By Danny Hakim and Russ Buettner
For James Michael Taylor, an evening bath became a death sentence. 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 choking deaths 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 period.
“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.”
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 into 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.
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 in formed 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.
But a follow-up review undertaken by the two agencies most responsible for the developmentally disabled — the Office for People With Developmental Disabilities and the Commission on Quality of Care — included questions like whether residents’ day-to-day medical care needs were being met.
The questions “were not germane to the fundamental questions posed by the Wells fire — what was the cause of the fire and what can we do in the future to prevent such fires from occurring in such a tragic manner,” Roger Bearden, the new head of the commission, said in an interview. Like most group homes in New York, the Riverview house was required to meet residential building codes, which are less than stringent.
There were no sprinklers in the attic at the house, or on the screen porch where the fire started. Records showed that the building’s original plans required fire retardant materials on the porch ceiling and that a planned barrier wall in the attic was abandoned during construction. While the house was required to meet standards from the National Fire Protection Association, an interview with a top association official suggests that while the standards are open to interpretation, the house could have been more robustly protected.
“There’s been an unresolved question about why a sprinkler wasn’t provided on that porch area,” said Robert E. Solomon, a fire safety expert at the association who served on the state panel. “Our standards would have probably put a sprinkler on that porch area where that fire occurred,” he said, which could have prevented the fire from spreading.
The Riverview case also underscores widespread problems in how fire drills at group homes have been conducted. The Times reported in March that a whistle-blower warned a senior state official in 2008 that drill records were being routinely faked or implausibly speedy evacuation times were being claimed. State investigators found that was the case at the Riverview house.
The staff also seemed unprepared; time was spent battling the fire with an extinguisher instead of evacuating residents. The grand jury convened by the district attorney of Hamilton County noted that fires were common in group homes, adding, “It would be a grave mistake to view Riverview’s tragedy as an isolated incident.”
Some steps have been taken since the fire: tighter rules guiding new construction, bringing in outside supervisors for fire drills and outside experts for inspections. But Ms. Burke’s agency did not say when it would review whether other homes in the system might also be lacking fire safety features sufficient enough for developmentally disabled residents. After several weeks of inquiries from The Times, Ms. Burke said she would reconvene the state panel that investigated the fire. Mr. Hoffman said he could not shake the memory of the fire.
“It’s still something that comes back to my mind on a weekly basis,” he said. “We lost four neighbors that night.”
A System’s Failure
No one told Joan Taylor, after her son James died in August 2005, that there had been a similar bathtub drowning four months earlier. Or that the other drowning, like her son’s, took place at a group home operated by a local chapter of the New York State ARC, the nation’s largest nonprofit organization serving the developmentally disabled. In both cases, there had been concerns that ARC had too few staff members to supervise the developmentally disabled residents.
Dalton Lacomb died at the ARC home in Malone, N.Y., in April 2005, after being left alone in a bath for up to 20 minutes. The house had 11 residents and one overnight staff member on duty. The state recommended hiring more employees, but backed off after discussions with ARC management.
The death “wasn’t related to staffing levels,” Lester G. Parker, executive director of the Adirondack ARC, which oversees the Malone house, said in an interview. “It was related to a staff person clearly and significantly neglecting their duties.”
Mrs. Taylor had pushed for an increase in staffing at her son’s group home near Schenectady, where three workers looked after eight severely developmentally disabled residents.
ARC officials in Schenectady declined to comment. After Mr. Taylor drowned, the organization’s only significant response was to fire his caregiver.
“The guy who left James unattended is the scapegoat, and the agency really took no responsibility from the top,” Mr. Taylor’s sister, Patricia Taylor, said.
Marc Brandt, ARC’s statewide leader, acknowledged that no broad changes were enacted after the drownings, but said it was up to the state, not his organization, to take action.
“If they see anything that is wrong, they’ve always let us know,” he said. Mr. Taylor’s mother has been a fierce advocate for people with developmental disabilities for decades.
Mrs. Taylor, 86, started a parent group, lobbied in Albany and was appointed to the capital-area Board of Visitors of the Office for People With Developmental Disabilities. She is most proud of helping get legislation passed in 2002 that gave parents control over end-of-life decisions for the developmentally disabled. “I was insulted I couldn’t make that decision for my son, who I wanted to die with dignity,” she said.
On a recent day, as Mrs. Taylor sat on the back porch of her apartment at a retirement home in Saratoga Springs, wearing tennis shoes and shorts, she leafed through the guestbook from her son’s funeral, filled with 300 signatures, including those of local elected officials.
“I don’t know if my kid died with dignity or not,” she said. She grew up on Long Island and trained as a nurse; her late husband, Robert, was an engineer with General Electric. She knew something was wrong with James, their youngest child, when he was still a baby. Suspecting he could not hear, she slammed cupboard doors near their infant son, and he did not flinch.
She got a much greater shock after a doctor told her, “Your son is mentally retarded.”
Doctors recommended that he be institutionalized. Mrs. Taylor resisted, but she had five other children. Dealing with James, her sixth child — quadriplegic, sleepless and with the intellectual capacity of a 3-month-old — filled her days and nights.
Eventually, she felt she had no choice. “I will never forget that day,” Mrs. Taylor once wrote in an essay. “My husband and I woke up that morning both fighting back the tears. I dressed James in his very best suit and we drove the 30 miles back to the institution and left him there.”
“We both cried all the way home,” she said. “I thought it was the worst day of my life.”
She has done advocacy work with ARC and Mr. Brandt over the years, and calls him “a saint,” but she is angry about what happened to her son. Her daughter said it was because of her mother’s advocacy work that Mr. Taylor’s death received attention.
She worries about the developmentally disabled who die and have no family around to push for answers for them.
“These deaths are marginalized because these sort of people are not valued by society,” Patricia Taylor said.
When she was in the fourth grade, she dreamed of taking her brother and running away with him, protecting him. She finds it hard to accept that no one was able to protect him after he grew up.
“I believe that God put these people here for a purpose, because if we didn’t have them to look after, we would lose our humanity,” she said. “How would we know compassion? It says in the Bible, do ye so unto the least of my brothers. I think that’s what it’s all about.”