NAMI Schenectady

NAMI Schenectady lunch meeting Feb. 13, 2012

2012-01-24T14:54:00.002-05:00

Hear ye! Hear ye! NAMI Schenectady holds its next monthly lunch meeting on Monday, Feb. 13 at Pinhead Susan's Restaurant, 38 N. Broadway, Schenectady, at noon. We've invited Dr. Heidi VanBellingham, medical director of the Ellis mental health clinic, as our speaker. We arrive just before noon; you can find us at tables reserved in the back room. Park in the lot across the street. Dr. Van Bellingham is one of the senior medical staff at the clinic, who has been the personal doctor for many of our adult family members. She also serves as the medical liaison to inmates diagnosed with a mental illness in the county jail. She can tell us how things are going for staff and patients at the clinic and PROS program at a time of considerable change caused by the state's Medicaid redesign and clinical rate restructuring. We'll also have time to hear updates on the Forensic task force, coming of Health Homes to Schenectady and other aspects of change. We need to also discuss our status as a chapter with respect to NAMI national's new standards of excellence and affiliation agreements. Please come; we order separately off the menu.

Also a reminder: Two relatives support groups continue to meetfor the families of someone with a mental illness. One is led by Kevin Moran inside Ellis Hospital every Wednesday night at 6 pm in classroom B-3. If you are new pls call Kevin beforehand on 243-4255. Park in the hospital garage and walk through the main hall to B wing elevators which take you to the third floor. See signs on the wall pointing to the classroom. The other support group is run by Frank Greco of the CDPC hospital staff and is scheduled every Monday night from 5:30 to 7 pm in a first floor meeting room at the CDPC Franklin St. Clinic, 426 Franklin St., Schenectady. Call ahead to check on meeting availability, 374-3403. There is also a DBSA--Depression, Bipolar Support Alliance meeting for mental health consumers who have either diagnosis, held every Thursday night at 7 pm, run by Celeste Trotz, 374-9753. Call her before you go if you are new to the group. Meetings are at Grace Lutheran Church, 1930 Hillside Ave., Niskayuna.

NAMI Holiday dinner party at Turf Tavern Dec. 15

2011-12-03T20:18:00.002-05:00

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

2011-11-13T23:58:00.004-05:00

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

2011-08-03T02:55:00.003-04:00

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

2011-04-29T03:52:00.005-04:00

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

2011-04-11T04:05:00.007-04:00

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

2011-04-10T05:35:00.002-04:00

(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

2010-11-05T03:34:00.001-04:00

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

2010-10-21T08:47:00.006-04:00

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

2010-10-21T07:40:00.006-04:00

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

2010-10-15T07:55:00.002-04:00

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

2010-10-15T07:44:00.004-04:00

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

2010-10-13T05:01:00.004-04:00

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

2010-10-13T02:06:00.003-04:00

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

2010-10-12T10:34:00.010-04:00

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

2010-08-20T08:06:00.003-04:00

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)

Why take a job?

2010-08-16T06:11:00.005-04:00

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)

Remembering AMI-NYS in the 1980s and 1990s—Part 2

2010-08-12T01:09:00.003-04:00

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)

Recollections about AMI NYS in the 1980s and 1990s--Part 1

2010-08-12T01:04:00.002-04:00

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)

ECT--Can't the consumers get over it?

2010-08-07T04:26:00.001-04:00

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)

Shyness, sadness, gambling, sex offenses--are they mental illnesses?

2010-08-02T06:58:00.002-04:00

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)

recovery in psychiatry--part 3

2010-07-22T04:53:00.003-04:00

What if a person has no goals?

People at the Collage social club and Ellis continuing day treatment center are being asked about their goals for recovery. It's one of the first questions and it's interwoven with asking them about their dreams, hopes and vision as they learn to get ready for the conversion of their programs to a new one called PROS, or personal recovery oriented services.

In it they'll be expected to work at these goals in individual and group settings with the help and support of others. The program isn't to get going till November. People have to enroll in one of the programs that Ellis Hospital will offer, probably at the continuing treatment site downtown, where classes, workshops, counseling sessions and social and recreational activities can be held.

Everybody is expected to have at least one goal and this ties them to enrollment in PROS. If you reach your goal you can drop out of the program or you can go on to achieve further goals, like education or developing skills you'd like to have, their mentors have told us at meetings.

But what if someone is unable to express any personal goals, has lost the spark to want to achieve something? It's another challenge, another way to look at recovery. You can't recover if you don't have any goals, can you?

There's a very good discussion of goals and how to draw someone out to learn to express them in an article in the July 16 Weekly Highlights on a new website called Recovery to Practice. A shorter version starts below. It's written by Larry Davidson, PhD, and Priscilla Ridgway, PhD, of Yale Department of Psychiatry. It rings true because we don't find our children or their friends in the system talking about goals. They've either given up or never were inspired to shoot for realistic goals. Why hasn't this been addressed before this?

(Davidson and Ridgway:) “This question is raised often by providers who are concerned that the people they work with have given up on whatever hopes, dreams, or aspirations they may have had earlier in life or who have been met with an initial blank stare or a shrug. The process of identifying and setting personal goals provides the foundation for recovery‐oriented practice, however. The question of whether or not people have such goals, therefore, is important.

“Restoring hope--Has this person perhaps become demoralized over time due to repetitive experiences of failures and losses that have been due to mental illness, stigma or discrimination, or a combination of both? Has the person lost hope as a result?

“It can be extremely difficult to have a mental illness, and extremely challenging to carry on one’s life in the face of it. It also may be hard to keep picking up the pieces time and time again when things fall apart, or to continue to believe that the future might be any better than a bleak or desperate present. The presence of a basic sense of hope is crucial to a person identifying any goals for the future. When hope has been lost, it can and must be restored as an essential basis for the person’s active engagement in recovery, and in the central role of identifying and pursuing personally meaningful goals.

“The restoration of hope can come about in a variety of ways, including through the activation of spirituality and faith, experiences of pleasure, and supportive and inspiring social relationships. When a person has lost hope and/or faith, it is crucial that other people continue to carry hope for that person until a time that he or she begins once again to believe that life can get better. Peer staff, who can provide tangible and credible evidence of the possibility of recovery, can be especially effective in instilling hope through their function as role models.

“Regaining interests--It is possible that through the combination of socialization and the lack of means to pursue their interests, people may lose any sense of what they might find interesting or enjoyable. In this case, helping the person to get back in touch with what interested him or her, or what he or she enjoyed, prior to becoming ill may be a useful place to begin the process of re‐igniting or” jump starting” his or her passion. There also is an array of tools, including interests and strengths assessments, that might help the person to recall those things that he or she had found pleasurable or meaningful in the past.

“Finally, there can be no substitute for actual life experience in re‐igniting, or eliciting for the first time, a person’s interest,” Davidson and Ridgway point out. “For some people, simply talking about participating in an activity is just as likely to raise anxiety and introduce doubts as it is to whet his or her appetite for involvement. Especially for people who have become accustomed to viewing life as if from a distance, as something that happens primarily to other people, it may require both encouraging and accompanying the person for him or her to feel comfortable trying new things."

The authors go on to discuss the possibility of co-occurring depression and achieving trust so the person is comfortable enough to share personal information. These and other useful insights are found on the website: http://www.dsgonline.com/rtp/resources.html. (Roy Neville)

Recovery in psychiatry--part 2

2010-07-22T00:24:00.005-04:00

Idealism and optimism at the heart of the recovery movement

The recovery movement in psychiatry is sweeping the day. The state commissioner of mental health calls for a transformation in services to grant mentally ill people a higher level of self-esteem, rights and independence. National policy making bodies like SAMHSA and the Center for Mental Health Services finally come on board with financing for recovery models. The consumer movement is elated off its rocking horse. The state, with little money of its own but a mandate to capture federal Medicaid money, swoops down on provider programs like the social club and continuing day treatment in Schenectady to force their conversion to PROS, which stands for personal recovery oriented services.

The idealists and dreamers are finding full expression in many areas of modern life--like health care, in psychology, how we spend money, in military planning. It's rubbed off in the mistakes they've made, in the false cheerfulness we see in the world around us. People want to buoy each other up when illness strikes a friend, saying things they don't believe, like “you'll get better soon.” They make foolish investments and buy houses without enough collateral to pay for them when the going gets tough. Businessmen, thinking the world has a rosy glow to it, have sunk us in wasteful practices with their easy deals and careless mortgage lending. They refused to face reality.

How do I know? From what I read, it's a matter of ideology. Americans are cheerful people, who think positively, but not often realistically when we have to be. We don't want to think the worst about anybody or anything. We're compulsively optimistic, it's ingrained in us by our culture to look on the bright side of everything. We can't do otherwise than tell sick people they'll get better soon, greet people we don't know with a smile, and try to make others feel better.

That's called positive thinking and where it goes wrong is in the excesses. Read Barbara Ehrenreich's book, “Bright Sided,” about the extravagant way our culture perceives happiness and a better life as an entitlement for all. She claims “the relentless promotion of positive thinking has undermined America.” She writes that in this idealistic age churches preach that you only have to want something to get it because God wants you to prosper. And when she went down with breast cancer recently, she was told she had to battle hard against it in order to join the hallowed body of survivors. A man suffering with prostate cancer was told it was God's will for him to get cancer whether he survived or not. For those not hopeful enough there is plenty of self-blame.

Some of this irrational exuberance naturally has come over to the recovery trends in mental health.

Remission, not recovery

Along the way, the people who promote the recovery movement in psychiatry have found a way to overcome the medical profession's negative thinking about mental patients. That feeling prevailed, according to the movement, as a staple view for some time, labeled the “clinicians illusion.” It was widely held that patients were doing poorly in between visits when they weren't seeing them. Instead, writes Larry Davidson, PhD, a Yale psychologist and lead author of the new website Recovery to Practice, “the evidence suggests that many people recover over time and that when people drop out of treatment,they often are doing better than we might have expected.”

In his Weekly Highlight column recently, Davidson tells how a workgroup of patients, caregivers and clinicians tackled this by introducing the concept of remission of symptoms. The work group decided that a sizable number of patients sustained periods of symptomatic relief and improved functioning, disrupted by episodes of recurrence or relapse. They called these “periods of remission.” Davidson says there is increasing recognition that such improvements are common.

Thus, the “clinician's illusion” has been turned upside down and given way to the concept of remission. If you're in remission you're part way to recovery. Remission means the worst symptoms have gone away and your functioning is better. But it's a long shot from being free of symptoms. There are still people out there with schizophrenia and bipolar who are on the streets and in shelters and in jail and prisons and repeatedly visit emergency rooms. They have periods of remission, too, but they're not moving ahead toward recovery.

Recovery would involve a more demanding and longer term phenomenon in which a person is relatively free of disease and has the ability to function in the community, Davidson writes. He believes that's possible for some people. He cites the Harding study in Vermont years ago as evidence that long- term hospitalized patients can “recover.” But these were older folks and they were moved to serene farm-like villages in the country. Would they have met a different fate in New York City?

I don't see full recovery for people with schizophrenia. I see them "in recovery" or "in remission". Of course, we want them to make it. I remember my friend at a NAMI national meeting years ago confessing that he and his wife felt they gained sensitivity and understanding in bringing up a mentally disabled child. “But I really do wish it was happening to someone else and not me,” he added. (Roy Neville)

Recovery in psychiatry--part 1

2010-07-21T02:48:00.004-04:00

The new mantra of recovery

So much we read nowadays in psychiatry has to do with the recovery model, moving away from doctors recommending disease treatments to asking patients what they want from treatment and discussing ways to meet those goals. It's turning the field of psychiatry topsy turvy.

Patient advocacy groups have been pushing this for a long time. The recovery focused movement has won the day, points out an article in Psychiatric News last November. The President's Freedom Commission on Mental Health endorsed the recovery approach back in 2003 when it called for a “fundamental transformation of the nation's approach to mental health care.” And there have been a spate of articles, conferences, speeches and webinars since then, some from the highest perches in the land in favor of converting to the new religion of recovery oriented services.

Now SAMHSA, the Substance Abuse and Mental Health Services Administration, has begun issuing guidelines, moving the educational concept of recovery more to specific instructions for psychiatrists to integrate recovery models into their practices. This training is going on now and is causing professionals to rethink entirely how they provide care, right down to what types of questions they need to ask patients.

The idea is to focus less on a remission of symptoms and more on helping patients overcome the effects of mental illness on their lives, the new gurus explain. This includes difficulties they have with employment, housing, and a lack of hope about their future. The new movement has both adherents and critics. It is behind the thrust in NY State to impose PROS (personal recovery oriented services) on existing networks of community outpatient clinics, day treatment and social club programs here and elsewhere.

What do they mean by recovery?

There's a debate about what anybody means by recovery—is it measurable and lasting? What's the evidence for that? Larry Davidson is a PhD psychologist from Yale who writes for a new website called Recovery to Practice. He addresses these problems quite admirably. In a column June 11 he writes how we have held out hope for a 'magic bullet' to make the illness go away and restore everything to normalcy. But instead, “What we have learned over the past couple of decades is that the truth lies somewhere else. Mental illnesses are not necessarily permanent but even the most evidence-based of practices in mental health are limited in their effectiveness.”

He points out that recent studies have shown that “newer psychiatric medicines are not that much better than the older ones and their side effects are still onerous. It remains the case that only 70% of people with a serious mental illness will derive any relief from these medications and the benefits are limited to only one domain of symptoms—primarily the so-called positive symptoms of hallucinations and delusions—having little to no impact on the more disabling aspects of the disease.” And as noted elsewhere, “treatments do not cure schizophrenia or fully ameliorate symptoms and problems for the majority of affected individuals.”

So where does recovery come in? Davidson tells us: “Recovery, as it turns out, has more to do with what the person with the illness does to contain and minimize the intrusions of the illness than with what professionals do to treat it. One thing people with serious mental illnesses can do is to take the medications prescribed for their condition by mental health professionals. But this is only one thing that they can do among many others, and most likely is not the most effective thing they can do, at least for those people for whom the medications are very limited in efficacy.
“Recovery also has to do with all of those other things people can do, and may need to do in addition to taking prescribed medications. Recovery also has to do with how people go about leading their lives in the presence of, or despite, serious mental illness.

Davidson makes a surprising assessment. He writes: “The most robust evidence base for interventions targeting serious mental illnesses are not for the traditional treatments of medication or psychotherapies that were aimed at eliminating the illness. On the contrary, what mattered most “were those interventions that supported people in participating in the community activities of their choice, in occupying normal adult roles, while they continue to have a mental illness.

This suggests to him that “the most effective breakthroughs in practice for people with serious mental illnesses since the introduction of chlorpromazine in the 1950s have not been in the development of new and better medications but in development of assertive community treatment and the related psychiatric rehabilitation practices of supported housing and supported employment. What these advances have taught us,” he says, “ is that it may be less difficult for people to figure out how to live with a mental illness than to be rid of it altogether. While the mental health field has had limited success in treating the illness, many people have themselves found ways to live with it and some to eventually recovery from it fully.”

These are persuasive arguments for the recovery theorists. They leave out some points. They still talk in generalities. We see our adult children doing well for some time and then suddenly, without notice, falling back into the throes of their disease, perhaps hospitalized, losing a job, pulling out of activities they enjoyed. There isn't any easy explanation—is the medicine not working or has his body worn off its effects? We should expect something like this, it happens with other diseases. But it keeps us on edge over a lifetime that true recovery in schizophrenia or major depression doesn't happen. Nobody gets a free bill of health without a lifetime of checkups and staying on the right medicines. And, we think, symptoms are more manageable with the aid of a steady counselor, trusting friend, supportive family and a good place to live. Those seem to be essentials whether you buy into the new recovery models or not. (Roy Neville)

Why PROS won‘t help people with schizophrenia

2010-06-06T16:34:00.006-04:00

Those left out of the state programs will be the outcasts

PROS is “a comprehensive recovery oriented program for individuals with severe and persistent mental illness,” the NYS Office of Mental Health’s guidelines state. “The goal is to integrate treatment, support and rehabilitation in a manner that facilitates the individual’s recovery.” Yep, the state’s agents claim that people with serious mental illness like schizophrenia are going to recover. If you conceive of recovery as holding your own with a government paid income, government provided housing and government health insurance, plus regular visits to doctors and counselors, and perhaps some friends and family around to help support you, and a pretty strong constitution to begin with, then you’ll see recovery.

They used to say the odds were 50-50 for recovery of any kind from schizophrenia, but they’re better now with better medicine and the awakening of consciousness that people can improve. And there are far more community mental health services available plus some housing for the same kinds of patients who didn’t do well in the old days. This is after more than 50 years of emptying out the state hospitals and 45 years since passage of the Community Mental Health Centers Act under President Kennedy.

PROS is a newcomer, although other counties were pushed into it by the state three or four years ago as demonstrations. It’s now beating at the door of the Ellis Hospital-run programs here--the psychosocial club and continuing day treatment center, which are to be consolidated downtown and made smaller, and the outpatient mental health clinic, which is said to face restructuring. That may hit here by end of summer, when the Ellis clinicians will be ordered to take on broader roles such as providing benefits counseling and drug-addiction counseling. Conversion of local community mental health programs and retraining of staff is going on all over NYS, driven almost entirely by the state’s ability to access 50 percent federal dollars for PROS under a Medicaid waiver known as the Rehabilitation option.

Rehabilitation is synonymous with PROS and that makes it easier to understand. For the first time psychosocial clubs like Ellis’s Collage, vocational support programs, on-site rehabilitation programs like Pie in the Sky Bakery, run by RSS in Albany, and Intensive Psychiatric Rehabilitation Treatment (IPRT) programs like the one we had on Van Vranken Avenue till two years ago will be required to convert to PROS, while continuing day treatment programs have the option of doing so. Ellis claims it can’t afford to keep the CDT running and so is ready to cash in the chips and turn it into a PROS to receive a higher payment rate from the state. The social club is a state-paid Community Support Services program that can’t continue under CSS and so the hospital plans to shorten it into an afternoon program, also part of PROS. That much has been revealed already to parents and consumers of services at local meetings in the past month. Many of those at the clubhouse are infuriated and are rallying to keep it open, even asking Ellis management to cover the modest costs of running it.

There are many problems with the changeover. A main one is that the state isn’t being candid about what happens to those who don’t fit into the new programs. PROS has some tight regulations for attendance and performance of those in its four main service components, known as community rehabilitation, intensive rehabilitation, ongoing rehabilitation and clinic restructuring, the latter an option. You’d think they’d be more imaginative when naming three of these efforts, which seem mostly overlapping. The point is that the state has a responsibility to all the people with serious mental illness, just as PROS wants to deal with, plus those with lesser versions of illness, such as personality disorders and milder forms of anxiety and depression. It’s true some of those folks, particularly if they’re young and otherwise healthy, can be treated successfully and live relatively normal lives going to work and raising a family. We know some people who do well despite their illness.

But there is a large number of people who do indeed have severe illness, as I wrote recently to top members of the state Office of Mental Health. I said I believe they will either drop out voluntarily or be disqualified. The state envoys have expressed a low regard for the day treatment and social club programs that they say haven’t rehabilitated anyone. But I feel it’s the nature of serious mental illness that is behind the lack of their advancement and slowness to recover. That is, illnesses like schizophrenia are very severe for each of these people, over a lifetime, and the odds are that most will not fit into a rigorous rehabilitation model. Some will--and we want to give them a chance to work harder at their own self-improvement.

For the others, they need a secure place to live and interact with others in the community, and that’s what community support services has done for them. And they won’t be rushed or coerced into something more than that. We are glad they are not in a hospital or a nursing home. We are saving a great deal of money through the community mental health systems. These people have lots of physical ailments, some are elderly, many are overweight, some are too sick to show up for appointments regularly. How are they going to fit the PROS model? That’s why I urged the leaders to reconsider the rules they are forcing on us in Schenectady and Albany and all over the state.

The state OMH News even ran an article in July 2009 quoting Commissioner Michael Hogan and pointing out: “People with schizophrenia often do not receive treatment until the disease is already well-established, with recurrent episodes of psychosis resulting in costly multiple hospitalizations and disabilities that can last for decades. People with the illness are over-represented on disability rolls, and among the homeless and imprisoned. Their unemployment rate is more than 70 perecent, and the lifetime suicide rate for people with the disease is over 10 percent. People with schizophrenia occupy approximately 25 percent of the nation’s hosptial beds.”

Now I ask you, how are those folks going to keep their place in the classrooms and counseling sessions that are in store for them? One of the PROS on Long Island has even signed up its clients for two years of job-oriented lessons and planning, with state agents expecting them all to graduate into a job after two years. It’s fanciful.

The article does cite the fact that a number of research projects have signaled that early intervention--combining medical treatment with consumer and family education, and emphasizing a transition to a productive adult life--holds great promise in reducing the disability that is associated with schizophrenia. But that may be limited to some of our more privileged members. And if the programs have no place for the outcasts, those with the most disabling illnesses and behavior, what kind of a public mental health system is the state office running? A lot of people are going to be left out and who takes care of them? And what about all those programs the providers have set up over the years--affirmative businesses and clubhouses and IPRT and enclaves in industry,for example, that have proven successful and now are being dumped by NY State. It hurts to see the state office dismantle the best programs we have in Schenectady and Albany, that have worked well for so many. They arose out of the dreams of their leaders and took years to fully develop.

We’ve learned over a lifetime that as the services close, more of the tragedies and emergencies involving people with mental and behavioral disorders appear. There’s bound to be more homelessness, suicide attempts and emergency room cases, men hanging around downtown and police pickups. With the state breathing on their necks, the counties have pushed the providers of the “softer” programs like day treatment and social clubs to knuckle under and convert to PROS. They are willing to close what they have--good programs and bad, and they’ve simply taken the money. It’s sad to see it happen, both for the providers and the families and consumers who attend the programs. The most vulnerable will get left out. An awful reminder that what services we have can be so easily taken away. (Roy Neville)

How to survive hip surgery at Ellis and learn to enjoy it

2010-05-27T03:16:00.002-04:00

(from the NAMI Schenectady newsletter, May-June 2010)
It's 8:40 am. They've had me in pre-op two hours already, taken my clothes and wallet and glasses and dressed me in a johnny shirt. Abruptly, someone grabs my bed and pushes me roughly into the hall, zigzagging along as I study the ceiling tiles flashing by overhead. They come to a plain door in the hall and it opens and they wheel me into bright lights. What a disappointing little room with a few scattered people flitting by and a few tables for apparatus. Imagine—this is the core of the hospital—the grand operating theatre, where people survive or die at the hands of skilled surgeons while nurses watch the blips of electronic machines and liquids in translucent bags flow silently into the body to keep vital life signs going. Like we see on the hospital shows on TV. The eerie aura of life and death hanging in the balance is in there and it's unsettling unless you put it out of mind and take as comfort that you are in the hands of the best people we have,the best trained, the best team, the latest equipment. I say to myself: Brother, I trust. I feel special in the center of the room. They've whisked me out of my bed onto a narrow bench or table. I could almost fall off of this it's so small. Is that the best they can do? I thought. They whisper hello. I think it's the anesthetist who now greets me. They're assuming positions around me. He clamps a plastic mask over my nose and mouth, lifts it off and says, you'll be out in a few seconds. I'm not out right then, but the mask comes down again and I'm off in dreamland.

Next—it seemed an eternity later--I woke up in post-op, with a head full of cuddly dreams and imaginings of stars and moons. How are you feeling? Someone asked, the same question I would receive umpteen times a day from now on. I felt like I'd been away a long time. They took me by gurney to my room on A-3, post-surgery and somehow slipped me into my bed where I slept for hours. Then hospital life begins: the first night or two they wake you just about every hour to take vital signs--blood pressure, pulse, and temperature (the last is done by machine with a swipe of your forehead—no more thermometer under the tongue. Someone from the hospital lab comes in at 5 or 6 am to wake you and draw your blood, every day. The nurses and student nurses who crowded into my room ask me questions and have to write everything down. They check my dressing. My hip surgery went well—the incision is clean and untroubled with a cross hatching of dark staples down its length, like repair after a shark's bite. The housekeeper even woke me at 6 one morning to introduce herself. The day nurses streamed in and out, 18 or 20 separate visits the first day, inquiring, soothing, wordlessly doing their chores. They push a console with a laptop computer on it and spend awhile pushing the screen to record my vital signs and assess my condition. Out in the hall they're doing more of that, nurses studying their computer screens and punching keys. That's modern nursing.

My bed is wide and comfortable and above my head is a line of switches for them to turn lights on or off. They can elevate or lower my bed's upper half. I have a phone to order my meals and a remote control for the thin-screen high-def tv on the wall. This must be the queen suite in Ellis Hospital, armed to the teeth with modern technology. I'm hooked up to an intravenous line with a fluid bag hanging overhead on a metal tree with an electronic contraption blinking out red or green numbers on its face. Then there's the pump. It's ingenious, a small plastic grip with a button on it in bed alongside your hip which you press whenever you feel pain. Well, every body knows after getting part of you removed you're going to feel pain and so you push that pump pretty darn often. The line from the pump goes up to an overhead bag with liquid dilaudid, an opiate narcotic that Ellis chooses to use as its main pain mollifier, in place of pills and other injections that have been used in the past. Imagine—no pills, just push the pump and feel instant relief. It invites odious comparisons with the appeal for instant gratification that junkies must feel with their drugs on the outside. This is more humane, of course, to comfort us, to let us know our every tremor and ache can nevertheless bring peace of mind. (Oh, to have the drug maker's contract with hospitals that issue this magical drug.)

As the days grow and I begin to feel less pain and more like a human being, they talk of discharging me, first to Sunnyview and then home. But there's a catch—my MVP Gold insurance doesn't cover rehab at Sunnyview for some reason so they cant get me in there even though the head discharge nurse says, we're going to take you down there Saturday morning and roll you through the gates. They were stopped before they started. So Ellis goofed here, they suggested I go home only three days after my surgery and that wouldn't work. Why should someone at home do the rehab and close care that's needed so soon after? Rehab is part of the process of getting better—daily exercise and attention to each step of the way. And you don't dump people back home right away. The compromise,which suited me, was to have a home-duty visiting nurse-physical therapist come to our house several times after I finally left the hospital after the weekend. She put me through my paces and this worked well, thanks to Visiting Nurse Service (bless them for what they do).

Now, it's much later when I write this, three weeks after the big event. I can sit up and type on the computer and answer the phone, even with the last of the aches and pains coming from my rump. Oh, still I long for the pleasures of the Ellis pump, the assurance it gave each of us, the lofty, dreamy feelings it created. I remember I couldn't read the first few days in hospital while taking that stuff. My mind wouldn't concentrate, my eyes wouldn't focus on the page, they ran off to other lines of text. I thought it was me but it was the drug. Anyway, if you're thinking of surgery at Ellis, you'll have the chance to enter dreamland like I did and you'll make it through, thanks to the pump. (Roy Neville, April 30)

Why hospital care costs so much--the expansion of medical records

2010-05-27T03:06:00.003-04:00

It's always been the business of doctors, nurses and health care givers of all kinds in hospitals, nursing homes, doctors offices, clinics and the like to keep close and detailed patient records. Depending on the circumstances these range from a folder your doctor keeps that contain his handwritten notes about your complaints and condition, test results, his analysis or assessment, treatment recommendations and prescriptions ordered. If you're hospitalized you might have a more detailed health history taken, plus data sheets and charts, progress notes of those taking care of you, results of lab tests and the analysis and diagnoses of various practitioners who have had a whack at you. That's my guess. It's simply taken as truth that the doctors and clinics and other health care practitioners who take responsibility for your care will review these records and rely on them when they next evaluate you. And they will plan for your continued care and what role others might play, on the basis of what is written down in your records.

As sensible and eternal as this system has been for everybody serving in an office or clinic or hospital, modern corporate medicine has made big changes in medical record keeping in the last decade. The changeover to electronic records is still going on, with ever more complex and extensive kinds of data gathering and analysis required. This creates an amazing burden on nurses (as well as the Ellis mental health clinicians downtown) who are the primary record keepers. I've recently witnessed the fact that nurses spend more than half of their time on the orthopedic floor at Ellis at their computer workstations in the patient's room and out in the hall. They're not talking to the patient, or observing or doing treatments or giving out medicine, which are the things that nurses do.

They take vital signs (blood pressure, pulse and temperature) at your bedside in seconds, then retreat to their consoles to record everything that the computer program calls for including such inanities, I'm told, as whether the bed rails are up or down. And I suppose, they assess whether you look bright this morning, if you're eating and sleeping and have had a proper bowel movement. And they will do this type reporting over and over, filling in boxes on the computer screen using different codes and shorthand that some computer whiz has designed for them.
It's enough to make nurses turn away from the profession. The student nurses I had at my bedside during my recent recovery from hip surgery at Ellis in April said they spent several hours a day at their computer. One said they had to assess what my condition meant, not just the physical signs. That means using their imagination. It's done so that supervisors can see what they've done, every shift, every day.

Do they want to do this? Not at all. They told me they disliked it, it kept them away from direct patient care and their reason for becoming a nurse. They were asked to put down far more detail than needed. My professional home-care physical therapist said when she went into nursing 27 years ago she did it to be close to patients, to make a difference in their recovery. Now she works on a laptop in my house for part of her time with me and spends more time on it at night—all to satisfy federal rules for her position.

Why do they do it? The nurse said it's required by federal Medicare regulations. That governs Medicaid and private insurance companies as well. The hospital has to do it to be reimbursed. They also do it because the hospital wants to be protected in the event of lawsuits over the treatment someone has received or a medical malpractice claim, for instance. That's why we knuckle under to these outrageous claims on the time and energy of our doctors and nurses.

While electronic records are touted as cost-saving, critics say this is not demonstratedly so. Instead, the price tag to switch over to these systems has cost hospitals and the public millions of dollars. There's an extreme concern in the hospital about sharing and safeguarding the extensive system of electronic records, which adds to cost. They must protect both patient and physician confidentiality under federal and state laws. So the sharing and access is likely missing. The visiting nurse's computer record on me cant be shared with my surgeon, who ordered her care, nor the hospital, both of which have systems incompatible with hers. And time spent at the computer console is certainly a consideration. Nurses can't be assigned more patients than now, just as the Ellis mental health clinicians can't take on more patients, leading to the backlog in appointments the past few years.

While computerized records are all the rage, and have clear benefits for storage and versatility of use over the handwritten ones, hospitals and clinics and doctors offices still must rely on longhand notes for many applications. For one thing, it's simpler to write down what the patient says when face to face. These are the customary progress notes and charting that nurses are trained to do. Why should they recapitulate the record on a computer screen? For whom are the records kept, after all, if not the immediate patient? Instead, the computer records seem destined for data banks that serve the institutional purposes of regulators and insurance companies and research entities. I don't think my hospital records have much value to anyone else, except for somebody's studies and we shouldn't have to pay for that.

By the way, NY State is about to implement a multi-million dollar computer network to store and manage our medical records, called eHealth. It's like a data bank for each of us so doctors and other care providers can access information about us when we need them to. The information would come from hospitals, physicians, pharmacies, clinical labs, health insurers, and the Medicaid program. It can pave the way for safer, more convenient health care,say the people touting eHealth. It will tell others if we've changed doctors, seen a specialist, visited a clinic, or checked into a hospital and much more. I call it invasive and super-expensive, not needed or wanted. The state will receive federal surplus money through ARRA, the Recovery and Reinvestment Act to pay for it. It's also called SHIN-NY and you'll be hearing about it soon, as
hospital costs keep rising, and you wonder why. (Roy Neville)

DSM-V: Part 2--What's a brain disorder?

2010-02-09T03:29:00.007-05:00

Should it be what the DSM says it is?

The Diagnostic and Statistical Manual of Mental Disorders (DSM) has been coming out since 1952 and has changed dramatically since then. “Human nature has not metamorphosed but each DSM has included more disorders than the last,” writes Frederick Crews in NY Review of Books (Dec.6, 2007). By the fourth edition in 1994, (which some of us were fed on like mothers' milk), there were over 350 disorders listed, “marked by dubious symptoms such as feeling low, worrying, bearing grudges, and smoking.” Those items were put in checklists so that “in Bingo style, for example, a patient who fits five out of the nine listed criteria for depression is tagged with the disorder.”

Christopher Lane, a literary critic and not a psychiatrist, who follows the Freudian line (and hated that the third edition abolished the neuroses), opposes the attempt in these volumes to categorize disorders according to their “detectable traits”. He writes that the DSM has ended “almost a century of psychoanalytic thought and (is) thus a reversion to Victorian psychiatry.” (I think he means in Victorian England these disorders were thought to be morally corrupting and curable, and so they put people away, which led to the way mentally ill people were treated in our country until the 1960s and '70s.)

What is a mental disorder? Well, here's the way the current manual, the DSM-IV-TR, puts it: “While this is a classification of mental disorders, no definition adequately specifies precise boundaries for the concept of a mental disorder. (They) have been defined by a variety of concepts, e.g., distress, dysfunction, dyscontrol, disadvantage, disability, inflexibility, irrationality, syndrome pattern, etiology and statistical deviation. Each is a useful indicator but none is equivalent to the concept and different situations call for different definitions.

“The DSM-IV uses categories to divide mental disorders into types based on criteria sets with defining features,” it continues. “That's the traditional method of organizing. (But) there is no assumption that each category of a mental disorder is a discrete entity with boundaries dividing it from other mental disorders. There is also no assumption that all individuals having the same disorder are alike in all important ways.”

With this much leeway to go on, no wonder the critics are having a field day. As one writer points out, “the rapid pace of pharmaceutical innovation has resulted in a corresponding need for the discovery of new diseases as well. As long as the drug industry continues to develop new products, the American Psychiatric Association guarantees a steady supply of new diseases requiring treatment.” And these find their way into the DSM. There are “diseases and subcategories, co-morbidities, prodromal forms of combined clinical subtypes, shadow syndromes and the like. ..(also) the catch-all category known as Not Otherwise Specified, or NOS, which is applied whenever the symptoms of any given mental disorder do not meet the criteria of any specific disorder within that category.” (bonkersinstitute.org)

Every new disorder is supposed to meet a host of criteria before being accepted into the manual. But transparency is a big issue and “behind the dispute is the question of whether the vague, open-ended terms being discussed even come close to describing real psychiatric disorders,” writes Lane in the Los Angeles Times. One of the past consultants to the DSM, he says, has revealed that editorial meetings over changes “were often chaotic. There was very little systematic research.” And the main author of the previous volume, Robert Spitzer, said he's against science by committee because of the willy-nilly way that psychiatrists have defined dozens of disorders in the past.

There is suspicion, too, that industry profit motives are bound to influence what goes into the DSM. Lane's book, “Shyness,” exposes efforts of the big drug companies to have shy people view themselves as mentally ill. He cites “the manipulations that promoted social anxiety disorder to a national emergency,” created by Madison Avenue and Big Pharma that have led to billions in profits for the companies. An ad for Zoloft in the American Journal of Psychiatry, August 2003, for instance, shows a woman with downcast eyes and asks: Is she just shy? Or does she have social anxiety disorder?

Sadness is another trait that is focused on. In “The Loss of Sadness,” Allan Horwitz and Jerome Wakefield comment on the fact that depression is now declared epidemic around the world by the World Health Organization. “Those judgments rest on failure to distinguish between major depression, indeed devastating to its sufferers, and lesser episodes of sadness, they argue. “Episodic sadness has always been a socially approved means of adjusting to misfortune and much is lost, both medically and culturally, when it is misread as a depressive disorder.”

The book implies that nearly every non-psychiatric complaint is subject to over-diagnosis unless contextual factors—familial, cultural, relational, financial—are weighed in the balance.” The authors beg the compilers of DSM-V to inquire into each patient's circumstances before concluding that they are faced with a bona fide disorder. But as author Crews points out, the DSM's inability to separate “vague discontents from real maladies” serves the profit making purposes of the medical profession and isn't likely to be changed. (Roy Neville)

From Sad to Mad—the new DSM-V is to be issued in 2012

2010-02-09T03:25:00.005-05:00

Part 1--Mystery surrounds picking the diagnoses to be included

The bible of the psychiatric world, the Diagnostic and Statistical Manual of Mental Disorders, produced by the American Psychiatric Association, is being rewritten to produce a new version in 2012, a dozen years since the last revision known as the DSM-IV-TR. A draft was issued Feb. 10 to show the world some new diagnoses, like temper dysregulation, and for the first time it calls for binge eating and gambling to be considered disorders.

The fifth revision of this masterful document, which is routinely used by mental health professionals when treating patients and helps insurance companies decide what disorders to cover, serves as well as for clinicians, courts, prisons, drug companies and agencies that regulate drugs. Countries all over the world treat the DSM as gospel, so even minor changes and additions will have powerful ripple effects on mental health diagnoses around the world, notes Christopher Lane writing in the Los Angeles Times (Nov. 16, 2008).

As patients and their families know, a doctor, clinician or other practitioner had better line up treatment that is consistent with one or more of the codes for the individual disorders listed in the diagnostic manual. That's so Medicaid, Medicare or other insurance or NYS-subsidized mental health services, which have their own lists of codes (these may correlate directly to the DSM) can determine which get reimbursed and which do not. These decisions become major issues for community mental health providers in housing, rehabilitation, social and vocational programs, as well as clinics, hospitals and emergency facilities. Some services are declared non-medical or unauthorized for the patient's circumstances and won't be reimbursed.

There are several themes here: (1) how the authors of the new volume deal with the increasing clutter of diagnoses and how they separate them into definable diseases or various non-disease conditions; (2) the secrecy felt to be needed by the authors in researching and analyzing these disorders to avoid bias and lend scientific reliability to the DSM's goals; and (3) whether the ever-expanding numbers of disease categories reflect the pressures of doctors, the medical products industry and drug companies to make bigger profits from the over-diagnosis of these disorders.

In press releases Feb. 10 the draft document is said to leave out obesity as a formal diagnosis, internet addiction or sex addiction, as some have proposed. A bone of contention in the new document is that the checklists of symptoms a patient needs to have to add up to a disorder will be replaced with a scale of severity for every disorder. The experts at the APA say the checklists don't really capture how mental disorders work in the real world.

The DSM is like a cookbook of recipes. For example, in diagnosing major depression, doctors use a checklist of nine symptoms. Patients who meet five out of nine criteria can be said to have major depression. Under the newly proposed system, the severity of the symptoms a patient has would be factored into the diagnosis. The DSM isn't about treatments, unlike the PDR (Physicians Desk Reference) created by the industry for prescription drugs and used as guidelines for treatment.

Discussion of what goes in the manual already has drawn hot reaction from critics and supporters in articles and a book or two over the way the DSM-IV treats the huge array of illnesses and common emotional attitudes like shyness and sadness. Scientists are battling over whether the next revision should be done openly so mental health professionals and the public can follow along, or whether the debate should be held in secret.

As the Lane article puts it, “hanging in the balance is whether, three years from now a set of questionable behaviors with names such as apathy disorder, parental alienation syndrome, premenstrual dysphoric disorder, compulsive buying disorder, internet addiction and relational disorder will be considered full-fledged psychiatric illnesses.” It may sound like an insignificant spat, he remarks, “but the debates have far-reaching consequences. To large numbers of experts, apathy, compulsive shopping and parental alienation are symptoms of psychological conflict rather than full scale mental illnesses.” (Roy Neville)

Mentally ill prisoners moving into new residential housing

2010-02-01T15:18:00.011-05:00

State Office of Mental Health in a blustery press release says a “first of the nation” residential mental health unit has opened at Marcy Correctional Facility in Oneida County, the result of a 2007 court settlement which forced the state to move mentally ill inmates out of the SHUs (special housing units).
The program, developed by the state Office of Mental Health with the Corrections Department, began taking the first of about 100 inmates in December from various prisons around the state who reside in or are candidates for the notorious special housing (the box, or solitary confinement) and have serious mental illness. The advocacy law firm that won the case against NY state is proud of achieving reform, as are supporters, considering the state has spent almost three years and over $50 million to set it up.

The state was forced to budget $57 million to convert one of its two-story cell blocks at Marcy to the new facility after an out of court settlement in 2007 with Disability Advocates, Inc. of Albany and its law partners. The not for profit law firm, which has won other high-profile lawsuits against the state, claimed that prisoners were put in solitary confinement or lockdown in their own cells because of infractions that were often brought about by their mental illness, not unruly behavior from other causes.

It also charged that disproportionate numbers of mentally ill inmates have been placed in special housing and have spent longer terms there, some for years. This is discriminatory and abusive. Special housing units in NY State prisons consist of locked steel boxes or cages with no amenities where the inmate is locked in for 23 of every 24 hours, given one hour of recreation. The practice, which NYS prisons feature, has brought outcries from families, including those in a prisoners' rights group called MHASC (mental health alternatives to solitary confinement). This group calls the confining boxes torture chambers and has pushed for a SHU bill in the legislature for years to end special housing in prison for the mentally ill altogether. The SHU bill asks the state to review inmates' disciplinary sentences, including those with the most difficult to treat symptoms, in order to remove them from solitary confinement.

Freed from a cell up to four hours a day

According to the state's release, the new facility will replace solitary and offer three or four hours a day for treatment and recreation. When the agreement was announced in April 2007, Cliff Zucker, executive director for Disability Advocates, said “It's going to make a tremendous difference. There are people with serious mental illness who are very, very ill in SHU receiving little treatment and many of those people are discharged directly from those solitary confinement cells to the street.”

MHASC has written that the settlement would make conditions better for mentally ill inmates but improvements were still needed. Keeping people with psychiatric disabilities in isolation units amounts to torture and often exacerbates their illness, they said. They cited cases in which inmates have taken their own lives under those conditions and put the safety of correction officers and others at risk, according to the NY Times (April 23, 2007).

The court agreement came at a time when the legislature, led by Jeff Aubrey in the Assembly and Mike Nozzolio in the Senate, was struggling to pass identical bills that would outlaw putting mentally ill inmates in the special housing. Those bills would set up the residence program and add staff from mental health and corrections to manage these inmates. They also called for more training and an oversight commission to look into abuses of the mentally ill in prison. The bills finally passed, to be implemented in 2011. Then Governor Eliot Spitzer cut back on some provisions and moved to delay its start till 2014. Advocates argued successfully to restore 2011 for startup last summer.

State officials are crowing

Now for the latest release. It says the new facility has opened and “participants will have the opportunity to develop skills that address their individual needs, with at least four hours a day of out of cell treatment and programming, primarily in open group settings. Congregate exercise will be allowed for inmates who have demonstrated treatment progress.” It says earlier steps have included screening on admission for all inmates, a wide array of treatment programs and special attention to aftercare when they're released (per OMH Commissioner Michael Hogan).

But a lawyer at Disability Advocates has some questions in the early going. She said while many prisoners are designated as having serious mental illness, not all have been designated with serious mental illness who should be. The big goal is the quality of the program, she pointed out, and people should be assessed so they have this program if needed. Some of those have BHUs, behavioral health units, for the men where they already get four hours a day out of the cell in the later phases., but the program has not been a success, with few inmates graduating and now it has a very low enrollment. The RMHU (residential mental health unit) will need to be different. Corrections officers will have to be well trained and stay with the program, she added.

The mentally ill shouldn't be in there at all

It's the remorseless tone of the state press release that gets you down. They don't admit to any wrong. They think the world should reward them for what they've done to help. Sure, the settlement is a triumph for the law firm in Albany, the families and the men themselves. But look at this: Here are men who are very sick, who may well have been jailed because of what their mental illness caused, not their being criminals with prior records. They've been pushed around by a hide-bound prison system that rewards order and discipline and punishes slowness to react and follow directions. Some can't adjust to those conditions. If they are stuck in solitary, their illness gets worse in these tiny cells and causes them to become more disruptive than before. That in turn, lengthens their sentence in the SHU.

The court agreed that these men are being abused and maltreated because of their mental illness. But in its first resounding statement to mark the opening of its “new Jerusalem” facility, NY State goes on record as saying the new program “builds on 15 years of enhanced services for inmates with mental illness.” The state fails to accept that tens of thousands of mentally ill prisoners—fathers and sons and husbands, people we know, have been thrust into these awful cells. And they all have to come out of there some day. Instead, the state boasts about how good it will be for some of them, up to 100 at a time, to get three or four hours out of a cell each day instead of one hour.

The press release calls this “the most comprehensive and complex mental health prison treatment program developed in the US in the past 20 years.” One might add that only in New York, with its regressive prison mentality toward the mentally ill do they need such a momentous change of policy. They've spent millions of dollars of taxpayer money on the new prison blocks with their uncompromising rows of steel cells. The prison unions seem to have gotten what they want out of this: more than $50 million in new construction, hiring a considerable number of additional security guards and special training for the guards and their supervisors to manage things in the new residence units. The press release says this would be one-week training, which won't go very far unless the men are well motivated.

What they're doing is still a long way from what is needed. Someone mentally sick and disruptive should get help through the Kendra's Law program and alternative treatment courts before they have to go to jail or prison. They need to hook up with medical treatment and services in the community, and someone should be held responsible to see they stay on medicine. If they can't make it they need to be placed in temporary hospital custody where treatment is at hand, as many times as necessary; not put in the unholy places our prisons have become. (Roy Neville)

When can a mental health housing provider remove a mentally ill person from his or her apartment?

2010-01-30T09:01:00.003-05:00

Under what circumstances might a housing provider for people with mental illness in this area remove a resident from a group home or apartment? And in what cases may a housing sponsor refuse someone with mental illness who has applied and waited his or her turn for an available bed? Answers are a bit elusive while the questions get more important now. The state Office of Mental Illness has scaled back its annual contract awards to the counties for apartment and group home beds in the severe economic environment we have. The implication is that the state is pressuring the housing agencies to move people along faster from the more heavily serviced end of the spectrum of publicly subsidized beds to those with less support or to beds with no support at all. And there is evidence for this happening here.

Also, in the group homes and apartments run by mental health housing providers today there are more seriously mentally ill than before and those with a variety of co-existing medical and behavioral conditions. The state is known to pressure the housing providers to take in more patients from this mix, including the worst off, rather than have them sent to nursing homes or special care facilities which are more costly. So issues are sure to come to the forefront in the agencies about accepting someone with greater health complications for placement or not, and whether a resident is entitled to stay on with the agency once a complicating condition is noticed or aggravated.

The two main suppliers of apartments and group home beds in this county are Mohawk Opportunities and Rehabilitation Support Services (Schenectady YMCA has state subsidized beds but it primarily serves a broader clientele). Word has leaked out from families that here and there are examples where group home and apartment dwellers have been asked to move along the line or even out of the apartment system altogether. There might be several reasons for this, for example, the person's social and rehabilitation goals no longer fit the program at the level he is in with the housing sponsor. So he can logically be switched to another apartment giving him more independence, even if he isn't ready to move.

What are tenant rights in this regard? First, it's clear those who reside in the subsidized apartments have the same protections granted to all tenants under landlord-tenant laws in NY State. That means that tenants have due process—the tenant has to be notified of the charges against him ahead of a hearing in court, and can only be evicted for non payment of rent or behaviors that have led to complaints and would let a judge find good cause for removal, or for some other rules that favor landlords' regaining possession of their property.

And for the mentally ill specifically, here are rules in Section 595.9 of the state Office of Mental Health regulations: “A discharge planning process shall include, at a minimum, the following: (1) involvement of the resident, program staff, other community service providers, and collaterals as appropriate and agreed to by the resident; (2) clinical assessment of the resident's psychiatric status as well as his rehabilitation, physical, social and residential needs and goals, which is conducted by clinical staff. (3) p rovision to the resident of options. (4) referrals to appropriate community service and residential providers and (5) arrangements for appointments with service and residential providers.” It also says that to be “discharge-ready,” “the resident is willing to relocate to such housing.”

Furthermore there are the policy guidelines of the housing sponsors themselves. One of the agencies has these rules: “Decisions to discharge are based upon an individual's needs and circumstances. Discharges from the program are planned to correspond with an individual's achievement of rehabilitation goals....every effort is made to fully involve the individual, other service providers and his or her family in implementing a positive, planned discharge from the program.

“A written discharge summary/service plan is completed for every individual leaving the program. (It) indicates the circumstances surrounding discharge, summarizes progress in key areas, lists participants in the plan and includes services arranged and follow-up contacts. The guidelines also state, “when an individual satisfactorily demonstrates abilities in such areas as medication and symptom management, money management, personal hygiene, performing household chores, shopping, preparing meals, maintaining an adequate diet, etc., discharge is encouraged.”

With these safeguards would come the right to legal defense from attorneys at the Mental Hygiene Legal Service, part of the state Appellate Division court system.

Nevertheless, these rules don't make clear whether an agency can refuse to admit someone or remove a person who has a complex medical condition or behavioral problem or physical limitations. Many people living in the group homes have these special circumstances. Others have been asked to leave if they are using drugs or alcohol in the building, for instance, or if they are violent and pose a safety hazard to anybody else. It's the same with the broader population in the city--housing for the mentally ill doesn't seem different from group housing for drug dependent people or youth with problems or men and women living at the YMCA and YWCA.

Among the complicating conditions, the providers report that they are asked to take patients upon discharge from a hospital who are incontinent, and some of these people do reside in the homes. Are they entitled to refuse these patients from admission to a group home? There are residents with the HIV-AIDS virus. A staffer has suggested there is no reason for the other residents to fear having any of them as housemates. More objections might be posed to admitting someone with a criminal background because there have been occasions of reported theft of belongings or credit cards and misuse of the phone, for example. A parent insists the providers have to be more alert to this, given the vulnerability of these residents. There are also residents who cause accidents that might result in harm to themselves or others and endanger the facilities.

In each of these cases it would seem to depend on individual circumstances whether to admit someone or allow him to stay on. It should be up to the housing agency to decide if staff has the capability to manage patients with these complications, and not be forced by the state to accept patients otherwise. At the same time it is up to the agencies to show responsibility to admit patients waiting discharge from Ellis Hospital when they have a bed and reasonable ability to provide care for them. It would certainly save on the cost of care. (Roy Neville)

Why should parents let their adult children go?

2010-01-22T04:23:00.001-05:00

Part 2

Social workers (not Kevin Moran, our counselor at the Ellis Hospital support group) have at times accused the parents of coddling a son or daughter who has a serious mental illness or of abetting their bad behavior. That's because we lean over backwards to help them and sometimes lean too far. Now look at the examples we have of the difficulties parents face. (I've heard them interminably at our support group meetings.) And you'll see why we have to persist as not only the main source of their support but as advocates who justly seek more for them.

The question is whether parents try to do too much for this bunch of sometimes disorderly citizens, our mentally ill children, who live on the verge of society. Or whether we are right to do all we can, and in fact, should fight much harder on their behalf. After all, they are very sick at times and their conditions are so variable and present such complexities for treatment, we can't expect the mental health system to meet all their needs, or ours. But if we don't press harder, who is going to do it for them?

Listen to the stories of parents who come to the support group and you'll see that all is not right with services and benefit programs. They make the case that we ought to scream much louder to get people access to housing and clinic and into a bed if that's what is needed. Families want to help but can't because of bureaucratic rules and backlogs and the usual hangups of lack of staff or money. But the people in charge have no excuse when someone is truly sick and needs services now—not at the end of the line.

The government based mental health system defies logic and is blocked up needlessly. The mental health clinics in these counties are badly backed up, doctors are few and some are foreign speaking who may not fully understand our culture; children's services are weaker than adult services, with much less to offer. As an adult you must wait longer than necessary for the available apartments, SRO and group residence beds. You will meet obstacles applying for and getting approved for social services emergency benefits in this county, social security, Medicaid or Medicare, housing of all types, service visits to the home, children's services, transition services for teenagers moving into the adult system, drug and alcohol services—all in the mental health arena. Tragically, the jail is the only place where mentally ill people don't wait to get in and get a little attention.

Here are more complaints: social workers at the clinic do not mesh well with housing people and jobs people and continuing treatment and the alcohol counselors—some say, in order to hold onto their clients. They are mostly trained to do talk therapy and it won't do the trick for seriously ill people. The system has waiting lists and waiting lines, single points of entry that slow the process, rules that forbid someone on Medicaid from receiving two or more of the same kind of services at the same time, much too much paperwork for hospital and outpatient staff, big clogs in the hospital emergency room and psychiatric crisis service. In short, what parents say is that the system is muddled up, particularly to the new and uninitiated. It is as full of potholes as a late winter day in Schenectady. You have applications and approvals, confirmations and certifications, appeals and denials—enough to make many of us give up. It's why we have to go front for our loved ones more aggressively than before.

One of the parents in the circle has a son who takes off for NY City—he has no money, no friends there, just on his own. They get a call from him at a shelter. It's a different shelter this time. Is he safe? It can't be good. Someone's going to line up a job, he says. They will wire money That's what they live with, the anxiety of receiving the next phone call.

Another mother reports her son lived in his truck for much of the year, sponging off the parents, after he was hospitalized and then refused to take meds. He won't go in for treatment, he lost his job and broke up with his girlfriend. He doesn't speak civilly to his parents. Mom finally enrolled him in Medicaid. She's worried, forlornly searches for help.

And there's a couple with a daughter in her early 20s who repeatedly gets in trouble with the law, is in and out of hospitals, arrested and jailed in different counties. Her mother says she's cute as a pin. What's to become of her? I'll tell you what. It's more heart rending than most counselors or outsiders can imagine. The parents had nearly given up. Their lives were in turmoil with their daughter in and out of scrapes until they had a change of heart. If she wouldn't take their advice, they wouldn't let her back in the house. That was the game plan. But this is a young woman with all kinds of ambition and talent—she's held jobs and graduated college and no one gives up on someone so promising, yet so absorbed in her sickness and addiction.

So a few months ago she asked to come back once again, contritely, and her mother accepted. It lasted only a few weeks before her daughter absconded with a boyfriend, someone they disapprove of. They love the girl, like we all love our children. Their defense is like that of many of us, a kind of tough love, dealing with the unexpected and every possible disappointment. Nobody said it was going to be easy.

We don't give up on our children, even over a lifetime, but we won't try to fix their ways any more. Usually medicine and treatment can hold things even. If he or she is non-compliant, we must wait till they've faced enough of the pain and the tough life of going it alone. Then maybe he or she will come in to the clinic on their own. We'll be there for them. (Roy Neville)

Why can't parents let their adult children go?

2010-01-22T03:53:00.004-05:00

part 1

We get a lesson often on Wednesday night from our leader at the support group who says parents have to let their mentally ill adult child go, to let him find his own way with his illness. We must give him the freedom to make his own decisions about his life and eventually gain understanding of his illness. That is the message.

Don't try to change your son's counselor at the clinic because he's not getting along. Don't listen to his tales of woe and boredom. Don't loan him the money and don't bail him out (just hypotheticals, the last didn't come up at the meeting)

We are told we can't fix what he is going through. He will have to go it alone, and if he wont take medicine or see a doctor or act in the ways we expect at home or out in public, we must let him suffer. That is, he will find that he is sicker and sadder without following the routes to treatment someone suggests for him. He will lose the support of friends and family, become more isolated, more miserable, full of anger and frustration. We see it happening with our young people and we want to do something to help. It's natural and it's what parents do. But is it right to keep on worrying, to feel we, too, share the sickness in the family and are somewhat blameful?

Absolutely not, the counselor tells us. We should have gotten over the blame game by now, even newcomers to the support group who haven't heard all the explanations. Families can't let themselves feel guilt over a child's mental illness—it's a no-fault brain disease with links both to heredity and one's environment. We understand that. But when we hear it we bite our tongues. We are usually the closest to the child, who seems still a child, now an adult on his or her own, shrouded in the veils of an illness like schizophrenia or bipolar disorder or deep depression. We know by intuition how painful this must be and how hard they must struggle to free themselves, to face the uncertainties of adult life with such a handicap. We feel an intense urge to steer the young person out of it.

It's a fine line to cross. On the one hand we don't want to abet their bad behavior, their sleeping all day or alternatively, staying out all night. We can't make them change no matter how much we want it to happen. Even the doctors know you can't make them take medicine they wont take. The question is: Do we ever abandon our children? What would we do if our child was diabetic or epileptic or had a severe learning disorder, for example?

Our counselor is persuasive. He wants us to take an enlightened position to learn how to communicate, how to act. To continue to be a responsive and responsible parent and try to hold the family together when it seems impossible to do so. But he is clear—we cannot let this person bamboozle us, tear the fabric of the family apart, ruin the calm and turn it into desperation with his rants and outrageous behavior. Some parents won't stand up to their grown children, they tell us that. And we see how they live. They feed and clothe the young man or woman into their thirties,forties and beyond, provide a roof over their heads, do their laundry, take their guff and hand them money for cigarettes. We are not without fault.

We're not being asked to stay out of the picture. He's saying we have to learn what the person is feeling when a sickness like schizophrenia takes over and we certainly need to be there for that person. But not move too far ahead. These are treatable illnesses, the ill person has to want to come in for care. We can't make them do this. But we can offer support, love and compassion. So long as we do not let our personal, motherly and fatherly feelings dominate.

We still have family roles to think about, to hold our families together in times of stress like this. It can strike hard with our loved one's brothers and sisters who feel guilt or shame over it. Our own health and well being matter, too. Mom and dad may need some counseling in their own right or as a pair, to understand what is happening and to avoid a breakup.

If you both can't confront the illness in the same way it can destroy much of the good feelings that keep a marriage intact, the counselor points out. With all the anger and frustration we must endure, is it any wonder the counselor has to caution us about our own coming to desperation? We need patience, not hyper-vigilance. Time heals. Let's see how things work out, he says. I see your son's doing better now, he's definitely doing better, so let's let things ride out for now.

It's hard to be that patient, given our own need to naturally and intuitively do our utmost to help our child. That's because we care, we are almost the only ones who care in a world that is harsh and unfeeling toward people as vulnerable as they are. (Roy Neville)

Why not let clients see a doctor first, not a social worker?

2009-12-22T02:47:00.002-05:00

Why does treatment in a mental health clinic not conform to treatment in any other health clinic where you come in to see a doctor first rather than a social worker? Are we so short on psychiatrists? Aren't general physicians just as capable to handle psychiatric patients today where the main treatment is to prescribe pharmacy? The psychiatric profession has had to learn about these drugs and so can the general practitioner. Besides, county mental health clinics and publicly subsidized hospital clinics, like Ellis, are often staffed nowadays with nurse practitioners and physicians assistants,who have power to prescribe medicines but may lack the rounded experience of a psychiatrist. Look at this—we are told that patients with symptoms of mental disorder other than a florid episode will go to the government-subsidized Hometown Health Center on State Street and see a doctor at first visit, usually same day they show up. In contrast, someone even with serious symptoms trying to see a doctor at the Ellis mental health clinic may be forced to wait 30 to 60 days and then will just see a clinician at the outset. For an emergency they'd suggest you go to the hospital emergency room. The therapist who intercepts you at the clinic needs to assess your condition before referring you on to a doctor. Why do we do this in the publicly assisted clinics but not a psychiatrist's office? The doctor makes his own assessment, keeps his own charts and records, makes the patient “his”, not the clinician's. But the clinician continues to see the patient, delving into social and adjustment issues called counseling. The counselor talks more to the patient than the doctor does, which helps patients feel more comfortable, even if some problems can't be talked out. And this counselor becomes the client's advocate, or not, to line up future doctor visits and other forms of assistance. It's a strange world in which public psychiatry is practiced. (Roy Neville)

why not permanent housing?

2009-12-22T02:42:00.000-05:00

It must be near the top complaint of parents and individuals with mental illness in the state-assisted so-called treatment apartments that the state considers these apartments only temporary for that tenant. Why can't the state people accept reality that our relatives don't want to be told they must move within three years or less once they've been placed in a decent, suitable apartment, where they meet friends and get used to transportation routines and feel safe and familiar in it. For years NAMI members have banged the door of the state poobahs in Albany and exhorted policy makers to change the policy that declares these licensed congregate care units (there are several thousand statewide) non-permanent housing. Anyone who has ever been forced from their home knows the anguish it causes to be told to move. Our not for profit housing providers in Schenectady have shown good sense while observing state policy. They've often recognized that a person's needs come first rather than slavishly observing a poor policy that doesn't always fit. So they let some tenants stay on many years in a licensed unit. We were told years ago by a manager for Mohawk Opportunities that they won't move out someone who has greater need for that level of supervision (case manager visits, for example) than if he or she were placed in supported housing. They work this out with the tenant who has leeway to stay on if satisfied where he or she is. The state Office of Mental Health, meanwhile, seems to have a policy it knows doesn't always work, agreeing people should be moved out only if they've gained skills while in the treatment apartments to live more independently. And if they haven't advanced, at least upstate, they can stay on. We hope the good sense prevails, that people still in need of supervision won't be forced to move from assisted housing and the state will add to its housing inventory to solve the bigger problem. (Roy Neville)

People with mental illness are getting muscled to kick the cigarette habit-- why not leave some of them alone?

2009-12-09T06:55:00.002-05:00

This is a bit contrary. Let's start with observations. Cigarette smoking is on the decline except for people with mental illness who now smoke about half the cigarettes sold in the US (who's counting?) These people must therefore find personal satisfaction with cigarettes despite the state's attempt to paint them as evil and price them beyond what poor people can afford. Smoking causes early death from health problems that include emphysema, heart disease, high blood pressure and cancer. But overweight causes these too, and smoking keeps your weight down. It's the medicines' side effects and peoples' lifestyles that cause overweight so why do doctors prescribe medicines that have such pernicious effects? Well, they are more concerned with regulating symptoms of your disease; that's why you get Risperdal or Zyprexa which blow you up like a ball in a matter of weeks.

Why are so many smokers lounging around outside the club? Doctors writing in the OMH News,August 2009, say family, friends and clients have viewed cigarettes as a way to ease the stress associated with mental illness. Nicotine is seen as helping to relieve symptoms and lessen the side effects of medicines. So, whether true or false, nobody's riding herd on these patients and the doctors want professionals to push people to quit more aggressively. They now counsel treatment to reduce tobacco dependence in combination with nicotine replacement therapy or medication that reduces craving.

That's all well and good but what feels good to someone who experiences the unpleasantness of stress as part of daily life, won't be exchanged for nicotine gum, some pills or pushups at the health spa without really pressing incentives. There's another point. Withdrawal brings its own pains, something these people are going to avoid like the plague. One explanation is that withdrawal symptoms can be confused with worsening of the emotional symptoms of their illness—people get irritable, depressed, anxious, or intense--and they fear this happening.

The state Office of Mental Health is adding muscle to its campaign for tobacco cessation. It wants outpatient clinic programs in state facilities to regularly check on their clients' smoking status and urge smokers to enter a smoking cessation project. Personalized recovery services (PROS), coming to Schenectady's Ellis mental health clinic soon, will pay Ellis to feature tobacco abstinence treatment. Providers are to receive training online to work on this. It will become more prominently part of combined mental health and addiction treatment.

A more guarded approach from NAMI

NAMI national has a guarded policy for smoking and wellness, trying to accommodate voices of smokers who are patients with the role of the guardians over their lives. NAMI wants education and support so people can make healthy choices in their lives. It says “smoking has been inappropriately accepted and even encouraged in therapeutic settings for treatment and recovery. Access to smoking is sometimes used coercively and can be a source of disruption in treatment facilities. Smoking and other tobacco use also increase stigma. NAMI encourages smoke free and tobacco free environments in treatment and other health care facilities, group centers and common areas in housing, including prohibiting smoking and other tobacco use by health care providers, caregivers and others working in and visiting such facilities, centers and housing. NAMI opposes any practice that uses access to smoking and tobacco as a form of coercion or reward.”

At the same time, the policy continues, “NAMI recognizes that the best time to provide and support smoking and other tobacco use cessation is not when consumers are in crisis because such treatment may exacerbate psychiatric symptoms and other conditions. Nicotine addiction is powerful and withdrawal is difficult for the general population, so it is particularly difficult for individuals experiencing a psychiatric crisis.”

A personal view is that the state and various hospitals and health authorities have mobilized huge resources to go after smokers at this late hour. We've known for almost half a century about cancer producing effects of cigarette smoking from huge federal studies done back then. State hospitals have forbidden smoking by patients and staff on campus for at least 10 years. It's against state law to smoke in restaurants, hospitals, almost every public facility and most places of employment. Millions of dollars are being spent to wring the habit out of the last remnant of smokers. The ones who persist can't or won't give it up. Many of them are mentally ill. Why not let them continue? Is this really an epidemic? The relatively small number involved does not seem to justify the massive resources aligned against them. Like children with a natural tendency to be hyperactive, do we need to classify them as disordered and stick them on Prozac?

For the smokers who puff their cigarettes outside in the cold these days, finding solace in the company of others like themselves, giving up the habit may be too much. With an eye on all the dollars the state throws at the problem, a better answer might be to Let them be! (Roy Neville)

Should the mentally ill be allowed to refuse to take their medicine?

2009-12-09T06:13:00.009-05:00

It's really the same question all over again, explained very well in an editorial in the Boston Globe back in 2002, as follows: “Research shows that almost half of those with schizophrenia have an impaired awareness of their illness. This impairment, called anosognosia by neurologists, is caused by damage to areas of the brain that mediate self-awareness. The impaired awareness is thus biological in origin, similar to that seen in Alzheimers's disease, and may vary in degree from individual to individual and even in the same individual over time. It is not the same as denial, a psychological mechanism that we all use at times. This lack of awareness may explain why a number of the mentally ill are inconsistent in taking their medications, antipsychotic drugs that can help stabilize moods or eliminate delusions.

Dr. E. Fuller Torrey is one of the authors who supply us with the evidence about anosognosia.“Impaired awareness of illness is a major problem because it is the single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications," trumpets a page from the Treatment Advocacy Center in Virginia, where Dr. Torrey is the principal writer. "It is caused by damage to specific parts of the brain, especially the right hemisphere.”

Evidently that's the part that mediates self awareness. But do you mean that people with schizophrenia aren't self aware? The same people get around town every day, get up in the morning, take breakfast, go off to work or program, meet counselors, take pills, talk to friends, enjoy a read in the library? Do they do it all in a trance?

Now for the failure to take medicine. That's mainly because they hate what it does to their mind and body. It stretches them out, knocks them out, makes them listless and foggy minded. They lose any energy, any appetite, any sex drive. And they still have the hallucinations and delusions that are hallmarks of the disease. In Fuller Torrey's “Surviving Schizophrenia” he describes the knockout punch of schizophrenia: “Those of us who have not had this disease should ask ourselves, for example how we would feel if our brain began playing tricks on us, if unseen voices shouted at us, if we lost the capacity to feel emotions, and if we lost the ability to reason logically.This would certainly be burden enough for any human being to have to bear, but what if in addition to this, those closest to us began to avoid us or ignore us,to pretend that they didn't hear our comments, to pretend that they didn't notice what we did? How would we feel if those we most cared about were embarrassed by our behavior each day?”

So there are a lot of reasons, to my mind, for the person who realizes he or she is not thinking clearly or feeling right to act contrary or belligerent. And several reasons why they'll defy others, like parents and doctors, to take medicine when it's urged on them. Sometimes we've found it takes a friend or trusted medical professional to step in and make the visit with them to the clinic or doctor's office. It's always worth trying to get them there, whether it's their lack of self-awareness or just contrariness that keeps them aloof, arbitrary and unwilling to go along with what we want.(Roy Neville)

When they don't know they're ill, how can we blame them for what they do?

2009-12-09T06:02:00.001-05:00

All together now, say Anosognosia!
This little poke at the establishment divides itself into two parts:1) questioning the claim that anosognosia is a brain disease that psychiatrists say shows that many people with schizophrenia and bipolar disorder can't understand that they are mentally ill. And 2) whether we are correct to let people with an intractable brain disease be freed from responsibility for their acts.

First, according to the neurologists, we seem to be talking about those with a brain “freezeup”-those who are so out of reality they don't know they are sick. And therefore they can thwart the norms and rules of society, refuse to take medicine, fall under the spell of their hallucinations and run afoul of the law. They don't know what they're doing, so why blame them? Well, they may just know more than researchers say they do.

In my experience, for the minority of people with schizophrenia who are profoundly affected, I find people do not act so blindly. Instead, I think they know they're different but they can't change their thinking and behavior--it's wired into their brains. And it's reinforced by society. They won't admit something is wrong with them because of how we react to them. They don't like what medicines make them feel like so they won't take them. They are non-compliant on purpose, not innocently. They can be manipulative and forcefully clear in expressing what they want and don't want to a doctor, counselor or disputing parent. We observe them as young men and women fully able to draw themselves up with whatever dignity and self respect they have to tell off their doting parents and doting doctors and underage social workers. We keep trying to change and repress their behavior. They want to have a good time now and then by drinking beer or smoking a joint. And they catch hell. “What do you want from us?” they seethe. “Look at the life you have for us.” I heard it the other night at the relatives support group-- a parent told how his son screamed back at him: “You don't know what I'm feeling! Give me some space!” Yep, they need space.

And if they are ill, should we hold them responsible for their acts?

This is sanctified territory to talk about blaming. Does someone's mental illness relieve him of responsibility for his acts? That is, is he helpless to change his ways because of a disorder called anosognosia? I think we have to accept that some people because of the illness, whether they know what they do or not, must be treated differently in society and under the law. And our courts are trying here in Schenectady to make allowances, to provide alternative hearings and sentencing and substituting treatment for jail when possible. The prison system hasn't awakened yet, it still treats prisoners who are mentally ill with disdain and a harshness unreserved for any other group; its use of solitary confinement for large numbers of these prisoners is one of the great injustices of our times.

In many other respects people with mental illness are expected to conform to society's rules and norms. We want them to thrive, live among us as independently as possible, accepted by their neighbors, landlords, employers, shopkeepers. Blessed with good treatment, most people with severe brain illness can at least partially recover, reshape their behavior and become responsible citizens.

Still, we know those with schizophrenia and the other severe mental illnesses lack insight, they lack skill in judgment, they act impetuously, they think in their own confining terms and fail to see the larger world around them. Those traits usually don't disappear and mean that someone who is brain-disordered will need life-long help and support. Those who can't live safely and peacefully in society may need to be separated from the others, in humane ways. In NY State we have Kendra's law as a method of shifting someone into outpatient treatment and then into more confined care if he doesn't respond to treatment. Even then, say advocates of a sterner policy, those who demonstrate they are dangerous should not be allowed to live among us. Too many tragic episodes are the clear result of not identifying these individuals ahead of time and putting them in custody.

The view is demonstrably contrary to law and policy, how the courts have ruled on these issues and how police agencies enforce the law. It's the most common complaint heard from families of the mentally ill around the nation that the state won't act to protect their son or daughter, husband or wife from hurting themselves or others. Rising against this are assorted voices in the consumer movement, unwilling to accept that dangerous behavior of a few threatens all of us. They oppose all restrictions on individual liberty and will accept the occasional violence and other personal tragedies as costs to be borne in order to uphold one's priceless liberty. But by letting someone off the hook, they breed contempt for the very people they seek to defend. Society, too, must be blamed for failing to come to grips with the reality that these powerful diseases have devastating effects on the mind. (Roy Neville)

Paying psychiatric patients to take medicine raises ethical questions

2009-12-09T05:09:00.003-05:00

Here's an article in Treatment Advocacy Center e-News about a team at Queen Mary Hospital in London starting a study of the effectiveness of paying patients with schizophrenia and bipolar disorder to take their medicine. It's not a new idea, points out E. Fuller Torrey, the psychiatric researcher who has written the article and advocates for it. The 136 patients “have a very poor track record for taking their medication” and are all on long acting antipsychotics which they receive by injection every two weeks or so, Dr. Torrey explains. Half of them will be paid about $24 each time they come in for their injection and half will receive no money and will thus be controls. Both groups will be followed to see if the payments make a difference in preventing relapses and rehospitalization.

Now I know it's a common practice in research but it feels wrong. Let me start with the question: Why would you pay people to do something they don't want to do as much as you want them to do it? Some answers: the benefits outweigh the costs. The procedure does no harm. The researchers achieve their objectives. There is freedom of choice for subjects not to take part. And when it comes to severely ill mental patients, say researchers, they may not have the ability to judge whether the transaction is good for them or not because their brains are incapable of doing so (a tack that is also used to permit forcible hospitalization of some patients who might be a danger to themselves or society).

My discomfort is that these acts violate the ethics or morality (take your pick) we live by. Ideally we avoid exploiting groups of people like prisoners or hospital patients or nursing home residents, or even giving the perception of doing so. Who said exploitation? Don't they give up some independent choice to abstain from the research offer? Isn't the offer to pay to take your medicine a more subtle way of coercing behavior that does violate ethics in which people should be free at all times to reject the offer? When you pay people to do your bidding, you expect something in return and that includes more than docile acceptance of the terms of the deal. The patients or prisoners in the study are now part of the program, not really free to criticize it or influence others about going along, and they are faced with the anxiety that they can be punished for doing so (or kicked out of the program). Those who refuse to join not only give up the cash but have to wonder if they will be recriminated against by their superiors and “outed” by their peers. People in institutions think this way.

And those in the programs find ways to circumvent the rules. I seem to remember that someone proposed to pay patients at the Capital District Psychiatric Center a few years ago to take medicine or give up smoking,one or the other. What happened, I think, is that those who joined in and followed the rules were paid but this backfired. Patients were using the money to buy cigarettes for themselves and their friends.

The moral objections I raise do have to balance out against the simple utilitarian value of carrying out research that matters and finding enough people to volunteer for a project. Hospital patients, prisoners and those in old peoples' homes are among the easiest to find and most vulnerable to exploitation, as history shows us. It seems clear if the studies will do harm in any way, such as using medicines or treatments on the patients without safeguards and full disclosure, or doing interventions that expose the patients' lives to others through publicity or shoddy record keeping, or interventions that lead to these patients being regarded differently by others in the institution, then there is moral liability on the part of the researcher. If not, paying them as an incentive to take part in scrupulous research seems consistent with common convention. For example, in the latest NAMI Promise (Syracuse) newsletter, SUNY Upstate Medical University asks for volunteers for a genetic study of schizophrenia. It says all you do is complete a questionnaire, participate in an interview and have your blood drawn. For that you are paid $50 for your “time and inconvenience.” Sounds proper enough, who can argue?

What about paying people to give up bad habits?

Just to carry this further about the questionableness of paying people to do whatever we want--like throwing off bad habits or conforming their behavior to the rest of us—I have some illustrations how this can go awry. Health and wellness are goods that we all strive for. The state plays a large role in promoting our good health. But should the state be judging cigarette smokers as evil, going to great lengths to penalize smoking? Should it impose harsh jail sentences on those who smoke street drugs, lumping marijuana in with far more potent drugs? We would do well to try to understand why so many people take illegal drugs in a speed-up culture like ours and expand treatment opportunities for them rather than impose jail on them for even minor offenses.

We have this terrible problem of drug taking. Young people in school and college flaunt the rules and defy the police and treatment regimes. Why not pay them to give up a street drug habit or cigarette smoking? It won't work--it takes more than small money to motivate people to get off drugs or smoking and stay off. The habits are too strong. Some will fall victim to their addictions. They can't get off the drugs without long term counseling and supports from those around them, perhaps a radical change in lifestyle and direction. They have to believe in the benefits of abstaining. We have to believe they are worth saving, not try to pay them off to give up such worldly sins.

Why don't we pay others to get rid of unwholesome behaviors? For example: pay prostitutes to use safe sex. It would make the profession quite popular. How about getting overweight people to cut down on food consumption? Wouldn't it benefit them greatly? Yes, but in a free society people can choose to overeat and ignore their health. Why don't we just pay people to be good? It doesn't work. There was a time when parishioners who confessed their sins had to buy indulgences from the church in order to receive penance for their sins. That brought on a revolution in the 1500s. It proved the church couldn't make people good by having them pay their way out of sinning and it left an indelible mark on church history.

The arguments go even farther afield about the folly of paying people to solve a problem. None is more upstart and outlandish than Jonathan Swift's proposal to have the poor Irish in his home country sell their infants to the well to do British to cook them up for a hearty meal or two, so the Irish can escape starvation. In his essay “A Modest Proposal” (1729) he argued that “I have been assured by an American of my acquaintance, that a young healthy child well nursed is at a year old a most delicious, nourishing, and wholesome food, whether stewed, roasted, baked, or boiled; and I make no doubt that it will equally serve in a fricassee or a ragout.”

And politicians who get caught in payoffs cross the line into bribery and corruption, when the public interest is involved. That's a long shot away from the more ordinary practices we've discussed but it shows the desire to pay people for their compliance in any setting often has a tinge of immorality about it. (Roy Neville)

Letter to John Allen and Tom O'Clair: rating the counties

2009-10-21T04:03:00.003-04:00

Family and consumer representatives John Allen and Tom O'Clair of the NY State Office of Mental Health published a survey rating the counties by how many constituents sat on county community services boards and mental health subcommittees. The idea was to stir up interest, should the county be failing its responsibilities. The way they did it, compiling a staggering table of meaningless data, drew the remarks below.

John Allen andTom O'Clair:

I really don't see any meaning in the table you have sent out to the NAMI organization and its affiliates. Someone at OMH has spent a lot of time putting this together at a time when community mental health services budgets are stretched thin and there has been no growth in services to keep up with the population changes and to see that needed jobs are done by provider agencies. The county offices of community services are understaffed, positions are missing and go unfilled and county political leadership does not promote a vigorous attitude for mental health.

This fact gathering is a misrepresentation about the participation level of families and recipients as well as provider personnel. It has inaccurate data about their participation, about the numbers of meetings and frequency. The county by county scores at the end of the table are laughable attempts to show one county does better than another when the grades have no basis.

There is in fact, very little participation by families and recipients on these county boards and committees. In Schenectady I'm sorry to see things on the downgrade with fewer family members attending, almost no consumers, and almost no directors of agencies. This is a high scoring county in your estimation. Instead, there is low morale, even disinterest, I believe, because mental health budgets are kept low and the Office of Community Services can't staff up promptly. Meetings are infrequent and poorly attended by providers.

I'll tell you what's wrong here, besides wasting taxpayer money on such mind numbing number checking. The OMH has abdicated its responsibility to see that the county community services boards and mental health subcommittees act according to law and regulation. These offices are weak and unorganized. The meetings are held infrequently and not on regular schedules, often being cancelled. These are not formal meetings. there are no minutes kept, no votes taken, no agenda published. No attendance is taken, no written record of continuity as to what was planned and what was accomplished. So a citizen cannot tell what the community services board or its mental health committee does nor what it has done over the years to show for its meetings.

For that matter, most of the parents I meet with in family support groups over here wouldnt know there are such boards and committees and if they do, they do not show interest in joining them when we publicize them. Here's what I want to say. The parents are far more interested in the immediate problems facing them and their adult children with mental disorders. they crave more counseling, advice, talking out their situations, which keep changing, particularly when someone is losing touch and uncontrolled with their illness, getting in trouble with the law, lacking housing, needing medicine, looking for social security and medicaid benefits, trying to work free the bureaucracy and waiting lists to get what they need.

I know both of you are trying to help with those things. And we in NAMI and the hospital support groups go over it again and again. But these necessities are never ending. New parents come along with the same problems and need a helping hand all along the way, the kind of support we need from both of you, as well.

What's wrong is that these citizen boards are set up to see there is leadership at county level with citizens invited on them to see that the private agencies in mental health are doing what they're supposed to and they're properly funded. Without the exposure the agencies don't have to do as good a job or they're far less visible. That's why I write. People in need are being left out. A few years ago mental health subcommittee meetings were attended by many more agencies--in housing and homeless services, family and child, mental health clinic and hospital inpatient, crisis-emergency, Catholic Charities, City Mission, YMCA--as well as families and consumers. I can remember healthy debates about where our county was going and what was missing and should be addressed in mental health. People looked to the county agency to step up and lead. It's not happening now. You can't help feel the difference from a few years ago. (Roy Neville)

Do we need more screening of patients or more treatment?

2009-10-21T02:11:00.012-04:00

The NY State Office of Mental Health has a gaudy document--a new set of guidelines for mental health clinic standards of care that is sure to impact on the mental health clinics up here. It's borne out of a planning document undertaken by a NYC team in 2008 meant to improve services to people with mental illnesses who are at risk for poor outcomes or violence. And that document came about after the woman died in the mental health unit of a Brooklyn hospital and episodes of violence seemed to engulf the city that year.

The OMH is taking up the new standards as part of its renewed licensing process. The idea is to help it decide if a clinic has high standards of care, just adequate ones or ones needing improvement, and if it's the latter, to push the clinics in the higher direction. That's all right but they put too much attention on testing and not enough on treatment, in my opinion.

To the OMH Office of Quality Management:

I have a response to the draft Clinic Standards of Care that you have put out for comment. What is being proposed that is new? Don't we do these things now, that is, question patients during an evaluation about mental health history, drug use, violent and suicide ideation, general physical health? If any of these are missing it's obvious the clinic should get its act together. But to propose a horde of extra features for clinics to follow in the column marked "exemplary" and insist these are the ones recommended for all seems extravagant.

It suggests that you've added sophisticated test batteries, the sort run by psychological testing companies and specialists and you've put more emphasis on quality control. While helpful I doubt if they are essential to the good working of a publicly subsidized mental health clinic. I think they are too costly to justify.

To my mind the real problems to be tackled lie in treating the assortment of people with complicated mental and physical conditions who come to the clinic nowadays. Particularly, those whose problems are largely sociological--stemming from their environment. Now, assessment is coupled with treatment. But it's only part of it and you can't have a treatment clinic that only does assessment. The clinic has to identify the most seriously mentally ill and sort them out from behavior problems like "problems of living"and those who come from stressful situations such as living in poverty, or homelessness or who are drug addicted, or sexually deviant, for instance.

I don't think the screening tests get at these kinds of people. Their main problems are simply outside the standard questions. For example, sexual offenders--what are the treatment options for them? Elderly people with dementia and/or serious mental illness require health care, housing and supports outside the mental health system; large numbers of teenagers and young adults have drug addiction and unsocialized behavior coupled with mental disturbance, coming from conditions in which they grow up; men and women coming out of jail and prison need to be reintegrated into society; people who don't speak English, and are among legal and illegal immigrant populations need all kinds of help, as do those with overlapping mental health and developmental and physical disability, and the people in outlying rural areas who can't easily access health care.

As I understand, more and more people are showing up with variations of mental illnesses and physical disorders which can't easily be separated out at a single evaluation. Yet each disorder needs to be treated in its own right. So the patients are presenting with more complications than formerly. And the screening tools won't make their treatment any easier, will it?

So I suggest instead of promoting more elaborate testing schemes for patients entering the system (while it's important to do evaluations right), what is needed more is for the state Office of Mental Health to add high quality staff to the clinics. We need better trained and better paid people working there, to do more than just offer talk therapy. The staff have to become more expert on benefits and entitlements like SSI and Medicaid; in how to place people in jobs, in housing and support services; how to help them find meals and food pantries, overnight shelter, where to get food stamps and cash assistance, child care, bus passes, an affordable lawyer, for example. That's what's missing now. And it's what gets them through a crisis or with confidence to face another day. (Roy Neville)

Custody bill re-surfaces in legislature

2009-10-20T05:05:00.005-04:00

Should parent be forced to relinquish child to the state on grounds of parent's mental illness or mental retardation?

Bills introduced in last session of the state legislature (S2835 and A6668) over child custody and parental rights that remain alive in committee are drawing rapt attention of mental health advocates. The bills would remove mental illness and mental retardation as separate grounds for terminating parental rights under social services law, section 384b(4). About 40 organizations support the repealer bills, including NAMI-NYS and Mental Health Association of NYS, sponsored by Senator Shirley Huntley and Assemblyman Peter Rivera, chairs of the respective mental health committees. The state's Family Services Agency and a Homeless Coalition do not.

Social Services law section 384b(4) has four grounds for permanently terminating parental rights, the Mental Health Assn. points out in its advocacy brief: abandonment, permanent neglect, severe and repeated abuse, and “the parents are presently and for the foreseeable future unable, by reason of mental illness or mental retardation, to provide proper and adequate care for a child who has been in the care of an authorized agency for a period of one year.”

MHANYS strongly opposes 384b(4) because, it says, “it is discriminatory; decisions to terminate parental rights should be based on behavior and not condition; the substantive and procedural provisions are vague, subjective and easily misapplied, thus undermining the required standard of proof of clear and convincing evidence; and termination of parental rights is a drastic, permanent measure, severing forever a parent's right to be part of his or her child's life.”

Furthermore, "This statute was written prior to changes in mental health treatment promoting recovery and this statute is destructive public policy because parents are afraid to seek treatment for fear of losing their children and children are removed from families where there is no abuse or neglect.”

Well said. I think most NAMI families would agree. However, as I see it, the bill is not a “slam dunk.” There are reasons why some mothers with severe mental illness, who form part of a class of all mothers with mental illness, should not be the ones to bring up a child. Young mothers, particularly, and those with a first child, may suffer from the trauma of having given birth and the enormous emotional changes to their bodies by becoming a mother. For weeks or months after the baby is born, she will typically be monitored by the followup social workers to see if she demonstrates if she can adequately care for the baby. In many cases, I believe, mothers who are sicker than some others will prove to be poor care givers, because they cannot take care of their own lives and cannot possibly take care of another.

They may or may not love the baby—they simply lack responsibility. We see this over and over. A young mother may be re-hospitalized. She may have intruding relationships with boyfriends. She doesn't show good judgment. These traits are to be expected for someone single and on her own. But someone who is so burdened by her own life crashing around her, is a good bet to fail the child or harm it or temporarily abandon it, and we can't have that. This isn't so rare at all.

As evidence, the bill states that there is “an alarming rate of custody loss among parents with psychiatric or intellectual disabilities—as high as 80%. (Does this mean, 80% of such cases before a judge?) Statewide, about one-fourth of foster care placements involve at least one parent with serious mental health problems.” Does this indicate that taking custody away from a mentally ill mother is discriminatory? The bill also explains the high numbers. It finds “parents with disabilities are particularly vulnerable to loss of custody and termination of parental rights due to preconceived notions about their ability to parent and the focus on their diagnosis or condition, rather than their behavior, that is, ability to parent.”

It adds: “Parents with disabilities are not more likely to maltreat their children than parents without disabilities. There are many other factors that can be contributing which are not singled out in statute. Rather it is the behavior itself which should be the basis for termination of parental rights, not the condition.” The bill further contends “the law discriminates against parents with psychiatric or intellectual disability by not requiring the Dept. of Social Services agency to show that it made diligent efforts to reunite the family."

While my personal experience is based on a single case and I would differ with this evaluation, I support the contention that courts in these cases are stacked against the hapless single parent facing so crucial a test with very little on her side. She may be guilty about what she has done or not done, but she and her lawyer probably have little on which to support her case. The facts are that too many of the mothers lose their child, who shouldn't, even if it is justified in some cases. (Roy Neville)

Federal judge rules against state in adult home case

2009-10-19T05:55:00.010-04:00

What happens now?

This is a major triumph for the advocates and for Cliff Zucker, lead attorney at Disabilities Advocates, Inc. of Albany, which brought the landmark suit that now has supporters begging the governor not to appeal the decision. We refer to the ruling in September in which Judge Nicholas Garaufis of the federal district court in Brooklyn ordered NYS Governor David Paterson and commissioners of the State Health Dept and Office of Mental Health to find more suitable, integrated housing in the community for some 4,300 mentally ill residents of adult homes in NYC. The decision applies only to those larger, named adult homes that have at least 25 percent of residents with mental illness, called “impacted” homes. Many patients were placed there by the NY State Office of Mental Health as it emptied out its state psychiatric hospitals starting in the 1970s. While the ruling doesn't apply to homes other than those in the suit, it is seen to have wider implications.

According to the court document, these facilities which house former psychiatric hospital patients lack the staff and resources to provide integrated housing and services to promote community living. The court concluded that virtually all of the constituents are qualified to receive services in supported housing, “a far more integrated setting in which individuals with mental illness live in apartments scattered throughout the community and receive flexible support services as needed.”

The ruling says that the people in these homes should have access to all the services and opportunities of others living in the community and they do not do so now. The adult home prevents them from living in the most integrated setting possible, which is a violation of the Americans with Disabilities Act and the US Supreme Court decision in the “most integrated setting” case. The judge called the residents “psychological prisoners of the homes-- rarely going out for a meal, a walk in the park, going through a charade of rehabilitation, being herded into lines to take their medicine.”

Mr. Zucker, who heads Disabilities Advocates, a federally sponsored protection and advocacy law firm that has taken other class action suits on behalf of the mentally ill, filed the suit in 2003. While we commend him and the victory in this case, one wonders if the judge got it right. First, we notice the difference in the age group—residents in these adult homes are mostly over 60, while those placed in supported housing in our communities are more apt to be young people 18 and over, but seldom 60. Second, people who live in adult homes are in need of daily support services like showering and dressing, they get medication assistance, often get transportation to appointments and they eat meals in a common dining room. They must be ambulatory and continent when they enter the home even if some of them become incontinent once there. Some use a walker.

In contrast, residents in state-supported apartments may only have a case worker visit them once a month to check on them. They're on their own for meals and getting around. People wouldn't be placed in these apartments if they're incontinent or non-ambulatory. So how can the judge glibly find that these residents of adult homes can easily move into the lightly supervised apartments? The fact is, the alternate places don't exist at all—demand has exceeded supply for years and the state has tightened the apartments allotted to the counties. Schenectady County was only given six units this year and fewer in the last few years, with a far higher waiting list.

The non-profit housing sponsors won't even take the money to open new supported housing in counties north of NYC, with exceptions, because the stipend is so small and rents have climbed out of sight. So the housing companies have actually not renewed some apartments and frozen out their tenants. Could that happen to residents out of adult homes? Remaining state-backed housing for the mentally ill--licensed group homes and treatment apartments, are few and far between. The state would need a whole new housing regime to go ahead with more of them. So any newcomers will find a long wait even if the state makes a much greater investment in its housing opportunities.

Besides the shortage, some of us have continuing doubts about the judge's ruling. Families quoted in the NY Times Oct. 8 gave mixed feelings and some had fears that life on the outside for residents might prove difficult or even dangerous. The Times article says relatives are in a quandary because they have little or no power to dictate where they belong. They are not considered dangerous to themselves or others and are legally independent adults. The families do not support the homes, however. One of those quoted is Florence Weil, who as a NAMI member on Long Island has advocated for years for stricter state standards for the homes. She visited them, inspected records and testified before legislative committees. Little was changed in the face of the powerful adult home lobbies. And back in 2002, the homes received a scathing report in articles by Cliff Levy of the NY Times. The articles pointed to chaos in the sprawling homes in NYC, telling how those living in the worst homes were abused and neglected and f'orced to take medical treatments they didn't need.

Meanwhile, in an op-ed in the NY Post, E. Fuller Torrey, a well-known advocate for the mentally ill, calls the judge's decision “well-intentioned (but) will ultimately mean disaster for New Yorkers.” Torrey sees large numbers of untreated ex-adult home patients roaming the streets, winding up in shelters and jails. He blames the state Office of Mental Health for shifting state mental patients from hospitals to the adult homes starting in the 1970s. “What Judge Garaufis should do,” Torrey argues, “is to order the state to clean up the adult homes, limit their size, and set up a program of unannounced inspections by an independent state agency. Instead, he threw residents out on the street.”

Judge Garaufis hasn't ruled as of Oct. 20 on a specific plan to remove the residents or whether the homes can admit more mental patients. NYS OMH is said to be evaluating its options. While most of us would find closing the worst homes a godsend, the questions are how will these frail and elderly residents fare in the move outside the walls and will the state follow through in such precarious economic times. (Roy Neville)

Demise of the family-initiated housing model for people with mental illness

2009-10-16T02:37:00.005-04:00

You must have heard about the family sponsored housing model for those with mental illness. Starting about six years ago, in 2003, a group of us in the Albany-Schenectady area met over and over to discuss plans to make this a reality. We would dedicate our own home or purchase a home together, or leave our home in an estate trust, to our own mentally ill adult child so he and others like him could live there. A not for profit housing sponsor could run the building or we could form a management group to do this. If the building itself was considered unsuitable, an agent could sell it and buy another, or an apartment or condominium that would fit the bill for our surviving mentally ill relative and perhaps another person chosen to live with him or her. The scheme would solve the impending problem of where will our mentally ill relatives live after we are gone, if they can't find government subsidized housing (or are thrown out of it) and can't afford an apartment on the private market.

We thought we had the answers. We went over all the details—about how to buy a house, set up a trust, decide who is to live there and by what rules, who operates the house, who pays the bills, whether this is wanted by our children, and is it financially feasible or just pie in the sky? We had a consultant at most of our meetings over the years 2003 to 2006. We invited in prospective partners from community agencies and a funding source to study more carefully the whole idea of families creating housing with all the risks that entailed. Why would we put money down on a house or leave our house in trust so that others who we may not even know would live there (with our own mentally ill relative)? It still made sense because we thought we could do it better than the government or even the housing providers, given our lasting devotion to our loved ones with these awful illnesses of the brain.

To explain our ideas to others I wrote up the family initiated housing proposals in the NAMI NYS newsletter, we talked it up at NAMI NYS meetings, and we met twice with members of the NY State Office of Mental Health, who responded with encouragement but no pledges of money. At one of our statewide NAMI conferences we held a workshop about this and received dozens of signups from other families who felt the same need and wanted to hear more about our plans. People called us from New York City to ask if their child could come to live in our house once it opened. All this was a harbinger for success. We only had to find the right house to buy or leave one to posterity to make a go of it.

Here is my story--the others have their stories, too. Back in 2003 I decided to buy a house for my son to live in with others like him who are mentally ill. I had the money, housing in Schenectady was quite cheap and I thought I knew the city well enough, as I had lived here over 40 years. Also, like the others I felt a need to secure a place for him (he has a sister who also is mentally ill and she might need a place, too) and there could come a time when the apartment he lives in will no longer be available or he will want to leave. I pictured various alternatives: a big old boarding house for men who could play pool and cards and the like; or a two-family house with men in one unit and women in the other; or a family type home for three or four with a live-in caregiver to be hired; or I buy the house and turn it over to a not for profit housing corporation in mental health to run and take care of the building. I talked to local directors of housing programs and to several parents in the NAMI orbit. While the parents expressed interest, our adult children didn't always seem good matches to live together—the first obstacle.

Toward the end of 2003 I put money down on a two bedroom flat near Union College, had a consultant look over the building and declare it in need of massive rework, so I got my money back. Once again I found a house I liked in mid-city and put money down, hedging my purchase on the need for a new driveway. The owner balked, so my check was returned. The third house on which I signed a purchase agreement proved successful. It was a large two-family in a nice section surrounded by single family homes where families raise their children. I didn't think it appropriate for a house full of mentally ill people to move in there. We shun discrimination of any kind but I had to know that placing disabled adults in a building alongside single family houses with children on a lovely tree lined street is a sensitive matter. You don't do it. So I rented to two families with children and put off my plans.

I thought if one of my tenants moved out I could reconsider leasing the apartment to two or three adults with mental illness. (If you saw our last newsletter for September-October you would have read about my trials this summer to rent to a disabled couple with children in the Section 8 housing program with the Schenectady Municipal Housing Authority. (See namischenectady.org for newsletter.) While the couple didn't eventually receive the apartment I was ready to face the questions: could they afford monthly payments even if the government pays all but 30 percent of their income for rent and utilities? Would they take good care of the building? Would they get along with neighbors? The important thing was that they badly needed a better place to live. They simply lost out to another bidder as time went by and I had to rent.

That was close. It almost worked, although the public housing agency had some crusty rules to break through. The MHA would have paid most of the rent up front, to my advantage. It does not provide case management however. If we are honest, we know people with serious mental illness often don't take care of their room or apartment. I would have had to secure extra help from one of the health care agencies to look in on those tenants. They have occasional crises and someone should be on call when they arise. As the house is in my name, or a trustee, one of us is responsible to see the house is kept in good condition, we must pay for maintenance and repairs, insurance, property and income taxes, and anything else. I think that few people with serious mental illness, the ones who need housing the most, can live independently without home visits from case workers. We know that things break down and emergencies arise from time to time unless there is professional assistance and this can be very costly.

If we turn ownership over to a not for profit housing provider, it generally wouldn't pay property tax or income tax on the property. That means it doesn't have to charge a high rent as we would have to do to cover taxes, mortgage and insurance costs. Our class of tenants have small incomes and can't pay rents of more than $400 or $500. The provider company conventionally makes repairs and provides at least minimal case management. But our group of parents couldn't agree on employing a housing provider and so we fell apart on this question as well as our children's incompatibility to live together.

We also failed to see how difficult it is for two or more of us to go in together to buy a house. With multiple owners there are bound to be disagreements about paying the bills and sharing the load. We wondered what we would do if one or two owners backed out of paying the mortgage or making lease payments, leaving someone else holding the bag. We really would have to own the property singly and that would exempt the others from having a voice in how it is used. We'd end up taking care of our own child at the expense of any other people in line for the housing plan with our design.

Meanwhile, house prices kept rising, reducing our options. Why not sell the house on the private market and use the proceeds to buy a condo or lease an apartment for our disabled son or daughter? With a special needs trust, the assets of the sale are safely invested for the disabled child for his lifetime and we can feel secure. But if we are to do so, we haven't helped solve the housing crisis for any of his comrades. We haven't lived up to the pledge of making this work out together, as families who cherish our children, know their vulnerability and fear they may become homeless in an uncertain future. The government can't be trusted to find enough housing for all those with severe mental illness. We hoped to copy the example of parents who joined hands to open homes for their mentally retarded children years ago.

But our children are significantly different. They won't agree to live where we want them to. They pick their own friends and roommates. We've had to realize the simple prospect of leaving our housing to our own kind won't even work if the child doesn't want to live there. And combining our effort with that of our friends makes the enterprise even less workable. We'd have to devote too much time and money and we're not meant to be business partners or know how to keep up a house. It's discouraging to realize we've failed. (Roy Neville)

Looking at the state's latest mental health master plan--Toward The New Jerusalem

2009-10-07T21:14:00.011-04:00

The state just issued a draft in September of its latest five year projections for mental health services, called the 5.07 plan. This year's master plan is full of words like recovery, resilience and transformation, all pet expressions of the state commissioner of mental health, Michael Hogan.

These odd terms are at the core of the latest planning approaches and reveal a lot about what the agency thinks it is doing. Things start off with:“How do we create hope-filled, humanized environments and relationships in which people can grow?”

The commissioner replies forthrightly: “At the Office of Mental Health, we each find our own meaning in recovery and resiliency. At the OMH our embrace of recovery and resilience recognizes two truths. First, they each reflect a journey rather than a destination. Recovery is not remission. It is not a miracle cure. Rather, it is the process of living a good life despite illness and loss.”

He goes on to say, “The second truth is that recovery and resilience each depend on change made by the individuals involved. Treatment can help. Indeed, for most people, finding the right treatment is a foundation of recovery. But treatment alone is almost never enough. The recovery journey requires personal engagement and action.”

So it goes. We are on a journey toward transformation into better selves. We can pull ourselves up and out of our malaise if we see the light. Others have done it—read their stories. We can kick the habit of street drugs and alcohol, wake out of our stupor, start a brand new life, if we choose.

Maybe. The agency isn't really talking about people with schizophrenia, is it? The word is almost never mentioned, nor is bipolar depression nor any of the illnesses associated with emotional pain and suffering that can last a lifetime. These are the illnesses that may take another half century or longer to figure out and now offer few clues as to their origins, how to cure them or ease the suffering of victims.

The illnesses not mentioned are the ones most difficult and costly to treat, the ones that engender fear and distrust because people with severe brain illnesses can't always control their behavior. The seriously ill may not be on the OMH's radar anymore, along with people who are homeless, in jail and prison, on probation or parole, those with long or repeated hospital stays, who tie up emergency rooms and create problems for nursing home operators. There's a slew of severely mentally ill people who don't receive services and who never will from an agency that thinks the diseases are volitional—that is,where someone only needs to find the motivation to change their ways, find a job, or stay “clean”.

It's a mistake, I believe, when the planning is all about health and wellness and not illness. The book gets stuck on words like resilience and recovery, much like a sermon on Sunday morning. It wants us to believe there's a New Jerusalem out there, a shining light on a hill, a transforming vision of who we are and what we can become. If only we follow the precepts and guidelines of our benefactor, the state.

I'm being sarcastic because I think their stand has too much art in it, it's a smokescreen, part of a political strategy. In truth, they're cutting back millions of dollars in spending for community based mental health—where labor costs are high and some in the public and the legislature don't believe the money is well spent now.

As we suffer from stigma and disgrace, and the population of seriously mentally ill continues to grow, in the matter of spending on needed community services, the state capitulates, closes continuing day treatment programs, eliminates a valuable program called COPs, exerts pressure on the housing providers in order to recoup its so called “excess” Medicaid funds already spent by the group homes. Meanwhile, the state hospitals at OMH direction, refuse patients coming from psychiatric units of general hospitals who should be confined longer, in an unabashed policy reversal to save money

Much is said in the document about restructuring mental health clinics to see that their role is clarified and pay is better. Hospitals with psychiatric units are to receive rewards also. However, the state will continue to shift the locus of care from hospitals, nursing homes and adult homes to the community, without the money alongside. For children and adolescents, at least, there are more in-home services.

With all the emphasis in this document about mental health being an intricate part of general health and how problems are prevalent and troubling, we don't get a picture that they're going to make any frontal assaults on the barricades. “Gaining access to good care is like running the steeplechase--a long process with too many barriers” someone observes.

As to the state's vision, we are asked “What does good mental health care look like?” The reply: “Good care is accessible, personalized, continuous, and integrated, and it emphasizes the ability of each person to live, learn, work and participate fully in his or her community. The best of treatments, including medications, evidence-based behavioral intervention and psychotherapy, do not cure mental illness. Rather, they help people manage their symptoms.” And the new thrust helps people find the motivation.

That's as good as it gets in terms of a modest self appraisal. But we know how much more needs to be done to assure access and affordability of services and facilities. Too few with a serious mental illness hold jobs, live in decent housing, have companions and earn any real income.
Some topics are missing. For example, in the criminal justice arena: Why aren't steps taken to follow through under the law to take mentally ill prisoners out of punitive special housing in prisons? Why don't more city and town police officers receive inservice training from state and county mental health personnel? Why has OMH let the legislature put convicted sexual offenders in parts of some state psychiatric hospitals?

The plan does state that these are harsh economic times and budget cuts have stopped some progress. But it seems mentally disturbed people who are homeless or in jail or prison, who have significant physical problems as well as mental, who are elderly or frail, or stuck in nursing homes and adult homes, aren't attractive to the new creed. They're not included among the groups destined for recovery and we don't hear much about them in this document. .

The 5.07 plan doesn't really deal with them at all, yet they represent a good proportion of the state's troubled mentally ill. Some are wrongly confined in nursing homes in NY City, as a federal judge has recently ruled. It will take more than appeals to the soul to provide more spaces for these adults, to keep up with population growth, to serve veterans, the elderly and others—and this is the responsibility of the state Office of Mental Health. And it will take more than resilience to get it done. (Roy Neville)

Dr. E. Fuller Torrey--3

2009-06-02T05:12:00.002-04:00

How does it feel to have schizophrenia?

“Surviving Schizophrenia,” first published in 1983 and now in 5th revision, is the bible for families who have lived with someone with that particular mental illness. It defines what schizophrenia is and is not, how it is treated, what causes it, what are the courses and outcomes, what comes after, it handles questions from consumers and families, and advises on how to be an advocate. I thought it's worth rehearsing what this wonderful book has to offer, whether you're directly involved or a casual reader.
First, the book is written in a style that's clear and easy to understand without condescending to the lay reader. I find it has the best explanation of how you would tell someone what schizophrenia does to you, what it must feel like. You might be a high school kid feeling your brain is suddenly crashing in on you, or you're a parent or sibling and want to know how you manage when your close relative is going through the gyrations of an upset mind where thinking and emotions go haywire
Families are up against these wild and stressful situations and Dr. Torrey is sympathetic to all of this. We hear of so many of their tragedies and triumphs at the relatives support group meetings inside Ellis Hospital Psychiatry on a weekly basis. Some, at least, report schizophrenia in their family, while there are more reports of bipolar disorder today and a lot of cases of teenage depression and among young mothers and some old folks. Each of these illnesses come and go, flare up and die down, or stick around, so you may need to know about public mental health services here, how to obtain maintenance medicines, come in for counseling or entitlement programs, among other things. Torrey goes through those, too.
Look--when a disease like schizophrenia first strikes it's terribly distressing because no one knows what to do. There are weeks and months of waiting to see if symptoms are confirmed, to see if medicines work, to find if the individual can get back on his feet and recapture his life. Young people who are resilient enough usually can go back to their jobs, drive a car and look after family responsibilities. But some will be hit harder. Every semester, it seems, a young man or woman drops out of a local college and is hospitalized. Will he or she go back to school? Some do.
Torrey's book is particularly helpful to young people, first time sufferers.
Some of us have gone in as a team to the high schools in this area to talk to students in health classes and read passages from Surviving Schizophrenia. The idea is to tell them these diseases strike young people their age or a little older, it's a no-fault brain disease, and you can get help. You should tell your parents and school counselor if you're feeling the symptoms. There is medical treatment in the community.
How must it feel? Torrey explains that it can have devastating consequences:
In an early chapter, he writes: “Sympathy for those afflicted with schizophrenia is sparse because it is difficult to put oneself in the place of the sufferer. The whole disease process is mysterious, foreign, and frightening to most people. It is not like a flood,where one can imagine all one's possessions being washed away. Nor like a cancer, where one can imagine a slowly growing tumor, relentlessly spreading from organ to organ and squeezing life from the body. No. Schizophrenia is madness. Those who are afflicted act bizarrely, say strange things, withdraw from us, and may even try to hurt us. They are no longer the same person—they are mad!”
“Those of us who have not had this disease should ask ourselves, for example, how we would feel if our brain began playing tricks on us, if unseen voices shouted at us, if we lost the capacity to feel emotions, and if we lost the ability to reason logically. This would certainly be burden enough for any human being to have to bear. But what if, in addition to this, those closest to us began to avoid us or ignore us, to pretend that they didn't hear our comments, to pretend that they didn't notice what we did? How would we feel if those we most cared about were embarrassed by our behavior each day?” Torrey asks.
We tell the kids they shouldn't make fun of others they see acting odd in class because it's not the individual's fault. We say treatment works most of the time for most people.
Torrey goes on to explain the symptoms of schizophrenia, citing the hallmarks of hallucinations and delusions and the difficulty sufferers face in interpreting and responding to auditory and visual stimuli. Someone may have difficulty concentrating on schoolwork or even watching TV. He or she may withdraw from friends, sports and school activities and change their personality.
In regard to treatment and the impact of the illness on society, Torrey picks a fight with many of his colleagues. He argues that schizophrenia has to be treated with medicine, not talk therapy, and those unable to be treated successfully must be put aside from society (hospitalized or segregated). Those opposed to this view, he believes, are creating the dangerous situations that lead to innocent people being harmed or killed, including the sufferers themselves.
Torrey takes a whack in his book at the lack of involuntary treatment laws that would take the most vulnerable patients off the streets, those at risk of hurting themselves or others. Stubborn laws prevent these sufferers from obtaining the treatment they need, he writes. (NYS has Kendra's Law, a model for the states and a brainchild of Fuller Torrey's.)
He is ever alert to the realities of mental health services in poor communities and among minorities. He is appalled at the tragedies of the homeless and untreated mentally ill who show up in emergency rooms and jails and prisons. We are urged to act more aggressively in our advocacy to get better mental health housing, treatment and support services for this population.
And he recognizes how powerful the stigma against mental illness is for families and individual sufferers. He's devoted to erasing that.
(For more information about NAMI locally and at state and national levels, call our phone number listed on the website. And be well.) (Roy Neville)

Dr. E. Fuller Torrey--2

2009-06-01T23:26:00.002-04:00

NAMI's top advocate takes them all on

Meet E. Fuller Torrey, the heart and soul of the NAMI family movement and a world class advocate committed to eradicating schizophrenia,
Some call him flamboyant, dogmatic, shrill. He has always walked the straight and narrow in seeking recovery of severely mentally ill persons. He espouses the medical model of care and he will fight anyone, particularly the radical mental health consumers, who defies his belief that someone who can't live safely in society should be hospitalized or given priority for outpatient services.
That's his main calling as an advocate, I feel. As a researcher he can go into brains and he can claim there's a cat virus that may cause schizophrenia but from his political pulpit he mainly wants untreated mentally ill people taken legally into custody and not let loose on our streets. And he wants state laws changed to make this readily available.
Back in the 1950s his sister came down with schizophrenia as she was about to enter college. Dr. Torrey was aghast at the fake theories then prevalent about mental illness, inspired by the Freudians. He didn't believe that schizophrenia was a product of poor parenting nor that their mother was to blame. He never forgot his sister and has continued to visit her in Utica where she resides in a state hospital today. His sister's illness started him on a career in research into schizophrenia and on the way, he emerged as a leading advocate for the families of sufferers with mental illness.
Dr. Torrey is known as quiet and refined in private. But up front at the NAMI meetings he acts like a tiger (or wolf). I'm reminded of the times we saw Dr. Torrey in Washington and other cities. At one of these a few years ago we sat in a crowd of about 100 waiting for Fuller to appear. We all donned white tee shirts with a black wolf's emblem on the front. When he came down the aisle we howled and moaned like werewolves for a few delirious moments. He told us up front we have to fight harder, attack like wolves, if we're ever to change backward government policies toward the mentally ill. We greedily growled our applause.
Along the way there are a lot of other things he wants. He argues vehemently for a sufficient mix of community mental health services, including assertive community treatment, clubhouses, supported housing and supported employment, emphasizing illness and medication compliance throughout (see Wikipedia article on Torrey).
Many of us in NAMI follow the same lines, honor Fuller Torrey, but have learned something of his penchant for adoration and his snippiness toward dissenters. Despite a fruitful career, Fuller Torrey has a mixed reputation. Unless I'm mistaken, he's thought to be somewhat of a gadfly in the political arena.
In his time he's taken them all on, friend and foe:
--The NAMI crowd separated themselves from Fuller Torrey several years ago because of his reputation for disagreeing with others, particularly on the consumer issues. So he set up the Treatment Advocacy Coalition to take a harder line advocating changes in state laws that would force states to offer at least some limited form of involuntary hospital treatment (like our state's Kendra's Law). He called out NAMI leaders last year for backing the findings of a national study that supported some second generation medicines for schizophrenia, claiming they were reluctant to oppose drug companies who donated money amounting to more than half of NAMI's budget. He did accept an award from NAMI at the 2007 national conference.
--He has opponents among his old research colleagues who think he's all wet with his cat virus theory.
--He has urged Congress to put the National Institute of Mental Health (NIMH) back into the National Institutes of Health (NIH) which receive far more research dollars and have more political clout. And he's embarrassed top dogs at the NIMH, where Torrey worked, and Center for Mental Health Services (CMS), whom he charged with having a 1960s hippie mentality against medicine. He complains the CMS has wasted money on studies of pigeons' sex lives, for example, and paid for anti-psychiatry groups, while not focusing on severe mental illness.
--He thinks the states, not the federal government, should be where mental health policy is centered. But recently, and pointedly at NY State, he contends the Office of Mental Health has done too little and should be folded into the state Department of Health, which administers most of the spending anyway through Medicaid.
--A few years ago while on the board of directors of the prestigious Sheppard Pratt Hospital in Maryland, he is alleged to have prevented another researcher from joining the hospital staff because of their opposing views on the rights of mentally ill people to refuse treatment.
--Dr. Torrey is most furious about restrictive state laws, the result of federal court rulings in the 1970s and later, that prevent seriously mentally ill people from being admitted to hospitals or clinics for mental health treatment. These civil rights laws have sparked controversy around the nation and prompted Torrey to found the Treatment Advocacy Coalition about 10 years ago. TAC has advocated for states to pass assisted outpatient treatment laws, which give priority for someone acting out disruptively in the community to receive at least clinic treatment and medicines. In NY State this is known as Kendra's Law, passed in 2001 and a model for the rest of the states. Opposition still exists to these laws because they can legally force someone into treatment. When two mentally ill men were shot by police last year in NY City, Torrey penned an article in the NY Post headlined: “Deadly Madmen--Mental Health System Still Lets Them Roam.”
--He has harshly criticized state mental health officials for lack of community mental health services, including mental health courts and diversion from jail, police crisis intervention teams, drug courts, and shortages of housing and psychiatric beds available in emergencies. He blames today's epidemic of homelessness, violence and medication noncompliance among the mentally ill on the failures of governmental leadership. He finds that most of the violence occurs among those not in treatment.
--Torrey has also tilted over the years with the anti-psychiatry crowd including psychiatrists like Thomas Szasz, who think schizophrenia isn't a real illness, and with the neo-Freudians, whom he exposed in his book The Freudian Fraud.
The good doctor with the illustrious career is so thoroughly devoted to causes the families hold dearest, it's too bad we don't revere him more, instead of picking at his failings. (Roy Neville)

Dr. E. Fuller Torrey--1

2009-06-01T04:55:00.005-04:00

The cat virus theory of schizophrenia

Dr. E. Fuller Torrey is the guru of the NAMI family movement. Over the past 50 years he has investigated mental illness, researched the causes, worked on the wards at St. Elizabeth's, worked for the National Institute of Mental Health, run the Stanley Medical Research Institute in Bethesda, Md., where they do brain studies, founded the Treatment Advocacy Coalition (TAC), which advocates for states to change outpatient treatment laws, all the while speaking out and writing books and articles at every opportunity. Many see him as the most provocative and accomplished psychiatrist in America.
He does all that with a passion and personality that gets him both high praise and in a lot of hot water with his allies and coworkers, his friends and supporters, and his bosses in top circles in government.
So we have a controversial genius moving on his own mad track to discover the connections of infectious agents with schizophrenia and bipolar disorder--the severest and most exasperatingly hard to understand of the brain disorders we call mental illnesses. And he's our man.
Here is a short recital of some themes in his research focus. (Learn more from Wikipedia—the internet encyclopedia; also from an interview with Fuller Torrey on SchizophreniaConnection.com (August 26, 2007); an article in NY Times Magazine, Feb . 22, 1998; and an article in Stanford Magazine called Brain Storm, Jan-Feb. 2003.
You can pick up almost anywhere with Dr. Torrey's amazing history. First, his fascination with the cat theory, a zany idea both for those who might own a cat and not have the illness and for those who have the illness and don't own a cat:

The cat virus connection
Fuller Torrey thinks viruses spread schizophrenia and bipolar disorder; specifically a domestic cat parasite called toxoplasma gondii. As reported, he says: “We've done two studies on exposure to cats in childhood of people who have schizophrenia and it was increased. We now have 46 studies that have been done looking at antibodies against toxoplasma gondii in individuals with schizophrenia and they (antibodies) are clearly increased. If we're right on this, we are guessing that the transmission takes place probably early in childhood.”
The cat parasite can lead to toxoplasmosis. Up to one-third of the world's population is estimated to carry a toxoplasma infection. Torrey and coworker Robert Yolken publish studies on seasonal variation with the infections. They're even using toxoplasmosa gondii agents (antibiotics) as an add-on treatment for schizophrenia. He believes that infectious agents will eventually explain “the vast majority” of schizophrenia cases. Has anybody heard of that? Is anybody interested?
“We've not proven it yet, so you should not go home and kill your cat,” Torrey says. “And if you are over the age of 30 and you have a nice cat, that's fine. On the other hand, if you want to minimize any chances in your children, then getting a cat for a young child is probably not the right thing to do.” (Opponents say he's off base. See Wikipedia article on Fuller Torrey for this discussion)

The brains delivered by Fed Ex
Fuller Torrey collects brains at the Stanley Medical Institute in Washington, which he heads. His team receives postmortem brains often on weekdays via Fed Ex for their brain bank, the largest in the world. He now has over 600 brains in his collection which Torrey calls “first-rate, brains of people younger and not dead long,” the kind of brains that “would be full of unaltered proteins and neurotransmitters, viruses and cytokines that might hold the answers to schizophrenia's cause. The only schizophrenic brains available before this have been very old and not in very good shape. They came from hospitals and nursing homes, from patients so elderly that by the time they died the brain had atrophied.”
Torrey gets the brains donated from medical examiners offices and “has built a national network that collects brains of mentally ill people who have died in their 20s, 30s and 40s, from suicide and heart failure, in car crashes and fires.” He employs several pathologists around the country to work hunting brains. The frozen brains are shipped to his lab, where, he says, “we have 44 freezers just full of brain.” While he uses some himself, he ships most of them free to researchers world wide. (See the NY Times piece mentioned above about this)
At the Stanley lab, the brain tissues are scrutinized by a team of researchers to identify cell damage that may point to viral infection. They are also searching for antibodies in brain cells and for chemical substances released when the body fights infections. The team hopes that finding the viral culprits could lead to effective new drugs and perhaps even a vaccine for schizophrenia. These studies are not conclusive. (See Stanford Magazine article cited above)

Torrey's twin studies
Fuller Torrey was principal investigator of a NIMH schizophrenia/bipolar disorder twin study conducted at St. Elizabeth's Hospital in the late 1980s and early 1990s. He co-published several studies on structural brain differences between affected and unaffected siblings. He differed from his collaborators in arguing that the genetic heritability of schizophrenia was lower than typically estimated. Disagreements followed with those reviewing his data. (see Wikipedia article)
Some of us in NAMI were first attracted to Dr. Torrey by his twin studies, which seemed to set the odds for inheritance of schizophrenia. He wrote in Surviving Schizophrenia (1995) that his study of identical twins shows that when one twin develops schizophrenia, the second twin has about a 30 percent chance of also becoming affected. Among fraternal twins the chance of the second twin becoming affected is about 10 percent, the same as for brothers and sisters.
While genes play some role in the development of schizophrenia, Torrey remarks, there is much debate about what that role may be. “If schizophrenia is truly a genetically transmitted disease, it does not fit existing dominant or recessive patterns. It is also difficult to understand why the disease has not died out since people with schizophrenia reproduce at an extremely low rate. Furthermore, first-cousin marriages or other inbreeding do not seem to affect the rate; the incidence of schizophrenia is not higher in areas where such inbreeding is higher. Finally, it should be remembered that only about one-third of individuals with schizophrenia have a family history of this disease, which means that two-thirds do not.” (See Surviving Schizophrenia, page 156).
Hence, we might understand Torrey's continued fascination with viruses, more than genes, as causes of schizophrenia, even if the findings are less conclusive. (Roy Neville)

What mental health consumers want for inpatient services

2009-05-26T01:23:00.006-04:00

It's boring and it's not private while in the hospital

I came to listen to what the consumers had to say. They were gathered at the big tables in the open room at the Collage psycho-social club on a Thursday afternoon waiting for supper.
Holly Clark, who manages the clubhouse for Ellis Hospital, had their attention. She wanted to see what they thought about the inpatient psychiatric unit at the hospital. That's where you go when you're sick, and while many of the folks who attend Collage have had a turn in the hospital for a crisis with their illness or a panicky time or depressed time, they don't generally talk about it. There's a powerful stigma at work that keeps anyone's medical and mental health history unspoken, off limits—even to friends and family.
This wasn't to get at anyone's personal history. It was about the things that everyone knows go on when you're hospitalized but you don't have a chance to talk about them while you're there. Holly began by asking if they would have some ideas for improvements there.
Eager to talk, they began suggesting how their stays might have been more pleasant or rewarding. There seemed to be three themes: they wanted more groups and activities on the unit that would keep them involved; the right to go off the unit to neighboring Sunnyview where there is a gym and swim pool; and more privacy—for small group discussions and family visits, for instance.
About the groups, “We need weekend activity..they don't have enough on weekends to do,” a man offered. Like what? “Dancing, karaoke...hobbies—arts and crafts.” Someone said they have an arts and crafts room but it's not open weekends.
What else would you like to do? Holly asks. “I'd like to play Trivial Pursuit...and Boggle.”... “I'd like to do beads”.... “We could make jewelry.” Holly says: “Oh, that's a good idea.”
Do you have books and magazines? “Yes.” What about writing—like poetry? “Yes, they give you paper and crayons.” Could you make scrapbooks? “They don't allow scissors.” Can you use a camera? “No. You can't take pictures of anybody on the inpatient unit.”
“We could do quilting, suncatchers...'journalong'--another hospital did that,” they began saying. Do you have TV.? “There's just one TV in the dining room. We don't have TV in our own rooms.” They agreed on more TVs.
How about a radio—can you listen to music? “No radios,” they replied, “they're not allowed.” How about headphones so you don't disturb anybody? “No,they won't allow those either—it's the wires.” And no tapes. Apparently the hospital considers the magnetic tape inside cassettes a safety risk.
But, Holly persisted, “If the headphones are wireless, self-contained? And they are one-piece that go over your head?” That idea sounded safe enough even if no one's using them on the unit.
Then came suggestions about exercise and freer movement. “What we need is a gym, a place to exercise. We'd like to use the gym at Sunnyview. They have a pool—why can't we swim there and play volleyball?” (wide agreement). Evidently, other patients at Ellis have had such privileges. Holly thought they could look into it. And someone sensibly suggested: “We'd need bathing suits.”
The gym at the Capital District Psychiatric Center was mentioned as a big attraction for patients there. CDPC also has a workshop where patients can put in time and earn some money by doing mostly routine assembly jobs the hospital takes in under contract.
When they were asked about working, they replied: “We can do jobs. We could help pass out menus or wrap the silverware for the kitchen.” Such chores are needed every day in the hospital. “Why not?” they asked. No one had a ready answer. It just wasn't in the cards.
Another suggestion was: “We need to get fresh air, to go out. Why can't they let us go out on the grounds? At another hospital they let us do that,” a man said. While some agreed, others were hesitant, doubtful they would be allowed out on their own.
They brought up the idea of more privacy and small group spaces. “They need to let you smoke cigarettes, so we have a place to talk,” a woman remarks. (ready applause-- but they know Ellis has rules against smoking inside or outside the hospital.) “I used to enjoy that so much—talking to each other in the small room they had. Why can't we still have a small room?” she persisted. She and others said they'd like to have the room, where it's private, even without smoking. (As an option, the hospital will give them cigarette gum.)
“We need more privacy for family visits. You need a room where you can talk, apart from your neighbor,” someone noted. (There is just one visitor room per floor in psychiatry?)
“Patients need to have a pay phone.” (there is only one per floor for patients). “We can't use a cell phone. People don't get messages.” Several others agreed.
“I don't like them taking my valuables,” a woman said. “They put them in a safe. They might not be there when you leave.” “No,” said another. “They put your valuables in a locker with your clothes. That's all right.”
A member said patients should be notified ahead when they're going to be discharged. “They don't tell you anything.” (it drew approval.)
Along the way there were remarks about the food. “The food doesn't have enough variety,” they contended. (It's evidently the same food as in the rest of the hospital but they said they don't have as much choice. Patients in Psych fill out a slip and an aide picks it up each morning for the day's meal choices. Other patients, like those on medical-surgical floors, choose meal selections from a larger menu and phone them in. On Psych they said they do get a snack in the evening—including a sandwich and ice cream. During the day they aren't served coffee, just juice.)
Part way through this chatty session, Holly is handed a note. She opened it and turns to a fellow: “This comes anonymously. Are you sure you want me to read it?” When he nods, she reads the note. “Okay, it says: 'I'd like to have nude nurses and a sponge massage.'” A lot of cheers followed. It was one of the moments that broke up the crowd. (Roy Neville)

Commissioner fiddles while Rome burns

2009-05-25T22:25:00.002-04:00

How state Office of Mental Health falls down on its responsibilities

Government has to ask now and then if it is the problem, not the solution. And if it is the problem, how about getting out of the way so that other people can get on with their lives
State government leaders in mental health are talking so piously about making reforms they don't look at the obvious—that their own policies make for some of the problems that exist that cost taxpayers millions of dollars and cause hardship for consumers of mental health services and their families.
Imagine fighting a health care system that is so fragmented that you can't get what you need to recover from a serious medical illness. That's a number one concern for many families with schizophrenia
As National NAMI reports: More than 2 million Americans and their families face these conditions every day because of an illness called schizophrenia. It's an illness that is twice as common as HIV/AIDS. It does not discriminate. It strikes people of all races and both genders, and cuts across all social and economic classes.
We've been saying that for more than 20 years, pointing to the state legislature and Office of Mental Health for remedies. Do they have remedies?
Imagine being homeless, or having a son or daughter who went missing and has not been heard from in years. There are so many wanderers among the mentally ill population. And families can't find them because of a vicious system the state and national governments use to stifle any talk about a mentally ill patient's condition or whereabouts without his or her consent.
We've objected strenuously to that, too but haven't gotten anywhere. Known as patient confidentiality laws, both state and federal, these keep families in the dark about their loved one's hospital stay or place of residence, for example. They keep treating professionals from easily sharing information, and finally, perpetuate stigma against the mentally ill by silencing and threatening anyone who discloses.
The institutional review boards were set up to bird-dog similar surveillance over what people say or write about the mentally ill in research projects. Every college and university research paper for publication undergoes this review in our state as do papers from researchers in government mental health facilities, hospitals and private laboratories and centers. The reviewers will delay and block publication if there is any suspicion that the subjects can be identified. The result is to freeze any serious research on behaviors of mentally ill people in different contexts like prisons or nursing homes, for example. This is another area where the state needs to adjust policies.
While the commissioner flirts with tracking systems and computer improvements, his policies affecting community mental health are questionable. He has written that continuing treatment programs must be cut back while the state boosts payments to co-existing mental health clinics. This would remove a vital part of the treatment system in our community.
Also, the state has announced it has changed the role of the state mental hospitals to make them into short term and intermediate care facilities. This eliminates their traditional duty to take patients from the psych units of general and private hospitals for extended stays before returning them to the community. The change makes it harder for discharge coordinators in Ellis Psychiatry to place patients now that the state is balking on taking patients as formerly. Are these sensible practices?
The commissioner is emphasizing rehabilitation, independent living and self-directed treatment as ingredients in a new model of care. His “transformation” philosophy is liberating to some. But we shouldn't turn away from pressing needs of the most seriously mentally ill who cause the greatest impact on society when they are not treated, I believe.
He seems to say as much in an article he and his medical director, Lloyd Sederer, have written in Health Affairs (Vol. 28, No. 3, 2009), titled Mental Health Crises and Public Policy. They say the state is responsible for mental health policy, while the states have to develop strong local government systems of mental health care to be effective. Referring to crises, like the shootings in NYC last year, or the woman who died in the waiting room of a Brooklyn hospital, or the Karen Webdale case back in 1999, they say those in charge try piecemeal fixes, none of which prevent more of these events from happening again. They call for “clinical alerts” in NYC and improved clinical standards to follow up on high risk patients, as “touch up” changes proposed by a NYC task force.
But many more decisions not being made should haunt our state leaders. What about protective services for families where violence occurs? How about “housing first” programs that take people off the street as they're trying to do in NYC? How about more halfway houses for men with mental illness who have just been released from prison, so they won't immediately be returned? What about tackling the difficult question of whether it should be state policy to lock up mentally ill people who prove they can't live safely in society?
The state can do much more on a variety of fronts.
--Over the years we can't recollect a single case of the Office of Mental Health tapping the NYS Dormitory Authority for funds to build apartment projects. Other NYS departments have gone this route, leading to housing projects for mentally retarded people, the elderly and college students, among others.
--Assertive Community Treatment teams are underfunded in the state mental health budget which causes them to be less effective. Schenectady County originally had to put up its own funds for its first ACT teams.
--the state fails to open more crisis stabilization homes for the mentally ill, which are medically staffed group homes that take more fragile patients than those admitted to other licensed group homes. As a result many people are admitted and readmitted for short term stays in the hospital at high expense when they could be supervised appropriately in a crisis residence.
--the state office has not promoted the employment of mentally ill people by state agencies under section 55b and 55c of the state Labor Law. These jobs used to be a reliable source of employment for them.
--There is excessive record keeping and report writing in annual state recertification and Medicaid reviews that are extremely costly and time wasting for hospital and clinic personnel in psychiatry. Staff have to write progress reports in longhand in psychiatry to please recertification teams. Workers spend more time doing reports than treating patients, it is alleged. Computers would speed up the reporting.
--Similarly, the group home and apartment programs run by not for profit corporations under contract with the state office also contend with heavy record keeping, particularly to account for medicines doled out. Daily treatment reports filed for Medicaid reimbursement are paid only after considerable lag time and are often kicked back to the agency if not filled out properly.
And what about the homeless in the streets, the repeaters in the emergency rooms and psychiatric wards, and the people with restless voices clamoring in their heads. Shouldn't this commissioner put first priority on them? One of the programs the legislature approved to address these issues is Kendra's Law, or assisted outpatient treatment. It has saved the state money and recaptured lives. And it serves as a model for other state mental health systems. But the commissioner is ambivalent about this, citing a report saying since the law was passed, crimes continue to occur and the effectiveness of AOT is still being evaluated. Give us a break! (Roy Neville)

Demise of the Medical Model of Mental Health Care

2009-04-21T06:41:00.003-04:00

The revolution that people foresee coming to mental health care in New York State carries risks and challenges. For some, it means the end of the medical model of care, with doctors, hospitals and medicine being tossed aside where possible. For others a transformation to patient self-directed care, independent living and people gaining greater control over their lives represents a “great leap forward” in mental health.

The US Surgeon General sounded the death knell for the old system a decade ago, summing it up like this: “So the medical model, primarily focusing on symptom relief, passes in favor of recovery, which casts a much wider spotlight on restoration of self-esteem and identity and on attaining meaningful roles in society.”

The demise of the medical model follows on the heels of events that shook up the world of psychiatry in the past decade.

In the past few years we've seen evidence of culpability of state hospital directors and their staffs who expelled thousands of sick, mostly elderly patients from the big state hospitals on Long Island to crummy nursing homes and adult homes in Brooklyn, Queens, New Jersey and elsewhere.

Later came revelations that leading psychiatrists and researchers around the country including those we regularly invited to our NAMI conferences for truth and inspiration were in cahoots with the drug companies and peddled their products unashamedly. That whole world came crashing down in which we had trusted those at the top of the medical profession to explain the mysteries of these powerful diseases crippling the minds of our sons and daughters, husbands and wives.

And there came revelations about over-drugging children who couldn't learn in school and disturbed their teachers and classmates. Doctors firmly believed that pills were the only effective route to behavioral change. This came with the pharmaceutical revolution in psychiatry where most doctors now prescribed medicines for every kind of emotional and mental ailment and relegated counseling, known as “talk therapy,” to a second rung. Only later did we realize that a combination of the two--medicine and counseling--proved the best treatment approach.

Then came startling results from a top level study group, the President's Freedom Commission in 2002-03, that found that the nation's system of mental health care was a flop, costly and ill-achieving. Too many sufferers were not getting any care at all while others lacked access to housing, hospitals and outpatient facilities. Children with emotional problems were particularly limited, with a severe shortage of child psychiatrists and confusion about how to treat children's rampantly wild behavior in the classroom.

And a follow-up study reported that newer brands of anti-schizophrenia drugs, like Risperdal and Zyprexa, called “atypicals,” were no better than older drugs that had been discarded, like Haldol and Prolixin, in treatment of the most severe mental illnesses. The newer drugs couldn't be distinguished from the older ones in efficacy even though the new drugs cost several times more and were now being prescribed almost exclusively to more and more sufferers.

That gave rise to the suspicion that doctors were prescribing the same drugs the companies were paying them to promote in professional journals, at conferences and in company advertising. We read that doctors had to resign from prestigious positions with these journals and others lost their university standing as a result of exposes of tie-ins and payoffs from pharmaceutical companies.

Finally, Rising Costs and Public Disaffection

Meanwhile, the nation began feeling the high costs of mental health care, associated with not only drug prices but a growing frequency of emergency room visits and hospital stays by people facing mental crises. A small segment of this population took up the lion's share of psychiatric beds and ran up huge bills. Lawmakers grew angry at these failures in treatment and began to question the mental health industry.

Too often, the mentally ill were associated with violent acts in the news media. Calls have come from some in the field to lock up persons who can't live safely in the community with others. Such violence has antagonized the public against the mass of innocent sufferers.

Those entities paying the bill--insurance companies and state, federal and local governments--found the combined medical and mental health costs of these patients were rising faster than for any other group of patients, and they had to do something. Companies fought for years to eliminate any mental health insurance coverage in employer health plans or make it inferior to other coverage. Only recently have parity insurance bills passed in most states and at the national level.

The state has converted most of its programs to Medicaid to reduce its own spending, which has limited the ability of doctors and other practitioners to bill for services. It has also frustrated many with an overload of recordkeeping forms and payment delays. For these reasons and the fact that psychiatrists are now devoted to dispensing pills, fewer new recruits are being trained. Those who practice talk-centered therapies based on analysis have lost respect.

With the economy reeling in 2008 and -09, hospitals have closed psychiatric beds and counties have slashed community mental health budgets. The result has been growing numbers of young and disaffected men and women in jail or left homeless in our cities with their mental health needs largely unattended to. Jails have become the stopping place for those who can't get treatment in hospitals and community care.

The system appears to be coming apart. New York State's mental health commissioner, Michael Hogan, wants to move away from hospital and other institutional care to more services in the community. He would look for alternatives to the traditional doctor-medical delivery system by reforming the roles professionals play and creating incentives for better performance. His is the last word while the system struggles to redeem itself from a decade of indecision, false promises and backward steps. (Roy Neville)

Fighting the Good Fight

2009-04-15T16:00:00.004-04:00

How Disability Advocates, Inc. Racks Up Wins for Mental Health Consumers and Families

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

The Radical Revolution That Didn't Occur

2009-04-14T15:14:00.003-04:00

Looking Back to the 1990s When AMI Was a Real Advocate

Almost every year in the 1990s NAMI NYS organized rallies and demonstrations in Albany. We did it with our friends from NYAPRS and the Mental Health Association and housing groups comprising the mental health action network. Our rallies at the Capitol came in the winter and spring when the legislature was fooling with the governor's budget cuts and didn't act on the bills we wanted
We had the famous demonstrations in 1991 when we put hospital beds in the street alongside the Capitol and blocked State Street for part of an hour. And in 1993, I think it was, we built homemade wooden jail cages and set them up on the Capitol lawn to oppose the imprisonment of mentally ill people. Another year we let loose a cloud of green balloons over the Capitol.
The late winter rallies were sometimes accompanied by a hail of snowflakes. Some of us stood in ice and slush on the massive steps. The crowd wore overcoats with their collars turned up. They included old people, the loyalists who had started the AMI family movement in the 1980s and kept coming back
We had the energy and enthusiasm to do it. We screamed our lungs out and hugged one another. One year a young man played music on a keyboard in a cold that nearly froze his fingers. And a young woman who sang like a nightingale led us another time. Our speeches drew rounds of applause.
AMI people would remember. It was all so grand. For those of us most enthusiastic through the 1990s, something happened after that—we just got older or tired of the annual go-around without success, or the economy soured and people's jobs got cut back, or it was simply all over.
I don't know which of these mattered most, but the fight isn't there anymore for the families of the mentally ill to go over to Albany and kick and scream the way they did in the past. New regimes have replaced the earlier ones in the NAMI NYS office. It will take a new generation.
The state government had hit hard times by the end of the decade and everything was trimmed back. We forget that those years were almost as tough economically as now and state mental health budgets suffered the same way
1996 was a year when things apparently weren't going well. We called a rally on the Capitol east steps later than usual. On May 7 abut 200 of us gathered at the base of the huge promenade while our leaders harangued the crowd. Our shouts resounded around the Capitol grounds and routed out the state workers. I still have the notes from a blustery speech I gave that day:
“We're here to raise hell about the budget” I bellowed over the bullhorn. “How bad is the governor's budget for mental health? It's like toilet water—smells good and it's cheap.
“Community mental health is at a cross roads—no more new housing, no new reinvestment, limited Medicaid, block grants to the counties.
“He's got us on the run. He's Wily Coyote. He's Jimmy Hoffa—he's cutting our legs out from under us.
“Tell those wieners in the legislature, tell those bean counting bureaucrats—we won't stand for these cuts,” I screamed and they roared back
At the end we sang religious songs like “Amazing Grace” and “We Shall Overcome”. That's what it was like—a religious aura swept over us to beseech the governor to make life a little easier for our loved ones with serious mental illness.
And then we got our leaders together after more than an hour and told everybody we were going to march around the Capitol and really let them hear us. We massed at the foot of the steps with our leaders out front with the bullhorns and the chants started, with the crowd yelling back without stopping, all the way down the line in an unending roar.
As we marched around the building we felt our chanting could penetrate inside to the governor's office and anybody else who might listen. “Keep the promise of community mental health,” we repeated until we were hoarse.
After it broke up we went indoors to see if we could meet with somebody on the governor's staff because you don't ever meet with the governor himself. We did and we got a message to him that laid out what we were there for. Then we went outside and felt good.
We were just ordinary people who thought demonstrations like this were important. We found the energy and excitement. After the 1990s we didn't play it up so much any more
Every year in the 1990s it seemed, we fought to restore the cuts Governor Pataki and his aides put into the mental health budgets. They were slow to open new housing, new community programs, while cutting back on state hospital beds. Any changes came slowly and grudgingly and I think we fought for them tooth and nail. But the big lobbies like those for state school aid, the unions, the hospitals and nursing homes, and colleges and universities walked off with the money. The governor and most of the lawmakers never thought enough of mental illness to give it the attention it deserved.
There were high points in our struggles, gains in numbers of new apartment beds, funding for community services, employment supports, children's programs and crisis services. The best of these dried up at the end of the 1990s,when the going got tougher and the state bowed out of paying most of the bill on its own. The state shifted everything possible to Medicaid so the feds would pay at least half of what the state was paying previously.
Too much of the mental health budget still went to maintain a vast network of state hospitals which robbed the rest of the system from making headway. The best program of the era was called Reinvestment and it would disappear, too. Our effort to get mentally ill people more housing, jobs, transportation, clinic help, case managers and peer support seems old fashioned now.
Our slogan: “Keep the promise of community mental health” has been transformed, the new commissioner might say. He would reform outpatient mental health by improving clinic care and yet he would reduce continuing treatment programs, which we believed in. We stuck to the medical model that relied on doctors, medicine and hospital beds, but these are now downplayed.
After the end of the 1990s we lacked the spine to keep it up. We called fewer rallies and let other groups, like NYAPRS, run the show. Why did that happen? Did we grow too old? Did those politicians on the hill finally crush our morale?
(Roy Neville)

How HIPAA patient privacy laws block up the system and keep the stigma alive

2009-04-12T12:23:00.003-04:00

Should families still get access to information about their loved ones even if it is held confidential?

Federal HIPAA laws, once they were instituted in 2003, joined the existing NY State Mental Hygiene Law to protect the confidentiality of treatment records of mental health clients and patients. The two laws overlap one another, with the stricter (most confining) of the two applying to the particular case where there is a challenge or disputed authority, we are told.
HIPAA stands for the Health Insurance Portability and Accountability Act regulations of 2003 and covers all health care procedures and health plans while the state law's confidentialty requirements apply to clinical records alone.
These rules have caused a helluva lot of trouble. Providers like hospitals and housing agencies dare not slip up in this regard—penalties are severe for violations of the statutes. A doctor or social worker or facility manager can lose his license or lose his job by playing loose with HIPAA regulations. And to avoid having this happen, nearly everyone in the field except maybe the Ellis groundskeeper knows you keep things secret and you don't ask direct questions about someone's mental illness without a sharp rebuff.
The hospitals and clinics, even the consumer social club in Schenectady trumpet “patient confidentiality” whenever anyone tries to get information about a client of theirs. The laws have become so all-encompassing and so conservatively applied that one view is that the agencies are protecting themselves more than the clients they serve by reciting HIPAA law's protections
When it comes to clinical treatment, HIPAA laws do not let family members of adult patients obtain information that their relative does not consent to. The patient or client has the right to agree or object to disclosure to family members or those involved in their case, according to a handbook for patients, families, providers and others published by the NYS Office of Mental Health and found on its website.
This is confusing to family members who genuinely want to help their loved one in his or her recovery, the guide points out, and families agree. Relatives of family members with mental illness have told others at the local support and education group meetings how exasperated they were to be denied information as basic as whether their son or daughter was admitted as a patient at Ellis.
A few years ago a Schenectady father was hunting his missing mentally ill son after it was reported to police in Albany the man was hurt in a fight on the street. Both CDPC and Ellis Hospital wouldn't say if he was hospitalized there. Later, after a long and agonizing search throughout neighborhoods, to former addresses, the City Mission and two jail houses, his son was found—and he had been a patient at CDPC at the time of the inquiry. And more recently a Scotia man who was arrested on assault charges absconded from his home and drove his car away, left the car at the airport and disappeared. He was found months later when a police officer in a Georgia jail finally called his parents back here about the missing man with mental illness in their lockup
Why the extreme secrecy? Local mental health housing sponsor Mohawk Opportunities asks new residents to list names of those to be contacted for routine communications and in emergencies. If he or she fails to fill in the blanks on the form, in the past the agency has told us it will not notify parents that their relative lives there, if questioned about it. The staff is instructed, however, to suggest that the resident review his or her decision as time goes by
The guidelines say providers are legally obligated to honor the wishes of a patient who withholds permission to make disclosure to family members. In the case of a minor child who is not in legal custody of his parent or guardian, only the county Social Services department is authorized to receive disclosures. The whole idea of such arms-length protection would seem to be that these are very vulnerable people who we have run roughshod over the in the past and we can't let it continue to happen. By hiding identities, mentally ill adults and children cannot as easily become the victims of other people's bullying, shaming and lying about the true nature of mental illness.
Instead of this, hasn't the secrecy behind the HIPAA laws perpetuated the stigma and shame that we don't want to acknowledge about our mentally ill relatives? We are forty years into the modern era of mental health treatment based on science and medicine and we can't openly share information about those with no-fault diseases?
With privacy laws, the agencies can curtail any speech about this person at all, not just clinical information that might compromise his or her rights to privacy. As a result, the secrecy surrounding where these people are and what they're being treated for is bad. The laws should be changed to allow good sense to prevail.
And one thing more. I'm convinced that research into behaviors of mentally ill patients and prisoners can't go on because of the hurdles placed in the way of open access to treatment records, set up by the HIPAA laws. Throughout the nation we have bands of tidy watchkeepers called institutional review boards who must review every research project involving these people. These board members are spirited to block every bit of research they can if it reveals the slightest disclosure of the individuals who are subjects. As a result very little sociological research is done on populations that are normally used for this purpose and the quality of research has suffered, too.
Wouldn't it be better to unfreeze some of these rules and let people do the research work that helps us better understand prisoner or patient behaviors? No one's willing to open the bottle to let ideas flow, so we all remain blind to many aspects about mental illness and behavior. (Roy Neville)

The Ratings Game—How Do NY State's Mental Health Programs Rate a B?

2009-04-11T20:31:00.004-04:00

There's good and bad in the latest NAMI national report

NY State Office of Mental Health gets a B grade from national NAMI for its operation of the mental health system in this state, and that's quite an uptick above the U it received three years ago, for “unresponsive, “ the last time the poll was taken. (see state report card for New York on nami.org website).
NAMI was most generous to award New York a B, considering its average grade awarded nationally was a D, and NAMI had to qualify its remarks about our state by saying:“Despite this high grade, all is not perfect. New York has many strengths, but it also has many problems.”
The NY State mental health commissioner, Michael Hogan, agreed, noting that “While we are gratified by a relatively good rating, we have a long way to go. The report recognizes the progress we are making in NYS to better support recovery from mental illness, but its criticism of our shortcomings is pretty accurate in my view.”
That comes with the territory. The OMH is a vast outfit with a $2.6 billion annual budget and many thousands of employees stretched over a network of state OMH hospitals and other facilities and involving some 2,500 local government and not for profit contracting agencies. It's governed by federal rules for much of its spending like Medicaid and the funding is managed by the state Health Department to a large degree. The Office of Mental Health plays second fiddle to Corrections when it comes to mental health treatment of state prisoners and it must follow Criminal Justice law and regulations for services to inmates of city and county jails.
The way that NAMI collects this data is to send a bunch of forms to the agency itself and ask it to rate itself. Then there are others to corroborate or challenge what is returned on the forms. Somehow the NAMI wits mesh this all together and come up with a report card and a grade from a thousand miles away—so you can take these surveys for what they're worth.
Even with the fairest of survey documents you might find reports like these don't tell much about the quality of the service afforded and the kind of people in charge and the net effect on the main constituents—those individuals with mental illness in all their troubled behaviors, and their families who suffer with them.
Strengths and weaknesses of our state's mental health system are pointed out in the survey. But first, an opinion: The biggest failing of this study is NAMI's missing the boat on the way New York's mental health system is skewed like no other state to put major resources into some 26 state hospitals (17 for adults, three adult forensic, and six for children). These and the main office take over 50 percent of the budget to serve some 4,000 people, while the other half of the pie is meant to cover over 500,000 children and adults served by the agency who live in our communities with all kinds of problems, from schizophrenia to gambling, suicide risks and sex offenses.
“The OMH has emphasized support for evidence-based practices,” the report begins. “Seventy-seven Assertive Community Treatment (ACT) teams exist throughout the state (one in Schenectady). OMH also funds supported employment, peer counseling, peer education and consumer-run programs.
“Placement of large numbers of consumers in substandard adult care homes has been the subject of ongoing litigation. OMH is working to assist adult home residents to move into community-based housing linked with supportive services.” (see later article on Disability Advocates and adult homes)
“New York is also investing in housing,” it asserts. “A recently signed agreement between New York City and the state, 'New York/New York III,' commits combined state and city resources to develop 9,000 housing units over 10 years. The Pathways to Housing “Housing First” model has become internationally recognized. Despite these initiatives, lack of housing is still a very serious problem.”
Most of us would agree. The shortages seem to be getting worse each year as the numbers of people waiting for apartments and group homes outpace the publicly subsidized units added to the housing stock. People live in substandard housing in the wrong neighborhoods and many of the state's homeless population are mentally ill. While the state office pledges to open thousands more beds each year, it is still clearing a backlog of previous years out of the pipeline.'
“In 2007, the report continues, “New York finally enacted Timothy's Law, after a battle to achieve mental health insurance parity” (yes, it took 20 years from conception to passage) and the law still is not permanent, is up for grabs this year.
“In 2008, another important development was enactment of a law to limit segregation of prisoners with serious mental illnesses and instead provide them with treatment.” That's the SHU law (prison special housing, called “the box,” for mentally ill people and others) that won't be put into effect till 2011. Only last month a proposal to delay this three more years was defeated but it shows you how opposition remains to something as humane as this prison reform
“Kendra's Law, which authorizes involuntary assisted outpatient treatment, has resulted in fewer hospitalizations and arrests, as well as new investments in mental health services and supports,” the survey finds. True, New York's law has become a model for many other states
“Deficiencies exist, including severe shortages of acute care psychiatric beds and crisis stabilization programs. Confronted with dual problems of inadequate reimbursement rates and staff shortages, a number of community hospitals have recently downsized or closed psychiatric treatment units. Predictably, emergency rooms are overwhelmed with individuals in crisis with no available treatment beds.” This is worse than the situation we find at Ellis Hospital in Schenectady but psych beds have closed at Albany Med and elsewhere in the region.
'”New York is surprisingly far behind many other states in developing partnerships between law enforcement and the mental health system. Only two police Crisis Intervention Team (CIT) programs currently exist.” But these take money and you need a fair sized city to support them
“In 2009, New York's economic challenges cloud the horizon. Financial collapse on Wall Street and the recession have resulted in a $15.4 billion deficit, the largest in the state's history. Many consumers and families fear the economic squeeze could negate progress made in recent years.
“New York has potential to become one of the national leaders in public mental health care.” However, the report concludes, “budget cuts, retreats, or delays in improving services will signal a faltering commitment to evidence-based, cost-effective transformation, and recovery. The next few years will be vital in setting the state's course for the future.”
The survey writers might tell this to Commissioner Hogan, who's dead-set to reform the delivery and funding of services. Time will tell if the B grade turns itself into an A or a D next time around. Here are some family and consumer comments that came with the report:
--”Emergency rooms at hospitals...It's like a nightmare and ignorance prevails with staff”
--”No help from law enforcement agency or mental health system unless something bad happens”
--”Most of the providers are dedicated and very caring”
--”We need more housing that is safe and where they dispense the medication.”
(Roy Neville)

Pay to Play to Get Your Way in the Legislature

2009-03-14T23:54:00.008-04:00

"Pay to Play"—the Unholy Game of Persuading Legislators to Do Something You Want

Why do so many advocacy groups in mental health almost never get what they want in the annual give and take in the state Legislature this time of year?

It's because they use the wrong tactics, they mistakenly think they get access to the leaders but they don't. NAMI's faithful troop the halls of the state Legislative Office Building in Albany every session but seldom come back with more than promises.

Why is this? What really happens is that the lawmakers follow their party leaders on bills and budget items and if you don't reach the leaders—the big shots who run the Legislature—you can forget it.

We're facing a system known as “pay to play”. Rank and file lawmakers routinely follow the orders of their leaders. It's a very tight system. Even supportive legislators and their staff don't stand up against the leadership on the key spending bills or priorities that are set for them by others. We have the experience to show that it takes more than numbers—it takes money—to convince these lemmings to vote our way, not against us.

That means you must form a political action committee (or PAC) to raise the money you need for this high stakes game. There are about 700 PACs in NY State. There's at least one mental health PAC that functions in the Capital District organized by Bill DeVita of RSS and others that shows the wisdom of this. Bill's group conducts fund raising parties at his house each year and raises the requisite several thousand dollars, so as to represent dozens of like minded agencies and individuals, all clamoring for action on the mental health stage.

It used to be Joe Bruno, until last year “his holiness,” the undisputed power in the state Senate, who held the keys to passing a bill or not. Joe singlehandedly blocked bills the advocates wanted very much like the SHU bill and Kendra's Law,and even Timothy's Law for equal mental health insurance benefits. The word is that Joe charged the PACs and other lobbyists indecent amounts to attend his fund raisers and win the right to press the flesh for a few minutes. Individual NAMI members and their top staff in Albany just didn't get in to see Joe and it hurt.

Nowadays you pay to see the current leaders, who are Shelly Silver, the long time Assembly speaker and Peter Rivera, Assembly mental health chairperson--who's holding a fund raiser in mid-March in Albany. In the Senate you want to see Malcolm Smith, the new majority leader. You need a PAC to raise enough money to get into these events, which will cost you a few thousand dollars perhaps and you might not be invited to some of them without a well-heeled PAC in your corner, I've been told.

A personal chat with Peter Rivera at his upcoming fund raiser, for instance, might mean the difference as to whether the mental health worker's COLA gets restored this year. Or it helps convince him the SSI cuts are detrimental to many and unwise. He's going to be a good listener when he knows how much it means to you in dollars and cents.

It's a stacked and unfair system the leaders employ that mainly benefits the rich and powerful and shuns the little guys like NAMI and its unorganized allies in statewide mental health advocacy. Individual members have no way to put up the money needed to see the Messrs. Silver, Rivera and Smith.

That's not all of it. You don't need a PAC to contact the policy advisers in the governor's office or money movers in Budget or the state department heads in Health and Mental Health, Insurance and the like. You can talk to key legislative staff, good people to know. But you need friends and established relationships here, we've found.

Better yet, restless warriors, raise the money for a PAC. Without it, we in NAMI don't belong, we don't “pay to play”. That's the way the game is played, it puts some money in the lawmakers' pockets. It's lousy and it shouldn't be there but it works for the high and mighty, and that's what makes the system go 'round, as they say. (Roy Neville)

Continuing day treatment and its enemies

2009-02-23T02:52:00.010-05:00

State OMH is trying to close day centers down

The intelligentsia in the state Office of Mental Health want to do away with continuing day treatment programs and they're cutting back those budgets, but their thinking is wrong. John Allen, a division director who's supposed to look after consumer/survivor's interests for the state office, called them “smoking and rocking clubs.” That's calumny. I've been there and they don't do that and it's most disrespectful.

The day treatment center we have in Schenectady run by Ellis Hospital offers shelter, comfort and structure, one of the few places in town that welcome people coming out of a tailspin with their mental illness.

It's mistaken for the state OMH to change the rate structure and billing procedure and thereby emasculate the continuing treatment programs that have sustained our mentally ill relatives in the community for at least the past 15 years. The state office looked for a place to cut money from, got the recovery minded fundamentalists on its side, and went in with the knife.

Continuing day treatment is a licensed, authorized program of the state Office of Mental Health to give people just out of hospital or in outpatient status some structure to go about their lives with. They have hourly instruction and group therapy discussions led by social workers, They take two meals there, have help with transportation, get access to clinical services from Ellis next door. It's for people who may not be able to survive on their own without a maintenance dose of support to help them negotiate the world outside.

The bullies at OMH sweetened the pie last fall for rebellious doctors and social workers at the mental health clinics who complained loudly about their poor pay and low Medicaid and insurance rates. The clinicians got what they wanted at the expense of the day treatment folks and they made off with higher billing rates and better pay scales, as far as I can estimate.

Meanwhile, Rich Angehr, Ellis's day treatment manager, has to worry. He said the state tightened billing rates, in one respect by restructuring things—no longer letting them charge half a day for two hours' time with a client; and a full day for three hours. As a result the agency may have to take in fewer clients and cut back their hours. It could lead to layoffs if the state cuts deep enough, he pointed out.

Many clients in continuing day treatment are right out of hospital inpatient psychiatry where they went because they couldn't cope with life outside at that moment. Some of these illnesses are heavier than we can imagine, like schizophrenia. There are those with depressions so intense they're panicky, can't sleep, feel awful and have thoughts of killing themselves. So what are the state gurus up to?

Lest we forget—people who live with schizophrenia and bipolar disorder can get through life most of the time with medicine that works and community supports. Now and then, they relapse, they go back in the hospital, at their worst they don't know who they are or what they're about. How would you like to lose your identity, to wonder who you are, to know that you're not right mentally but you have to survive it all.

The hospital turns you out in a few days, gives you a ticket to see a counselor at the mental health clinic and they set you up with continuing day treatment. You find friends and people going through the same trauma and you're all working to come out of the fog. You go there three days a week typically, a few hours a day, you listen to what's going on in the groups that will help with practical situations like handling money, using the bus, getting along with people, staying off drugs, coping with trauma.

Commissioner Michael Hogan is equivocal about continuing treatment, not willing to close it down but ready to accept it doesn't fit in with the modern model. Hogan writes:“reductions in the reimbursement rate paid to providers of continuing day treatment programs will help balance the budget. While these don't mandate reductions in capacity, OMH will work with providers that wish to transition to more sustainable program models. We do not seek to dramatically reduce capacity for this program which is a dated model that, nonetheless, provides essential supervision in some communities.”

That means the future of the day treatment business is in trouble. Hogan and others want to replace it with something called PROS—personalized recovery oriented services—that flopped when proposed a few years ago. It has a short term, self help and peer oriented outlook, pulling various staff together. The idea is to handle people quickly and get them out the door. But that's where it fails to recognize reality.

Others in the reform camp talk of the desirability of “rehabilitative services to assist people in managing their own illnesses and restore functioning across a range of life domains, including independent living social and cognitive skills. More use should be made of capitation payments, case rates and other models where providers are charged with responsibility for the whole person or for all of his or her mental health care, writes the Bazelon Center in an issues paper.

Those drab-interior day treatment centers sure don't fit this vision of patients suddenly getting up out of their rocking chairs and gliding swiftly back to society. (Roy Neville)

State hospital honchos raid patients' Social Security checks

2009-02-22T17:58:00.007-05:00

It's illegal but they're doing it, court suit charges

Hard-pressed Governor David Patterson is looking to make up about $30 million in the coming year in a brazen grab of patients' Social Security Disability checks by state hospital directors. Courts have already ruled it's against the law for the heads of these hospitals to confiscate the patients' checks to pay their hospital charges instead of saving the money aside according to the patient's wishes.

“The patients could use this money when they get out—it's theirs,” said Cliff Zucker, lead attorney for Disability Advocates, Inc., the Albany law firm that has challenged this practice. The proposed law would let the hospital director collect the income from monthly SSD checks, amounting to thousands of dollars a year, as the patient's representative payee and use the money without regard for the patient's wishes.

“They can't do it—they have a fiduciary responsibility to act in the patient's interest and they're not doing it,” said Zucker. His firm followed up a 1990s lawsuit involving a Gowanda PC patient whose monthly benefits were taken by the hospital director,which violated the hospital's fiduciary duty. Zucker initiated a class action suit last year in Weaver v. State “alleging that the state Office of Mental Health has failed to comply with the ruling in the Gowanda case” known as Muller v. State of New York and with appeals court rulings upholding it.

Here's what's claimed in the lawsuit by Disability Advocates which now believes the state is retaliating against it. Zucker charges that “facility directors regularly seek appointment as patients' representative payees notwithstanding their conflict of interest; they fail to seek appointment of independent guardians to manage patient's funds which exceed $5,000; they receive funds in excess of $5,000; they use patients' Social Security income to pay hospital charges in breach of fiduciary duty; and they fail to use patients' Social Security benefits as required by state law.

“Apparently in response to the lawsuit, the proposed legislation would overrule the Muller decision and seeks to deprive hundreds or thousands of patients of the right to be reimbursed for Social Security funds unlawfully taken by OMH in the past seven years,” Zucker contends.

“The proposed law would perpetuate a great injustice. There is a desperate shortage of supported housing and community programs for persons with mental illness, including those leaving state hospitals.

“As a result, PC patients could greatly benefit from saving their Social Security benefits to use to obtain housing, food, clothing, transportation, education and other needs upon discharge. Moreover, the availability of funds for that purpose will greatly increase the likelihood of successful transition to community life.”

The money grab doesn't apply to SSI checks because they stop at the state hospital door. But the money that is being taken from Social Security Disability checks could be banked by the patient in a special needs fund and accumulate to quite a large amount, Zucker pointed out, a nest egg for when he leaves the hospital. (Roy Neville)

Sweet Charity--How the state's bad debt pool for hospitals doesn't work

2009-02-10T02:01:00.005-05:00

I came across a piece in Schizophrenia Journal recently that blasted the way NY State's bad debt and charity care pool is used to bail out hospitals that don't get paid by their patients. It also accuses the hospitals of failure to use the monies properly and to take account of the money received, some $847 million in 2003.

People in the Schenectady mental health system have felt the sting of the hospitals' aggressive collection practices when someone can't pay the full amount of their hospital care. Bill collectors start dunning them on the phone, sitting on the doorstep and threatening and insisting on back payment from patients who simply don't have the means to pay.

You'd think $847 million would solve the hospitals' problems. But it doesn't. Instead they and the state have connived to fashion a secret bailout system that doesn't benefit anybody individually who has run up a bad debt with the hospital.

The journal article (Feb 2008) is based on a study by attorneys for the Legal Aid Society of New York that led to stories in the NY Times. It is damning because it says the hospitals really get a huge belt of public money each year to pay bills of the uninsured while their advocates call for more government spending to cover the same debts of some of the 3 million New Yorkers without health insurance.

It was an eye opener because I've often wondered how any stiff without insurance can pay those huge hospital bills after a costly operation or just a stay to see what's wrong that's causing pain or discomfort. It must be even worse now as the bills pile up and more people are out of work and don't have the luxury of health insurance to cover these expenses.

The article is called “The Case for Reform: How New York State's Secret Hospital Charity Care Pool Funds Fail to Help Uninsured and Underinsured New Yorkers”. It's just a rollicking good ride—about how the hospitals don't bother to account for the money they get from the state every year and don't apply it to individual cases. They just sock it away in the general fund, don't keep records, and don't consider it as money to help individual patients pay their bills, as other states do. Instead, one hospital, Our Lady of Mercy in the Bronx, which gets $6 million a year from the state for its charity pool, refused to pay the bill when a patient applied for the funds. And the state doesn't even require an accounting while forking over this largesse year to year to our bleeding hospitals.

Nor are the hospitals gracious about the charity care fund and the way they go about collecting bills from those who don't pay. “Advocates are confronted with increased demands for help from patients who face overwhelming medical bills, aggressive collection agencies and limited awareness of relief,” the authors state.

This hits especially hard on mental patients whose illness typically waxes and wanes and causes some rehospitalization now and then. Some have no coverage while others depend on subsidized insurance like Medicaid or Fidelis Care, not private insurance unless it's on their parents' account. But these don't pay for everything—there are copays and deductibles and some patients are disallowed. There simply isn't a way for a chronically ill or disabled person to pay a back bill in the tens of thousands of dollars--unless the hospital applies its losses to that patient with the charity care money.

And in New York they don't do this, evidently in contradiction of the law. The bad debt pool is paid into by third party payers (insurance companies but not Medicare) and the money is collected by the hospitals on the basis of size and location in the state. Hospitals get their allocations under the current version of the Health Care Reform Act (HCRA law). There is also Public Health law section 2807-k that sets out the rates for an indigent care pool for the hospitals which limits their charges to non-paying patients to their actual cost for services.

Instead, the report finds, “hospitals in NY have been artificially inflating the rates to these patients, the least likely to afford them. Because there is virtually no government monitoring of the hospitals' reported bad debt pool submissions, it is unknown whether the hospitals follow state guidelines and reduce their charge rate to cost.”

And what the hospitals do is charge the full rate for individual patients who don't have insurance. As the report indicates, “unlike some neighboring states, New York requires virtually no accountability for the millions of dollars allocated for bad debt and charity care funds, ignores the need for a standardized application and eligibility system and notification to low income New Yorkers on how to access this money; and fails to regulate hospital charge rates for uninsured and underinsured low income families or to set reasonable standards for billing and collection practices.”

The persistent mystique of the charity fund in New York is baffling. The authors recommend an overhaul to see that there is a standard application and reporting by the hospitals, annual monitoring and audits by the state, and an end to the overcharging and denial of benefits to individual patients. Too many patients have found themselves in a quandary over their debt, dunned by bill collectors and denied credit by loan agencies because of the way the system works now. (Roy Neville)

Hogan's Heroes

2009-02-10T01:35:00.010-05:00

NYS Commissioner Michael Hogan initials his transformation of the mental health system

This is about our local Niskayuna product, the present NY State Commissioner of Mental Health Michael Hogan, PhD, who came to the job two years ago flying in on his coat tails as director of mental health in Ohio (henceforth considered progressive) and as chair of the prestigious President's New Freedom Commission on Mental Health in 2002-03.

Let's see how the commish is doing these days now that he's put his transformation spin on the NY mental health system to the joint legislative committees in Albany. It comes at a bad time--just when the state's economy has accelerated its nosedive.

Former NY State Governor Eliot Spitzer paid a big bill for this star player just as George Steinbrenner was handing out money to the top Yankee prospects that winter and spring. Hogan was quickly confirmed by the Legislature in March 2007.

Hogan soon made an impact in the crusty Office of Mental Health in Albany. As some of us remember, he brought fresh views about mental health—he was open to change, smart, a listener, a doer. He started to appear around the state at regional forums to gauge what his constituents wanted —mental health consumers and their parents, professionals and business people whom he was calling “stakeholders” and some of whom we called “the grassroots.”

He endeared himself to us when we learned he had a family member with mental illness himself, and he grew up in Alplaus and went to Niskayuna High School. From there he went to Cornell and Brockport State U and then Syracuse U for his doctorate. While he served as Connecticut and Ohio commissioner he won distinguished awards from NAMI and the state Governor's Association, he authored untold papers and articles and finally came to his appointment as head of the New Freedom Commission in Washington.

He's a modern Renaissance man, you might say, capable of seeing the big picture in a world of high technology and master planning, while showing that empathy so important in dealing with something as fleshy and uncompromising as mental illness

The commissioner really believes that recovery from severe mental illnesses like schizophrenia and bipolar disorder is possible, that lives can be restored. Rehabilitation is the key and people can get well faster through combinations of short term intensive treatment and self-help and peer-led supports after a relapse. He's still for doctors and medicine but he'd shift the focus of care over to the patients and more choice of treatment if he could.

From the First Plan Onward

When he arrived in Albany in January 2007, Hogan brought with him a comprehensive state mental health plan he developed for Ohio. One wouldn't have to look far to find the similarities between it and the updated NY State plans issued since his takeover. Hogan is a progressive decentralist who wants to make mental health services local, close to home, more productive and less expensive and he's now going front with these views.

His ideas are revealed most recently in his testimony to the joint legislative committees in Albany last month. Here are what you might call “Hogan's Heroes” in the recent go-around with the legislative members, an exposition of what's needed to transform the system of mental health care in New York State into something much better:

He speaks of “good care,” exemplified by what enables people to “live, learn, work and participate fully in one's community.” To do this he would change the funding streams to include more than “medically necessary” services, include job services under Medicaid and self help and peer support under insurance; and broaden the safety net of services for both the seriously and less seriously ill.

He'd expand Medicaid coverage to include a home and community waiver so adults with mental illness can get services in the home that keeps them out of a hospital. He'd put supportive and rehabilitative services under Medicaid and make Medicaid rules more consonant with the other programs.

He wants to reform mental health care by restructuring mental health clinics. He'd remove regulatory barriers to clinic expansion and change the “COPS” supplemental rate (once an incentive to get clinics to enrich services).. Workers there have long griped about poor pay and it's led to high job turnover. While his proposal is to increase clinic rates it would be offset by less funding for continuing treatment programs, not Hogan favorites.

He'd go from there to a future reimbursement policy that “requires health payers to pay for discreet services, rather than the current OMH approach that involves the same payment approach for a doctor's visit as one to a therapist, and the same payment for a complex evaluation session as for a routine visit.” This is called Ambulatory Patient Groups or APGs and it's the new wave although it sounds like old fashioned common sense.

Hogan asks reform of psychiatric inpatient care, too. He told the legislators that “access to acute inpatient care is hard to achieve. Problems in finding housing while someone is awaiting discharge is a leading cause of long stays. Access problems mean that many psychiatric patients are stuck in crowded emergency rooms.” But he doesn't offer anything solid to tackle these issues.

Psychiatric emergency room care is especially costly and ineffective, he continued. “A few individuals overuse the ER and acute inpatient treatment because their ongoing treatment is not adequate.” He said he would look to alternative care to untangle this.

There are more items among “Hogan's heroes”, but we'll just cite two more examples. Hogan claims the state OMH hospitals, like CDPC, are becoming more productive, admitting more patients--and that may mean shorter stays, for better or worse. And the hospitals are finding useful ways for the campuses to supplement community services.

To halt the fragmentation of care in community mental health he said he'd work more closely with other agencies. “This problem is prominent for individuals who have multiple long term or chronic illnesses, including people with serious mental illness, he said. Their health has been compromised by their illness, smoking, obesity and poor lifestyle.

He also wants to expand housing through “joint development of mixed use housing” and would support converting some group homes to permanent supportive apartments, projects high on the agendas of non-profit housing providers.

Trouble ahead

But like the housing proposals, where's the money to pay for this? Projects planned to combine community residence-supported apartment models are frozen. Trouble is, these are tough times. When you change the existing order you create waves. People don't like to be laid off, others suffer when programs are cut, hospitals don't want to receive less money, nursing homes need money, too, and you can't throw the whole system out of balance by holding onto the state hospital system and knocking out basic community services like continuing treatment, in my opinion.

When we were promised 1,000 supported apartments and millions of dollars in new construction for congregate housing early last year it's a shame to find the building projects are on hold. There's no evidence of any new mental health housing in Schenectady. It's not the commissioner's fault but surely the housing is more important than talking about agency coordination and data collection, more studies and more monitoring.

Neither is it Hogan's fault that the state OMH hospital system, the biggest in the nation with 4,000 beds in 17 adult hospitals, plus six childrens' hospitals and three forensic facilities, monopolizes the state mental health budget. He can't close a single building—only the legislature can do this, and it simply crimps resources that might be used for community mental health.

And Medicaid is a bigger problem than even he lays out. Health Department runs Medicaid, which pays most of the bills for mental health and has unbelievably bad rules that don't fit the circumstances the consumers and workers find themselves in. The contracts don't allow for growth and change that are needed.

He also has to face growing disgruntlement about ineffective mental health programs, sometimes voiced in the legislature. No matter what is tried, the lawmakers say, there isn't a payoff, there isn't any sure way of curing someone's sickness or relieving his aberrant behavior or getting him back to work. With every part of state government expected to take a hit over the budget, the governor and the legislature are ready to slash the roughly $3.5 billion state mental health budget, too.

While we wish the commissioner well, it looks like his “heroes” are in trouble. (Roy Neville)

text message

2009-01-28T20:08:00.003-05:00

reach out

nami new york state
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Support Group Info

2009-01-24T18:35:00.002-05:00

Relatives support group meetings

with Ellis Hospital Psychiatry Department family support and education group
every Wednesday at 6 pm in room B-3 inside Ellis Hospital. Contact Kevin Moran at Ellis Hospital 243-4255 MAP.

Welcome to the NAMI Schenectady Blog

2009-01-24T17:39:00.000-05:00

Hello My Name is Roy Neville and I represent the Schenectady Chapter of NAMI (National Alliance for the Mentally Ill).

I have started this blog to not only inform members of what is coming up in our chapters events but to also communicate faster about issues affecting our community. I would also appreciate any and all feedback of any of my posts.