Monday, June 6, 2011

In New York, autistic boy's death signals dangerous state developmental disabilities system

From The NY Times. Michael Carey, Jonathan's father, is pictured at his grave.

Jonathan Carey did not die for lack of money.

New York State and the federal government provided $1.4 million annually per person to care for Jonathan and the other residents of the Oswald D. Heck Developmental Center, a warren of low-rise concrete and brick buildings near Albany.

Yet on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan.

“I could be a good king or a bad king,” he told the dying boy beneath him, according to court documents.

In the front seat of the van, the driver, another state worker at O. D. Heck, watched through the rear-view mirror but said little. He had been fired from four different private providers of services to the developmentally disabled before the state hired him to care for the same vulnerable population.

O. D. Heck is one of nine large institutions in New York that house the developmentally disabled, those with cerebral palsy, autism, Down syndrome and other conditions.

These institutions spend two and a half times as much money, per resident, as the thousands of smaller group homes that care for far more of the 135,000 developmentally disabled New Yorkers receiving services.

But the institutions are hardly a model: Those who run them have tolerated physical and psychological abuse, knowingly hired unqualified workers, ignored complaints by whistle-blowers and failed to credibly investigate cases of abuse and neglect, according to a review by The New York Times of thousands of state records and court documents, along with interviews of current and former employees.

Since 2005, seven of the institutions have failed inspections by the State Health Department, which oversees the safety and living conditions of the residents. One was shut down altogether this year.

While Jonathan Carey was at O. D. Heck, Health Department inspectors accused its management of routinely failing to investigate fractures and lacerations suffered by residents.

Similar problems can be found across the state. The Broome Developmental Center in Binghamton has been cited for repeatedly failing to protect residents from staff members. One employee there was merely reassigned after encouraging adolescent residents to fight one another.

Patterns of abuse appear embedded in the culture of the Sunmount Developmental Center in the Adirondacks. Last year, one supervisor was accused of four different episodes of physical and psychological abuse of residents within a span of two and a half months; another employee bragged on Facebook about “beating retards.”

The most damning accounts about the operations come from employees — thwarted whistle-blowers from around the state — and the beleaguered family members of residents.

Dozens of people with direct experience in the system echoed a central complaint about the Office for People With Developmental Disabilities: that the agency fails to take complaints seriously or curtail abuse of its residents.

“I’ve never seen any outfit run the way this place is,” said Jim Lynch, a direct-care worker in Brooklyn. “You report stuff, and then you get retaliated against. They want everything kept quiet. People that are outspoken attract the heat. I don’t know who to talk to when I see a problem. Nothing ever gets done.”

Paul Borer, a dietitian who works for the agency in the Hudson Valley, said he saw another employee punch a resident twice in the face in 2008, but little ever came of the many complaints he made about the episode, to his supervisors, to the commissioner of the agency at the time, Diana Jones Ritter, and to the office of Gov. David A. Paterson.

“You can see a person get hit, then you can go through three years of writing back and forth and nothing happens, so why even report it?” Mr. Borer said.

Mary Maioriello, who worked at O. D. Heck, reported seeing several cases of abuse, including the repeated beating of a resident with a stick that staff members called “the magic wand.”

Upset that her concerns were not sent to law enforcement, she confronted two of the agency’s top officials and secretly recorded the encounter, in which they sought to play down what she saw. After state officials learned of the existence of the tape, which Ms. Maioriello gave to The Times, the two officials were reassigned.

“The people at this place, the only way I can describe it is as a cult,” Ms. Maioriello said of O. D. Heck. “It should be shut down.”

Earlier this year, Gov. Andrew M. Cuomo forced the resignation of the commissioner of the Office for People With Developmental Disabilities after learning of the Times investigation, and said his administration would undertake a broad review of the state’s care of the developmentally disabled.

Indications are, however, that the agency is still struggling. Its new commissioner, Courtney Burke, is a well-regarded policy analyst but lacks management experience. She has taken over an agency with 23,000 employees; previously, she managed no more than seven. Mr. Cuomo has asked two veteran commissioners to review the agency’s practices, and Ms. Burke has taken some decisive steps, firing two top officials, and trying to establish more independent investigations.

Still, the pattern of secrecy at the agency has been hard to break; even after Ms. Burke’s ascension, it has battled in court to prevent the disclosure of patient records to Albany Law School, even though the school has a contract to monitor care of the disabled.

The institutions have survived a 40-year deinstitutionalization effort in part because officials have argued that they need a place to house the most frail or physically unruly residents. But there is also big money at stake. New York has been adept at securing large amounts of cash from Washington, earmarked for the institutions.

The federal and state governments now allocate more than $1.8 million annually for each of the roughly 1,300 residents remaining in the nine institutions, a number that has steadily risen from $1.4 million in 2007, when Jonathan Carey died.

That adds up to more than $2.5 billion a year, with about 60 percent coming from Washington.

But the money does not actually all go to the care of the residents in the institutions.

The state agency recently conceded that only about $600 million is being spent on the residents’ care — a still-generous allocation of nearly $430,000 per person — while the rest is redirected throughout the agency for use at group homes and care in other areas. The state’s redistribution of the Medicaid money earmarked for the institutions is currently the subject of a federal audit. The Cuomo administration has said it is moving to further de-emphasize institutional care and will close some of the nine facilities.

Jonathan’s Story

Jonathan Carey arrived at O. D. Heck on Oct. 7, 2005.

Two months later, unbeknown to Jonathan’s parents, Michael and Lisa Carey, the federal government barred the facility from accepting new residents financed by Medicaid for a year because of its chronic problems.

One inspection by the State Health Department found at least 18 serious injuries of residents in a five-month period, in a facility holding only 57 people. Eight of the injuries, including five fractures, were of unknown origin.

The Health Department concluded that investigating the high number of injuries was not a priority for O. D. Heck’s management.

“There was no evidence that the facility examined the nature of all reportable injuries systemically in an effort to prevent such injuries in the future,” inspectors wrote. O. D. Heck managers were supposed to complete initial investigations within five days of a serious injury, but often left the inquiries open for weeks or months, the department found.

Some workers were hardly fit for duty. One had a history of showing up intoxicated, according to depositions in a civil case brought by the Carey family against the state, but he was kept on the job until he was once so drunk at work that he was sent to a hospital. He was later made a groundskeeper.

Direct-care workers were often high school dropouts, some with criminal convictions. One lower-level supervisor had a petty larceny conviction. Edwin Tirado, the employee eventually convicted of manslaughter in Jonathan’s death, had been convicted of selling marijuana and, as a youthful offender, for firing a shotgun in his attic.

Nadeem Mall, a trainee at O. D. Heck who pleaded guilty to criminally negligent homicide in Jonathan’s death, was fired from four different private providers of services to the developmentally disabled, lasting less than a year at each of them, before he was hired by the state.

One employer had accused Mr. Mall of sleeping and watching television on the job. Another found him sleeping while a resident’s thumb was bleeding profusely. He was let go from a third job after being accused of calling 1-900 sex lines using a company cellphone, and from a fourth job after he inexplicably had a hairdresser cut off all the hair of a disabled woman in his care. Mr. Mall’s lawyer declined to comment.

With that background, he was hired by the state, listing his sister and his wife as references on his application. A state official recently said in a deposition that the Office for People With Developmental Disabilities knew Mr. Mall had lied on his application form, claiming his driver’s license had never been suspended when it actually had been shortly before his hiring.

“O. D. Heck failed at every single possible level,” said Ilann Maazel, Mr. Carey’s lawyer. “It was a disaster waiting to happen.”

There was little tangible oversight of employees and no restraint on overtime, which employees coveted to supplement the low salaries, which started at less than $30,000 a year. Mr. Tirado was once allowed to work 84 straight days, and the former head of O. D. Heck acknowledged in a deposition that too much overtime had contributed to Jonathan’s death.

All of this was hidden from the families of O. D. Heck’s residents.

“If we had any clue that O. D. Heck was in this shape, do you think that we would have ever put Jonathan in there?” Jonathan’s father said.

Mr. Carey is a tall man with piercing blue eyes, who ran a used-car dealership before his son’s death. During a recent interview, Mr. Carey was surrounded by pictures of a grinning Jonathan, a contrast to his father’s crushing sadness.

Before Jonathan died, Michael, an evangelical Christian, would make regular missionary trips to Africa. He has largely given up his dealership, and now devotes his life mostly to advocacy for the developmentally disabled.

For the Careys, the journey to O. D. Heck was a last resort. Jonathan was born in 1993, the older of their two sons. When he was 19 months old, the Careys were told that he was mentally retarded, and when he was older that he was autistic — functionally a 2-year-old, his vocabulary limited to “daddy” and the phrase “Where you goin’?”

The Careys, who live near Albany, raised Jonathan until he was 9, but became worried that they could not teach their son basic living skills, like toilet training. They enrolled him at the Anderson Center for Autism, a privately run school in the Hudson Valley overseen by the state.

At first, the school seemed a good fit, until Jonathan, who was always thin, began losing weight. During one visit, an employee told the Careys to take home a duffel bag they had never used. They discovered a logbook inside the bag detailing startling changes to Jonathan’s treatment plan. Among other things, the school was withholding food from Jonathan to punish him for taking off his shirt at inappropriate times.

“They literally planned to withhold my son’s meals,” Mr. Carey said. “And when that was not working, then they began to seclude him in his bedroom for an extended period of time. He missed eight full days of school.”

Soon afterward, the Careys removed their son from Anderson, and cared for him at home for the next year. But now there were tantrums for no apparent reason. A doctor later told the Careys their son was suffering from post-traumatic stress disorder.

He became harder to contain. He was tall enough to jump their fence, had no sense of keeping himself safe and became increasingly hard to handle. About a year after he came home, Jonathan had what his father called “a full emotional meltdown,” and the Careys took him to a local hospital, where he was essentially knocked out with a drug cocktail and tied to his hospital bed.

Death in a Van

Running out of options, the Careys were directed to O. D. Heck, and they hoped that an institution run by the state would be more promising than the Anderson school.

But on Oct. 29, 2005, just a couple of weeks after Jonathan was enrolled, the Careys arrived to find their son’s nose so swollen that they took him to the hospital. None of the staff members claimed to know what had happened, and they speculated that it had occurred during a dental procedure. Another time, Jonathan was taken to the hospital with a black eye and a broken nose. That time, the staff suggested that Jonathan might have fallen out of bed.

On a third occasion, Jonathan was taken to the hospital with severe bruising on both sides of his face.

“They basically told us that Jonathan had fallen out of a rocking chair and hit his head on a table, and I said, ‘Absolutely not,’ ” Lisa Carey said.

In a recent deposition, a lower-level supervisor at O. D. Heck, Tedra Hamilton, recalled the third episode, saying Jonathan “had bruises everywhere.”

“It looked bad to me,” she added. “It scared me.”

Edwin Tirado had been one of two employees on duty right before the bruises were discovered; Mr. Tirado invoked his Fifth Amendment rights and declined to speak during a recent deposition when asked about prior abuse cases involving Jonathan.

The situation came to a head on Feb. 15, 2007. Mr. Tirado and Mr. Mall took Jonathan and another resident on an outing. Mr. Tirado had worked 197 hours over a 15-day period and was so exhausted that he let Mr. Mall drive, fearing he would fall asleep.

Mr. Mall first drove to his bank, leaving Mr. Tirado in the van with Jonathan and the other resident. While they were waiting, Jonathan got up from his seat. Mr. Tirado went to the back of the van and began to restrain Jonathan, trying to subdue him. Mr. Mall and the other resident, identified in court documents by his initials, E. C., later said that Mr. Tirado sat on Jonathan, who was face down, his legs flailing.

When Mr. Mall returned to the van several minutes later, Mr. Tirado declined an offer for help.

Mr. Tirado restrained Jonathan for about 15 minutes, continuing as the group drove to a gas station. Mr. Mall said he heard Mr. Tirado tell the boy, “I could be a good king or a bad king.” Mr. Tirado denied making the remark, but another employee had heard him make a similar comment before, according to court documents.

E. C., watching with apparent concern from the front of the van, told Mr. Tirado, “Get off of him,” and “Let him breathe,” according to Mr. Mall.

When they got to the gas station, Mr. Mall went inside to buy some drinks, including a Snapple iced tea for Mr. Tirado. Mr. Mall has testified that when he returned to the van, Mr. Tirado told him that Jonathan had stopped breathing and the two panicked.

Mr. Tirado has changed his story over time. In a re-enactment videotaped by the police soon after the death, he said that at the gas station, he realized Jonathan had stopped breathing.

“I just froze,” he said, adding that he was afraid of “losing my job and going to jail.” Mr. Tirado has since recanted, saying he had believed that Jonathan had gone to sleep.

Regardless, the two men drove around for more than an hour with a suddenly silent boy in the back without checking on him or calling 911. They went to a video game store, where Mr. Tirado bought a special bag for his PlayStation, then to Mr. Tirado’s house, where they smoked and chatted with a neighbor, and eventually back to O. D. Heck.

An autopsy found the cause of death to be compressive asphyxia — basically, so much pressure was put on Jonathan’s chest that he could not get enough oxygen into his lungs.

Mr. Carey and his wife were together when they got the call.

“I just lost it,” Mr. Carey said. “My wife was yelling and screaming ‘What happened? What happened?’ I just couldn’t even, I don’t even think I could communicate well. And she finally said, ‘Which one?’ She realized something had happened to one of the boys. And I said ‘Jonathan.’ And we literally both fell under the weight of the grief, collapsed to the sidewalk, just uncontrollably weeping. It’s hard to explain the pain and the trauma that one experiences getting that kind of news. You’re in a cloud. It’s like you don’t even know what’s going on around you.”

‘Here’s to Beating Retards’

Employment standards are low at the Office for People With Developmental Disabilities. Not only were people with criminal convictions hired, but since 2006, some 125 workers who were fired from jobs there were rehired — a practice that agency officials said they would move to halt after The Times questioned them about it.

A recent case at the Monroe Developmental Center in Rochester, which failed a December inspection by the Health Department, highlighted the lax practices. Inspectors found that an allegation of physical abuse was substantiated against an employee who yelled at a resident, lunged toward him and “pushed him into the wall.”

Inspectors discovered that the same employee had previously been fired in 2007, after being involved in a case of misconduct and for threatening a supervisor. The employee also had been convicted of criminal mischief, a misdemeanor, not related to her job. In her personnel file, there were “do not rehire” recommendations from “numerous supervisors and administrators at the facility when she was terminated in 2007,” inspectors found. And yet she was hired again.

Ms. Burke, the agency’s commissioner, said in a statement that despite the past practice, she “will do everything in my power to not allow the rehiring of employees who have been previously terminated.”

The Sunmount Developmental Center in the Adirondacks, a repository for residents deemed more challenging, also failed an inspection last year. The supervisor accused of four episodes of abuse of residents continued to have contact with them even as the investigations took place, inspectors found.

Inspectors also found that a resident had claimed that a caretaker had called him a “retard” and threatened to have another resident “beat him up.” When the resident was indeed assaulted by the second resident, inspectors found that Sunmount officials did not investigate whether the employee had instigated the fight. In another episode, an employee dumped ketchup, salt and pepper on the head of a resident during dinner. The agency’s response was to transfer the employee to another unit.

Around the same time, one Sunmount resident, Eddie Adkins, was set upon by several staff members after he grew upset that he was not allowed to go to the bathroom, according to an internal report provided to The Times by Mr. Adkins’s family, who were able to get the report because of a disclosure law passed in the wake of Jonathan Carey’s death.

A deaf resident told state investigators that he saw four state employees punching Mr. Adkins while he was sitting on a couch — “I did not like that,” he told investigators, adding that he was so disturbed that he turned his hearing aid off during the melee.

Mr. Adkins’s case underscores the difficulty of this work: While many residents are defenseless — children like Jonathan Carey, or those with cerebral palsy or other debilitating diseases — Mr. Adkins stands 6 feet 5, and his weight has topped 300 pounds. He is autistic and bipolar, and has a history of biting himself and his caregivers and has been jailed for doing so.

But his caretakers can also be violent. The internal report found that Mr. Adkins’s “left eye was swollen and there was bruising under the left eye.”

“There was a large vertical abrasion to Mr. Adkins’s outer left eye,” the report continued, “and a small abrasion on the left side, inner corner of Mr. Adkins’s nose near his eye. There was a small linear abrasion on the outer corner of Mr. Adkins’s right eye.”

An agency spokeswoman said she could not comment on specific cases, citing confidentiality rights of residents.

After the attack, five staff members were placed on administrative leave. One of them wrote in a Facebook posting: “im on administration vacation as well,” adding, “cheers brother here’s to beating retards.”

Trouble Endures

State officials have said they took a number of steps to clean up O. D. Heck after Jonathan’s death.

Those included increasing the number of clinical staff members and direct-care workers and putting more emphasis on teaching residents skills that will help them move to small group homes, the agency said.

But Mary Maioriello, an employee at O. D. Heck until she resigned this year, said a culture of abuse continued. Ms. Maioriello was hired as a trainee last year, and witnessed several disturbing episodes. In one case, two employees played a game they called “Fetch,” throwing French fries on the floor and laughing as one resident dived to get them, while another jumped out of his recliner and a third ate them off the floor.

Ms. Maioriello was a 24-year-old trainee at the time. She was horrified, but also intimidated.

“When I first started working there, I was told, ‘Keep your eyes open and your mouth shut and you’ll do just fine here,’ ” she recalled in an interview. “It was kind of like a code that you just didn’t turn anything in. A word that they used a lot was a ‘snitch.’ That’s what it felt like to me, like I was in some kind of gang or cult.”

Ms. Maioriello told her mother what she had seen; her mother told a friend who knew someone at the agency. When Ms. Maioriello was brought in for questioning, she went further, telling her supervisors about several other episodes she had witnessed.

The most serious involved a blue wooden stick stashed in a cabinet drawer in a common room. One supervisor, Ms. Maioriello wrote, called the stick the “magic wand,” and it was used to repeatedly beat a resident whom Ms. Maioriello described as nonverbal and weighing less than 90 pounds.

Ms. Maioriello told management that she had seen three employees, including the supervisor, hitting a resident with the stick at different times. The same resident was confined by employees to a gym mat, and if he stepped off it, he was hit with the stick, snapped with a towel or had his hands stepped on. Employees also appeared to enjoy taunting residents; two workers told one resident they were going to knock over his ceramic frog collection — they called the game “Kick the Frog.”

For Ms. Maioriello, it was a painful experience. She said she had chosen to work with the disabled because her 3-year-old son has developmental problems. She aspires to being a nurse and has been a vigorous advocate for her son. But at O. D. Heck, she felt stuck between her need for a job and her determination to speak up about the behavior.

“I just thought, oh my God, what is wrong with these people?” Ms. Maioriello said of the other employees, adding: “I spoke to my mother, I spoke to some friends, I was telling them, you know, these terrible things. Should I quit? I’m a single mother, I need a paycheck. I don’t know what to do. I’m scared of retaliation. And then once I finally turned it in, I feel like it fell on deaf ears.”

A second state employee who worked at O. D. Heck corroborated much of Ms. Maioriello’s account, but asked not to be identified for fear of being fired.

“There’s abuse going on all the time,” the employee said. “They don’t report anything. They hide everything and cover for each other.”

This employee also saw the resident who was restricted to a gym mat. “I saw them shove socks in his mouth, they shake keys in front of him, they treated him like an animal,” the employee said.

Little resulted from Ms. Maioriello’s reports to management. Her co-workers at first blamed someone else for reporting them to management, and the word “snitch” was spray-painted on the worker’s car. Ms. Maioriello went on leave and resigned in March, threatening to go to the news media before she left.

The Official Response

It was then that Kate Bishop, who supervises O. D. Heck and group homes in a nine-county region stretching from Albany into the Adirondacks, met with Ms. Maioriello.

In an emotional hourlong encounter that she secretly recorded, Ms. Maioriello challenged Ms. Bishop and Andrew Morgese, the agency’s head of internal affairs, who was also present, reminding them that she had reported that a resident was being regularly beaten with a stick. She asked why the matter had not been reported to law enforcement. “Were the police notified?” Ms. Maioriello asked, according to the tape, which was provided to The Times. “Because it was an assault. That is the law, that the police are to be notified when an individual is assaulted. Were they notified?”

“Well,” Ms. Bishop said, “in the original report that you made, it didn’t appear to rise to the level of ...”

“Hitting someone with a stick?” Ms. Maioriello asked.

“In the initial manner described ...” Ms. Bishop responded.

“Really?” Ms. Maioriello said. “So what’s the severity that you have to make an assault?”

Later in the conversation, Ms. Maioriello again asked Ms. Bishop, “Is it an assault to hit him with a stick?”

Ms. Bishop replied, “Not seeing it, I couldn’t answer that question.”

She put the same question to Mr. Morgese.

“Shift after shift after shift, he was hit with this stick by several employees,” she said. “Is that an assault?”

Mr. Morgese replied, “I don’t think I can answer that question.”

At one point during the exchange, Mr. Morgese suggested that it was the responsibility of Ms. Maioriello, a trainee, to report the cases to law enforcement, even though management had been made aware of them.

“I’m not trying to turn this around,” he said, “but if you’re indicating that you believe you witnessed the assault of an individual who was being repeatedly hit with a stick, any one of our employees has not only an opportunity to report, they have a duty to report, they have a duty to intervene on behalf of that individual. If they can’t intervene safely on behalf of that individual, if he’s being assaulted, they have a duty to notify law enforcement.”

Shortly after the meeting, Ms. Maioriello reported the matter to the Niskayuna Police Department. While an officer who met with her said he was not sure how to respond to such episodes inside a state facility, she has since been contacted by the department seeking more information.

The Times asked the Office for People With Developmental Disabilities why Ms. Bishop and Mr. Morgese could not say what an assault was and why Ms. Maioriello’s supervisors had not forwarded her allegations to law enforcement.

The state disputed the framing of the question.

“Your characterization of these exchanges is not consistent with our understanding of the facts regarding those conversations,” an agency spokeswoman said, adding, “Without question, it is the agency policy that if a staff person hit an individual with a stick, law enforcement should be notified.”

The state was subsequently informed by The Times that a tape existed of the encounter, and shortly thereafter both Ms. Bishop and Mr. Morgese were removed from their positions. Ms. Bishop was reassigned to the central office, and Mr. Morgese was demoted and sent to a regional office.

Mr. Morgese, through the agency, declined to comment. In a brief statement, Ms. Bishop said she was inspired to get into the field by a developmentally disabled sister.

“I believe that I provided the highest-quality leadership,” she said, “always guided by respect and dignity for the people we are honored to serve.”