By Helen Gao
UNION-TRIBUNE STAFF WRITER
August 27, 2007
Putting their severely autistic and mentally retarded son in a boarding school that uses electric shocks to curb bad behavior wasn't Kelly and Laura Walker's first choice.
Kelly Walker has traveled across the country in search of help for his severely autistic and mentally retarded son, Benny.They didn't have many options.
The San Diego couple was desperate to find a treatment center that would accept an intractable teen with a history of injuring himself and others.
When Benny Walker was 3½, he was kicked out of preschool after head-butting a pregnant school aide. The San Diego Unified School District, required by law to educate Benny, couldn't find a suitable place for him as he grew older. Nor could the San Diego Regional Center, a state-funded agency that supports people with disabilities.
“Medically, he's been to every possible expert: neurologists, gastroenterologists, psychiatrists, psychologists,” his father said.
In fall 2002, when Benny was 10, he was sent at public expense to Heartspring, a center for special-needs children in Wichita, Kan. Two years later, Heartspring called the Walkers, saying Benny had to be removed within 20 days. There had been one too many incidents in which several staff members had to tackle Benny and use “emergency restraints” to get him under control.
After a search of more than 100 programs with the help of a special-education advocate and others, the Walkers settled on a residential program in Canton, Mass. Benny has lived there since January 2005, becoming the most expensive special-education student in the San Diego district.
Because of legal mandates, San Diego Unified and other public agencies are paying the bill. Benny's tuition and housing at the Judge Rotenberg Educational Center, where an aide is assigned to him full time, cost more than $270,000 for the 2006-07 school year. The cost since 2005 has been $732,930.
Benny is one of 17,015 special-education students in the San Diego Unified School District, the state's second-largest. His case – while extreme – underscores the struggles faced by parents of profoundly disabled children and the extraordinary costs society pays to educate and treat them.
The Walkers see the Massachusetts school as Benny's best, and perhaps only, hope to develop the skills that could enable him to eventually live in a group home, rather than in a psychiatric hospital.
Their choice of the Rotenberg center has led to its own set of challenges.
The private boarding school's practice of using a form of electric shock to modify behavior has been called inhumane by advocates for the disabled and mental health professionals. Its use is prohibited under California's education code.
Officials in the San Diego school district have reservations about the center, which has come under investigation by government agencies because of alleged health and safety violations. California Department of Education staff members opposed Benny's move there.
Benny could attend the center only after the state Board of Education, over the objections of its staff, granted a waiver. The waiver must be renewed periodically.
Benny is the only California student at the Rotenberg center.
The Walkers say Benny's behavior has improved markedly. They note that he went from having 2,000 “health-dangerous acts” per month to an average of 30.
Videos recorded by Kelly Walker during an April visit show Benny eating properly with a utensil and working at a computer with an aide's help. He has been included in sports activities. He has stopped pulling out his hair and no longer jumps off furniture or obsessively picks at his skin. And he is alert, not heavily medicated as he was at Heartspring, his parents said.
“We cannot be happier with his progress, the place he's at,” Kelly Walker said.
Kelly Walker (center) said he and his wife Laura (left) are pleased with the progress that their son Benny is making at a private boarding school in Massachusetts where Benny is monitored at all times by video surveillance. The Walkers were with their son Abel at their home in Scripps Ranch last month.
Benny is one of about 15,000 California students with disabilities so severe that public schools cannot meet their needs. Instead, they attend private schools at public expense.
Federal law requires school districts to provide “free appropriate public education” to disabled children, regardless of cost, through age 21. After that, other public agencies, such as the California Department of Developmental Services, are responsible for services.
San Diego Unified is spending $238 million this fiscal year, or about 19 percent of its $1.26 billion general fund budget, on more than 17,000 special education students.
The school district has 371 special education students who receive private care, including 350 who attend private schools, four of them outside California. It costs the district an average of $35,000 a year to send a student to a private school.
The district also spends an average of $70,000 per student per year to hire private agencies for one-on-one education for 21 students at a public school or at home.
Shocks for misbehaviorThe Judge Rotenberg Education Center says that it almost never rejects or expels a student, even though many parents use it as a last resort.
The center has 220 students, most of them from New York and Massachusetts public schools. With parent permission and court supervision, some students wear remotely activated shock devices that send painful sensations through the skin.
When they misbehave, students get shocked with varying levels of intensity for up to two seconds.
Benny Walker's placement at the Judge Rotenberg Educational Center in Canton, Mass., is indefinite. The San Diego Unified School District has a case manager monitoring Benny's education and shock treatment.The Rotenberg center, which is licensed by Massachusetts agencies, also withholds food and uses rewards to change behavior.
Advocates for people with disabilities have tried for years to shut down the center or change the way it operates.
“Aversive therapy involving painful electric shocks is far outside the mainstream of contemporary child psychiatric practice,” said David Fassler, a clinical professor of psychiatry at the University of Vermont and a member of the American Academy of Child and Adolescent Psychiatry.
“Valid research on the safety and efficacy of such extreme procedures is limited, and there are significant questions and concerns about the long-term physical and emotional effects on children and adolescents.”
Last year, investigators from the New York State Department of Education who visited the school issued a scathing report alleging excessive and improper use of shock treatment at the Rotenberg center.
According to the report, shock devices were used for “behaviors that are not aggressive, health dangerous or destructive, such as nagging, swearing or failing to maintain a neat appearance.” Students also were required to wear the devices during showers and baths, raising concerns of electrocution, according to the report.
Investigators also found that the majority of the classroom staff were not certified teachers.
The Rotenberg center has dismissed the report as biased and inaccurate. In a lengthy rebuttal, it said students get shocked for infractions, because the infractions are “antecedents” of more dangerous behavior.
Matthew L. Israel, the Harvard-educated founder and executive director of the Rotenberg center, said the shock therapy used at his school does no harm.
“It's no more inhumane than surgery is for someone who is desperately in need of surgery,” Israel said.
The center said five students have died there since its inception in 1971. The school said each student died from natural causes.
Supporters say they would rather have skin shocks to control their children's behavior than have them beat themselves black and blue, pick their skin bloody or be prescribed psychotropic medications that can have serious side effects.
“The trade-off is so tremendous,” Kelly Walker said. “I don't think there is another parent who wouldn't make the same choice.”
He sees the skin shocks as behavior conditioning, similar to another child learning not to touch a hot stove after his hand has been burned. Having experienced the electric-shock device himself, Walker likens the shocks to a bee sting.
Kim Oakley, a Valley Center mother whose autistic son routinely bloodied and bruised himself with his fists, also believes shock treatment is more humane than letting children inflict serious self-injury. For seven years, Oakley used an electric-shock device that delivered a milder shock than the Rotenberg center's.
“People don't understand you have to help these children in a way that is therapeutic, but maybe controversial,” Oakley said. “But if it works, a rational mind has to embrace an effective therapy, even if it makes you feel not good.”
Pat Amos empathizes with the Walkers of the world who are forced to make difficult choices. Amos, the mother of two autistic children, is a board member of The Association for Persons with Severe Handicaps. She works in the Philadelphia area as an advocate for people with disabilities.
“What these parents and students have experienced is the massive failure of programs to treat them humanely and effectively,” Amos said.
Amos opposes the shock treatment used by the Rotenberg center but won't pass judgment on parents who send their children there.
“I absolutely believe we have to do better work with parents to help them understand the nature of their child's disability to help them see they have more and better options,” she said.
Doing the best they can
Benny has been in therapy since he was a toddler. He can't talk and has worn diapers all his life.
When he was 3, he underwent eight hours of surgery to remove a brain tumor the size of a walnut.
The Walkers say they are trying to do what is best for their son, who has the cognitive ability of a toddler. Kelly Walker is a video-game programmer and his wife, Laura, is a homemaker who earned a master's degree in administration in her native Peru. They live in Scripps Ranch and have three other children.
Kelly Walker has traveled to many cities across the country and spent thousands of dollars in search of help for Benny.
The San Diego school district and the Walkers have had an ongoing legal dispute over what services should be provided to Benny. The Walkers have retained a special-education advocate to fight for services for Benny since he was 3.
The district has an in-house attorney and outside legal counsel working on Benny's case. The increasingly adversarial legal proceedings between parents and school districts in part account for the escalating costs of special education. The Walkers believe the district has spent too much on legal fees battling them, instead of giving them what they say is best for their son.
Benny had been on special diets and taken vitamin supplements, and he has been prescribed a long list of drugs over the years, such as Thorazine, Haldol and Depakote. He also has participated in countless medical trials and endured numerous procedures.
Time and again, the family said, service providers concluded they couldn't handle Benny, guarantee his safety or find people willing to work with him.
As a youngster, Benny liked to jump from high places. He flailed, hit, bit or scratched people when he was distressed. He shattered windows and glass cabinets, requiring multiple emergency room visits for cuts.
To “Benny-proof” their house, the Walkers installed tempered glass in windows and acrylic glass in china cabinets. They enclosed the second-floor landing. Laura, Kelly and a nanny took turns sleeping in Benny's room with the door locked.
The Walkers resisted putting Benny in a residential program and considered buying a second home where Benny could live and they could take turns watching him.
They have come to believe that their son, who is 15 and stands 5 feet 6 inches tall and weighs 145 pounds, is best served with around-the-clock supervision by professionals.
At the Rotenberg center, Benny is monitored at all times by video surveillance. The family can access his medical records online and talk to the staff whenever they want.
Benny's placement at the Rotenberg center is indefinite. The San Diego district has a case manager monitoring his education and shock treatment.
“The district takes the use of aversives very seriously, and therefore closely monitors the student and stays abreast of the research and controversies surrounding this type of therapy,” Roxie Jackson, the district's executive director of special education programs division, said in an e-mail.
The Walkers earlier this year decided to see how Benny would do without the shock treatment. His behavior problems soon spiked, and they agreed to reauthorize the treatment. They take turns visiting him at the Rotenberg center.
“The hardest thing about all of this, and the hardest thing to explain, is that all this time you keep grieving for the child you've lost, who's standing right in front of you,” Kelly Walker said. “That doesn't ever stop, and it's not ever going to.”
SPECIAL EDUCATION: BY THE NUMBERS
There were 17,015 special-needs students in the San Diego Unified School District as of Dec. 1, 2006, compared with 12,534 in 1997.
Federal law designates 13 conditions for which special education services must be provided.
848: Students with autism
1,032: Emotionally disturbed
265: Hearing impaired
1,058: Mentally retarded
109: Multiple disabilities
423: Orthopedically handicapped
1,683: Other health impaired
7,260: Specific learning disabilities
4,040: Speech language impaired
60: Traumatic brain injury
70: Visually impaired
$238 million: District's annual spending for special education students
$1.26 billion: The district's general fund budget for 2007-08
130,000: Overall district enrollment
$9,759: Average cost of educating students who do not have special needs
371: Number of students receiving private care at district expense
$35,000: Average cost of educating a special-needs child at a private school
SOURCE: San Diego Unified School District