'FIX THE DIVISION' Four workers were suspended without pay this year at Woodbridge Developmental Center for falsifying night checks in the case of Wilson -- one of 12 "sudden and unexpected deaths" at the state institutions. Another nurse faces disciplinary action for neglect of duty in an earlier death in January.

Last year, four people died traumatically at the New Lisbon Developmental Center in Burlington County. Two were murdered.

"Something's terribly wrong there," said Steven M. Eidelman, executive director of the Arc of the United States, formerly known as the Association for Retarded Citizens, a national advocacy group.

Harris, who was named commissioner in March, said Gov. James E. McGreevey told her from the start that her first order of business would be to "fix the Division of Developmental Disabilities."

The new resolve to correct the problems began in late 2000 with a complaint from a resident at Woodbine Developmental Center about patient care. That sparked a probe by the federal Centers for Medicare and Medicaid Services. A string of murders and accidental deaths in the months that followed set off more alarms.

In January 2001, a resident at New Lisbon was beaten to death by a roommate. Another resident was killed in March of that year after he walked away unnoticed and was struck by a van. A third resident died of head injuries in June when he slipped and fell, after being chased by an employee. In that case, it was determined that records of the incident had been falsified. And finally in September, a second resident was murdered as he slept.

Federal investigators fanned out to three other institutions and discovered major problems, including lack of staff and training.

James W. Smith, Harris's predecessor under the administration of acting Gov. Donald DiFrancesco, now heads the Division of Developmental Disabilities. For years, there had been discussions about increased staffing and maintenance at the centers, he said.

"Each year you ask, but rarely did you receive," he said.

Since the fall of 2001, the state has approved the hiring of 736 new workers and retained consultants to upgrade programs at the institutions. As of early September, the state had brought on 440 new hires, according to Human Services officials. At the same time, however, 281 workers have left, taking advantage of early retirement packages.

The new commissioner also created a unit solely responsible for investigating and tracking complaints.

SOLUTION AS PROBLEM

Advocates for the disabled, however, contend that the problem is not in fixing the institutions -- it is that the large state institutions continue to exist at all.

"It's a waste of time to try and fix these things," Eidelman said. "They dump a ton of money in there and they should work on getting those places closed. They'll get them re-certified tomorrow and they could be in the same boat six months from now."

More than three decades after most other states closed the doors to troubled places like Willowbrook in Staten Island and Pennhurst State School in Pennsylvania, New Jersey seems caught in a time warp. The state continues to rely on huge facilities to house people with disabilities considered so severe, they are thought to be largely incapable of caring for themselves.

The seven residential centers across the state, some dating to the early 1900s, are like self-contained small towns, found in mostly rural, out-of-the-way locations.

New Jersey had the third-highest population of disabled people living in very large institutions, according to a June, 2000 study by the Coleman Institute for Cognitive Disabilities at the University of Colorado.

Roy Carbone, a consumer representative on the New Jersey Developmental Disabilities Council, a public body appointed by the governor, said people living in institutions do not get the care they need. Far too many are controlled with medication or restraints.

"These places are not worth living in," Carbone said. "Without any question in my mind, they should be shut down."

Only now is the state looking to increase staff, after years of inattention, he said. "But why did they wait until four people died? Why? Why?" he asked. "Because they didn't want to spend the money."

Yet some families remain fiercely supportive of the developmental centers.

"This is the best I can have for her," said Robin Sims of the placement at the Hunterdon Developmental Center she got for her autistic teenage daughter, Heather, who is prone to self-destructive outbursts.

"She's healthy. She's happy. And she's safe," she said of her daughter. "She is very vulnerable in the big, bad world and this is the only environment where she's thrived."

A WORLD APART

From the road, the buff-colored, low-rise brick buildings of the Hunterdon center planted amid the rolling farmland of Clinton Township could be a school, college or office park. It is a compound of some 100 acres, with living quarters, cooking areas, medical facilities, classrooms, work spaces -- even an indoor swimming pool. More than 600 people call it home.

Some are like Heather, who looks like a normal 19-year-old girl. Others are like Margaret, a grown woman with the mind of a 4-year-old.

Margaret is busy packing boxes one afternoon when she looks up with delight to see a visitor. He is a stranger, but not in her mind.

"Hi daddy!" she calls out in a sing-song voice.

A supervisor gently bends over. "That's not your daddy," she tells her.

"That is my daddy," she insists, and waves happily. "Hi daddy!" she beams.

Residents live in groups of up to 32, in dorm-like buildings known as "cottages," often four to a room. They are segregated by sex and sometimes by disability.

Posters of young teen heartthrobs or action heroes decorating the painted, cinderblock walls in one cottage suggest this might be home to kids or teenagers. Electric razors on shelves and family photographs propped upright serve to document that none of the residents are children.

It is a world no one ever need leave, and few parents or guardians are openly critical -- even after incidents of abuse. Some ask plaintively who will take care of their children when they are gone, if not the state.

Some, though, have spoken out about problems. Kathy Wigfield says eight years at New Lisbon has turned her 35-year-old son into a desperate and dangerous man.

Staff members trying to restrain him have left their mark with bruises, a swollen lip and a black eye, she said. Mildly retarded as well as mentally ill, he has tried to commit suicide several times; once by trying to cut his wrists with a Pepsi can, another time by trying to hang himself with shoelaces.

"Every time there is an incident, they never ask what preceded it," said Wigfield. She asked that her son, who has a different last name, not be identified. "They've only wanted to increase the chemical and physical restraints."

She cries every time she leaves him. "There are a few wonderful people who work at New Lisbon, but they are few and far between," Wigfield said. "This has been my worst nightmare."

State officials say they cannot comment specifically on cases involving people in their care, a Human Services spokeswoman said. But she noted individual counseling and group therapy are readily available to everyone.

WHAT THE NUMBERS SAY

Despite a decline in the number of residents -- down 19 percent since 1997, following the closing of the North Princeton Developmental Center -- injuries at the state institutions have risen.

The number of reported incidents resulting in serious injuries increased from 29 incidents per 1,000 population in 1997 to an estimated 51.8 incidents per 1,000 population this year, based on reports through June.

Total incidents alleging any kind of injury, assault and abuse increased from 293 cases per 1,000 population in 1997 to an estimated 405 incidents for every 1,000 people this year. The numbers were based on so-called "incident reports" filed with the state Department of Human Services that detail allegations reporting unusual incidents at the developmental centers, including abuse, neglect, deaths, medical mistakes, inappropriate sexual contact, and supervision issues.

The Star-Ledger found at least 50 cases alleging medication or treatment error at the various developmental centers over the past seven years. Records also show 147 deaths labeled as "sudden and unusual ... including suicides and homicides."

State officials say all but 19 deaths in the developmental centers since January 1996 were attributed to natural causes. Of the others, 15 were considered accidental, one was a suicide, one followed an assault and two were homicides.

Of the 12 deaths declared "sudden and unusual" in the first half of this year, officials said all were due to natural causes -- including heart attacks, respiratory failure and strokes.

Despite that finding, disciplinary action was taken against staff in two deaths at Woodbridge. An unidentified nurse has been accused of negligence in one death and four workers were suspended for falsifying records in Wilson's death. The charges are pending.

The Department of Human Services officials admit the state has a fragmented and inconsistent way of investigating deaths and injuries at state institutions, and has said it will create a new task force to investigate and track the problems.

Announced last April, the task force has yet to get off the ground. "It's a work in progress," said a spokeswoman.

In many of the incident reports, the allegations are determined to be unfounded. Other times, investigators are unable to substantiate the claims -- in part because of the population they are dealing with.

For example, the state data showed least 19 incidents alleging sexual abuse by those who work at the centers. State officials said only three of those incidents were found to be substantiated after investigation.

Officials said approximately 20 percent of all the abuse complaints this year were found to be substantiated, Also this year, some 53 percent of the neglect complaints were substantiated.

Asked about the number of incidents reported at the developmental centers, Harris said she was not prepared to make any conclusions. "I think I need to remain attentive and intend to do so," she said.

The Department of Human Services said improved staff ability to recognize and report occurrences of specific incidents have increased the reporting rate.

THE VIOLATIONS

All of the nation's institutions for the mentally retarded have come under increased scrutiny since a scathing report in 1996 by the U.S. General Accounting Office, Congress's investigative arm. It found the disabled often received sub par medical and psychiatric care that put their safety at risk, and little treatment to help them learn independent living skills.

Recent federal inspection reports obtained by this newspaper outline a series of serious violations at New Jersey's developmental centers in the past year, including abuse of restraints, failure to investigate broken bones and other injuries, an inability to control some aggressive residents, and a lack of consent to prescribe tranquilizers.

Federal inspection teams found serious shortcomings at the developmental centers at Hunterdon, Vineland, Woodbine and Woodbridge, including failure to provide prescribed treatment. Woodbridge remains under federal watch.

According to the inspection reports, staff at several centers violated disabled people's rights by repeatedly restraining them -- tying or holding them down without just cause.

Hunterdon was chastised by federal auditors allowing staff to restrain clients without cause. Auditors also cited numerous instances at Hunterdon where disabled people suffered injuries, some inflicted by staff, and families were not notified.

After failing six federal inspections and facing the loss of about $37.6 million in assistance, the state -- by adding personnel -- avoided formal de-certification at New Lisbon in July. The facility still will not be in good standing until it corrects other problems.

Even before Wilson's death in April, federal investigators discovered malfunctioning medical equipment at Woodbridge -- two faulty suction machines used to clear fluid from patients' throats to help them breathe -- and told the state that the machines posed a "condition of immediate jeopardy" at the facility where 528 mentally retarded people live.

The machines have since been replaced.

When the damaging federal inspections reports started rolling in to New Jersey last year, state Human Services officials were stunned and baffled. No one foresaw the depth of the problems the federal government uncovered. Smith, the developmental disabilities division director, said the federal government found deficiencies in areas for which the institutions had never been faulted.

"Year after year, (we) got a passing mark," he said.

But those passing marks came from state health inspectors, who perform annual surveys on the federal government's behalf, but never demanded improvement. Critics say the health inspectors should have caught the growing problems at the developmental centers years ago, but failed.

A comparison of state inspection reports and federal audits that followed point up sharp differences. At Hunterdon Developmental Center, for example, state health inspectors filed a slim, 17-page report citing about a dozen violations after visiting the Clinton facility in November 2001.

In contrast, federal auditors visited the center two months later and filled 206 pages with descriptions of problems.

One woman remained in the cottage even though she had groped her cottage mates 1,500 times between July and December, federal inspectors noted. The center failed to notify guardians when their loved ones took ill, suffered an injury or an accident or were alleged victims of abuse. Residents in 12 different cottages were frequently locked in their rooms or in community rooms -- apparently as a substitute for supervision.

Deborah Walker, a former state employee at Woodbridge, recalled when health inspectors came to do their annual audit. If documents were missing, she said, employees would "back fill" the files. "We were supposed to have one fire drill a month. I've seen people fill out forms for several months" of fire drills, she said.

State health officials insist they did not make mistakes. Deputy Health Commissioner William Conroy said although the inspection criteria are the same for federal and state auditors, the inspection done by the federal Centers for Medicare and Medicaid Services is "quite a departure from what we do."

"They are a bigger team, they spend more time, they look at more charts. They are genuine experts in the field of developmental disabilities," Conroy insisted.

The state has since made significant changes to Hunterdon and passed a federal inspection in April. Disability advocates and experts, though, said they could only conclude the state was not doing its job in providing an early warning system to avert serious problems.

"It's quite difficult for one state agency to police another -- particularly when large amounts of federal dollars are at stake," said Ethan Ellis, executive director of the N.J. Developmental Disabilities Council.

Inspections aside, outsiders rarely get a glimpse into what happens at developmental centers. David L. Wikstrom, a Springfield attorney who represented a rape victim at North Jersey Developmental Center, suspects there is far more abuse at the institutions than reported.

"As soon as there is a report of a problem of abuse, they try to handle it internally and oftentimes these things are swept under the rug," he said.

At the same time, the attorney noted that an obscure state statute also discourages the filing of lawsuits. Under state law, when someone is admitted to a developmental center, the state places a claim against their property for the total cost of their care.

While the state doesn't expect ever to collect on the claim, it has the effect of discouraging lawsuits by residents, whose awards would end up with the state. When Wikstrom sued the state on behalf of a 35-year-old brain-damaged woman from Westfield who had been sexually assaulted by a male cottage supervisor, he was notified there was already a judgment lien of $582,929.09 against the young woman for the cost of her care.

"They have an insurance policy that they are not going to pay any money," he said. "These developmental facilities can be negligent, reckless and not responsible for any of the patients monetarily. It's dumbfounding."

RESOURCES STRETCHED

Staffing shortages at the developmental centers remain a serious problem.

One reason may be that workers are not particularly well paid. Entry-level jobs can start between $21,537 and $28,997 a year, according to the state.

It's no easy job, and many workers interviewed spoke with affection for the people they care.

"Your heart goes out to them," said Beverly Jones, a cottage training tech at New Lisbon, who refers to those she works with as "my guys." She sees victories when they are able to do even small things. "When you are a 40-year-old man and you can now take a shower by yourself, that's an accomplishment," she said. "To wash your arm; a lot of them just can't do that."

The Centers for Medicare and Medicaid last year found numerous instances at Woodbridge where short-handed staff struggled to meet the demands of the job. Residents frequently were left unattended and without anything to do while they waited their turn to bathe or eat. Auditors identified three residents who had suffered fractures when employees tried moving or lifting each person by themselves.

State officials concede they have had to stretch their resources to cover the centers. "There are times when we have to propose mandatory overtime. In time we're hoping with the additional resources there will be less of a need," said Roger Puente, whose unit oversees quality control at the developmental centers.

Despite the recent flurry of hiring, budget forecasters this year project they will still need one million hours of overtime to run the centers, at a cost of $24.5 million. Last year, the state spent $29.7 million.

Yet officials say they are confident the state institutions are turning around.

"One of the workers on the floor at New Lisbon came up to me and said, 'I think things are taking hold here.'" said Smith. "They can see the reinforcements are coming."

The soft-spoken official paused. "We have a long way to go," he said.

Tomorrow: A dangerous mix