HADDONFIELD, N.J. - When the 14-year-old arrived at the emergency room, he was nearly dead. He weighed less than 100 pounds. His pulse could barely be felt. His hands and feet were cold to the touch. He hardly breathed.
But here was the strange thing: The boy was wearing arm splints and a hockey helmet.
Matthew Goodman was autistic, and so prone to self-injury that his caregivers had used a helmet and restraints to keep him from picking at wounds on his ear and nose. They'd used them for 16 months.
Matthew had lived for five years at Bancroft NeuroHealth in Haddonfield. In the days before his arrival at the emergency room, the staff had noted his decline: his unsteady gait, increasing inability to stand by himself, and growing lethargy. They'd noted his cough, his nosebleeds, and a bloody discharge from his mouth.
But the splints and hockey helmet had stayed on, sometimes even when he slept. The staff had called Matthew's mother that morning in February 2002 to say they couldn't find Matthew's vital signs. Then they had packed an overnight bag and driven him a half-hour in the school van to Children's Hospital of Philadelphia.
He died there the next day, of pneumonia and a blood infection.
Matthew's death thrust Bancroft, once one of the nation's top institutions for severely disabled children, into a maelstrom. It provoked investigations by criminal, regulatory, and accrediting authorities. It prompted intense debate in the state Legislature on the use of physical restraints on institutionalized children. It raised questions for dozens of school districts that send Bancroft their neediest special-education students at a price from $300 to almost $1,000 a day.
And it caused at least one mother, Cynthia Allen of Teaneck, N.J. to refuse to send her similarly disabled son Nick back to the campus.
But most children at Bancroft can't go home. Their families can't give them 24-hour-a-day attention, or there may be other children who would be endangered by their behavior. And only a few other institutions around the country accept children whose disabilities are so profound and whose needs are so intense.
So the children come to Bancroft from 25 states and several foreign countries. They come with diagnoses of autism, pervasive developmental disorder, mental retardation, traumatic brain injury, and the syndromes that result from parental alcoholism or inherited chromosomal abnormalities. Their behavior is analyzed, treatment is implemented, and research is conducted.
More than a year after Matthew died, many questions remain about Bancroft. Some of its critics still ask whether children are safe there.
New Jersey still isn't sending its own wards, children whose care is the responsibility of the Division of Youth and Family Services, to live at Bancroft's main campus. (Those who were placed there prior to the investigation have not been removed.)
Two separate arms of the state Department of Human Services reached differing conclusions about Bancroft's role in Matthew's death.
DYFS, whose ability to protect vulnerable children has been the subject of much debate in recent months, said the care he received was cause for concern but had not contributed to his death. But the Division of Developmental Disabilities, after viewing videotapes, concluded that he had been abused and that Bancroft had failed to get emergency care when needed. This divergence of opinion prompted yet another departmental review, raising questions about how DYFS had conducted its investigation.
New Jersey health officials in June fined Bancroft $127,700 - the largest amount ever imposed on such an institution. Bancroft had violated patient rights, put patients' mental and physical health at risk, and failed to report dozens of cases of abuse or neglect, the report said. But nothing has been paid, because of appeals and postponements.
Health officials nearly forced the school into receivership earlier this year, an action that would have replaced the administration of the non-profit school with another agency. But on Jan. 3, they pronounced themselves satisfied with safety improvements made under threat of a two-week deadline.
State authorities are currently investigating complaints that some of Bancroft's professional staff did not hold professional licenses in New Jersey. Fire safety is another issue: Bancroft disputes the applicability of the Seton Hall Fire Law - requiring sprinklers in dormitories - to its campus apartments.
The Camden County Prosecutor's Office closed its investigation without filing criminal charges, having found no criminal intent in the death. But Matthew's mother, Janice Roach, says she intends to file a civil case.
The Legislature also has stalled on a law that would bar use of restraints in all but emergency situations. Graphic testimony from Matthew's mother has been countered by emotional presentations from parents who attest that such techniques saved their children's lives.
Bancroft is striving to rebuild its reputation. Its executives have defended the 120-year-old institution against regulatory charges, fought against proposed new laws limiting restraints, and opened their doors to journalists. No other institution has been subjected to such scrutiny, they say. Noting that months of investigation produced no criminal charges, they defend their care of Matthew while declining to comment on specifics.
For Matthew's mother, there is only sadness and outrage.
Women who have lost their husbands are called widows. Women who have lost children should have their own special term, so defining is the ordeal.
"It has destroyed me," Roach says in an interview at her home in Bucks County, Pa. "My life is just destroyed. It's very sad.
"And the sadder piece is that there's no accountability."
A walk through the Bancroft campus leaves no question that the children in its classrooms, apartments, and crisis unit are a challenge. Terry J. Page, a psychologist and Bancroft's executive vice president for clinical affairs, says, "We do have a reputation for being able to serve a lot of people whom nobody else wants to serve, or whom nobody else is able to serve."
They are people like Tony, the handsome blond teenager, a whiz in art class, who makes only "yeek" sounds - like a chicken - without intelligible speech. And people like Jon, 16, who has the developmental age of a toddler and stomps and shrieks with joy when a gym teacher walks in with a big plastic ball. His hands are raw from sucking, and he drools on a big rubber pacifier.
Chris, 7, spins around his classroom, unable to stop himself, while working with a speech therapist. Melissa, an 18-year-old with the mental capacity of an infant, doubles over limply in her wheelchair, exhausted after a seizure.
The classrooms are noisy and crowded. Besides the teachers and children, each student has an aide. Many kids are in wheelchairs, some with ventilators attached.
Some of the children move unpredictably: A first-grader sitting in front of his aide suddenly rears back and head-butts her so hard that her lip bleeds. Tony bolts from his classroom to the bathroom. A girl walking with her aide suddenly grabs a visitor's braid because she is obsessed with hair.
At The Lindens - Bancroft's unit for children it says are in "severe behavioral crisis," where Matt Goodman spent his final months - the accommodations are designed for safety: windows of unbreakable plastic, furniture that is easily washable and too heavy to lift, and carpet so tightly woven it can't be picked apart. Each room has a videocamera recording every minute, with infrared if necessary after dark.
One child at The Lindens, a tiny, cornrowed 6-year-old, bears dark bruises on each cheek from her own fists. An older girl sustained a concussion when she threw herself to the floor her first day there. She now wears a soft karate helmet.
In the "step-down" apartments, which offer more independence as residents progress toward off-campus group homes, one occupant's bedroom was kept stripped down because she habitually smeared her feces on the walls. But another has more typical teenage decor: photographs from the Bancroft prom at a local catering hall.
Bancroft prides itself on offering a continuum of care, from The Lindens, with a capacity for 22 children, to the step-down apartments, where 40 children live under close supervision, to group homes in nearby communities, where 75 children reside under varying degrees of supervision.
The institution offers care for a lifetime, too - from early intervention for newly diagnosed toddlers to adult group homes with opportunities for sheltered employment.
"This allows us to move the children along from more to less structured settings," says Page. "We can individualize their programs. Our vision is always on the next step." When a child in a group home regresses, he can return to The Lindens instead of checking into a psychiatric hospital, where heavy sedation and full restraints would be typical, he says.
The school promotes its success stories. One woman, now employed as a Bancroft catalog sales agent, came to The Lindens in 1997, 20 years after a car accident caused injuries that resulted in seizures, aggression, and paranoia. Suicidal when admitted, she gradually worked her way into a "supported apartment" off campus, where she receives staff assistance as needed.
John and Joan Craig, who enrolled their autistic son at Bancroft nine years ago, have been satisfied with his care. Now 22 and a group-home resident, he is communicative and has never needed restraints. "The people who work there are enormously well-intentioned," John Craig says of the caregivers. "It's almost like a vocation."
Janice Roach, who enrolled Matthew in Bancroft's residential program when he was 9, recalls how difficult it was to have him living away from home. It was "the hardest thing" she did as a parent, she says. But living with her son was impossible, too.
All that's available to understand Matt's death is his mother's version of events and three reports - two from the divisions in the Department of Human Services and one from Dr. Marita Lind, a pediatrician at the University of Medicine and Dentistry of New Jersey, who studied the records for the prosecutor. Bancroft officials will not discuss his case, except in general terms.
Matthew's medical problems were complicated. He'd been diagnosed with sleep apnea, feeding problems resulting from a cleft palate and a swallowing disorder, low body temperature, a tendency to injure himself, mental retardation, and other developmental disorders, according to Lind.
He was a short boy, with droopy brown eyes and thick brown hair. More than many autistic children, Matthew enjoyed hugging and being hugged back, Roach says. He liked going for walks. He loved playing with blocks. When he started acting up, he was easily distracted, she says.
His mother and father, who are divorced, both visited him frequently at Bancroft. Roach has two younger children, now ages 7 and 4. She understood his unique speech. He could even say, "I love you," she says.
Matthew's spiral toward death began with an infection in his leg in the spring of 2000, his mother says. He was living in an apartment at Bancroft, where another resident was a feces-smearer. Matt often had open wounds from falling, she says.
The infection progressed into a form of arthritis affecting his knee, causing his whole leg to become painfully inflamed, she says. The only treatment was intravenous antibiotics. Matt spent the summer of 2000 at Children's Hospital on an IV - tough for any 12-year-old, tougher for one who couldn't understand.
The confinement worsened Matt's habit of self-injury, Roach says. Despite restraints and sedation, he picked at his ear so much that, by the time his leg infection was cured, "he'd almost ripped his ear off."
Upon returning to Bancroft, Matthew stayed at The Lindens so that a nurse could monitor his condition.
It was here, in September 2000, that splints were first used to keep Matt from bending his arms and touching his ear, Roach says. When he picked at his fingers, they put socks on his hands, she says.
Restraints are a last resort, used for only 2 percent of Bancroft's clients, says Page. Several safeguards prevent their misuse, he explains. Two committees and the child's parents must approve any treatment plan that uses restraints, and review it regularly. "Nothing is ever done to anybody without the parents being fully on board," he says.
Roach scoffs at that notion. Her consent was coerced, she says: If she didn't sign, Matt would have been kicked out of Bancroft before she could find him another school. In any case, she began to look.
Eventually, Matt used his shoulders, instead of his hands, to rub his nose. Roach demonstrates, turning her head with a shrugging motion. He rubbed one spot on his nose into an open sore. A plastic surgeon prescribed antibiotic cream. But with Matt's history, the staff became concerned about infection.
So they went to a sporting goods store and bought him a hockey helmet.
Roach says that in his final months, Matt asked her every time she visited to "take these things off," straining toward her with his immobilized arms. "There were many days when I threw up outside," she says, "because of the torture he was being put through."
Whatever the original goal, the treatment clearly wasn't working. Without classes and classmates to distract him, Matt's self-destructive behavior worsened. More sedation was ordered, she says. Sometimes when she visited, he lay on the floor without responding. Matt's father took a photograph of him in the helmet, and it has become a poster for the anti-restraint movement.
A state investigator, viewing videotapes of Matt's final week, saw a Bancroft caregiver try to rouse Matt to take him to the bathroom. Matt couldn't stand, and appeared to be too heavy for the caregiver to handle. So she dragged him to the bathroom.
Two days later, the investigator wrote, another staff member held her foot on Matt's chest for several seconds as he lay sleeping on the mat. The investigator noted that both staffers were later terminated for abuse in an unrelated case.
As circumstances worsened, Roach continued to search with growing desperation for another school that would accept Matt, she says. Using the phone and the Internet, she finally secured a spot for Matt at a Florida rehabilitation center. She put together the necessary funding and arranged air transport for Thursday, Feb. 7.
On Sunday, Feb. 3, she visited Matt. "He's on the floor," she recalls. "He can't get up. I lay down next to him. 'Mattie, I found a place, I'm getting you out of here,' I tell him. He's angry. … He was sick, really sick, but I didn't know it."
Two days later, she got the call from the Bancroft nurse.
Matthew arrived at the Philadelphia emergency room in critical condition.
He never woke up. He died Feb. 6, one month shy of his 15th birthday.
The year since Matthew's death "has been incredibly difficult" for Bancroft, Page says. Two reports - from the Prosecutor's Office and DYFS - absolved Bancroft of responsibility for his death. A long report of deficiencies cited by the state Health Department is being appealed, he says.
The scrutiny "has resulted in our improving some of the things we do - documentation, services," he says. "We still feel strongly that the quality of the services we provide really hasn't changed, but we just have to move beyond this unpleasantness."
There will never be an end to Roach's pain, however.
"I was always an advocate for Matt," she says, "but after his death, I continued my advocacy. If I can do anything in my power to make sure that not an inch of this happens to anyone else, then I have to do it."
In her grief, she pores over the photos of Matt as a toddler hamming it up for the camera, performing in a school program, smiling at a family party. And then she touches the sweat-stained hockey helmet.
Sometimes, she even ties the frayed arm restraints around her own arms.
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