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INCIDENTS OF RESTRAINT AND ALLEGED ABUSE AT BANCROFT AND SIMILAR NJ PROGRAMS ARE BEGINNING TO MAKE THE NEWS.

Use of restraints comes under scrutiny
Authorities probe role of devices at facilities for disabled
Sunday, June 23, 2002
BY SUSAN K. LIVIO
Star-Ledger Staff


At the state's Hunterdon Developmental Center, a mentally retarded man who had a history of biting others was forced to wear a jerry-built helmet that made breathing difficult.

At the Vineland Development Center, another state facility, a mentally ill and retarded woman was tied to her bed more than two dozen times, once for 12 hours, to control her outbursts.

And at Bancroft Neurohealth, a private facility in Haddonfield, doctors kept an autistic 14-year-old boy heavily sedated with his arms sheathed in restraints to prevent him from injuring himself. His death in February is now the subject of an inquiry by the Camden County prosecutor.

Concerned about those instances and dozens more, federal and state officials are taking a hard look at the use of restraints at the 13 state and private centers that house the severely retarded, the autistic and others with profound developmental disabilities.

Special state teams will begin spot checks at those centers and also at group homes this summer to ensure that physical restraints and so-called chemical restraints are used sparingly and properly.

"Whether it's happening at institutions or in the community, we will be looking at this closely," said James W. Smith, the director of the state Division of Developmental Disabilities. "We want to make sure restraints are used as a safeguard and are used as a last resort."

Smith and other officials say the use of poorly trained workers and high turnover led to the overuse of restraints, and that lax oversight has allowed the problem to continue.

The state's action follows inspections by federal regulators at five of the state's seven developmental centers over the last 18 months, which found that neglect and short-staffing were threatening the health and safety of residents. The problems were so serious at the Woodbridge and New Lisbon developmental centers that regulators are moving to terminate $73 million in Medicaid funds. The state is appealing.

The inspectors for the federal Centers for Medicare and Medicaid Services, relying on random record reviews and spot checks, cited more than 50 cases in which federal rules on the use of restraints apparently were violated.

Among the abuses they found were:

A man's arms and legs were bound, to punish him after he slammed doors and damaged property at the New Lisbon Developmental Center in Woodlawn.

 A resident at the Woodbridge Developmental Center was tied to his bed six times for a total of 25 1/2 hours, in violation of a federal rule that prohibits restraining a resident longer than two consecutive hours.

Inspectors found more than a dozen cases each at the Hunterdon and Vineland centers in which patients were medicated without a parent or a guardian's consent.

"This is absolutely a human-rights issue, no question," said Sue Kelly, assistant regional administrator for the federal agency. "As a society, we have made a commitment not to just put people away in the most restrictive environment. But I am confident New Jersey recognizes the deficiencies that have been cited."

Ethan Ellis, the executive director of the New Jersey Disabilities Council, said the federal surveys "confirm long-standing concerns advocates have had that restraints have been used indiscriminately, not for the benefit of the person receiving them but for the convenience of the staff."

The findings have so concerned Human Services Commissioner Gwendolyn L. Harris that she has told lawmakers that she is planning to "reduce" or "phase out the use of mechanical restraints" at state facilities by hiring 734 nurses and direct-care workers to reduce the staff-to-client ratio from 1 to 8 to 1 to 4.

But adding staff alone won't solve the problem, according to Vito Albanese, a Brooklyn man who says his disabled son was restrained as punishment at a private New Jersey facility where his son had one-on-one supervision. "They hire people at McDonald's wages and don't train them right. So (the workers) end up abusing their power," he said.

Last year, 212 of the 3,400 disabled people who live in state centers were restrained 3,100 times with devices that limited the movement of the hands, arms, legs or head, according to reports that the centers are required to file with the Department of Human Services. The six private, state-licensed centers reported using mechanical restraints on 73 of 3,200 people in 2,300 episodes last year.

Although many of those instances may have been carried out properly, Smith said he was "not satisfied with where we are. I think we can do a lot to improve."

One case that has drawn the attention of state regulators, the Camden County prosecutor and advocates for the disabled is the death of Matthew Goodman, the autistic boy who was being treated at Bancroft Neurohealth.

Goodman died on Feb. 6 from aspiration pneumonia, acute respiratory distress syndrome, and sepsis, a blood infection, a day after he arrived at Children's Hospital in Philadelphia in a Bancroft van, unconscious and in arm restraints.

His parents blame the strict regimen of chemical and mechanical restraints for compromising their son's immune system. His mother, Janice Roach, said she complained twice to the state but got no response.

"He died a mental death a year and a half before he died," she said. "I couldn't believe what was happening to him. They turned him into a monster."

Those who cared for Matthew said he thrived at Bancroft's school and in his apartment here. But they acknowledged that the hyperactive teenager was not easy to manage.

"As long as you occupied him and redirected him, he was pretty much okay," said Rita Cairy, who worked with Matthew from June 1999 to April 2000, and visited him after she left her job. "I made him do math. He could read and write his name. He did a lot of things nobody there knew he could do."

But in the spring of 2000, he developed a serious infection that hospitalized him for three months. He was confined to bed and hated it, according to his mother. She said he responded by tearing and picking at his nose and ear. The hospital put him in arm restraints for his safety, and that, she said, began his long slide.

Upon his release that September, he was placed in a secure unit at Bancroft for patients with severe behavior problems, where he lived until he died. During that time, his arm restraints remained, and his medications were increased, according to his mother. He was also fitted with a helmet to protect his head from falls.

Ultimately, Bancroft officials concluded they could not serve him properly and set a Feb. 5, 2002, discharge date. He died in the hospital the day after he was due to leave the center.

"What was appalling to me is we had a child that loved being busy singing songs, going to school, keeping him engaged, being social, which is really not that typical of an autistic child," said Chris Martin-Clee, the executive director of the Arc of Bucks County, Pa. "Yet here he was in restraints all day, pulled out of school. And we know he hated it. He became aggressive. The treatment and therapy was not appropriate for Matt."

Smith, the state's developmental disabilities director, declined to comment on the boy's case. But he said, "We need to see corrective action on restraints and other areas relating to safety and care at Bancroft."

Terry Page, executive vice president for clinical affairs at Bancroft, a facility with an international reputation for treating the most serious behavioral problems, called Goodman's death "a tragedy" -- but one that "had nothing to do with the occasional use of restraints."

"We don't like the fact we end up having to use restraints on people, and in an ideal world, we would never have to do that," Page said. "You use restraints as a last resort. If you use it, it's only as a small part of an overall positive prescriptive program."

Federal and state regulations allow a disabled person to be restrained to prevent injury to himself or others, or to intervene briefly when other so-called "positive" therapies have failed, according to Joaquin Perez, a federal developmental disability specialist.

"There must be a clinical, sound justification for using more restrictive techniques, and they must ensure the guardian has been given informed consent," he said.

Now a New Jersey lawmaker, sparked in part by the Goodman case, is planning to introduce legislation designed to limit the use of restraints.

Assemblyman Eric Munoz (R-Morris), a physician, said he intends to push a plan that would emulate a Pennsylvania law. He said it has reduced the use of restraints in psychiatric hospitals by more than 90 percent since 1997.

The Pennsylvania law permits only a physician to order restraints, and limits their use to one hour. Chemical restraint through medication is prohibited. And data regarding the use of restraints must be available to the public.

"The state of the art for caring for these people has changed, but we in New Jersey stayed the same," Munoz said. "That's not the correct way of doing things in 2002."

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