ROME, N.Y. — In his bed at a New York state group home for the severely disabled, Steven Wenger lay helpless against a silent invader.
A slimy, wriggling clump was growing around the hole in his throat near his breathing tube. Nurses peered closer and made a discovery almost unheard of in modern American health care: maggots.
For Wenger, unable to walk, speak, or breathe without a ventilator since a car accident 26 years ago, it was the first of two infestations of the larval flies in his throat over successive days last summer, resulting in repeated trips to an emergency room and a state investigation that found days of neglect by caretakers. And if The Associated Press had not obtained a confidential report on the case, it's unlikely anyone in the outside world would have known anything about it.
That's because in New York and most other states, details of abuse and neglect investigations in state-regulated institutions for the disabled, addicted and mentally ill are almost never made public, even with the names blacked out.
As a result, it's easier to check the health record of a neighborhood restaurant than to find out about lapses in care in state institutions and group homes that people may be considering for their loved ones’ around-the-clock care.
“If a complaint is substantiated, there should be a pretty detailed report ... but you cannot get that information,” said Robyn Grant, director of public policy at the National Consumer Voice For Quality Long-Term Care, a Washington-based advocacy group.
While many states provide extensive information about hospitals and nursing homes, Grant said, most are relatively silent when it comes to data on care of the disabled in state-regulated facilities. She noted there are no consistent disclosure rules, and in many states reports are “redacted to a ridiculous point, to a point where the sentences don't make any sense.”
In New York, which has one of the nation's largest disabled-care systems, abuse and neglect probes are overseen by the state's Justice Center for the Protection of People With Special Needs. Spokesman William Reynolds said it cannot release detailed information on its cases — even with identifying material removed — because of state and federal rules involving medical and personnel privacy, and law enforcement investigations.
But advocates for the disabled and some lawmakers say the Justice Center is keeping too much information hidden, either to shield Democratic Gov. Andrew Cuomo's administration from embarrassing headlines or to protect the flow of billions in Medicaid dollars to a sprawling system responsible for about 1 million disabled, addicted and mentally ill people.
“What the hell are they hiding?” asked Harvey Weisenberg, a former state lawmaker whose son who is disabled. “They won't tell the public, or anybody for that matter, what they're doing.”
It's a system so tightly closed that State Comptroller Thomas DiNapoli was stonewalled this year when he tried to audit the Justice Center. He obtained just 8 percent of the reports requested on the 82,000 abuse and neglect complaints between 2013 and 2016.
“What's troubling is this cloud of secrecy that seems to cover their operations,” said DiNapoli, a Democrat. “So you don't know if they're doing the job that they're expected to do.”
High-profile cases involving criminal charges are often announced in news releases. But as for more routine cases, the Justice Center discloses only broad statistics on the thousands of neglect and abuse allegations made each year, and whether they were substantiated. Those include everything from inadequate supervision of patients to physical abuse, sexual assault and death.
Last year, for example, it reported substantiating 4,169 cases of abuse or neglect in public and private care regulated by the state.
Getting more details, even by Freedom of Information request, is difficult. It took advocates eight months to get a bare-bones listing of the numbers of deaths and sexual assaults by facility over a 2½-year period.
Finding out the punishments imposed is even harder.
The Justice Center reported that 251 employees at state-owned facilities lost their jobs in 2016 over abuse or neglect. Yet more than three-quarters of the substantiated cases happened at privately run facilities, and state officials say they don't track what happens to those employees.
New York is no outlier. In Florida, home to one of the most open government records policies, officials routinely cite privacy laws to withhold details about deaths of people in state care. Two 2016 federal inspector general reports faulted Massachusetts and Connecticut for failing to document or properly report all their serious cases of abuse and neglect. California's highest court chided health officials in a 2015 case for redacting records on abuse so heavily that they revealed only “scant” information.
In the absence of publicly available information, Leslie Morrison, director of investigations for the advocacy group Disability Rights California, advises families to do their own shoe-leather detective work.
“Go visit the facility. There's nothing better than walking around, doing a sniff test, doing it unannounced,” she said. “If you can get in the door, that is. If you can't get in the door, that might suggest something to me also.”
In Wenger's case in a group home in the upstate New York city of Rome, state investigators found that the 41-year-old man's maggot infestations were the result of several days of neglect by caretakers who were supposed to keep the tracheostomy clean. Justice Center officials said the six-month investigation couldn't pinpoint the employees at fault, so no one was punished. Instead, investigators suggested the home “consider” brushing up on training on the care of tracheostomies. State officials confirmed that training was done.
“I know Steven isn't important to anyone else,” said Walter Wenger, who has since moved his son to a hospital facility, “but he's a child of God and no one should be treated like this.”
Maggots in a tracheostomy are almost unheard of in the developed world, with only a few cases in the medical literature, according to experts. Maggots in bedsores are more common.
“If someone is keeping everything wiped clean, it shouldn't happen,” said Dr. Karl Steinberg, a San Diego-area physician who has served as medical director for hospices and nursing homes.
Maggots are typically associated with filth, since flies deposit their eggs on dead or decaying tissue. New York's investigation found no evidence the infestation was caused by unsanitary conditions in the eight-resident group home, known as Individual Residential Alternative-3, or IRA-3.
Instead, the author of the investigative report offered another possible explanation: Since Wenger was regularly taken outside for fresh air, the maggots may have been laid on him by flies lured by the smell of manure spread on a vegetable farm across the street. The owner of the farm disputed that theory, saying he doesn't use manure.
Walter Wenger, who is now weighing whether to sue over the maggot infestation, said he at one point considered sending his son back to the group home, in part because it is only a short drive from his home. But officials rejected that, saying he now needs a greater level of care.
“Now that he's got maggots they want him out,” he said. “He's a side of beef that no one wants.”