies for all the available federal HUD grant money for more affordable housing. We just need to keep after them. Ellis Hospital should get our attention, too. Its management approved plans to move Collage social club downtown before consulting consumers and families who have an interest in this program. So far, over objections, the move is going through. It’s another lesson. (Roy Neville)

They can't have it all, can they? Remodeling mental health services

What happens if Medicaid is cut back?

NYS Office of Mental Health (OMH) is going gangbusters creating a new image for community mental health in our county and all over the state. It's restructuring the mental health clinics (new rates for Ellis mental health clinic) and converting continuing treatment centers, social clubs and intensive case management into PROS model programs (personal recovery oriented services), among other things.

It's trying to pull together mental health and substance abuse services along with general health care in the same locality under one roof in what's called a “medical home.” This hasn't gotten too far with the mental health clinic and substance abuse programs here, but it will come. It's considered the wave of the future—like one-stop shopping.

Of course, you still need dental care and children's health services on the same campus, don't you? Ellis's health center on McClellan Street has moved part way in that direction.

The state OMH wants to move patients out of nursing homes and state hospitals like Capital District Psychiatric Center, into homes and apartments. The community housing would be run by not for profit providers like RSS and Mohawk Opportunities in our area. Those movements are underway locally with requests for proposals (RFPs) about to be issued by the counties to the housing providers to open 11 supported apartments in Schenectady and more than 20 in Albany County, from what we hear.

Aside from the apartment growth, reshaping of the mental health landscape is costly and questionable as to the merits. It's coming at a time when there isn't any more of the usual state money for expansion. The not for profit hospitals and agencies are taking in clients with high needs, some of whom do not have health insurance. Family and child counseling agencies have been tightening their belts for some time with the tough economic situation. Yet the state finds the money to spend where it wants.

The main funder, of course, is Medicaid, the cash cow that the Office of Mental Health is willing to drain as fully as imaginable. Most of its mental health aid to communities now comes from Medicaid (50-50 with the feds), not out of state revenues. Programs called Community Support Services and Reinvestment, entirely state funded, are drying up or gone. From what we gather the big providers depending on Medicaid, like Hometown Health, Ellis Hospital and Northeast Family and Child Society, are hanging on. Others, like Catholic Charities, Carver and Family and Child Service of Schenectady, if they can't charge Medicaid, may be worse off.

Closing Collage social club and converting it and Continuing Treatment to PROS will cost more than present programs but Medicaid will now pick up the bill. A clubhouse has closed in Saratoga Springs but it has not been replaced. In Albany County the state wants to consolidate mental health services--the social club, a drop in center, day services and work programs are affected.

New reimbursement rates for outpatient mental health clinics are designed to make these operations more attractive to sponsors like Ellis, while they cost more. And the state is stimulating more patient care in the home with more generous stipends to caregivers. The promoters think patients can get cheaper care at home than in a hospital but there's no proof the patients won't be back on the inside if care isn't sufficient.

Moreover, the state and federal governments are going to spend billions of dollars to convert record keeping systems in hospitals, clinics, labs and doctors offices to electronic systems. These, they say, will speed decisions about patient care and tie in all the doctors and agencies so they can better manage care. It's already upset the traditional way that nurses and social workers do their jobs and there are big questions about confidentiality of records.

The state is willing to change patterns of care in community mental health on the grounds these programs haven't worked well enough to achieve recovery of patients. There simply isn't proof, however, that their new ideas will work better for people with serious mental illness. For the most impaired it is simply a gamble.

Medicaid facing the axe

Meanwhile, cost of psychiatric care is said to be the fastest rising sector within Medicaid spending and the politicians are aware of this. As a state we have a particularly high population of patients with psychiatric illness on Medicaid. And NYS pays more per patient than other states for its Medicaid coverage.

New York's Republican governor candidate Carl Paladino says he'll take an axe to Medicaid and chop it back 40 percent. Andrew Cuomo, his Democrat opponent, also pledges to halt the hemorrhaging of Medicaid spending. We heard a similar tune in a recent debate here between Senator Hugh Farley and county legislator Susan Savage.

How can reforms in mental health care keep going if Medicaid is cut? “That's the million dollar question,” says Darin Samaha, director of the county Office of Community Services. (Roy Neville)

SAMHSA has let us down—Part Two

This agency discovers public relations and “social marketing”

We're commenting on the way SAMHSA- the US Substance Abuse and Mental Health Services Administration in Washington--has set out to spend our money. This is put forth in a strategy statement on its website that shows you some of the political and pro-business sides of the agency. To continue with my remarks from Part One, we pick up with item four on their list of key strategies.

4.Health care reform—by which it means “broaden health coverage to increase access to appropriate high quality care and to reduce disparities that exist.” Well, we can agree with that. This is simply jumping on the bandwagon—we already have a nationwide health care reform law and we have a federal health insurance parity law that the administration takes credit for. This item rehashes the added health care measures and opportunities afforded the public under the health care reform act and protections gained under the parity bill. However, as we see, this is a work in progress. Some of the reform act's provisions don't come into place until 2014.

5.Housing and homelessness—SAMHSA wants to “provide housing and reduce barriers to accessing effective programs that sustain recovery for individuals with mental and substance use disorders.” Yes, but it also says homelessness can be prevented and that's stretching the agency's credibility. It calls for affordable housing and rent assistance to low income families and rapid re-housing of individuals who become homeless. This would be done by collaboration with state, federal and local governments and business. That may be so, but in this economic climate in NY State, housing for the mentally ill is not being built and the ranks of the homeless must be growing with home foreclosures and family bankruptcies. The agency really has little to do with housing the homeless in New York or elsewhere.

6.Health information technology, electronic health records and behavioral health—SAMHSA puts a lot of stock in this, a boon to computer and data processing companies and an additional layer of trained workers in hospitals and offices. It wants to “ensure the behavioral health provider network, including prevention specialists and consumer providers, fully participate with the general health care delivery system in the adoption of health information technology (HIT).” In my opinion we should avoid what has become a mindless spread of electronic medical records in hospitals, clinics and anywhere else.

The new record keeping systems are extremely costly and don't really benefit the patient. We shouldn't want detailed medical records kept on us over a lifetime by impersonal agencies. Their purpose, as related to me by nurses at Ellis Hospital, is to protect doctors, the hospital and insurance companies from liability for poor medical practices and other sources of lawsuits. Electronic medical records don't help you get better any faster or reduce your chances of getting sick. Confidentiality rules still get in the way when the records have to be shared and the computer systems used by the different agencies, hospitals and professionals are sometimes incompatible. Nurses and therapists tell us the extra record keeping is a time-taking nuisance that keeps them from providing bedside care, which they prefer to do.

7.Data, outcomes and quality; demonstrating results—SAMHSA wants an “integrated data strategy” that “informs policy, measures program impact, and results in improved quality of services and outcomes.” This appears to be an add-on for private company managements. We don't need it. It would tell management people what they already want to see. It pays off the data processing industry, the same as for electronic medical records. While I may sound cynical, this is another example of how a government agency in Washington and big business feed off one another, spending our tax money. The agency is also retreating from its mission to seek better treatment for patients through direct care and better medicines and therapies--the old fashioned way.

8. Public awareness and support—this is the worst of SAMHSA's proclamations, in my view. It calls for “social marketing” to see that people buy into the latest goals and strategies of the agency—such as touting recovery of seriously mentally ill people, shifting costs, shifting the record keeping burden and involving private business more in mental health care. It's like the advertising and marketing department. “There will be a target audience,” the agency states, “to voluntarily accept, reject, modify or abandon a behavior for the benefit of individuals, groups or society as a whole.” This is more than public relations. It's a devious way to self-promote and work hand in glove with private business to persuade people to buy into what they are doing, for better or worse, I believe. (Roy Neville)

SAMHSA has let us down—Part One

When government becomes a reformer

NAMI has invited us to send in our comments on the latest strategies of the federal Substance Abuse and Mental Health Services Administration (SAMHSA), which you can find on the internet. Normally we stay away from the big shots but this is the agency that sets the leadership tone about how everybody can recover from serious mental illness and we know how to do this now when we didn't do it right before. I suggest that's setting the psychiatric world on its head.

So it bears watching where these ideas come from and who benefits. SAMHSA isn't really a research arm of government, it administers policy. It seems to blow in the winds of today's reform-minded politics surrounding mental health care. Somebody has pumped up these ideas into its collective head. One likely source is big business as the agency sets its sights on use of more technology and electronic data systems in hospitals and health care systems, as you will see below. And then there is the recovery crowd that already shows its influence in how SAMHA expresses its priorities.

These latest consist of eight strategies--like the eight wonders of the ancient world--as if eight wraps it up. Their ideas are at times remarkable, and call for spending billions. Key priorities include, for instance, Prevention of Substance Abuse and Mental Illness, Military Families, Housing, Electronic Data Record Keeping, and something like “social marketing” of success. My comments follow.

1.Prevention of substance abuse and mental illness is possible, SAMHSA tells us, by creating “prevention prepared communities to promote emotional health and reduce the likeliness of mental illness, substance abuse including tobacco, and suicide.” Now, prevention isn't for everybody. What we've learned over the last 30 years is that you can't prevent schizophrenia, bipolar and major depression, the serious illnesses. You can modify their impact on the individual and enable someone to have a relatively good life.

Here's the explanation, as best as I can do. The brain wiring and brain chemicals in somebody with schizophrenia are thought to be way off. We believe the causes are more genetic than environmental and someone has been predisposed to the illness by heredity. We've read that the natural tendencies of these disorders to show up are more likely when encountering stresses in life, perhaps such as noise and crowding in cities, bullying and harassment of children, and poverty in general. Those conditions aren't entirely preventable either. The most severely ill should take SAMHSA's priority, in my judgment, yet the agency is side stepping them.

By contrast, substance abuse and cigarette smoking are voluntary behaviors in my book. People can get hooked. But these are habits totally unlike schizophrenia, which the person doesn't bring on himself.

On another of the government's initiatives, mass screening of school children to detect early signs of defects in emotion or thinking is largely a waste of money, in my opinion. They're already doing it in Schenectady and it's costly, adding thousands of hours to children's health care costs. We know that some of these behaviors disappear with time, and we already intercept children with attention deficits and restlessness or inability to learn. We've simply tacked on an added comfort level for teachers.

2. Reduce trauma for people with substance abuse and mental health problems, SAMHSA exhorts us, “by integrating trauma-informed approaches throughout health and behavioral health care systems and by diverting people with these disorders from criminal and juvenile justice systems.” I think they're talking about educational and behavior modification theories for those individuals who are trouble for their classmates and neighborhoods. We do need to pay more attention to juveniles and adults with repeated behavior problems. Serious treatment for them in youth homes, jails and prisons is missing.

3.Help military men and women and their families “to ensure that needed behavioral health services are accessible and outcomes are successful.” Well, of course. But why mention the families? They're in the same boat with lots of others. And do the people at SAMHSA know how generous are VA benefits for service connected disabilities? These don't have to be in connection with combat. Veterans qualifying for disability receive a far higher monthly stipend than civilians on SSI or SSD for the same kind of illness. Veterans organizations, the medical lobbies and prescription drug companies stand to benefit grandly by including families in coverage. Some vets coming back from war zones need special help--mental and emotional counseling, medicine and support systems, job and housing help. But not all their conditions call for entitlements. Some conditions are temporary, I think, caused by the social dislocation of young people thrust into the business of fighting a war. I would put priority on those veterans coming back who have a history of a brain disease, and not the "worried well" whose main complaints are problems of living. (Roy Neville)

Under fire, NAMI tells where its money comes from

But why didn't it used to do this?

An article September 6 in the journal Chronicle of Philanthropy tells with ringing truth how much corporate and foundation funding the National Alliance on Mental Illness (NAMI) and several other major not for profit companies receive. Senator Charles Grassley, a senior member of the Senate Finance Committee, got on the tail of NAMI last year after it became known that it had substantial ties to the pharmaceutical industry. The story, by Suzanne Perry, is titled How Much Must Charities Disclose About Donors? and it's a staple of the magazine to inquire into the connections between nonprofits and corporations.

In this issue NAMI is praised by the senator for its “detailed, up-to-date information about its donors.” The article says “each quarter NAMI posts the names of all corporations and foundations that gave the charity more than $5,000, the amount they contributed, and how the money was spent. Visitors can see, for example, that in the second quarter of 2010, Pfizer paid $35,000 for a corporate membership; Ortho-McNeil-Janssen Pharmaceuticals $60,000 to NAMI Beginnings, the group’s quarterly magazine; and Eli Lilly $250,000 to the Campaign for a Better Tomorrow, a program to help the charity carry out its educational, advocacy, and training programs.”

Transparency is something new

This might be something for all of us to laud. But NAMI's transparency is brand new. A few years ago it received about half its annual funding from drug companies. And it never told us anything about that, the loyal congregations who flocked to its annual conventions year after year. There were speakers who talked about medicines and treatments for all the major mental illnesses, in lectures and seminars, and “ask the doctor” sessions. The company salesmen and women handed out brochures and pamphlets in the exhibit areas. They certainly did promote the products, even as we were thrilled to take home pens and doodads as souvenirs for listening to their spiels at the demonstration desks.

It's a question whether we were sold on any one company's products when we had easy access to talk to the salespeople behind the desks. After all, this was the mingling that made these conferences work. We knew the big names in the field like Pfizer and Novartis, Lilly and Astrazeneca, would be there, and they were every time.

But the way they influenced us with tidbits about their products—the newer ones like Abilify and Geodon at the time or the old standbys like Risperdal and Clozaril, was different from the way the speakers talked about treatments. We were more engaged by the science they spoke of, like how the drugs would overcome the lethargy and inertia that marked our children's lives, or how they would rid our children of the hallucinations and delusions forever invading their consciousness.

We put great faith in the pronouncements of the doctors who let us ask questions standing in a long line to reach the mike and they answered in the most specific terms they knew how. We asked why some symptoms persisted as the course of the illness waxed and waned; what were the best combinations to overcome the delusions and when should dosages be raised or lowered. In this sense, they certainly did influence our knowledge of the specific illness and what medicines were recommended over others.

I don't remember ever feeling brainwashed at these educational sessions when you could talk to more than one doctor personally for a few minutes in the course of the day, and expect they were sincere.

The political and ethical sides

Mike Fitzpatrick, the executive director of NAMI in Arlington, Va., said the organization had never let its fund raising sources dictate any of its policies. But Senator Grassley's committee found that NAMI was taking in a lot of drug company money while it was promoting industry-backed legislation.

From my recollection, NAMI leaders and board members never said anything prejudicial about individual drug companies. But maybe that's the point; NAMI was kept in business by these donors and never let on to what extent it was under their wing. By saying nothing, we never learned what subtle influence a company might have had on NAMI's political activities.

NAMI maintains a full time lobbyist who visits congressional offices on the Hill and the federal agencies like the Center for Mental Health Services (CMHS) that govern mental health policies.

A former board member, Richard Lamb, a professor of psychiatry at the University of California, resigned from the board last year because of its “financial dependency” on drug company revenues. “It's not ethical, as I see it,” Dr. Lamb says in the article. “It seems to me if you are going to take money from drug companies, you should take no position whatsoever on psychopharmaceutical matters.”

According to the Chronicle article, Dr. Lamb says that Fitzpatrick wrote an article in the journal Psychiatric Services in 2008 urging policy makers not to impose rules that would prevent government health plans like Medicaid from paying for so-called second generation anti-psychotic drugs for schizophrenia, even though the drugs were more expensive than earlier versions. “That point of view,” he says,”is worth many billions of dollars to the same companies that provide money to the mental health alliance.” (Roy Neville)

In defense of recovery—and some objections

Bias against the recovery model persists
(from Recovery to Practice Weekly Highlights, on the internet by Larry Davidson, PhD, Oct. 12.)

“The fact that the recovery concept is perceived by some people to be anti-professional or in conflict with medical or clinical practice is an unfortunate legacy of the origins of the movement in the early days of de-institutionalization. As previously noted, the recovery movement in mental health was first and foremost a civil rights movement founded and led by people in recovery themselves. Many of the founders of this movement had been mistreated in the mental health system of the mid–20th Century, most often being hospitalized and medicated against their will, and suffering a range of indignities, humiliations, deprivations, and abuses in understaffed and overcrowded, largely custodial institutions.

“It therefore is no surprise that some of the early rhetoric of the recovery movement came across as anti-professional and as calling into question, if not blatantly critical of, the medical and clinical care that was being provided at the time. In the process of reclaiming their rights to full citizenship and community membership, ex-patient advocates denounced the system of care that had made their advocacy necessary. It had been mental health institutions and professionals acting as agents for society that had taken away their liberty and subjected them to unhelpful, and at times extremely injurious, treatments. It was therefore these same institutions and professionals who became the focus of their criticisms and of their efforts to reform practices that they viewed as performing social control, rather than medical or clinical, functions.”

My comment: I see this as an apology for the rude behavior of the radicals in the consumer movement, going back 20 years ago when they disrupted meetings when they could. Some of the radicals took up the recovery movement while others never came around in their sourness against the doctors and forced treatment they experienced as sick people. Just keep a perspective about this.

The “medical model” of care as more than medicine
(also by Larry Davidson in the same Recovery to Practice Weekly Highlights as above)

“More recently, another source of the perception that the recovery movement is anti-professional stems from complaints expressed about mental health professionals’ use of the so-called “medical model”. This, too, is an unfortunate legacy of the history of psychiatry over the last 40 or so years, during which the neurobiological model of mental illness and its treatment were ascendant to the point of overshadowing other perspectives. As a result, the term “medical model” came to be used to criticize and disparage an overly narrow focus on the presumptive biological nature of mental illness and on the almost exclusive reliance by some segments of the field on psychiatric medications as the only effective treatment.

“But most physicians, including psychiatrists, are not trained in such a narrow version of a “medical model”. The “medical model” in which all health care professionals—regardless of discipline—are trained is a bio-psycho-social model that addresses the biological components of disease and disability, but also incorporates factors and interventions that speak to the psychological and social dimensions of human health and illness as well. Such a holistic “medical model” is compatible with the vision of the recovery movement, which focuses on the whole person, even though there may remain some differences in emphasis.

“In fact, recovery mostly incorporates medical approaches in its holistic focus. One distinction is that the primary focus of the bio-psycho-social model is on the pathophysiology of disease, deficit, and dysfunction, although there remains room in such a model for the active role of the person in adapting to or recovering from a given condition. As a model for self-care, the recovery model, in contrast, focuses less on the causes of disease (which remain poorly understood) and more on what a person can and may need to do to deal with and overcome his or her difficulties. Rather than conflicting or competing, it is possible to view these models as complementary and as having much to offer each other in exchange.”

My comment: I thought all the doctors in the universe accept the medical model of care whether it's schizophrenia or brain tumor or tennis elbow. Davidson gives it a spin away from the conventional sense that means to me treatment in accord with good medical practice and knowledge of what works best. That means in treating schizophrenia, for example, that priority goes to medicine as the best travelled road we take, not talk therapy alone. The medical model may also be holistic but Davidson's recovery model is more than that. As explained on his website, it features among other things a transcendent self-esteem on the part of patients who figure they are entitled to recover, and they have the right to tell the doctor what to prescribe. While negotiation is good, stubbornness is not.

Parents struggle mightily to get their mentally ill son or daughter to the doctor. From what we learn, someone who won't budge for any reason may not realize they are sick, which Davidson doesn't take into account. And someone who refuses care becomes a greater liability to the public, a high cost and a danger. Nevertheless, the recovery adherents don't want any interference with free choice and it is out of this hubris that they run into difficulty. That's when the headlines and tragedies arise. The radical consumers really don't want doctors and medicine to govern their life and Davidson has been supporting their free choice. Neither do they want, for example, electroshock therapy, Kendra's Law provisions for assisted outpatient treatment, nor hospital restraints. I don't think the medical model is in their vocabulary at all despite the smooth way it's presented by the professor. (Roy Neville)

Drug makers take big hits over their schizophrenia drugs

Story of a NAMI whistleblower
An article by Duff Wilson of the NY Times  October 2 describes the heavy penalties facing the pharmaceutical industry in a series of lawsuits going on now, stemming from a history of the companies' aggressive marketing of newer-generation psychiatric drugs and the shadiness of their studies. It also brought to mind this story began a few years ago with some courageous whistle blowing by a former NAMI NYS board member who drew a lot of attention.

The article is a revelation of the boldness and greed that has marked the actions of drug companies, among the most profitable businesses in the US economy. For at least 20 years we've all been paying the bill. Sales of the new class anti-psychotic drugs like Risperdal, Zyprexa and Seraquel have been pushed to the limits through highly successful marketing campaigns to reap ever higher profits. It's not only that more people need to take the drugs now but that doctors are so willing to prescribe them. The charge is that the industry has bought off the professors and researchers who set the tone and local practitioners who prescribe these drugs to patients with serious mental illnesses.

According to court documents, the drug companies' schemes included “payments, gifts, meals and trips for doctors, biased studies, ghostwritten medical journal articles, promotional conference appearances and payment for postgraduate medical education that encourages a pro-drug outlook among doctors.”

The article claims that profits grew so big the companies knew their claims supporting one drug over another were probably false but they simply threw ethics to the winds. As the extent of the drug makers' payoffs to psychiatrists and university labs were exposed and the companies owned up to their fictitious claims, some of the biggest companies have settled lawsuits for millions of dollars. Government prosecutors have gone on the attack and have won large jury verdicts against them.

“The new generation of antipsychotics has also become the single biggest target of the False Claims Act, a federal law once largely aimed at fraud among military contractors. Every major company selling the drugs--Bristol-Myers Squibb, Eli Lilly, Pfizer, AstraZeneca and Johnson & Johnson--has either settled recent government cases for hundreds of millions of dollars or is currently under investigation for possible health care fraud,” the article points out.

“Two of the settlements, involving charges of illegal marketing, set records last year for the largest criminal fines ever imposed on corporations. One involved Eli Lilly’s antipsychotic, Zyprexa; the other involved a guilty plea for Pfizer’s marketing of a pain pill, Bextra. In the Bextra case, the government also charged Pfizer with illegally marketing another antipsychotic, Geodon; Pfizer settled that part of the claim for $301 million,” the Times continues.

“Lawyers suing AstraZeneca say documents they have unearthed show that the company tried to hide the risks of diabetes and weight gain associated with the new drugs. Positive studies were hyped; negative ones were filed away.”

Blowing the whistle on the drug makers
The interesting thing is that a former NAMI-NYS board of directors' member, Vera Hassner-Sharav, was among the first to blow the whistle on the cozy relationships that had developed between researchers and academics in psychiatry and the drug companies pushing the new drugs for schizophrenia. This was about 2002-03 when Vera, who was a career research librarian in NYC and no longer on our board, published findings on her website that were so incriminating against the companies they couldn't be ignored. She testified before Congress as I remember and her data and analyses were soon picked up by the national news media and became the focus of a Congressional investigation. Some of the culprits have paid fines and lost academic standing as a result of the inquiry, while the purge continues.

There's a second point to be made here—the complicity of many of those professors and psychiatrists who advised us about the relative merits of the different anti-psychotic drugs at the annual Columbia- Psychiatric Institute Schizophrenia Conference and our annual NAMI conferences. These teachers and advisers, sometimes in their long white coats, showed graphs and charts to convince us of the superiority of one drug over another. We were told year after year by the same speakers that Clozaril was in a league of its own as the best of the newer anti-psychotics; and the entire class of the new drugs caused less side effects than the older drugs. We never doubted them or the reasons for the popularity of some of these drugs among the local psychiatrists prescribing for our children. Since then we've lost respect for some of the doctors and their sources.

Older drugs don't match the newer ones
Despite the high profits and abusive marketing of the newer anti-psychotic drugs, the article passes along claims that the newer drugs aren't significantly better than the older ones and are far more expensive. It soft pedals the fact that the older class of these drugs, beginning in the 1950s, like Prolixin and Haldol, “could cause a range of involuntary body movements, tics and restlessness, and people stopped taking them.”

The second generation of anti-psychotic drugs came in in the 1990s. These were sold to doctors more broadly on the basis that they were safer than the old ones, the Times piece states. However, it quotes Dr. Jeffrey Lieberman, chairman of Psychiatry at Columbia as saying: “Contentions that the new drugs are superior have been greatly exaggerated. Such assertions may have been encouraged by an overly expectant community of clinicians and patients eager to believe in the power of new medications.” And Robert Whitaker, a writer and critic of the new meds, adds: “They sold the story they're more safe when they aren't. They had to cover up the problems.”

Wait a minute. Neither of these criticisms are on the mark. The earlier schizophrenia drugs that began in use in the 1950s had terrible side effects that have never been matched in severity by the second generation drugs. Many patients suffered horribly from tardive dyskinesia, marked by a noticeable twisting of the tongue, or clenched hands, contorted face or repeated jerks of the head. Imagine a young man with these extraordinary features, caused by the drugs themselves, trying to appear normal to his girlfriend. Or imagine a young man wanting to hang out with his former high school buddies only to find he's being shunned because of his grimaces. Besides, the older drugs didn't always work; they just faded away sometimes leaving the patient dazed and out of control, and this happened more often than with more modern meds. Those are the real circumstances that young men and women on the older schizophrenia drugs faced. In fact, the new class of drugs mostly eliminates the twists and contortions that showed up previously. I believe even the doctors fail to recognize how crippling the earlier drugs were. (Roy Neville)

Schizophrenia? They call it behavioral health now

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)