In State Care, 1,200 Deaths and Few Answers
A 2009 fire at a group home in Wells, N.Y., that killed four disabled residents revealed shortcomings in staff training and safety standards.
By DANNY HAKIM and RUSS BUETTNER
For James Michael Taylor, an evening bath became a death sentence.
Photograph courtesy of Taylor Family.
James and Joan Taylor. He drowned when he was left in a bathtub in 2005.
Mr. Taylor, who was 41 and a quadriplegic, had little more ability than a newborn baby to lift his head. Bathing him required the constant attention of a staff member at the group home for the developmentally disabled where he lived, near Schenectady, N.Y.
One summer night in 2005, a worker lowered Mr. Taylor into the tub, turned on the water and left the room. Over the next 15 minutes, the water slowly rose over his head. He drowned before anyone returned.
Joan Taylor, his mother, remembers the words her husband said as dirt was shoveled onto their son’s grave.
“This is the last time they’re going to dump on you,” he told his dead son.
James Taylor’s death was no aberration.
In New York, it is unusually common for developmentally disabled people in state care to die for reasons other than natural causes.
One in six of all deaths in state and privately run homes, or more than 1,200 in the past decade, have been attributed to either unnatural or unknown causes, according to data obtained by The New York Times that has never been released.
The figure is more like one in 25 in Connecticut and Massachusetts, which are among the few states that release such data.
What’s more, New York has made little effort to track or thoroughly investigate the deaths to look for troubling trends, resulting in the same kinds of errors and preventable deaths, over and over.
The state does not even collect statistics on specific causes of death, leaving many designated as “unknown,” sometimes even after a medical examiner has made a ruling.
The Times undertook its own analysis of death records and found disturbing patterns: some residents who were not supposed to be left alone with food choked in bathrooms and kitchens. Others who needed help on stairs tumbled alone to their deaths. Still others ran away again and again until they were found dead.
Mr. Taylor was hardly the only resident to drown in a bathtub. Another developmentally disabled man at a house run by the same nonprofit organization drowned in a tub four months earlier.
Through a Freedom of Information request to the State Commission on Quality of Care and Advocacy for Persons With Disabilities, The Times obtained data for all 7,118 cases of developmentally disabled people — those with conditions like cerebral palsy, autism and Down syndrome — who died while in state care over the past decade.
The data from the agency, which is responsible for overseeing treatment for the developmentally disabled, included only the broad “manner” in which people died — by homicide or suicide, accidents or natural causes.
By far the biggest category, other than natural causes, was “unknown,” accounting for 10 percent of all deaths in the system.
The records suggested problems in care may be contributing to those unexplained deaths. The average age of those who died of unknown causes was 40, while the average age of residents dying of natural causes was 54.
The Times reviewed the case files of all the deaths not resulting from natural causes that the commission investigated over the past decade and found there had been concerns about the quality of care in nearly half of the 222 cases.
The records also showed that problems leading to deaths rarely resulted in systemwide steps, like alerts to all operators of homes, to prevent mistakes from recurring. Responses were typically limited to the group home where a resident died.
At homes operated by nonprofit organizations, low-level employees were often fired or disciplined, but repercussions for executives were rare. At state-run homes, it is also difficult to take action against caregivers, who are represented by unions that contest disciplinary measures.
New York relies heavily on the operators of the homes to investigate and determine how a person in their care died and, in a vast majority of cases, accepts that determination. And the state has no uniform training for the nearly 100,000 workers at thousands of state and privately run homes and institutions.
The value of analyzing death records for problems in care that could be prevented through alerts or training has been well established, and is encouraged by the federal Government Accountability Office. Officials in Connecticut, for example, noticed four chokingdeaths in 2006, the first year the state published such data. They developed a statewide program — two days of initial training and a refresher course every two years thereafter. The state has had just one choking death since 2007. New York has had at least 21 during that same per“
It’s incredibly important,” said Terrence W. Macy, commissioner of the Department of Developmental Services in Connecticut. “If everybody knows you study it this hard and you have this level of detail, it’s going to have an impact.”
Bill Trojan/The Leader-Herald
A service for victims of the 2009 fire in Wells, N.Y., that killed four disabled residents. Stricter safety standards might have prevented the fire.
RICHARD WIDMEYER, 71: Mr. Widmeyer choked on a piece of bread that he had taken from a kitchen in a state-run home in Rome, N.Y., in 2004. The staff had supervised him during meals because of his history of eating too fast, but did not restrict his access to food at all times.
There is no question that it can be extremely challenging to care for the developmentally disabled, a population that includes some people who are fragile and immobile and others who are unruly and inclined toward violence. But the problems in the New York system appear especially troubling given that the state spends $10 billion a year caring for the developmentally disabled — more than California, Texas, Florida and Illinois combined — while providing services to fewer than half as many people as those states do.
Lawsuits are relatively rare after the deaths of developmentally disabled people in New York, in part because economic damages are difficult to prove, given that the victims are seldom employed. And sometimes families are simply grateful to the group home for years of care for their relative.
This year, Gov. Andrew M. Cuomo forced the commissioners of the two agencies that oversee the developmentally disabled to resign amid a Times investigation of group home workers who were beating and abusing residents.
In interviews, the officials who replaced them acknowledged problems with how the state tracks and seeks to prevent untimely deaths.
Courtney Burke, the commissioner of the Office for People With Developmental Disabilities, which operates and oversees thousands of group homes, acknowledged that her agency suffered from a lack of transparency and what she called “a culture of nonreporting.”
“One of the things I’m seeking to do,” she said last month, “is have better data on those deaths.”
A Recurring Problem
One evening last year, a large piece of London broil was left marinating in the refrigerator of a state-run group home in the hamlet of Golden’s Bridge, in Westchester County.
The kitchen was supposed to be locked overnight. As in many homes for the developmentally disabled, residents known to be at risk for choking were not allowed to be left alone with food. But the kitchen was open during the early morning of June 5, 2010. No one noticed as Cynthia Dupas left her bedroom, opened the refrigerator and bit off a chunk of raw beef. She collapsed outside her bedroom and died. She was 51.
Hers was hardly an isolated case. A quarter of the 222 death files reviewed by The Times involved a person choking to death. And given the state’s poor recordkeeping, the actual number of choking deaths is likely larger. The deaths often occur when residents try to eat food too quickly; physical limitations also play a role. Some of the fatalities came in quick succession:
At a home near the Finger Lakes in 2001, a resident died after stuffing down a steak that was left on the kitchen counter after dinner, in violation of safety guidelines for several residents.
Four months later, Maxwell Chanels died at a Schenectady-area group home after being left alone to eat a steak. A nonprofit group that cared for Mr. Chanels during the day had determined he was a choking risk who required mealtime supervision, but a second nonprofit agency that ran the group home where he lived had no such protections in place. He was 66.
Less than two weeks later, Virgil Macro was served a breakfast that had not been prepared according to a meal plan devised to keep him from choking. Staff members at his Dutchess County group home also failed to supervise him while he ate. He was 39.
In each case, the response suggested by the Commission on Quality of Care was mostly limited to the place where the death occurred. Workers who made mistakes were disciplined. Some employees in the home, or the local area, were retrained.
But other states take broader action.
In 2006, Ohio officials recognized an increase in choking deaths and issued a statewide alert.
A year later, California officials noticed a similar rise in one part of the state and began an educational program that reduced deaths.
A lack of standards and accepted definitions of basic terms also leads to deadly confusion.
Terms like “bite-size” and “chopped,” which are key to defining what is safe for a person to eat, can be left open to interpretation by the staff at a given institution or group home.
JAMEL TERENCE CHRISTIAN, 23: Mr. Christian choked to death in 2003 in a group home run by a nonprofit organization in Rensselaer, N.Y. An investigation questioned whether a plan to prevent him from eating dangerously fast had been put into effect.
The Commission on Quality of Care regularly asks individual homes to revisit those definitions, but the state has not resolved varying interpretations.
In contrast, Connecticut’s training materials, which the state credits with sharply reducing choking deaths, precisely define such terms with photographs and dimensions.
State officials in New York cannot even agree on how many people are dying. The Office for People With Developmental Disabilities says 933 people in state care died in 2009. The Commission on Quality of Care says 757 did. Neither agency could explain the discrepancy.
Outside experts said they were particularly puzzled that records maintained by the state would list the cause as “unknown” in more than 700 deaths over the past decade, and wondered how hard state officials had tried to determine what happened.
Bruce Simmons was one of the many people the state had listed as dead of unknown causes. But a review of the records from the state’s own investigation reveals what occurred. He lived in a group home in Cortland, N.Y., which kept him under tight supervision around food because of his history of stealing food and choking. But the nonprofit group that took care of him during the day decided that was not necessary, and he choked to death in November 2008. He was 52.
Lapses in Fire Safety
All that is left of the house at 1534 State Route 30 in the Adirondack town of Wells is a grassy field and an empty driveway.
More than two and a half years ago, the house, home to nine developmentally disabled residents, burned to the ground, killing four of them.
The fire revealed shortcomings in staff training and safety standards. And the home’s evacuation plans were based on unrealistic expectations that developmentally disabled residents would be able to flee in an emergency.
Large institutions for the developmentally disabled are built much like hospitals, with extensive fire safety measures. The group home had some safety features, like sprinklers in parts of the house, but was permitted to meet building codes akin to those of homes with able-bodied residents who know they should flee from a fire.
Yet though the Wells fire took place in March 2009, the state has not undertaken a broad review of whether group homes, which now care for a vast majority of the state’s developmentally disabled, have appropriate safety modifications to protect residents who often do not understand that they are in danger.
The fire at the house, known as Riverview, occurred in the early morning, starting in a trash can on a screen porch and spreading rapidly up vinyl siding into the attic of the L-shaped, one-story residence.
An automatic alarm call was made at 5:25 a.m. to a monitoring company. The protocol established by the Office for People With Developmental Disabilities required that the company call the group home before notifying the Fire Department, which wasted minutes and violated state fire standards. By 5:30, the local fire company was dispatched, alerting Ken Hoffman, a firefighter who lived across the street and rushed over to help.
When Mr. Hoffman arrived, all nine residents were still inside, but he and two staff members helped most of them evacuate. Then one resident fell, distracting the two staff members as three residents wandered back into the burning house, according to state records.
There were further complications. The state had not informed local fire officials about the presence of the group home, leaving them ill prepared.
“There was no contact,” said Peter Byrne, a Rockland County fire safety official who was on the panel of experts convened by the state after the fire. “If I roll into a single-family dwelling at 2 or 3 in the morning, I’m expecting mom, dad and 2.3 kids, whatever the average is, not 11 challenged individuals.”
Credible investigations were performed — one by a local grand jury, one by the State Office of Fire Prevention and Control, and another by the panel that included Mr. Byrne.