Some quick articles
Dec. 26th, 2011 01:30 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
conulySounding Quiet Dissent About a Holiday Perennial
Bil Browning and his boyfriend were homeless. To protect the identity of the boyfriend (now ex-boyfriend), Mr. Browning will not say specifically where, just that it was in “southern Indiana,” about 20 years ago. But he is very explicit about who refused to give them shelter.
“The Salvation Army refused to help us,” Mr. Browning recalls, “unless we broke up and then left the ‘sinful homosexual lifestyle’ behind. We slept on the street, and they didn’t help when we declined to break up at their insistence.”
Mr. Browning’s boyfriend was wearing a “Silence = Death” AIDS pin on his jacket, which must have tipped off the Salvation Army worker. “He told us we needed to be saved,” Mr. Browning says. “If we were willing to attend church services, he could help. We would have to break up, only one of us could stay in the shelter, and if there was room for the other, he would have to be on the opposite side of the room, and we wouldn’t even look at each other.”
Now Mr. Browning, a writer and gay rights advocate, is using his blog to publicize a decade-old boycott of the Salvation Army. The boycott’s proponents say those who drop money into the Salvation Army’s ubiquitous red kettles at Christmastime, or shop in its thrift stores, often know little about the organization’s evangelical Christianity, its opposition to homosexuality, and its occasional attempts to influence public policy on gay rights.
On his Web site, Mr. Browning, whom the Christian magazine World recently called “the Red Kettle Menace,” encourages people to donate instead to other organizations, like the Red Cross or Doctors without Borders. When he passes by the red kettles, he sometimes drops in pieces of imitation money that he says have circulated among gay activists for about 10 years.
One version of the money looks like a real dollar bill, but its (obviously fake) denomination is three dollars, it carries a rainbow flag, and it bears the words, in small print: “When the Salvation Army ends its policy of religious bigotry and discrimination against gay, lesbian, bisexual and transgender people, then, and only then, will this be a real dollar bill.”
Greg Henchar, a Floridian who with his partner runs Rainbow411.com, a gay-friendly business directory, says he created the $3 bill a year ago. The blogger John Aravosis has published on his Web site a similar piece of red-kettle literature — he does not know who created it — that says “Voucher” across the top and begins, “This holiday season I am supporting organizations that do not discriminate in any way.” And about a dozen YouTube videos promote a Salvation Army boycott; the most popular, posted over a year ago, has been watched over 100,000 times.
The Salvation Army originated in a series of revival meetings led by the Methodist preacher William Booth in 1865, in the East End of London. Booth left the institutional church because he believed it did too little for the poor. Today, the Salvation Army operates in 122 countries, offering services including drug and alcohol rehabilitation, shelters and soup kitchens. Although Salvation Army missions lack many trappings of Christian churches — they do not offer communion, for example — they house nondenominational worship services, and their treatment programs rely on the Bible.
The Salvation Army’s “Position Statement” on homosexuality, found on its Web site, reads in part: “The Salvation Army does not consider same-sex orientation blameworthy in itself. Homosexual conduct, like heterosexual conduct, requires individual responsibility and must be guided by the light of scriptural teaching. Scripture forbids sexual intimacy between members of the same sex. The Salvation Army believes, therefore, that Christians whose sexual orientation is primarily or exclusively same-sex are called upon to embrace celibacy as a way of life.”
The Salvation Army does not employ registered lobbyists, but its leaders have occasionally made news by meeting with government officials. In 2001, The Washington Post obtained a Salvation Army document that said the administration of President George W. Bush had promised to honor a Salvation Army request: that religious charities receiving federal money be exempt from local gay antidiscrimination laws. The day the request became public, the Bush administration said it was being denied.
And in 2004, in response to a City Council ordinance requiring that organizations with city contracts offer benefits to gay employees’ partners, the Salvation Army threatened to stop operating in New York City. In 2006, the New York State Court of Appeals ruled that Mayor Michael R. Bloomberg did not have to enforce the ordinance, which had been enacted over his veto; the Salvation Army never left New York City.
George Hood, a Salvation Army spokesman, said all revenue from Salvation Army thrift stores is used locally. But he said a small percentage of money dropped into the red kettles finds its way to Washington — where it helps to pay the salaries of politically active staff members like Mr. Hood. Every local unit pays 10 percent of its revenue to a state or regional division — there are 40 divisions in the United States — and every division pays 10 percent of its revenue to one of four national territories, each of which foots a quarter of the national budget.
In other words, of a dollar dropped into a red kettle in New York City, a quarter of a penny ends up at national headquarters, where conversations with the government — not lobbying, Mr. Hood says — may take place.
Despite the boycott, the red kettles have had three straight record years for fund-raising, Mr. Hood says. As to the complaint of discrimination based on sexual orientation, he says it is against Salvation Army policy. “If they were legitimate clients looking for food, they should have been helped,” he says of Mr. Browning and his ex-boyfriend.
In a statement sent by e-mail later, Mr. Hood adds that “gay couples are to be treated in the same way we treat heterosexual couples.”
“Whether they are provided overnight lodging,” he says, “is determined solely on capacity and availability of beds.” Most beds in Salvation Army shelters are for men, but the Salvation Army has “been going through a transition of facilities over the past several years to expand bed space for women and also to isolate some private rooms for couples, whether they be homosexual or heterosexual.”
Logging In With a Touch or a Phrase (Anything but a Password)
Passwords are a pain to remember. What if a quick wiggle of five fingers on a screen could log you in instead? Or speaking a simple phrase?
Neither idea is far-fetched. Computer scientists in Brooklyn are training their iPads to recognize their owners by the touch of their fingers as they make a caressing gesture. Banks are already using software that recognizes your voice, supplementing the standard PIN.
And after years of predicting its demise, security researchers are renewing their efforts to supplement and perhaps one day obliterate the old-fashioned password.
“If you ask me what is the biggest nuisance today, I would say it’s the 40 different passwords I have to create and change,” said Nasir Memon, a computer science professor at the Polytechnic Institute of New York University in Brooklyn who is leading the iPad project.
Many people would agree. The password has become a monkey on our digital backs — an essential key to our many devices and accounts, but increasingly a source of exasperation and insecurity.
The research arm of the Defense Department is looking for ways to use cues like a person’s typing quirks to continuously verify identity — in case, say, a soldier’s laptop ends up in enemy hands on the battlefield. In a more ordinary example, Google recently began nudging users to consider a two-step log-in system, combining a password with a code sent to their phones. Google’s latest Android software can unlock a phone when it recognizes the owner’s face or — not so safe — when it is tricked by someone holding up a photograph of the owner’s face.
Still, despite these recent advances, it may be premature to announce the end of passwords, as Bill Gates famously did in 2004, when he said “the password is dead.”
“The spectacularly incorrect assumption ‘passwords are dead’ has been harmful, discouraging research on how to improve the lot of close to two billion people who use them,” Cormac Herley, a researcher at Microsoft, the company that Mr. Gates founded, wrote in a recent paper. Mr. Herley suggested instead that developers try “to better support the use of passwords” — for example, by helping people protect their wireless connections from eavesdroppers. “Passwords,” Mr. Herley continued, “have proved themselves a worthy opponent: all those who have attempted to replace them have failed.”
The touch-screen approach of Professor Memon in Brooklyn works because, as it happens, each person makes the same gesture uniquely. Their fingers are different, they move at different speeds, they have what he calls a different “flair.” He wants logging in to be easy; besides, he said, some people find biometric measures like an iris scan to be “creepy.”
In his research, the most popular gestures turned out to be the ones that feel most intuitive. One was to turn the image of a combination lock 90 degrees in one direction. Another was to sign one’s name on the screen. In principle, the gesture can be used to unlock a device, or an app on the device that safely holds a variety of passwords.
Despite their resilience, passwords are weak, notably because their users have limited memories and a weakness for blurting out secrets. Most people need dozens of them, and they tend to pick ones that are so complex they need to be written down, or so simple they can be easily guessed. Recently, criminals have become adept at stealing passwords by sneaking malicious software onto computers or tricking users into typing them into an illegitimate site.
Companies like Facebook and Twitter have sought to address the frustration with passwords by allowing their usernames and passwords to open the door to millions of Web sites, a convenience that brings obvious risks. A thief with access to a master username and password can have access to a host of accounts.
Rachna Dhamija, a California computer scientist turned entrepreneur, sought to combat those weaknesses by breaking up the password. The user first logs in to the service that Ms. Dhamija built, UsableLogin, and signs in with her own partial password. Behind the scenes, the service verifies that the user is on an authorized device, and pulls the third piece from the cloud, generating a unique password for any Web site that the user wants to log in to — Facebook, for instance. In other words, one piece of the password rests with the user, another is stored in her device, and a third piece is kept online.
“You take a secret and you spread it across,” said Ms. Dhamija, whose service was recently acquired by Webroot Software, based in Broomfield, Colo. “You’re spreading the risk. The password is not stored in its whole form anywhere.”
But even if a user has been authorized at the start of a session, what if someone else gains access to her computer an hour later? Darpa, the Defense Department’s technology research arm, has invited security researchers to develop ways to verify a user every instant, based on the way the individual uses the machine — “for example, how the user handles the mouse and how the user crafts written language in an e-mail or document,” it explains on its Web site.
Each of these techniques is driven by the notion that a password alone is an insufficient means to verify online identity. Think of them as a fortification: a password-plus.
Many companies use a smart card or a security “dongle” — a small piece of hardware that plugs into the computer and functions as a key — as that second step of verification to allow access to internal networks. Today, biometrics — an individual’s unique physical traits — are emerging as an alternative.
At least a half-dozen banks in the United States ask their customers to verify who they are by reciting a two-second phrase to a computer over the phone, in addition to punching in their PINs. It could be as simple as “at my bank,” and a million customers could recite the very same phrase and still sound unique, according to Nuance Communications, a company based in Burlington, Mass., that makes the technology.
As mobile phones become bodily appendages for people worldwide, they too are emerging as instruments to verify identity. Google introduced its two-step process earlier this year. It sends a six-digit code to an application on a Google user’s cellphone to be entered, along with a password, when signing onto a Google account on a computer or tablet. The code can also be sent as a text message for those who don’t have smartphones, or it can be conveyed through a phone call.
The extra step is not mandatory, and the company will not say how widely it has been adopted. But as vulnerable as passwords are to theft and compromise, Google says, it is increasingly important for a user’s identity to be verified through another channel — a cellphone, in this case.
“I think we’ll start to see people using their mobile devices as their pervasive identifiers,” said Brendon Wilson, a security researcher at Symantec. “The password will no longer be the final arbiter that you are you. You will see layers on top.”
For Transgender Detainees, a Jail Policy Offers Some Security
For as long as she can remember, Maribel said, she has felt that she was different. She was born a boy in Mexico, and came to the United States at 16. Two years later, she started taking hormone pills and later underwent some operations to become physically the woman she always believed herself to be.
Maribel, 40, concedes she has long lived on the margins of society, never holding down a job and bouncing in and out of jail over the years.
In March, she was charged with retail theft and sent to Cook County Jail. Despite her shoulder-length hair, fuller lips and breasts, Maribel (who agreed to be interviewed on the condition that only her first name be used) was housed with male detainees.
“It was horrible,” she said. “Sometimes words hurt more than a punch. People can be very cruel.” After two weeks she was moved to the women’s division, where she remains while awaiting trial.
Also in March, Cook County Jail instituted a new policy for detainees like Maribel, who either identify themselves as transgender or are identified by the jail’s medical staff as having gender-identity disorder, the formal diagnosis for those who feel at odds with their sex at birth.
Under the policy, which covers procedures for housing, clothing, showering, grooming, medical care and other aspects of life in jail, a gender identity committee meets periodically to determine and review plans for each transgender detainee. Among the decisions the committee makes is whether the detainee should be housed with men or women.
Of the 60 or so transgender detainees who have entered the jail since the new policy took effect, only two — Maribel and another person who was born with male anatomy but identifies as a woman — have been housed with women, jail officials said. All of the others, who were born male but identify as women, are housed with men but have opted for protective custody and are kept separately from the other detainees, a choice available to anyone entering the jail.
Sheriff Thomas J. Dart said he instituted the new procedures when he realized that the jail — which holds an average daily population of about 8,900, primarily consisting of people awaiting trial — did not have a policy on how to deal with transgender detainees.
In one of his weekly meetings of jail officials, “when it came up, I asked around the room what everyone’s thoughts were on it, and there was a collective pause,” Mr. Dart said. “It just became clear to me that we needed to have a more affirmative position.”
Jails around the country are starting to address the difficult and sensitive issue of how to deal with transgender detainees. Lawsuits over their mistreatment have focused more attention on the issue. Another factor has been increased knowledge about the vulnerability of transgender detainees and inmates, in part due to the federal Prison Rape Elimination Act of 2003.
Randi Ettner, an Evanston psychologist who is chairwoman of the World Professional Association for Transgender Health’s Committee for Incarcerated Persons, said policies dealing specifically with transgender inmates are critical for protecting their safety and health.
“I’ve been in many other prison settings where patients who need and require medical interventions are ignored,” said Dr. Ettner, who helped the Cook County Jail staff craft their policy. “They’re inappropriately treated when they do receive treatment and, sadly, this has led to a lot of self-harm in prison systems,” including attempts to castrate themselves to rid their bodies of testosterone.
About 1 in 11,000 men and 1 in 30,000 women are born with gender-identity disorder, Dr. Ettner said. Treatment typically consists of psychological, hormonal and sometimes surgical approaches.
The issue is a significant concern for corrections officials because transgender people are more likely to end up in jail than the general population. A 2011 report based on a survey of 6,450 people described as transgender or gender nonconforming, sponsored by the National Gay and Lesbian Task Force and the National Center for Transgender Equality, said: “They are more likely to interact with police because they are more likely to be victims of violent crime, because they are more likely to be on the street due to homelessness and/or being unwelcome at home, because their circumstances often force them to work in the underground economy, and even because many face harassment and arrest simply because they are out in public while being transgender.”
Seven percent of respondents reported being arrested or detained in jail due only to their gender identity.
Sexual assaults are 13 times more prevalent among transgender inmates than the general prison population, according to a 2007 University of California, Irvine, study of California state prisons.
Transgender detainees are sometimes inappropriately placed in solitary confinement or mental health facilities in misguided efforts to protect their safety, experts said. Lack of access to hormone therapy, counseling and other medical services is another common problem for transgender detainees.
In August, a United States Court of Appeals upheld the right of transgender people to receive medical care while in jail, agreeing with a Federal District Court decision that overturned a 2005 Wisconsin law that prohibited doctors from prescribing medically necessary hormone therapy or sex reassignment surgery to inmates.
Harper Jean Tobin, policy counsel for the National Center for Transgender Equality, said that Cook County Jail’s transgender policy is among the stronger in the nation, along with those in Cumberland County, Me., and the District of Columbia.
Owen Daniel-McCarter, project attorney with the Transformative Justice Law Project of Illinois, which offers low-income transgender people free criminal legal services, said the most noticeable change at the jail is his clients’ improved access to hormone therapy, although some have complained that they have not received the right kinds of hormones or the right doses.
“The physical, mental and emotional effects of being pulled from hormones overnight is devastating,” Mr. Daniel-McCarter said. “People will go into suicidal ideations. It’s like going into menopause overnight.” For clients who have been taking hormones since they were teenagers and never went through male puberty, a cessation of treatment can be very difficult and result in irreversible changes, he added.
Although Maribel has never changed her birth name legally, she has gone by Maribel for 23 years. She said she was grateful that she had been transferred to the women’s division, where she has been working on turning around her life.
“I’m so glad somebody made the decision,” Maribel said, wiping away tears. “I’ve learned that I don’t have to do nothing I really don’t want to do just to please people. I know I can survive here.”
In Treating Disabled, Potent Drugs and Few Rules
Something was happening to Katie Strignano.
After she was moved into a state-run group home, the 26-year-old woman, who is severely mentally retarded, started gaining weight, drooling, breaking out in pimples and pulling out her hair, leaving a bald spot the size of a softball on her head.
Her mother, Debra Strignano, suspected that someone had increased her daughter’s medication without her family’s consent.
When she asked for a copy of a consent form she had once signed for her daughter, she discovered it had been altered, tripling the daily dosage of Clonidine, which is used to control attention deficit disorder. The drug, and four others her daughter was taking, have myriad potential side effects, including rapid weight gain, skin rashes and drowsiness.
In response to questions from The New York Times, state officials said they would investigate how the consent form was changed and whether Katie Strignano was receiving the appropriate dose of medication.
“Everything with them is, let’s sedate the kid instead of trying to solve the problem,” Ms. Strignano said. “They want to dope her up; they want her to sit there like she doesn’t exist.”
Tens of thousands of powerful pills created to treat serious mental illnesses like schizophrenia are given to developmentally disabled people in the care of New York State every day.
But a review by The Times of previously unreleased records, as well as interviews with state employees, clinicians, family members and outside experts, reveals that the psychotropic medications, which alter the brain’s chemistry, are often dispensed sloppily, without rigorous or regular review, by general practitioners with little expertise in the area.
And low-level workers at state group homes are frequently given discretion to increase the medication “as needed,” despite their lack of significant training.
Psychologists who have worked inside the system describe a culture in which the drugs are used to control the disruptive behavior of the developmentally disabled — people with conditions like autism, Down syndrome and cerebral palsy — an approach increasingly discredited in the field.
The problem is that people with mental retardation, because of their condition and diminished intellectual capacity, commonly exhibit symptoms similar to those seen among people who have impulse control, anxiety or attention deficit disorders.
Psychiatrists and psychologists interviewed by The Times said those symptoms were best treated through therapy and one-on-one guidance of the developmentally disabled. But state records indicate that the doctors are often instead treating them with the psychotropic drugs, which do not address their underlying problems and can be harmful.
“It’s a mistake,” said Dr. Andrew Levitas, an associate professor of psychiatry at the University of Medicine and Dentistry of New Jersey who specializes in developmental disabilities. “Using antipsychotics to suppress behavior is an old practice used by people who aren’t acquainted with the advances in the field.”
The Times review found that 4 of the top 10 medications or supplements given to the developmentally disabled in the state are psychotropic, according to Medicaid records. In fact, developmentally disabled residents of group homes in New York are more likely to be given Ativan, an anti-anxiety drug that has a tranquilizing effect, than multivitamins, the records show.
Concern about drug use was one of the most frequently raised issues in inspection records reviewed by The Times; in the last five years, all nine state residential institutions for the developmentally disabled have been repeatedly cited by Health Department inspectors for failing to provide proper oversight of psychotropic drugs.
The drugs can have serious consequences. Risperdal, the second most frequently prescribed, was developed to treat psychotic disorders and has been approved for controlling aggression among people with autism. But its side effects can be extreme, including breast growth in adolescent boys, which in a small number of cases require mastectomies.
And even the use of the drugs to control behavior is questionable. A 2008 study published in the medical journal The Lancet found that psychotropic drugs like Risperdal were less effective at treating behavioral outbursts than placebos.
Dr. Roy Q. Sanders, who is the medical director of the Marcus Autism Center in Atlanta and has worked in New York, said, “I tell people all the time that the medications are really blunt tools when it comes to making substantial differences in behavior in developmentally disabled individuals.”
To be sure, the issue is a complicated one: developmentally disabled people are more likely than the general population to suffer from mental illness.
But the records examined by The Times show that some developmentally disabled residents received psychotropic drugs without ever getting a clear diagnosis of mental illness. Even among those who have a mental illness, the records indicate that the state’s use of the drugs can be overly aggressive.
During the last few months, as The Times has sought information about the state’s use of medications, the Office for People With Developmental Disabilities has acknowledged that there are problems, and began to develop sweeping guidelines for the use of medication. The new rules say medications “shall not be used for disciplinary purposes” or “as a substitute for supervision.”
“We know that less intrusive techniques work,” said Courtney Burke, commissioner of the Office for People With Developmental Disabilities, which oversees thousands of group homes and larger state facilities.
Ms. Burke said her agency was developing software to track the use of psychotropic drugs better and was creating a position, a chief of pharmacy, to oversee how drugs are used. New regulations, she added, would “help move the system to one that does not rely on medication or physical intervention.”
The Clinician’s View
Diana Valitutto, a former state psychologist, said she resigned from the Office for People With Developmental Disabilities in 2004 after concerns she raised about the use of psychotropic medications were ignored.
While she said she believed drugs were justified at times, she added, “from my experience, they don’t make genuine permanent changes in behavior, they simply control the client for the time being.”
State law says that “no medication shall be used for the convenience of staff” and that “special attention shall be given to those individuals receiving psychotropic medication.”
But oversight is limited. Although psychotropic drug use is supposed to be regularly reviewed, records show those reviews are seldom rigorous. The bar is higher in Massachusetts, for example, where state officials must have the approval of a judge to use drugs classified as antipsychotic.
“It’s worked well to protect people with mental health and cognitive impairments over the years,” said Marianne Meacham, general counsel at the Department of Developmental Services in Massachusetts. “It’s somewhat burdensome, but it’s definitely an important protection.”
In New York, Ms. Valitutto grew so worried about the overuse of drugs that she went to the Commission on Quality of Care and Advocacy for Persons With Disabilities, a state oversight agency, with examples of residents on what she believed were overly aggressive regimens of psychotropic medications.
“I saw people being medicated to control behavior to such a degree that to me it was obviously and clearly affecting their health, their safety, their quality of life, their ability to participate in the daily activities of living, and in some cases threatened their lives,” Ms. Valitutto said.
Ms. Valitutto said there was little consistency in how drugs were used: In central New York, she said, they were dispensed carefully and ethically. But that was not the case in the Albany area. A retired state psychologist who was approached independently by The Times vouched for Ms. Valitutto’s professionalism and offered a similar account, saying the residents in that region were often treated with multiple medications from the same class, a practice discouraged by the medical establishment.
“We would always go to drugs,” the psychologist said. “Once you get a client on a lot of medications, it’s hard to know what’s working and what’s not, and it’s hard to get them off.”
The commission, which declined to comment, never took any action on the concerns brought forward by Ms. Valitutto, and she resigned.
A Chronic Problem
Every year, the State Health Department inspects New York’s nine large residential facilities for the developmentally disabled. A review of 2,000 pages of inspection records found repeated violations of basic protocol for drug treatment at all of them.
A resident at Bernard Fineson, a state institution in Queens that is perennially cited for violating drug administration policies, was on a drug diet of Risperdal, Ativan and the antiseizure medication Depakote, but inspectors wrote that “there is no evidence of a team review regarding justification for the current medication regime.” A resident at a Hudson Valley institution was on seven psychotropic drugs, along with Benadryl; inspectors worried that “there was no process evident that evaluated the risks of the untreated behaviors against the risks of the medication.”
At an institution in Broome County, inspectors reviewing the records of several patients could not even figure out what behavioral problems were being treated with drugs like Depakote, lithium, Thorazine and Zoloft.
The nonprofit facilities overseen by the state are not much better.
During a recent six-year period, Living Resources, a nonprofit organization in Albany that cares for about 300 people, was cited for 11 violations related to misusing drugs to control inappropriate behavior. That is the most of any nonprofit provider in the state in that period of time, according to inspection data analyzed by The Times.
“We have a lot of people that we care about and care for,” said Fredrick W. Erlich, the Living Resources chief executive officer, adding, “We are going to make mistakes.”
In search of alternative approaches, state officials are now studying the practices of the ARC of Delaware County, a small nonprofit group serving the developmentally disabled in the Catskills. The group has a policy banning what they call “pharmacological restraints,” or the use of drugs for reasons beyond treating medical problems.
“We’re not antimedication, but we believe people need the least amount to take the edge off so they can be available for teaching, and ultimately as they learn, those medications get reduced and eliminated,” said George Suess, chief executive of the ARC of Delaware County. He added that his residents “are functioning, they are learning, they are not zombied out, sitting in a corner like vegetables.”
A Sister’s Keeper
Taraneh Vargha’s sister was on so many psychotropic medications at her group home in the Finger Lakes region that her hands would shake, her body temperature fluctuated, her heart raced and her chest ached. She had tardive dyskinesia, a disorder characterized by involuntary repetitive movements that is common among people on high dosages of antipsychotic medications.
The sisters are both Iranian-born American citizens and members of the Bahai faith, whose members have been persecuted in Iran since the Islamic Revolution in 1979. Ms. Vargha’s sister received a number of shifting diagnoses over the years, including autism-related disorders, mild mental retardation, post-traumatic stress, bipolar disorder and schizophrenia.
At the same time, state officials conceded in records obtained by The Times that they did not really know what her diagnosis was; assessing her has been complicated by the fact that Ms. Vargha’s sister is far more fluent in Persian than English.
Despite confusion about her diagnoses, there has been clear concern expressed in state records about the volume of drugs she was being given. None was more prevalent than Geodon, an antipsychotic made by Pfizer. Ms. Vargha protested after her sister, 47, was given as much as 360 milligrams per day; the maximum dosage recommended by the Food and Drug Administration is 160 milligrams.
In a statement, Easter Seals, which operates a clinic that prescribed the medication to Ms. Vargha’s sister, said the choice to provide such a high amount of Geodon was “not uncommon” and done “with close monitoring.” It added, “We do not believe the dosage prescribed was a mistake, but that it was done consistent with appropriate protocols.”
The Times asked Dr. Levitas about such a dosage.
“It is not only not accepted, it is dangerous,” he said, adding, “I’ve never seen Geodon used at that dose before.”
The Office for People With Developmental Disabilities reviewed the case after being approached by The Times and is referring it to the Commission on Quality of Care. “What we have found,” the office said, “is sufficiently concerning that we have determined an independent, external review is necessary.”
Records obtained by The Times show state officials expressing alarm, even if they took little action.
“The Geodon is well above (i.e. 3x above) the typical upper level for this med. This is of great concern,” says a report in August 2008, drafted by an oversight committee in the Finger Lakes division of the Office for People With Developmental Disabilities. “This is a very large dose of Geodon,” said another report from September of that year. And yet it continued. A review by the Health Department said the Geodon dosage in 2009 was “excessive and much above the F.D.A.’s limits.”
Geodon dosages were drawing scrutiny from federal prosecutors at the same time. In 2009, Pfizer paid $301 million to settle allegations by the Justice Department that company representatives marketed the drug for unapproved uses and encouraged doctors “to prescribe the drug at substantially higher than approved dosages.”
Like all psychotropic medications, Geodon has potential side effects, like anxiety and weight gain, and far more serious risks, including vision problems. And Ms. Vargha’s sister was also taking four other psychotropic drugs, each with its own potentially damaging consequences.
Ms. Vargha fought for years before her sister’s dosages were reduced. “Why on earth would we give psychotropic medications to a population that is already vulnerable and struggling to use their brain?” she wrote in a letter to the state this year. “Why do we want to numb and dumb them more?”
Three months ago, increasingly desperate, Ms. Vargha, 56, removed her sister from the group home, and took her to her house.
When a reporter visited Ms. Vargha’s home recently, her sister was disoriented and briefly mistook the reporter for an Iranian policeman. At night, she walks the hallways, speaking Persian.
“She’s getting better, she’s eating now a bit, but she doesn’t sleep,” Ms. Vargha said. She hopes to get her sister back on her feet soon and move her into a group apartment in Rochester — where she hopes her sister can regain some sense of herself.
“My sister came with so much hope to this country, America, the land of freedom,” she said. “When she became a citizen, she put both arms up and said, ‘I love this country.’ ”
She added, “I want her to experience what she believed in.”
Bil Browning and his boyfriend were homeless. To protect the identity of the boyfriend (now ex-boyfriend), Mr. Browning will not say specifically where, just that it was in “southern Indiana,” about 20 years ago. But he is very explicit about who refused to give them shelter.
“The Salvation Army refused to help us,” Mr. Browning recalls, “unless we broke up and then left the ‘sinful homosexual lifestyle’ behind. We slept on the street, and they didn’t help when we declined to break up at their insistence.”
Mr. Browning’s boyfriend was wearing a “Silence = Death” AIDS pin on his jacket, which must have tipped off the Salvation Army worker. “He told us we needed to be saved,” Mr. Browning says. “If we were willing to attend church services, he could help. We would have to break up, only one of us could stay in the shelter, and if there was room for the other, he would have to be on the opposite side of the room, and we wouldn’t even look at each other.”
Now Mr. Browning, a writer and gay rights advocate, is using his blog to publicize a decade-old boycott of the Salvation Army. The boycott’s proponents say those who drop money into the Salvation Army’s ubiquitous red kettles at Christmastime, or shop in its thrift stores, often know little about the organization’s evangelical Christianity, its opposition to homosexuality, and its occasional attempts to influence public policy on gay rights.
On his Web site, Mr. Browning, whom the Christian magazine World recently called “the Red Kettle Menace,” encourages people to donate instead to other organizations, like the Red Cross or Doctors without Borders. When he passes by the red kettles, he sometimes drops in pieces of imitation money that he says have circulated among gay activists for about 10 years.
One version of the money looks like a real dollar bill, but its (obviously fake) denomination is three dollars, it carries a rainbow flag, and it bears the words, in small print: “When the Salvation Army ends its policy of religious bigotry and discrimination against gay, lesbian, bisexual and transgender people, then, and only then, will this be a real dollar bill.”
Greg Henchar, a Floridian who with his partner runs Rainbow411.com, a gay-friendly business directory, says he created the $3 bill a year ago. The blogger John Aravosis has published on his Web site a similar piece of red-kettle literature — he does not know who created it — that says “Voucher” across the top and begins, “This holiday season I am supporting organizations that do not discriminate in any way.” And about a dozen YouTube videos promote a Salvation Army boycott; the most popular, posted over a year ago, has been watched over 100,000 times.
The Salvation Army originated in a series of revival meetings led by the Methodist preacher William Booth in 1865, in the East End of London. Booth left the institutional church because he believed it did too little for the poor. Today, the Salvation Army operates in 122 countries, offering services including drug and alcohol rehabilitation, shelters and soup kitchens. Although Salvation Army missions lack many trappings of Christian churches — they do not offer communion, for example — they house nondenominational worship services, and their treatment programs rely on the Bible.
The Salvation Army’s “Position Statement” on homosexuality, found on its Web site, reads in part: “The Salvation Army does not consider same-sex orientation blameworthy in itself. Homosexual conduct, like heterosexual conduct, requires individual responsibility and must be guided by the light of scriptural teaching. Scripture forbids sexual intimacy between members of the same sex. The Salvation Army believes, therefore, that Christians whose sexual orientation is primarily or exclusively same-sex are called upon to embrace celibacy as a way of life.”
The Salvation Army does not employ registered lobbyists, but its leaders have occasionally made news by meeting with government officials. In 2001, The Washington Post obtained a Salvation Army document that said the administration of President George W. Bush had promised to honor a Salvation Army request: that religious charities receiving federal money be exempt from local gay antidiscrimination laws. The day the request became public, the Bush administration said it was being denied.
And in 2004, in response to a City Council ordinance requiring that organizations with city contracts offer benefits to gay employees’ partners, the Salvation Army threatened to stop operating in New York City. In 2006, the New York State Court of Appeals ruled that Mayor Michael R. Bloomberg did not have to enforce the ordinance, which had been enacted over his veto; the Salvation Army never left New York City.
George Hood, a Salvation Army spokesman, said all revenue from Salvation Army thrift stores is used locally. But he said a small percentage of money dropped into the red kettles finds its way to Washington — where it helps to pay the salaries of politically active staff members like Mr. Hood. Every local unit pays 10 percent of its revenue to a state or regional division — there are 40 divisions in the United States — and every division pays 10 percent of its revenue to one of four national territories, each of which foots a quarter of the national budget.
In other words, of a dollar dropped into a red kettle in New York City, a quarter of a penny ends up at national headquarters, where conversations with the government — not lobbying, Mr. Hood says — may take place.
Despite the boycott, the red kettles have had three straight record years for fund-raising, Mr. Hood says. As to the complaint of discrimination based on sexual orientation, he says it is against Salvation Army policy. “If they were legitimate clients looking for food, they should have been helped,” he says of Mr. Browning and his ex-boyfriend.
In a statement sent by e-mail later, Mr. Hood adds that “gay couples are to be treated in the same way we treat heterosexual couples.”
“Whether they are provided overnight lodging,” he says, “is determined solely on capacity and availability of beds.” Most beds in Salvation Army shelters are for men, but the Salvation Army has “been going through a transition of facilities over the past several years to expand bed space for women and also to isolate some private rooms for couples, whether they be homosexual or heterosexual.”
Logging In With a Touch or a Phrase (Anything but a Password)
Passwords are a pain to remember. What if a quick wiggle of five fingers on a screen could log you in instead? Or speaking a simple phrase?
Neither idea is far-fetched. Computer scientists in Brooklyn are training their iPads to recognize their owners by the touch of their fingers as they make a caressing gesture. Banks are already using software that recognizes your voice, supplementing the standard PIN.
And after years of predicting its demise, security researchers are renewing their efforts to supplement and perhaps one day obliterate the old-fashioned password.
“If you ask me what is the biggest nuisance today, I would say it’s the 40 different passwords I have to create and change,” said Nasir Memon, a computer science professor at the Polytechnic Institute of New York University in Brooklyn who is leading the iPad project.
Many people would agree. The password has become a monkey on our digital backs — an essential key to our many devices and accounts, but increasingly a source of exasperation and insecurity.
The research arm of the Defense Department is looking for ways to use cues like a person’s typing quirks to continuously verify identity — in case, say, a soldier’s laptop ends up in enemy hands on the battlefield. In a more ordinary example, Google recently began nudging users to consider a two-step log-in system, combining a password with a code sent to their phones. Google’s latest Android software can unlock a phone when it recognizes the owner’s face or — not so safe — when it is tricked by someone holding up a photograph of the owner’s face.
Still, despite these recent advances, it may be premature to announce the end of passwords, as Bill Gates famously did in 2004, when he said “the password is dead.”
“The spectacularly incorrect assumption ‘passwords are dead’ has been harmful, discouraging research on how to improve the lot of close to two billion people who use them,” Cormac Herley, a researcher at Microsoft, the company that Mr. Gates founded, wrote in a recent paper. Mr. Herley suggested instead that developers try “to better support the use of passwords” — for example, by helping people protect their wireless connections from eavesdroppers. “Passwords,” Mr. Herley continued, “have proved themselves a worthy opponent: all those who have attempted to replace them have failed.”
The touch-screen approach of Professor Memon in Brooklyn works because, as it happens, each person makes the same gesture uniquely. Their fingers are different, they move at different speeds, they have what he calls a different “flair.” He wants logging in to be easy; besides, he said, some people find biometric measures like an iris scan to be “creepy.”
In his research, the most popular gestures turned out to be the ones that feel most intuitive. One was to turn the image of a combination lock 90 degrees in one direction. Another was to sign one’s name on the screen. In principle, the gesture can be used to unlock a device, or an app on the device that safely holds a variety of passwords.
Despite their resilience, passwords are weak, notably because their users have limited memories and a weakness for blurting out secrets. Most people need dozens of them, and they tend to pick ones that are so complex they need to be written down, or so simple they can be easily guessed. Recently, criminals have become adept at stealing passwords by sneaking malicious software onto computers or tricking users into typing them into an illegitimate site.
Companies like Facebook and Twitter have sought to address the frustration with passwords by allowing their usernames and passwords to open the door to millions of Web sites, a convenience that brings obvious risks. A thief with access to a master username and password can have access to a host of accounts.
Rachna Dhamija, a California computer scientist turned entrepreneur, sought to combat those weaknesses by breaking up the password. The user first logs in to the service that Ms. Dhamija built, UsableLogin, and signs in with her own partial password. Behind the scenes, the service verifies that the user is on an authorized device, and pulls the third piece from the cloud, generating a unique password for any Web site that the user wants to log in to — Facebook, for instance. In other words, one piece of the password rests with the user, another is stored in her device, and a third piece is kept online.
“You take a secret and you spread it across,” said Ms. Dhamija, whose service was recently acquired by Webroot Software, based in Broomfield, Colo. “You’re spreading the risk. The password is not stored in its whole form anywhere.”
But even if a user has been authorized at the start of a session, what if someone else gains access to her computer an hour later? Darpa, the Defense Department’s technology research arm, has invited security researchers to develop ways to verify a user every instant, based on the way the individual uses the machine — “for example, how the user handles the mouse and how the user crafts written language in an e-mail or document,” it explains on its Web site.
Each of these techniques is driven by the notion that a password alone is an insufficient means to verify online identity. Think of them as a fortification: a password-plus.
Many companies use a smart card or a security “dongle” — a small piece of hardware that plugs into the computer and functions as a key — as that second step of verification to allow access to internal networks. Today, biometrics — an individual’s unique physical traits — are emerging as an alternative.
At least a half-dozen banks in the United States ask their customers to verify who they are by reciting a two-second phrase to a computer over the phone, in addition to punching in their PINs. It could be as simple as “at my bank,” and a million customers could recite the very same phrase and still sound unique, according to Nuance Communications, a company based in Burlington, Mass., that makes the technology.
As mobile phones become bodily appendages for people worldwide, they too are emerging as instruments to verify identity. Google introduced its two-step process earlier this year. It sends a six-digit code to an application on a Google user’s cellphone to be entered, along with a password, when signing onto a Google account on a computer or tablet. The code can also be sent as a text message for those who don’t have smartphones, or it can be conveyed through a phone call.
The extra step is not mandatory, and the company will not say how widely it has been adopted. But as vulnerable as passwords are to theft and compromise, Google says, it is increasingly important for a user’s identity to be verified through another channel — a cellphone, in this case.
“I think we’ll start to see people using their mobile devices as their pervasive identifiers,” said Brendon Wilson, a security researcher at Symantec. “The password will no longer be the final arbiter that you are you. You will see layers on top.”
For Transgender Detainees, a Jail Policy Offers Some Security
For as long as she can remember, Maribel said, she has felt that she was different. She was born a boy in Mexico, and came to the United States at 16. Two years later, she started taking hormone pills and later underwent some operations to become physically the woman she always believed herself to be.
Maribel, 40, concedes she has long lived on the margins of society, never holding down a job and bouncing in and out of jail over the years.
In March, she was charged with retail theft and sent to Cook County Jail. Despite her shoulder-length hair, fuller lips and breasts, Maribel (who agreed to be interviewed on the condition that only her first name be used) was housed with male detainees.
“It was horrible,” she said. “Sometimes words hurt more than a punch. People can be very cruel.” After two weeks she was moved to the women’s division, where she remains while awaiting trial.
Also in March, Cook County Jail instituted a new policy for detainees like Maribel, who either identify themselves as transgender or are identified by the jail’s medical staff as having gender-identity disorder, the formal diagnosis for those who feel at odds with their sex at birth.
Under the policy, which covers procedures for housing, clothing, showering, grooming, medical care and other aspects of life in jail, a gender identity committee meets periodically to determine and review plans for each transgender detainee. Among the decisions the committee makes is whether the detainee should be housed with men or women.
Of the 60 or so transgender detainees who have entered the jail since the new policy took effect, only two — Maribel and another person who was born with male anatomy but identifies as a woman — have been housed with women, jail officials said. All of the others, who were born male but identify as women, are housed with men but have opted for protective custody and are kept separately from the other detainees, a choice available to anyone entering the jail.
Sheriff Thomas J. Dart said he instituted the new procedures when he realized that the jail — which holds an average daily population of about 8,900, primarily consisting of people awaiting trial — did not have a policy on how to deal with transgender detainees.
In one of his weekly meetings of jail officials, “when it came up, I asked around the room what everyone’s thoughts were on it, and there was a collective pause,” Mr. Dart said. “It just became clear to me that we needed to have a more affirmative position.”
Jails around the country are starting to address the difficult and sensitive issue of how to deal with transgender detainees. Lawsuits over their mistreatment have focused more attention on the issue. Another factor has been increased knowledge about the vulnerability of transgender detainees and inmates, in part due to the federal Prison Rape Elimination Act of 2003.
Randi Ettner, an Evanston psychologist who is chairwoman of the World Professional Association for Transgender Health’s Committee for Incarcerated Persons, said policies dealing specifically with transgender inmates are critical for protecting their safety and health.
“I’ve been in many other prison settings where patients who need and require medical interventions are ignored,” said Dr. Ettner, who helped the Cook County Jail staff craft their policy. “They’re inappropriately treated when they do receive treatment and, sadly, this has led to a lot of self-harm in prison systems,” including attempts to castrate themselves to rid their bodies of testosterone.
About 1 in 11,000 men and 1 in 30,000 women are born with gender-identity disorder, Dr. Ettner said. Treatment typically consists of psychological, hormonal and sometimes surgical approaches.
The issue is a significant concern for corrections officials because transgender people are more likely to end up in jail than the general population. A 2011 report based on a survey of 6,450 people described as transgender or gender nonconforming, sponsored by the National Gay and Lesbian Task Force and the National Center for Transgender Equality, said: “They are more likely to interact with police because they are more likely to be victims of violent crime, because they are more likely to be on the street due to homelessness and/or being unwelcome at home, because their circumstances often force them to work in the underground economy, and even because many face harassment and arrest simply because they are out in public while being transgender.”
Seven percent of respondents reported being arrested or detained in jail due only to their gender identity.
Sexual assaults are 13 times more prevalent among transgender inmates than the general prison population, according to a 2007 University of California, Irvine, study of California state prisons.
Transgender detainees are sometimes inappropriately placed in solitary confinement or mental health facilities in misguided efforts to protect their safety, experts said. Lack of access to hormone therapy, counseling and other medical services is another common problem for transgender detainees.
In August, a United States Court of Appeals upheld the right of transgender people to receive medical care while in jail, agreeing with a Federal District Court decision that overturned a 2005 Wisconsin law that prohibited doctors from prescribing medically necessary hormone therapy or sex reassignment surgery to inmates.
Harper Jean Tobin, policy counsel for the National Center for Transgender Equality, said that Cook County Jail’s transgender policy is among the stronger in the nation, along with those in Cumberland County, Me., and the District of Columbia.
Owen Daniel-McCarter, project attorney with the Transformative Justice Law Project of Illinois, which offers low-income transgender people free criminal legal services, said the most noticeable change at the jail is his clients’ improved access to hormone therapy, although some have complained that they have not received the right kinds of hormones or the right doses.
“The physical, mental and emotional effects of being pulled from hormones overnight is devastating,” Mr. Daniel-McCarter said. “People will go into suicidal ideations. It’s like going into menopause overnight.” For clients who have been taking hormones since they were teenagers and never went through male puberty, a cessation of treatment can be very difficult and result in irreversible changes, he added.
Although Maribel has never changed her birth name legally, she has gone by Maribel for 23 years. She said she was grateful that she had been transferred to the women’s division, where she has been working on turning around her life.
“I’m so glad somebody made the decision,” Maribel said, wiping away tears. “I’ve learned that I don’t have to do nothing I really don’t want to do just to please people. I know I can survive here.”
In Treating Disabled, Potent Drugs and Few Rules
Something was happening to Katie Strignano.
After she was moved into a state-run group home, the 26-year-old woman, who is severely mentally retarded, started gaining weight, drooling, breaking out in pimples and pulling out her hair, leaving a bald spot the size of a softball on her head.
Her mother, Debra Strignano, suspected that someone had increased her daughter’s medication without her family’s consent.
When she asked for a copy of a consent form she had once signed for her daughter, she discovered it had been altered, tripling the daily dosage of Clonidine, which is used to control attention deficit disorder. The drug, and four others her daughter was taking, have myriad potential side effects, including rapid weight gain, skin rashes and drowsiness.
In response to questions from The New York Times, state officials said they would investigate how the consent form was changed and whether Katie Strignano was receiving the appropriate dose of medication.
“Everything with them is, let’s sedate the kid instead of trying to solve the problem,” Ms. Strignano said. “They want to dope her up; they want her to sit there like she doesn’t exist.”
Tens of thousands of powerful pills created to treat serious mental illnesses like schizophrenia are given to developmentally disabled people in the care of New York State every day.
But a review by The Times of previously unreleased records, as well as interviews with state employees, clinicians, family members and outside experts, reveals that the psychotropic medications, which alter the brain’s chemistry, are often dispensed sloppily, without rigorous or regular review, by general practitioners with little expertise in the area.
And low-level workers at state group homes are frequently given discretion to increase the medication “as needed,” despite their lack of significant training.
Psychologists who have worked inside the system describe a culture in which the drugs are used to control the disruptive behavior of the developmentally disabled — people with conditions like autism, Down syndrome and cerebral palsy — an approach increasingly discredited in the field.
The problem is that people with mental retardation, because of their condition and diminished intellectual capacity, commonly exhibit symptoms similar to those seen among people who have impulse control, anxiety or attention deficit disorders.
Psychiatrists and psychologists interviewed by The Times said those symptoms were best treated through therapy and one-on-one guidance of the developmentally disabled. But state records indicate that the doctors are often instead treating them with the psychotropic drugs, which do not address their underlying problems and can be harmful.
“It’s a mistake,” said Dr. Andrew Levitas, an associate professor of psychiatry at the University of Medicine and Dentistry of New Jersey who specializes in developmental disabilities. “Using antipsychotics to suppress behavior is an old practice used by people who aren’t acquainted with the advances in the field.”
The Times review found that 4 of the top 10 medications or supplements given to the developmentally disabled in the state are psychotropic, according to Medicaid records. In fact, developmentally disabled residents of group homes in New York are more likely to be given Ativan, an anti-anxiety drug that has a tranquilizing effect, than multivitamins, the records show.
Concern about drug use was one of the most frequently raised issues in inspection records reviewed by The Times; in the last five years, all nine state residential institutions for the developmentally disabled have been repeatedly cited by Health Department inspectors for failing to provide proper oversight of psychotropic drugs.
The drugs can have serious consequences. Risperdal, the second most frequently prescribed, was developed to treat psychotic disorders and has been approved for controlling aggression among people with autism. But its side effects can be extreme, including breast growth in adolescent boys, which in a small number of cases require mastectomies.
And even the use of the drugs to control behavior is questionable. A 2008 study published in the medical journal The Lancet found that psychotropic drugs like Risperdal were less effective at treating behavioral outbursts than placebos.
Dr. Roy Q. Sanders, who is the medical director of the Marcus Autism Center in Atlanta and has worked in New York, said, “I tell people all the time that the medications are really blunt tools when it comes to making substantial differences in behavior in developmentally disabled individuals.”
To be sure, the issue is a complicated one: developmentally disabled people are more likely than the general population to suffer from mental illness.
But the records examined by The Times show that some developmentally disabled residents received psychotropic drugs without ever getting a clear diagnosis of mental illness. Even among those who have a mental illness, the records indicate that the state’s use of the drugs can be overly aggressive.
During the last few months, as The Times has sought information about the state’s use of medications, the Office for People With Developmental Disabilities has acknowledged that there are problems, and began to develop sweeping guidelines for the use of medication. The new rules say medications “shall not be used for disciplinary purposes” or “as a substitute for supervision.”
“We know that less intrusive techniques work,” said Courtney Burke, commissioner of the Office for People With Developmental Disabilities, which oversees thousands of group homes and larger state facilities.
Ms. Burke said her agency was developing software to track the use of psychotropic drugs better and was creating a position, a chief of pharmacy, to oversee how drugs are used. New regulations, she added, would “help move the system to one that does not rely on medication or physical intervention.”
The Clinician’s View
Diana Valitutto, a former state psychologist, said she resigned from the Office for People With Developmental Disabilities in 2004 after concerns she raised about the use of psychotropic medications were ignored.
While she said she believed drugs were justified at times, she added, “from my experience, they don’t make genuine permanent changes in behavior, they simply control the client for the time being.”
State law says that “no medication shall be used for the convenience of staff” and that “special attention shall be given to those individuals receiving psychotropic medication.”
But oversight is limited. Although psychotropic drug use is supposed to be regularly reviewed, records show those reviews are seldom rigorous. The bar is higher in Massachusetts, for example, where state officials must have the approval of a judge to use drugs classified as antipsychotic.
“It’s worked well to protect people with mental health and cognitive impairments over the years,” said Marianne Meacham, general counsel at the Department of Developmental Services in Massachusetts. “It’s somewhat burdensome, but it’s definitely an important protection.”
In New York, Ms. Valitutto grew so worried about the overuse of drugs that she went to the Commission on Quality of Care and Advocacy for Persons With Disabilities, a state oversight agency, with examples of residents on what she believed were overly aggressive regimens of psychotropic medications.
“I saw people being medicated to control behavior to such a degree that to me it was obviously and clearly affecting their health, their safety, their quality of life, their ability to participate in the daily activities of living, and in some cases threatened their lives,” Ms. Valitutto said.
Ms. Valitutto said there was little consistency in how drugs were used: In central New York, she said, they were dispensed carefully and ethically. But that was not the case in the Albany area. A retired state psychologist who was approached independently by The Times vouched for Ms. Valitutto’s professionalism and offered a similar account, saying the residents in that region were often treated with multiple medications from the same class, a practice discouraged by the medical establishment.
“We would always go to drugs,” the psychologist said. “Once you get a client on a lot of medications, it’s hard to know what’s working and what’s not, and it’s hard to get them off.”
The commission, which declined to comment, never took any action on the concerns brought forward by Ms. Valitutto, and she resigned.
A Chronic Problem
Every year, the State Health Department inspects New York’s nine large residential facilities for the developmentally disabled. A review of 2,000 pages of inspection records found repeated violations of basic protocol for drug treatment at all of them.
A resident at Bernard Fineson, a state institution in Queens that is perennially cited for violating drug administration policies, was on a drug diet of Risperdal, Ativan and the antiseizure medication Depakote, but inspectors wrote that “there is no evidence of a team review regarding justification for the current medication regime.” A resident at a Hudson Valley institution was on seven psychotropic drugs, along with Benadryl; inspectors worried that “there was no process evident that evaluated the risks of the untreated behaviors against the risks of the medication.”
At an institution in Broome County, inspectors reviewing the records of several patients could not even figure out what behavioral problems were being treated with drugs like Depakote, lithium, Thorazine and Zoloft.
The nonprofit facilities overseen by the state are not much better.
During a recent six-year period, Living Resources, a nonprofit organization in Albany that cares for about 300 people, was cited for 11 violations related to misusing drugs to control inappropriate behavior. That is the most of any nonprofit provider in the state in that period of time, according to inspection data analyzed by The Times.
“We have a lot of people that we care about and care for,” said Fredrick W. Erlich, the Living Resources chief executive officer, adding, “We are going to make mistakes.”
In search of alternative approaches, state officials are now studying the practices of the ARC of Delaware County, a small nonprofit group serving the developmentally disabled in the Catskills. The group has a policy banning what they call “pharmacological restraints,” or the use of drugs for reasons beyond treating medical problems.
“We’re not antimedication, but we believe people need the least amount to take the edge off so they can be available for teaching, and ultimately as they learn, those medications get reduced and eliminated,” said George Suess, chief executive of the ARC of Delaware County. He added that his residents “are functioning, they are learning, they are not zombied out, sitting in a corner like vegetables.”
A Sister’s Keeper
Taraneh Vargha’s sister was on so many psychotropic medications at her group home in the Finger Lakes region that her hands would shake, her body temperature fluctuated, her heart raced and her chest ached. She had tardive dyskinesia, a disorder characterized by involuntary repetitive movements that is common among people on high dosages of antipsychotic medications.
The sisters are both Iranian-born American citizens and members of the Bahai faith, whose members have been persecuted in Iran since the Islamic Revolution in 1979. Ms. Vargha’s sister received a number of shifting diagnoses over the years, including autism-related disorders, mild mental retardation, post-traumatic stress, bipolar disorder and schizophrenia.
At the same time, state officials conceded in records obtained by The Times that they did not really know what her diagnosis was; assessing her has been complicated by the fact that Ms. Vargha’s sister is far more fluent in Persian than English.
Despite confusion about her diagnoses, there has been clear concern expressed in state records about the volume of drugs she was being given. None was more prevalent than Geodon, an antipsychotic made by Pfizer. Ms. Vargha protested after her sister, 47, was given as much as 360 milligrams per day; the maximum dosage recommended by the Food and Drug Administration is 160 milligrams.
In a statement, Easter Seals, which operates a clinic that prescribed the medication to Ms. Vargha’s sister, said the choice to provide such a high amount of Geodon was “not uncommon” and done “with close monitoring.” It added, “We do not believe the dosage prescribed was a mistake, but that it was done consistent with appropriate protocols.”
The Times asked Dr. Levitas about such a dosage.
“It is not only not accepted, it is dangerous,” he said, adding, “I’ve never seen Geodon used at that dose before.”
The Office for People With Developmental Disabilities reviewed the case after being approached by The Times and is referring it to the Commission on Quality of Care. “What we have found,” the office said, “is sufficiently concerning that we have determined an independent, external review is necessary.”
Records obtained by The Times show state officials expressing alarm, even if they took little action.
“The Geodon is well above (i.e. 3x above) the typical upper level for this med. This is of great concern,” says a report in August 2008, drafted by an oversight committee in the Finger Lakes division of the Office for People With Developmental Disabilities. “This is a very large dose of Geodon,” said another report from September of that year. And yet it continued. A review by the Health Department said the Geodon dosage in 2009 was “excessive and much above the F.D.A.’s limits.”
Geodon dosages were drawing scrutiny from federal prosecutors at the same time. In 2009, Pfizer paid $301 million to settle allegations by the Justice Department that company representatives marketed the drug for unapproved uses and encouraged doctors “to prescribe the drug at substantially higher than approved dosages.”
Like all psychotropic medications, Geodon has potential side effects, like anxiety and weight gain, and far more serious risks, including vision problems. And Ms. Vargha’s sister was also taking four other psychotropic drugs, each with its own potentially damaging consequences.
Ms. Vargha fought for years before her sister’s dosages were reduced. “Why on earth would we give psychotropic medications to a population that is already vulnerable and struggling to use their brain?” she wrote in a letter to the state this year. “Why do we want to numb and dumb them more?”
Three months ago, increasingly desperate, Ms. Vargha, 56, removed her sister from the group home, and took her to her house.
When a reporter visited Ms. Vargha’s home recently, her sister was disoriented and briefly mistook the reporter for an Iranian policeman. At night, she walks the hallways, speaking Persian.
“She’s getting better, she’s eating now a bit, but she doesn’t sleep,” Ms. Vargha said. She hopes to get her sister back on her feet soon and move her into a group apartment in Rochester — where she hopes her sister can regain some sense of herself.
“My sister came with so much hope to this country, America, the land of freedom,” she said. “When she became a citizen, she put both arms up and said, ‘I love this country.’ ”
She added, “I want her to experience what she believed in.”
