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…