A 4-year-old boy with severe developmental disabilities died in his nursing facility when he had difficulty breathing and no one heard the alarm on his monitor. Three weeks later, a 4-year-old girldied at the home in an almost identical way.
When state regulators investigated, records show, they found that numerous alarms at the Chicago facility had not been set correctly or the volume had been turned down so low that the sound could not be heard.
Such failures of care have repeatedly jeopardized the lives of fragile children at the facility now known as Alden Village North, a Tribune investigation has found. Records show the problems have persisted for a decade, through various owners, sometimes with deadly consequences.
Illnesses have been ignored, life-support alarms have gone unanswered and residents with complex medical problems have been left unattended. Even basic hygiene, such as bathing children and changing diapers, has been neglected.
Instead of cracking down, regulators and lawmakers have allowed problems to worsen.
Fines have been dropped or reduced, and deaths at the facility haven't been fully investigated. Illinois' rules are so weak, inconsistent and reliant on industry self-reporting that the state cannot gauge the true scope of problems at Alden and the 300 other facilities caring for people with developmental disabilities.
And earlier this year, when state lawmakers had a rare chance to boost oversight of these homes, they did not.
Deaths of children living at Alden have occurred with alarming regularity. Last year, records show, 12-year-old Derrick Black died when he was left unmonitored because his night nurse left work early and his day nurse showed up late. In 2008, five children and young adults died within threemonths of each other, yet the facility did not thoroughly investigate any of the deaths.
In all, 13 children and young adults have died at the facility since 2000in cases that resulted in state citations for neglect or for failure to investigate adequately in order to rule out neglect, the Tribune found.
The newspaper's investigation was based on state and court records as well as interviews with former employees and parents of Alden children. Although state records typically do not disclose identities of children who have died at nursing facilities, the Tribune tracked down names by cross-checking public inspection reports with other government documents.
Five parents of children who died at the facility said they did not know until they were informed by the newspaper that regulators had cited the home in the deaths. "Wow. I had no idea," said Esmeralda Alvarado, whose 1-year-old son, Gabriel Melgar, died in 2008.
Although the Illinois Department of Public Health has levied $190,000 in fines against the home in the past decade, the facility has not paid the full amount of any penalty, records show. Instead, it has negotiated reduced fines, is currently challenging others and, in one case, simply never paid.
Since 2000 the facility has paid just $21,450 in fines.
In the case of the two 4-year-oldswho died in 2004 when no one heard their alarms, the state fined the home $50,000 but never collected because the facility changed owners. The state usually denies a license to new owners until an outstanding fine is paid, but a state employee erred and allowed Alden to take over without paying, said Melaney Arnold, spokeswoman for the Illinois Department of Public Health.
Arnold said the state had hoped that Alden would improve care at the facility. New owners, she said, often straighten out troubled homes.
"In this case," she said, "it didn't happen."
The state has found 10 serious violations at Alden since 2009, far more than at any other Illinois facility that cares primarily for children with developmental disabilities, records show.
The vast majority of residents at Alden Village North, a for-profit facility at 7464 N. Sheridan Road, have severe or profound cognitive disabilities. Some cannot walk, talk or call for help. Many are in wheelchairs and diapers. Some breathe and eat through tubes. More than half have epilepsy or cerebral palsy. Several have impaired vision.
Their parents, in some cases, are extremely indigent and seldom visit or advocate on their children's behalf. In trying to reach the parents of the 13 children who died, the Tribune found that four of them were in jail or prison.
According to state records, Alden's operator is Floyd A. Schlossberg, president of Chicago-based Alden Management Services. His firm runs more than 20 nursing facilities in Illinois, primarily providing care for the elderly. His firm took over the home in January 2008, after which seven of the 13 deaths identified by the Tribune occurred.
Schlossberg's firm did not respond to repeated requests for interviews or answer written questions submitted by the newspaper.
In a brief statement, his company wrote: "We cannot comment on these matters due to pending litigation. However, we want our residents and their families to know we strive to provide quality resident care for the children and young adults in our care."
While the Illinois Department of Public Health says it has "grave concerns" about the facility and will close it if violations persist, ineffective state laws and regulatory policies almost guarantee that problems will be missed.
For example, when a child dies at Alden or a similar facility, the death does not automatically trigger an investigation, either by the home or by regulators. The state investigates deaths only if the facility reports it to officials, the public submits a tip or a regulator discovers an unexplained death during a routine inspection.
If a schoolteacher had not complained to regulators last year about the death of Jeremiah Clark, a 9-year-old Alden resident who had suffered for two days with a bowel obstruction, his ordeal might not have come to light and the facility might not have been penalized.
Except for a handful of state-operated homes, facilities are not even required to notify regulators about every resident's death. And private facilities don't have to conduct their own investigation of a child's death unless administrators at the home deem it unusual or unexpected.
"These facilities really have no incentive to report all deaths to the Department of Public Health," Arnold said.
Lawmakers loosened the reporting rules even further last year. Instead of notifying regulators every time a resident is sent to a hospital, homes must report only those cases caused by accidents or unusual incidents — a judgment the facility gets to make.
And when the legislature passed sweeping nursing home reforms earlier this year, boosting minimum staffing levels, stepping up criminal background checks on new residents and tightening rules on psychotropic medications, lawmakers quietly exempted Alden and other facilities caring for the developmentally disabled — about a quarter of the 1,252 facilities providing long-term care in Illinois.
"I thought they should have been included, but we had to compromise," recalled Wendy Meltzer, a leading advocate for nursing home residents who was instrumental in crafting the legislation.
She said that if homes for the developmentally disabled had been included, owners of the facilities would have fought the measure, jeopardizing the entire reform package. More important, she said, no one was demanding that those residents be covered.
"There weren't people lobbying on their behalf," she said. "It's really sad."
Children with multiple disabilities often wear protective medical devices such as pulse oximeters, which are typically clipped onto a finger to measure heart rate and oxygen saturation in the blood. Others have apnea monitors, which measure heart and respiratory rates.
If the devices detect a problem — a child's pulse rate suddenly drops, for instance — an alarm is supposed to sound and nurses are supposed to respond.
But that doesn't always happen.
Take the case of the two 4-year-olds who died in the summer of 2004 at Mosaic Living Center, the facility now known as Alden Village North.
At 5:30 a.m. a nurse checked on the boy and found he was fine, with a monitor registering his oxygen saturation at 100 percent. But 45 minutes later, records show, a nursing assistant saw that the oxygen reading had dropped to 88 percent. She alerted a respiratory therapist and nurse, who found the boy not breathing. No staffer, investigators later concluded, had heard alarms from the monitor. The therapist and nurse tried to save the boy, but he died at 7:29 a.m.
Three weeks later, state records show, a 4-year-old girl died when her breathing tube developed a kink and no one heard the alarms.
Moreover, investigators found, the pulse oximeters used on other residents were inaudible and the 20 apnea devices in the facility were not set correctly. The respiratory therapy director told investigators no one at the home knew the proper settings.
The problem was so pervasive that an inspector investigating the deaths of the 4-year-olds witnessed a close call involving another child.
A respiratory therapist ran into the hallway yelling "code blue" after a 5-year-old boy had dislodged his breathing tube and was turning pale, records show. The boy survived, but the inspector noticed that alarms could not be heard in the hallway. When the inspector asked why, the therapist said he thought they were broken.
A similar issue plagued the facility in 2000, when several children were accidentally pulling out their tracheotomy breathing tubes.
The facility had to call 911 on two occasions when a baby girl dislodged her tube and was found unconscious, state inspection records show. A 4-year-old boy with cognitive disabilities pulled out his tube four times.
Then 2-year-old Brian Marrero, who was in the initial stages of having his trach tube medically removed, dislodged it several times. His family told the Tribune he was in the facility only until he could breathe without the device.
One morning nurses found the boy unconscious, with his lips blue and his tube out. He was pronounced dead 35 minutes later. He had been in the facility just 29 days.
Brian's doctor, Audrius Plioplys, who also served as the facility's medical director from 1999 to 2003, told the Tribune that staffers had not informed him the boy was pulling out his trach tube. When asked whether Brian's death was preventable, he said: "In retrospect, certainly."
Brian's family sued the facility, alleging neglect, including the lack of alarms. The suit was settled out of court for $300,000.
"I don't trust nobody now with my kids," said Crenly Marrero, Brian's father.
Over the years, the facility has vowed to improve its use of alarms and monitors, but its lax approach continued, records show.
In the deaths of three children from December 2007 to April 2008, the state cited the home for, among other violations, not investigating whether alarms had played a role — whether they had gone off, were immediately answered or were even working.
Early last year, an Alden nurse walked into the room of 12-year-old Derrick Black and found him slumped in his wheelchair — unconscious, not breathing, eyes fixed. Paramedics pronounced him dead 12 minutes later.
Derrick had profound mental disabilities and breathed through a tracheotomy tube, according to state records. He couldn't walk or talk but was able to communicate through some sign and body language.
The facility's administrator told state investigators that the boy had not been ill before he died and that nothing unusual had occurred that morning.
"Maybe it was just his time," she said.
But the investigators weren't so sure. They concluded that Derrick had been left unattended just before he died. In addition, records show, a nurse's aide made a series of crucial errors involving Derrick's feeding tube, one of which he attributed to the fact that no one was readily available to assist him.
Derrick's death underscores a chronic problem at the facility:lack of staffing.
For instance, when 1-year-old Gabriel Melgar and 19-year-old Justin Green died unexpectedly within six days of each other in March 2008, regulators cited Alden for, among other violations, not having enough staff to thoroughly investigate the deaths to rule out neglect.
Threatened with a cutoff of its Medicaid funding, Alden promised regulators it would investigate the two deaths within three days. But when the Tribune asked the state for documents related to the follow-up inquiry, regulators said they had none.
Alden also vowed to address staffing issues, but several months later an 11-year-old boy bruised his chest when he crawled onto a cabinet and it fell on him. Records show an aide had left the boy unsupervised in order to assist two staffers caring for 32 residents.
Several former employees of the facility told the Tribune that workers were often overwhelmed. "They had to run from one client to another," said Roy Filson, a case manager from 2004 to 2006. "They had to change a diaper. Or they had to feed someone. It was just run, run, run."
Filson said he was fired from the facility in 2006, in part because he had complained about staffing levels. He is now a caseworker at Anixter Center, a Chicago nonprofit organization serving people with disabilities.
Samantha Cortez, a case manager in 2003 and 2004, said nursing aides often called in sick, and the facility rarely arranged for replacements. In such situations, Filson said, "the only way to get through the day was take some shortcuts," such as putting children to bed early. "They are kind of put in their rooms and unintentionally abandoned," Filson said.
The day Derrick died, Alden staff had left him unattended at a particularly vulnerable time.
At 6 a.m., he was being fed through a tube when a nurse's aide came in to bathe him in bed. The aide positioned the bed flat for the bath even though Derrick's medical orders required that he be upright during feedings, records state.
The aide also disconnected and reconnected the feeding tube to dress Derrick — a task that regulators said should have been done by a nurse, not an aide. The aide then lifted Derrick to his wheelchair, even though the boy's medical file indicated that, to avoid accidents, two people were required to move him. The aide told investigators he lifted Derrick himself because "no one else was around."
Once in his wheelchair, Derrick started coughing fluids from his mouth and breathing tube. The aide said he alerted the boy's night nurse, who told investigators she suctioned the secretions, though regulators said this was not documented in her nursing notes.
The night nurse then left work early, records state. She told investigators that when she left, Derrick was in his wheelchair, alert, with his eyes open.
The boy's day nurse arrived late, leaving Derrick without an assigned nurse from 7:15 to 7:29 a.m., records show.
A minute later, at 7:30 a.m., another nurse found Derrick unresponsive, with an unusually large amount of secretions on the front of his shirt, according to the nurse's statement to investigators. Nurses and paramedics tried to revive the boy to no avail. According to the facility, Derrick's death certificate said he died from "pulmonary, respiratory arrest."
The state cited Alden for neglect and levied a $25,000 fine, which the facility is contesting. A hearing is set for January.
Derrick's mother, Stephanie Black, filed a wrongful-death suit against Alden in August. She and her boyfriend, Carlton Stinson, said they did not know until they were told by the Tribune that other children had died at the facility in cases involving neglect.
"See, honey?" Stinson said to her. "We're not the only ones."