A question of restraint
Parents and educators battle over methods used to control autistic children.
By CYNTHIA McCORMICKSTAFF WRITER
MELANIE LYON figured Barnstable public schools had special strategies to teach her son Matthew, who has autism and can barely speak.
Jean Bowden, left, and Melanie Lyon, both of Marstons Mills, are pushing for changes in the way public schools control their autistic children. "If I did that to Matthew, they'd put me in jail. It's abusive," Lyon says.(Staff photo by Steve Heaslip)When she found out that included pushing him face-down on the floor, pressing his hands against his back and straddling him, her confidence turned to outrage. The Marstons Mills mother thought physical restraint was only used on students who were violently out-of-control. "The school system said they only use a restraint if the child is in danger of hurting himself or someone else," she said after viewing a video of an incident involving her then 11-year-old. "But the teacher looked right at the camera and said if he's 'noncompliant' for five minutes, we're going into a floor restraint. That's for not doing his work. It's not for hitting anybody. If I did that to Matthew, they'd put me in jail. It's abusive." Another parent, Jean Bowden of Centerville, was so outraged by the repeated use of restraints on her daughter Abbie, who also has autism, that she filed a police complaint and is considering suing the Barnstable School Department.
Abbie Bowden is held down by a special-education teacher at the Centerville Elementary School in a videotape made in January 1998."I see the teacher and aide being very rough with her and totally disregarding her bad chest cold," Bowden said of a classroom videotape showing Abbie being restrained 14 times in one day.
"Pressing her down on the floor with her arms up behind her back like a take-down in a drug bust. We are talking about a little frail 64-pound child with the mind of a 2- to 3-year-old. This teacher and school are taking a big chance with another's life and safety." If Bowden sues, she won't be alone. Just as there is a national trend toward training teachers and counselors in the use of wrestling-type holds to restrain unruly students and patients, there is a swell of lawsuits charging that the restraints are abusive or dangerous.
Abbie was put face-down in a "floor-restraint" about 10 times in the video, for reasons including refusing to take a "time-out," pushing a teacher and refusing to get up.Prompted by the death of a 16-year-old boy in a special state residential program last year, Massachusetts lawmakers have filed two bills that would severely curtail the use of physical restraints in schools, psychiatric facilities, group homes and nursing homes. The legislation also would completely outlaw the use of prone, or face-down floor restraints, on children and elderly people. Bowden plans to testify on behalf of both bills, which are being heard at 1 p.m. April 14 at the Statehouse in Boston.
"I thought what they did was so bizarre and so dangerous I don't want any child to have the risk of going through this or dying," she said.
The controversy comes as a surprise to James Shillinglaw, the director of the Barnstable schools special education program. His school program for autistic children, started in the early 1990s, has been something of a model for keeping children - who used to be institutionalized - in their own communities for as long as possible.
The trend toward keeping children with autism in their community schools began 25 years ago with a national law designed to protect the rights of children with disabilities.
Prior to 1974 children with autism were institutionalized, typically at age 6 or 12, depending on the severity of the disorder, said Barbara Cutler of New Autism Consultants in Arlington.
She said the problem with some public school programs for autism is they focus too much on disciplining the child rather than focusing on how the child learns. "They need to look more closely at the child."
Shillinglaw said the staff is well-trained in instructing autistic children and only uses restraints "as a last resort," with proper attention to safety, such as not putting weight on the children.
"Both parents (Bowden and Lyon) really wanted to keep their kids in the community as much as possible. Abbie had had several successful years in the elementary setting," he said.
But in a special pullout program for middle-school-age children with severe pervasive developmental delays - mainly autism - Abbie was acting out by pinching, slapping, smearing feces and ripping papers. Her teacher, who was trained at May Institute in Chatham and follows a meticulous charting system, counted up to 140 attempted aggressions in one day, Shillinglaw said.
"If we're at fault, it was trying too long - hoping for a break in the pattern. Staff really hates to give up on a kid," he said. The school program, based at Centerville Elementary School, brought in additional staff so the teacher could deal with Abbie one-on-one and also had Dr. Sue Thibadeau of the May Institute review Abbie's tapes.
Currently, Barnstable schools are educating 12 children with autism.
To people who criticize the way restraints were used in Abbie's videotapes, Shillinglaw asks: "Have these people ever observed the kinds of behavior we're dealing with in public schools?"
And it's not only special education students who sometimes require the use of restraints, he said. Increasingly, mainstream students are acting out, defiant of authority. Eight years ago a training session on restraints brought out about 10 teachers, all special education teachers in Barnstable, Shillinglaw said. Last year, 36 people attended, including nine school staffers who aren't in special education.
Barnstable educators say it's rare for students to be restrained in the autism program. In Abbie's case, it was a last resort after other strategies failed.
But state Rep. Demetrius Atsalis, a former Barnstable school official who is trained in the use of restraints, said what happened to Abbie appeared to be inappropriate. "If you're 150 pounds, you shouldn't have to put a child on the floor and sit on the child," said Atsalis, who viewed the tape at Bowden's request. "In that situation it wasn't called for."
Atsalis previously worked as an intervention specialist at Hyannis West Elementary School, where he said he never had to put a child into a floor restraint. "What you want to do when you restrain them is calm them down."
In Abbie's case, the repeated use of restraints - by her teacher and a teacher aide - appears to further upset her. In the video, she is restrained for refusing to sit in her chair and for pushing a teacher's arm away. She kicks out at the teacher and looks miserable.
Abbie's neuro-psychiatrist asked the school to make the tape to document behavioral problems. She said the doctor wanted to see if anything in the classroom was prompting the behavioral changes.
After viewing the tape, Bowden said she focused her attention on getting Abbie into a different program and then started complaining to state officials and legislators.
According to current state law, public schools aren't required to have a written policy regarding their use of restraints. That would change under two legislative bills filed by Sen. Frederick Berry, D-Danvers.
Barnstable has no written policy regarding the use of restraints, but Shillinglaw said he is in the process of developing one. He also said he'd like to have an in-house mentor review restraint policies and practices.
Timothy Sindelar, senior staff attorney at the Disability Law Center in Boston, who helped craft the two bills, said there are extensive rules regarding the use of restraints on people age 18 and over in state Department of Mental Retardation and Department of Mental Health programs, but basically nothing for school-aged children.
"Those same protections don't exist for our kids, our most fragile population," Sindelar said. Floor restraints, which would be outlawed under the state legislation "is never, ever appropriate to be used on children. It's contra-indicated for people of short stature, people with breathing problems."
Richard Tallman of Barnegat, N.J., said his 12-year-old son Jason died six years ago at a residential treatment center for children with learning and emotional problems after a counselor put him in a floor restraint.
"I think there should be more accountability for it," he said. "They keep referring to these things as therapeutic restraints. I don't see anything therapeutic about a 200-pound person sitting on a 90-pound kid."
He and his wife settled a civil suit against Kids Peace for an undisclosed amount.
A Hartford Courant investigative report on the use of restraints and seclusion, called "Deadly Restraint," confirmed 142 deaths nationwide.
The Courant report found there are no national standards or minimum training standards regarding the use of restraints - and that a disproportionate number of children are dying from restraints, both wrestling-type holds and mechanical contraptions.
Floor restraints are regarded as more dangerous than the "basket" or seated restraint also employed on Abbie in the Barnstable schools videotape. But earlier this month a 9-year-old boy died in a North Carolina home for abused children after being held in a basket restraint, in which a teacher gets behind the child, crossing the child's arms and holding onto the child's wrists.
Most of the deaths appear to have occurred in residential treatment centers. But not all lawsuits stem from deaths - in West Virginia, attorney Mary Downey won the right in the state's highest court to sue a school district on behalf of a child client with autism, whom Downey says was traumatized by restraints.
Closer to home, the town of Nantucket was sued several years ago after a special education student was placed in a restraint. It's unclear how the case was resolved. Cutler, the autism consultant, said youngsters with autism are exquisitely sensitive to light and sound and touch, as well as to changes in routine.
The day that Barnstable school educators videotaped Abbie being restrained 14 times, the then 10-year-old had just come back from a sick day and had a bad cold.
Children with autism "can't say 'I'm tired, can't do it, don't feel well.' What can they do? Push the person away, not do the work," Cutler said. "To me, it's 'What part of no don't you understand?' Basically it sounds to me like they're punishing this kid for having a disability."
She said there are many noncoercive alternatives to dealing with unruly behavior in children with autism. An agitated child might be calmed by a walk around the building. A child who smears feces might need more physical stimulation and get relief through running her fingers through a pan of dried rice.
But there is money to be made in training school personnel in the use of physical restraints, said Malcolm Smith, executive director of the Peaceful Intervention Program based in Lawrence, Kan.
He said companies come in and train ever-larger numbers of teachers who need to be retrained and recertified over time. "It's a crazy thing that's happened unnoticed in a few years. School systems spend hundreds of thousands of dollars keeping current their ability to restrain children."
Abbie's teacher was trained at the May Institute, but the Barnstable public schools also participate in eight-hour trainings put on by the South Coast Collaborative of Seekonk.
Patricia Steele of South Coast said she has trained hundreds of Cape Cod educators in the use of restraints. She does not promote the use of floor restraints because of the danger involved.
Trained by one of leaders in the field - Crisis Prevention Institute - Steele said she tells teachers about sudden death syndrome, when people in restraints lose their breath and never get it back.
Shillinglaw noted that the teachers and aides are trained not to show emotion when using physical restraints.
But Smith, besides criticizing the unrealistic chirpy voice used by Abbie's teacher, points out when a teacher aide clenches up and tightens her downward grip after Abbie scratches her. "The less verbal a child, the more tuned in they are to your nonverbal behavior," Smith said.
There's another problem with the "coercion model," Cutler said. "One day they're going to be bigger than you. When that kid hits 5 foot, 6 foot, one day he's going to strike back."
Lyon said that Matthew did just that, but with her, not his teacher. When she ran out of a favorite candy bar, Matthew tripped her and pushed her to the ground.
Shillinglaw said the school district didn't break the state's law against corporal punishment because both parents signed off on the use of physical restraints. Lyon said she thought they were only being used when Matthew was violent; Bowden denied she ever agreed in writing to use physical restraints.
Both Abbie, now 11, and Matthew, now 13, currently are in residential treatment programs off Cape. Abbie is at the Boston Higashi School; Matthew is at Archway in Leicester. The programs cost $80,000 and $90,000 a year and are paid in part by the local school district.
Matthew actually had been at Archway several months before his mother viewed the tape of his being restrained at the Centerville school, taken back in 1996.
Lyon said her videocassette recorder was broken when the school district sent her the tape, which she had assumed showed Matthew going through a normal classroom routine.
Having now viewed the tape, she said, "I don't feel confident with Matthew ever going back to the Barnstable school system."
At Archway, Matthew is finally toilet trained and has learned to say "I love you," Lyon said. And Higashi has proved a good match for Abbie, who was photographed smiling and raising her hand in class, Bowden said.
The women believe that there is minimal or no use of restraints at their children's new schools. The bills on which Bowden is prepared to testify would assure that.
Besides requiring schools to develop policies on the use of restraints and forbidding floor restraints on children, they would also require a written report to be filed every time a restraint is used. "Once people have the power to use restraint it's kind of a slippery slope," attorney Sindelar said. "It's easy to use the restraints any time."
But the legislation would give teachers and counselors a taste of being on the receiving end. It says: "Training shall include the experience of being placed in restraints."