Friday, November 5, 2010

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

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

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

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

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

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

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

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

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

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

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

Thursday, October 21, 2010

NAMI needs to monitor programs, and it doesn't

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

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

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

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

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

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

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

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

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

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

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

What happens if Medicaid is cut back?

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

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

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

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

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

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

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

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

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

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

Medicaid facing the axe

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

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

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

Friday, October 15, 2010

SAMHSA has let us down—Part Two

This agency discovers public relations and “social marketing”

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

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

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

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

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

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

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

SAMHSA has let us down—Part One

When government becomes a reformer

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

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

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

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

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

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

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

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

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

Wednesday, October 13, 2010

Under fire, NAMI tells where its money comes from

But why didn't it used to do this?

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

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

Transparency is something new

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

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

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

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

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

The political and ethical sides

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

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

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

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

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

In defense of recovery—and some objections

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

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

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

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

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

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

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

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

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

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

Tuesday, October 12, 2010

Drug makers take big hits over their schizophrenia drugs

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

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

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

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

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

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

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

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

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

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

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

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

Friday, August 20, 2010

Schizophrenia? They call it behavioral health now

What does that mean?

Did you notice the behaviorists are changing the vocabulary on us?. The nabobs at the head of our federal mental health establishment like SAMHSA (substance abuse and mental health services administration) are now using the term “behavioral health care” to mean serious mental illness along with addictions and lesser mental problems. When the term is used to lump together mental illnesses like schizophrenia with substance abuse it indicates we are mainly looking at behavior and that isn't the central point about schizophrenia. Treating the illness is. There must be something behind it.

I suggest policy leaders at SAMHSA and the doctors and researchers and think tanks they do business with have invented the new behavioral health care terminology as cover to hide a variety of sins. They haven't had much success with solving the problems of schizophrenia and how the brain works in the research field. Both community and hospital care for the mentally ill are getting too expensive to go on growing indefinitely. And there's a flap all over the country about over-drugging children and over-medicalizing the treatment of serious mental illness in adults that has more than its share of critics.

Otherwise why would they call treatment of mental illnesses like schizophrenia “behavioral health care”? Surely the two concepts are separate and can't be combined. But they use the two interchangeably.

Look at the stuff they are putting out. SAMHSA is promoting the mental health patient recovery movement, the idea that even people with schizophrenia or bipolar disorder or severe depression can recover, perhaps fully. It wrote a release recently to announce it awarded grants to five national behavioral health care provider associations to hasten adoption of recovery-oriented practices in the delivery of mental health services. Two of them are the American Psychiatric Association and American Psychological Association, sure to benefit from the booming business ahead. Why would SAMHSA refer to them this way?

The NY State commissioner of mental health, Michael Hogan, uses the term, too. In an article in the National Council for Community Behavioral Healthcare's recent issue, he writes, “the general health sector, without our help, is incapable of reliably delivering good behavioral healthcare. We see this across the life span in care for depression.” What? Hasn't the psychiatric profession relied on general practitioner doctors for a century to treat ordinary depression in their patients?.

The National Association of Community Health and Developmental Disabilities Directors claims to be the national voice for county and local behavioral health and developmental disability groups. Its aims are to improve behavioral health services. Dr. Ron Mandershein, director of their group, asks members: “Will counties become the locus for a behavioral health/medical health home? That would be a kind of one-stop service center for people with mental illness and substance abuse problems.

A related group called ACMHJA, the College for Behavioral Health Leadership, held a summit recently for national behavioral health leaders, meaning those in mental health and addictions treatment.

Milbank Memorial Fund has issued a report on integrating primary care and behavioral health care. It speaks of “coordinated care services delivery models—those that connect behavioral and physical health.” It doesn't mean just drug addiction services—they're combined with mental health care plus general medicine in their usage..

The trouble with the combining form is that historically, behavioral health has referred to substance abuse and addiction, not psychiatric health. It has to do with people's behavior, not the illness itself. And while people with serious mental illness have some odd behaviors indeed, the focus is on the symptoms themselves and the services that doctors and medicine and organized systems of hospital and community care can afford this population.

Now, people with drug addiction can be sick, too. They need medical care and counseling and the rest. But their condition, for most of them, is volitional—they take drugs, abuse drugs, commit crimes for drugs, wind up in jail and prison for drugs, and can get off drugs and get clean if they want. A smaller number, I believe, has a greater propensity for being addicted to drugs than other people. This appears to be genetic and is also the product of their environment. We live at a time when illegal drugs are often available and people have the freedom to take them. However, like being obese or smoking cigarettes, taking drugs is a liberty that can be abused and costs the rest of us a high price.

The people with a schizophrenia don't think of their illness as volitional. They didn't bring it on themselves. It's stigmatizing and cruel. It's in a separate world from the addictions recovery business. (Roy Neville)

Monday, August 16, 2010

Why take a job?

Too much hype about jobs and recovery being promoted by PROS

PROS (personal oriented recovery services) as we know now, has three components and a clinic part to it—comprehensive rehab, intensive rehab and ongoing rehab. The first seems the most flexible to its adherents, letting people with mental illnesses and behavioral problems sign up for stress management and living skills and symptom reduction courses, for example. The other two are job oriented—teaching how to get a job, assisting in one's training and placement, and following up to see he or she stays in the job once landed.

The central idea is to expose people with serious mental illness to the world of work, to force them to focus on their own recovery. And that means for most of them, becoming capable of holding a job of some kind – the PROS minimum is 10 hours a week—but better still, it is to earn them a place in the competitive work world, working over 20 hours a week at a fulfilling job that will make them more self reliant and independent citizens

Now, people say they do want to work. That's okay--we already have existing opportunities for jobs that are part time and temporary. From what I read, PROS designers want more than that. They want these denizens of “smoking and rocking clubs” as one of them puts it, to wake up and go get themselves a real job with good wages and full days work. One wonders if they have any idea at all what serious mental illness is all about.

And if these managers disregard the barriers that someone has with mental illness—like distraction and relapse and sedation from the medicines they're taking; or persistent physical ailments, sleepiness, moodiness, anger—what can we expect from them?

Instead of offering some creative job ideas like apprenticing people in a trade or sending someone to a community college for courses that are tied to a specific job and employer, PROS will put people into the classroom to learn about work in general. The consumers are tired of resume writing and someone asking them what they want to do. PROS won't improve on affirmative businesses that employ consumers now and really do teach job skills and savvy in a protected environment, like Pie in the Sky Bakery in Albany. It has operated for over 30 years. People at RSS say it will have to be restructured to qualify it to continue as a PROS. If it's been good enough to serve hundreds of people until now, why does PROS even want to change it?

And our local providers employ quite a few of the consumers in their programs in-house to answer the phone, do business office functions, drive trucks, clean the rooms. These may need special dispensation from the state nabobs to continue if Reinvestment and Community Support Services funds vanish. With VESID funding, RSS and Northeast Career Planning have trained and placed people in outside jobs and coached them, along with the OMH. This arrangement should survive but it too, may change under federal rules for Medicaid participation. We also have peer assistants who work with patients inside Ellis Hospital and there are bridgers who do liaison work for patients coming out of hospital in other areas.

These jobs don't usually jeopardize social security benefits because people have been counseled and they work fewer hours to stay below the dividing line. That is why they are successful holding these jobs but there is great pressure for them to earn more and give up their benefits.

What the PROS designers want to do is take some of the seriously ill people off the social security rolls altogether. The state and federal agencies have been trying to do that for at least 15 years. They keep rolling out programs like “1619 b” under the Social Security Act and the “Pass” program and “Ticket to Work” under federal labor law, and now “Real Jobs” strategies involving a private employer. Those who are behind these urgent programs dreamed up in Washington want to believe everybody can work and uncomfortable symptoms like hallucinations and delusions, or inability to form speech quickly or avoid distractions in the workplace, are easily overcome.

This is the stickler—it's why in my opinion the push by the PROS enthusiasts to prepare people for paying jobs comes with too great a risk for most of them. The evidence is that too many of the ones with serious mental illness who enter the labor force using their skills and training will have difficulty making it or won't make it and they will lose their benefits. It's not just at the outset, it's what they face along the way, after they've been working for some time and find their illness doesn't disappear. It may recede and be manageable most of the time, but too many in this group have tried working and kept at it for some time and find their illness haunts them over a lifetime. At some point it recurs to the point they can't work and they find they're out of luck, they've lost the safety net.

Of course, it's a personal decision of the individual whether to take a regular job and lose out on benefits. Other workers make a similar choice. For the truly job-capable, it's always been worth the risk. They take their place in society. But for most of the others, it's a poor gamble. Look at the record—very few people with schizophrenia or bipolar disorder or chronic depression hold one of these jobs for any length of time. They would have to have some outstanding characteristics, like computer skills in high demand, and a lot of brains and determination. But even they will exasperate employers by suddenly taking days off or acting socially distant in the office or showing some other behavior that sets them apart. Even job coaches don't help this.

We forget sometimes how hard it is to learn job skills. It takes repeated study in the classroom and practice on the job, and some training courses are far too tedious for people with these disabilities. Someone who hasn't worked for a long time or doesn't possess the energy to focus on the school work isn't going to make it. They have to learn to do it right and they are not used to preciseness in their lives. We should be realistic. Even where there are openings for good jobs, like practical nursing, the training may be too difficult for this group. It's much easier to stick to part time, less demanding work.

And on a simple note, the economy itself is defeating. If people without disability can't find a job after months and years of trying, how can we expect someone with serious mental disability to find one? It's another reason why PROS designers should back off and stop trying to push people into competitive jobs that don't exist. (Roy Neville)

Thursday, August 12, 2010

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

When we blocked State Street with hospital beds--1991

March 1991—We hatched the idea with great glee. We would get four heavy metal hospital beds, place them side by side across State Street right opposite the Capitol entrance, put four patients in them with pajamas and robes on, and block traffic on the street. On March 5 I drove up to Angelica Laundry in Ballston Spa and picked up several hospital sheets. Someone appropriated the beds. I borrowed blue johnny suits and robes from Ellis Hospital. That night lawyer Van Zwisohn told us how to react when blocking the road next to the Capitol and the mounted police charge us to break it up. He said, go limp—it will cost you $150 in court if you go limp. If you resist it will cost you $250 and you can face jail time. He showed us how to go limp and that was it.

And we did it. The beds were rolled out at the rally and everyone wearing the johnnys and robes scurried to their beds. I thought Carol Saginaw the fastest woman in the world because she flashed by me in an instant, ducking under the banner we held across the street and up to her assigned bed. The cops did break it up some time later. They were grouped on mounted horseback at the intersection ahead of us after Arnold Gould asked them to hold off a few minutes. We pulled the beds back and wrapped up our signs and put the johnnys in a pile. Harvey R gave them out to some of his people after I had promised to return them to the hospital, which left people at Ellis very unhappy.

February 2, 1993—The little jail on the Capitol lawn—in January we were going to follow the beds in the street gambit with something equally brash. We came up with a theme park idea for the winter rally where we would build our own buildings to look like a jail and group home and hospital and put them on the Capital lawn. The jail was the centerpiece, to draw attention to the poor treatment our family members received. Carol had a friend with enough construction skill to lead the effort. We had work parties at the office and in somebody's basement to hammer and saw and put the structures together out of scrap lumber and heavy paper and paint. The theme park took place on the Capitol lawn Feb. 2 with the little group of buildings set just off the steps on the grass, painted with doors and windows and signs on them if I remember correctly. It was quite a triumph.

Early in the '90s the AMI-NYS board meetings were lively and the board members were characters. Two or three people definitely dominated the talk and complained if the president tried to cut them short. Vera H came from NYC and felt strongly that we should press more advocacy. When the OMH commissioner passed the word that Vera was calling him up every day and it had to stop, we politely asked her to back off. She objected, saying she would do the dirty work and we could mop up after.

We didn't always get along so well on the board, coming in from all points around the state, some with our own agendas. At one session, DJ put his boots up on the table we sat around and wouldn't remove them. Jerry Klein raised a point of order to ask DJ to remove his boots, saying it was undignified. He refused. We asked politely, then more firmly—to no avail. We took a vote but this didn't help either. Finally we said we would get a policeman. The boots came off the table and we went on with the meeting. There was another time when the ballots for election of board members were hijacked in NYC and we had to cancel the election. Someone had collected the ballots for others and voted fraudulently.

1995--The AMI boss who slept at his desk gets a phone call

This is Joe Gentile's story. Joe was president of AMI NYS in 1994-and 95. Joe is a no-nonsense guy, a long time labor negotiator, a tanned, beefy man who still plays rounds of golf twice weekly and flies off now and then around the country to do his flings as a labor-law arbitrator. “It's like taking candy from a baby,” says Joe in his gruff voice. “I don't need to do this anymore but they keep calling me up.” I bumped into Joe and his wife, Peg, both Syracusans, in March last year when we drove by along the Gulf Coast. They had their two grown grandsons there. Joe says, “They're out all the time looking for skirts.” Joe doesn't like fool-arounds, nincompoops and malcontents and that's what led to the phone call. Not that our newly hired executive director, Frank A., was any of these but his behavior left him open for a pretty quick body slam, only a month or two into his tour of duty with AMI-NYS

Frank had not long before been hired by our gullible board of directors. His was simply the best of the resumes we had at the time and Frank in the flesh could spin a story around our novice ears with ease. He convinced us he could call up the mayor of NYC, Ed Koch, or the bishop of the Diocese of New York City, or Governor Cuomo himself to get help for our beleagured AMI, desperate for greater recognition. Frank didn't have a clue about running a program whose constituents were families with mental illness, it became apparent. He had to ask us about everything. He had held down a sinecure at the NYC board of education and we never figured for a minute he couldn't do what he said he could.

For a month or so we wondered what Frank was doing. We didn't see things getting done. We began hearing rumors from the state office higher ups that Frank has been saying strange things to them. Joe got wind of it and on more than one of his trips in to the office in Albany he caught Frank head down asleep at his desk. Not good. Joe went off to the annual NAMI conference in Washington, where he picked up the phone and told Frank he was canned. No ceremony here, just move your stuff out and get out. That was all there was to it. You don't usually end these things happily but it happened quick that time. Frank walked out and wasn't heard from for a long time.

Glenn Liebman and the baseball bats—In the early 1990s, Glenn was on the AMI staff with Carol Saginaw and later became our executive director. He conceived of going into the Legislature and handing each of the leaders a toy baseball bat bearing a message written on it in tape, I think, such as “keep the promise” and “save community mental health.” The governor got a bat, too, and they became famous. I think there was a similar awareness campaign inspired by Glenn and aimed at lawmakers another year with miniature basketballs, on a theme of “March madness”, but I can't recall exactly.

Passing out pizza pies for parity—this was Glenn's idea, too, in the mid-'90s. He had a pizza pie with a missing piece delivered to each of the legislative leaders' offices once a week during session. That signified the missing mental health benefits in health insurance coverage. Soon after, Senate leaders issued an edict we couldn't do this because it was bribery and against ethics laws. We pulled back the incriminating pizzas. Not until 2007 did Timothy's Law make the cut, creating parity for mental illness coverage in health plans in NYS. But the struggle to achieve this took 20 years.

On the insurance issue, it was way back in 1987 and 1988 that we met with then deputy insurance superintendent Jim Clyne and allies like Dick Gallo of the Psychiatric Association to urge better mental health benefits. Some insurance plans left out these benefits altogether. A proposed regulation came out that called for 60 days a year in a hospital bed for serious mental illness and 20 days outpatient visits. But during a public comment period, the insurance industry knocked this back to allowing 30 days inpatient and 20 visits outpatient, and those are the benefits that have existed for almost 20 years in most of these plans, until Timothy's Law finally kicked in. That's a 20-year itch. (Roy Neville)

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

Mid-1980s-forward--Some bruises along the way as AMI NYS asserts itself in Albany

September 21, 1985—I went to annual conference of AMI-NYS at Holiday Inn in midtown Manhattan (I think it was just renamed Days Inn at the time). I stood outside the main meeting room with a psychiatrist, Dr. Bill Turner, from Long Island, who told me his theory that a marker for schizophrenia was baldness in the father. So when we finished I looked through the porthole window into the meeting room and looked over the sea of men, mostly older, white haired, paying attention to the speaker--and almost none was bald. I meant to tell the doctor afterwards. You never know.

About 1986--AMI Action and the fire in the trash box--this was a subgroup, not a regular affiliate in Albany, that met at this time and was partly subversive of the AMI NYS board of directors. Led by Gerry Comfort, they planned advocacy with less restraint than the AMI board. They wanted to attack every evil imaginable—the mail system, unemployment, several agencies of state gov't not closely related to mental illness, the health dept., insurance, drug abuse agency, etc. They called for direct action and came in conflict with AMI board policies. Once when we on the board were in a meeting with Cmr. Surles, Gerry lit up the annual report of the NYS Office of Mental Health, set it afire and put it in an outside trash box near the building. That took the cake. Cmr. Surles asked me if I needed an escort out of the OMH building because of our “disobedient, raucous” colleagues with AMI Action

October 5, 1987--Prayer walk comes to grief in the snow--Harriet Comfort organized the prayer walks (marches) in the 1980s and into the '90s that AMI members paraded in. Mame Lyttle remembers them: Bishop Hubbard and Episcopal Bishop Ball proudly marching by the Capitol at the head of followers paying respect to those suffering from mental illness. Sudden snowstorm the day of the march, Oct. 5, forced its cancellation. Nobody imagined a deep snow that early. Chris Carabateas, an activist who lived out in Nassau, had no electric power for a week or more, as the lines were down that long.

Court suit over High Tea 1987—Harriet lost a bid to be president of AMI NYS in 1987 and so quit the board. This falling out led the board to sue over her refusal to grant AMI a share of High Tea funds that year. Both sides got lawyers who did little but wrangle for a year. At one point William Snavely, AMI national president, a former Navy admiral, I think, came to Albany to solve the dispute. He went home with no luck at all for a reconciliation. Our suit ended in stalemate, with no satisfaction to either party. And it led to disaffection against AMI by several local affiliate members that lasted over 10 years.

In Feb. 1988 at a rally in Albany we were to release dozens of green balloons together high over the Capitol as a sign of unity, at the end of speeches that day. Every now and then someone would lose grip on the balloon and they began sailing one by one up in the sky while speeches went on and we all admired the show.

1988--An early foray into the legislative chambers to make our case. Went to see Joe Lentol, a Brooklyn assemblyman,who had his staffer, Joe Giamo, meet us. We got through 15 minutes telling this fellow all about us and what we do and the staffer asked: What army did you say you were from?

March 2, 1989 I was called in by Carol Obloy, AMI's first OMH contract officer, and signed a three year deal for AMI to set up business in Albany. I had taken over the presidency last fall from Phyllis Gerber, the long time leader with Muriel Shepherd who got AMI going in the early 1980s .That was our big move to respectability in Albany, to have a home after previous board meetings around the dining room table in the Gerbers' home and in a conference room at RSS headquarters.

Our job was to bring all the local AMI support groups together, do outreach and education to our members and the public and raise public awareness about mental illness around the state. It was a magnificent moment. We rented office space from the Mental Health Association in Albany County, then headed by Brian Klim, who actually designed our rooms on the second floor of the former car dealership at 260 Northern Blvd, off downtown Albany. NAMI is still there. We could walk to and from the Capitol and state Legislative Building from there and had allies in the building from the start—the mental health association, ACCLAIM (now ACL), headed by Steve Greenfield, and Potpourri consumer social club downstairs run by Harvey Rosenthal, which is still there.

We were to hire a director and secretary and equip their offices with a desk and soft chair; buy two IBM typewriters, some plain tables and side chairs for meetings and to fill the rooms up. On April 7 John Rosebrook and I bought tables and chairs at BJs Wholesale Club, carted them in the back of his van and lugged them upstairs to the office. We leased an early design copy machine that broke down repeatedly. We hired a secretary who couldn't type and was soon fired. We interviewed Carol S for executive director and she started work March 27. We soon hashed out strategies for political action with our new-found allies.

September 16, 1989—The famous jazz concert that flopped—At the same time that we're getting going in Albany we signed on to sponsor a jazz concert at the Palace Theatre in Albany as a fund raiser. This was led by Jean Shaw who had helped Capital District Psych Center the year before and presented herself as a grand impresario. She gathered a team and with our support signed up major bands like the Duke Ellington quartet, (and was it Count Basie?), plus a leading female jazz vocalist whose name escapes me, and the Shaws, a local piano duo. She had us solicit AMI members statewide to buy tickets at $25 or more apiece, estimated to bring in over $50,000. This was coupled with a black tie dinner at the Hilton Hotel downtown Albany on Sunday night with the commissioner and other luminaries there. The week of the concert there were fewer than 100 tickets sold and we cancelled at once, despite having paid the big name band and woman singer thousands of dollars up front. We did hold the black tie dinner and came out about $20,000 short, as I remember. Just got burned, that's all.

The characters we met—Jesse Nixon, director at CDPC. Really a nice man. But one wonders. Once he punched out a pizza delivery man outside the front door of the hospital. Pizza man had him arrested. I think he pleaded guilty, and walked. Jesse had a few more run-ins later on in his long tenure there.

And our own staff at AMI were mostly good souls, some young and untested, none of whom was paid a lot. A young man and woman worked together for us and soon were married. He had exceptional computer skills and left to work his way up at state OMH to become head of their research. Another, Ruth Foster, has become a top lieutenant for Families Together, working for childrens mental health in Albany. John N lost his wife to illness suddenly and had to leave us. Then again, a fellow we hired as secretary was caught walking off with some of our office equipment and we had to fire him. (by Roy Neville)

Saturday, August 7, 2010

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

The fact is, electroshock therapy may be the most important treatment we have. Why does it divide consumers (who call themselves patients/survivors on this issue) and families so badly about its use?

Electroshock therapy (ECT) is the treatment of choice for many psychiatrists, when medicine and psychotherapy have failed, for someone suffering from severe mental depression or schizophrenia who is in the most urgent circumstances.

Its power, I believe, comes from the recognition that this is the last resort. It's the one thing that can pull you through, as nothing else can, when you're suicidal and seem possessed of demons. Parents have watched their teenage or adult child spiral downhill in a hospital bed to literally go out of their mind, refuse to eat, become thin as a rail, talk crazy, spout religious fantasies, and not know who they are.

Yet it's still as controversial as lobotomies—sticking needles into your brain. (Did you know they still do that in some circles?) ECT consistently draws a violent reaction from the more vocal members among the consumers, some of whom have personally experienced its effects and felt they were injured. Usually they claim loss of memory or thinking ability or changes in personality and while some of these things may have happened, these functions are known to return. The early radicals who underwent ECT are vocal enough to enlist their followers to continue this line of resistance, however.

Nobody likes to mess with the brain physically, only doctors who are trained in electroshock procedure and its anesthesia, and they want to say it's safe. The rest of us can only imagine what it's like to have clamps slapped on the sides of your head and then be hit with a powerful surge of voltage that shakes the head violently. That's too close to the imagery for violence in an electric chair, and none of us wants to entertain those notions.

These consumer groups repeat the dangers of injury from ECT as if they are legion but rather in modern treatment we find they are very rare, if they exist at all. In the old days procedures were not the same as today, and those administering the shocks wouldn't have been as properly trained nor would the equipment be as safe. But that isn't the case anymore and the evidence is overwhelming that the procedures are safe and effective.

ECT--electro-convulsive therapy--has a checkered past, as most people know, lumped in with lobotomies and other pre-modern medical strikes to try to cure the thinking of madmen and madwomen. In its modern form it's nothing like the early versions that did indeed have victims and created the myths about it that have raised the ire of legions of consumers and their allies.

But this is one of the most useful therapies known in psychiatry, fully established and blessed by the medical establishment—the doctors' guilds (APA and AMA, etc). It's seen as safe and dependable, practiced in numerous hospitals by numerous physicians armed with the latest knowledge and technology about its use. Never mind that they still don't know exactly how it works.

It gives the brain a shock, much like forcing a convulsion, which hardly seems like painless therapy. There is a sudden excitation of brain waves and aftershocks, like the succession of tremors that hit Haiti after the quake. The shocks are administered in a series of up to eight or 10 over two weeks or so, but spaced out, not right on top of one another.

The person being tested is often someone with severe symptoms of depression or schizophrenia for whom medicine has failed. Others take ECT on a maintenance basis; they periodically relapse, receive ECT, and almost miraculously perk up—the evidence supports this.

Despite the evidence, consumers can't get over it. Last September a coalition of patients/survivors in Brooklyn launched a nationwide call to action against forced mental health treatment including drugging and electroshock therapy. They tie these to outworn forms of the medical model of psychiatry, which they find coercive. And anything coercive is too much for them. They demand the right to reject what is imposed on them by doctors and to make their own choices. But isn't this foolish if someone is so sick they are out of their mind, suicidal, unable to appreciate what they doing or saying?

Finally, it appears the leader of the statewide mental health consumer movement in NY, Harvey Rosenthal of NYAPRS, has taken a softer stance. In the love and hate war of words over electroshock therapy, Harvey wrote to the US Food and Drug Administration last January that the consumer movement doesn't oppose ECT any more, after decades of disagreement over this issue. They just want regular inspection of the equipment used and a ban on its use for children and the elderly.

Hear, hear! No blanket condemnation! Don't tell me they have come to their senses. But is the old guard still spouting the same old tales of woe over their treatment at the hands of doctors who ordered ECT. Maybe the organization is marching to a different drummer on this one, thank goodness. (Roy Neville)

Monday, August 2, 2010

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

There's a man who has written a book about shyness and contends it's a normal human trait, not a mental illness

There's another book out about sadness, feelings the author says have been associated throughout history as a normal reaction to loss—not the finding of modernists who want it labeled a mental illness.

How about binge eating...temper tantrums...gambling—are they mental disorders?

And then we have hoarding, compulsive shopping, alienation from parents, sex offenses. Where did these all come from?

It's really baffling to onlookers and to those with some of the kinds of odd habits like these afflicting humans. People don't get treatment who may need it. Does the medical profession have it all down straight?

They think they do—at least the American Psychiatric Association does. Shyness, sadness and a few other common traits and habits are said to be getting a working over in the new Diagnostic and Statistical Manual of Psychiatric Disorders (the DSM-V, not issued yet), and it's stirring the juices.

It's important for the people developing the DSM-V to get it right because the document is used by the mental health establishment when treating patients and helps insurance companies decide what disorders to cover. It serves as well as for clinicians, courts, prisons, drug companies and agencies that regulate drugs.

And you would think someone with these conditions wants to know if he or she is normal or less so. The book by Christopher Lane, called “Shyness,” exposes efforts of the big drug companies to have shy people view themselves as mentally ill. He shows how drug company ads have manipulated this to turn ordinary shyness into social anxiety disorder., something of a national emergency.

And another book, “The Loss of Sadness,” by Allan Horwitz and Jerome Wakefield, finds that sadness is often wrongly judged as depression, a diagnosis that has now become epidemic around the world. “Those judgments fail to distinguish between major depression, devastating to its sufferers, and lesser episodes of sadness,” they argue. “Episodic sadness has always been a socially approved means of adjusting to misfortune and much is lost when it is misread as a depressive disorder.”

What's in a diagnosis anyway? Is it something that hits you once or twice or does it have to happen often enough to lay you flat—change your personality or mood or outlook on life? Feeling blue now and then is not the same as depression. The new DSM-V is said to have nine symptoms that go along with that and weighs them as to seriousness, but even this is criticized as not faithful to reality.

There must be pressure from drug companies to add fringe diagnoses into the big book and from insurers to keep them out. The draft document is reported to leave out obesity as a formal diagnosis, as some have proposed. Obesity, you can argue, is metabolic. And it appears to be definitely a medical problem. But no-go in the big book.

They once called cigarette smoking a mental disorder. I suppose much the way marijuana smoking is thought of as an addiction. So--What's addictive behavior and what's a mental disorder?

Not long ago the NAMI NYS board of directors was confronted with the issue of the state putting sex offenders in with mental patients in some of the state hospitals (which they still do). The members wanted to object to this but weren't sure if sex offenders basically had an addiction problem or a severe personality distortion (or both). Some thought these offenders should be put in drug treatment facilities, not the hospitals, but this didn't happen. It's still not clear about sex offenders.

Internet addiction doesn't sound like a medical problem but it could be like other compulsive habits like gambling and binge eating or anorexia. These and other obsessive-compulsive habits are given sway in the DSM. Then there are “night people” who compulsively stay up at night and can't go to sleep and who don't seem to qualify as mentally unsound. Their brains would seem to not be working just right either.

Now sex addiction gets us into some serious business, even if it's not criminal behavior. There are a variety of these disorders already listed in the big book but until they go off the end of the scale, there doesn't seem to be much the docs do about them. People with these disorders deserve help and counseling. Some are sex offenders and some are child molesters who get hounded by fellow citizens, driven from neighborhoods and live with the scarlet letter of shame on them for much of their lives.

On this topic there's a common habit called masturbation, that upsets people when they think it might be mental illness. Here's an illustration: This guy comes up to me and says he has a mental illness he can't get rid of. “What mental illness is that?” I asked. And the talk came around to the fact he masturbates a lot. “What makes you think that's mental illness?” I asked. “I know it is because I can't get it out of my mind; it's a habit and it keeps coming back every day over and over. I'm not normal and this is mental illness. Do you know anybody who can treat it?” he responded

“Yeah,” I said, “it's not mental illness. It's just nature. You're like everybody else. You have a habit you can't get rid of, so what? The difference is that we're all weak and lead imperfect lives and will fall short in some things and feel we might have something wrong.

“You want to talk about an illness—think of schizophrenia. It hits you like a bomb—you'll know when it hits you. And you don't get a little schizophrenia—it's like pregnancy. You either got it, or you don't." (Roy Neville)

Thursday, July 22, 2010

recovery in psychiatry--part 3

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: (Roy Neville)

Recovery in psychiatry--part 2

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)

Wednesday, July 21, 2010

Recovery in psychiatry--part 1

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)

Sunday, June 6, 2010

Why PROS won‘t help people with schizophrenia

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)