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Boy's death puts spotlight on
restraints
Monday, May 12, 2003
By LINDY WASHBURN
STAFF WRITER
SECOND OF TWO PARTS
Part one: A child's struggle, a mother's love
 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
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 - including
more than 35 from Bergen and Passaic counties - at a price from $300
to almost $1,000 a day.
And it caused at least one mother, Cynthia
Allen of Teaneck, to refuse to send her similarly disabled son back
to the campus. [In a Sunday story, The Record described her
struggles to raise her son, Nicholas Aquilino, at home.]
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 of Ho-Ho-Kus, 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.
Lindy Washburn's e-mail address is washburn@northjersey.com
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