July 10, 2002
Willow Glen, California Since 1992
Cover Story
Parents of autistic children oppose new parental supervision requirements By I-chun Che It was another bad day for Alex Wyllie, a 7-year-old Willow Glen child with autism. When his grandfather picked him up from school, Alex began screaming and crying. He had expected to see his mother, Deborah. Like most autistic children, he hates to have his rituals broken. Later that afternoon, when his therapist, Janine Delfino, came to his house at 2:45 p.m. instead of the scheduled 2:15 p.m., it was the last straw. Alex grabbed anything at hand to attack Delfino. Although Delfino is an experienced therapist, all her efforts to calm Alex failed. She left in tears. Alex spent the rest of the day banging his head on the floor, hitting his parents and looking at his own reflection on everything from doorknobs to mirrors. He retreated back into his own world again. "It was a nightmare," Deborah says. According to Deborah, Alex has had major meltdowns like this since San Jose Unified School District (SJUSD) in April began requiring Alex's therapy consultants from Enriching the Lives of Children with Autism (ELCA) to include parents in their sessions. Because Alex refused to cooperate with the therapist when Deborah was around, his therapy programs of community outings and meetings with playgroups were forced to stop. Alex is not the only child that has been affected by the new requirement. About 26 autistic children in San Jose who have stopped participating in ECLA community outings and playgroups have shown various degrees of regression. Parents say that the SJUSD has turned a deaf ear to their petitions. School officials say that while they understand parents' frustrations, they must insist on parental supervision to ensure children's safety. After several futile negotiations, parents have decided to take any necessary measures, including suing the SJUSD, to overrule the new policy. Enriching Lives ELCA was was established in 2001 by three autism specialists, Elizabeth Cutforth, Jennifer Peckham and Juanita Travers. They evaluate children's progress, train therapists and design programs for individual and group sessions. ELCA is one of the six groups the SJUSD has contracted to provide applied behavior analysis (ABA) programs for autistic children. ABA is one of the therapy programs available for autistic children. A typical ABA program consists of up to 40 hours per week of intensive one-on-one teaching. Lessons are broken into their simplest elements. Students learn by repeating the behaviors. ABA sessions are normally conducted in an isolated setting first because autistic children are easily distracted by the stimuli of the outside environment. Once the child is learning well in the one-to-one setting, which can be a home or medical clinic, the therapist's next job is to let the child generalize the skills they have learned by using the skills in a natural social context and by interacting with other people besides the therapist. "The ability to generalize plays an important role in learning and our everyday functioning, but autistic children have difficulty applying skills learned in one situation to another, different situation," says Cutforth, who has been working with autistic children since she was a psychology student at Santa Clara University. For example, an autistic child may learn to wash his hands at home, but doesn't wash his hands at school. Or a child who learns to sort out blocks by their colors doesn't discriminate among colored crayons. Community outings (also known as community integration) and playgroups are designed to help autistic children generalize their skills in non-treatment environments. Unlike the usual school field trips, where all the students go together, the therapist and the autistic child are the only two participants in the community outing. The therapist takes the child to places like libraries, restaurants and stores and teaches him or her to apply the knowledge or the skills he or she has learned at home in a 'real world' environment. In one of Alex's community outings, Alex's lead therapist, Maribel Gonzales-Diaz, took him to a fire station. During that two-hour visit, Alex learned to associate the real firefighters sliding down the poles with the picture of a man in a yellow uniform that Gonzales-Diaz had shown him earlier at home. The playgroup programs achieve the goal of generalization by encouraging autistic children with similar behavioral skills to use the social skills they have acquired by playing together. Their individual therapists sit next to them during the session and instruct them to interact with other children. "Most autistic children don't have the imagination to play creatively and properly," Cutforth says. "They need to be taught how to play with other children." The frequency and schedule of ABA sessions depends on the children's individual needs. Cutforth has been working with Alex in his ABA programs for more than four years. Thanks to the weekly playgroup and the twice-a-week community outings, Alex can now better express his feelings and remember to engage his friends to play with him. Since most parents of ELCA's clients are working full time, the parents gave the therapists the security passwords or keys to their houses so that they didn't need to wait for the therapists at home. For community outings and playgroup programs, the therapists usually went to school to pick up the children and drove them to the different planned locations. Parents say things had been going well until ELCA received a letter from the SJUSD on April 8. In the letter, Flora Fortis Englund, director of SJUSD's special education programs, says "the district believes such practices are inappropriate and inconsistent with the district's expectations" and requested ELCA to inform the parents of the importance of parental supervision during therapy sessions and transportation. According to the new rule, therapists cannot drive the students for community outings or playgroups without the company of a parent or another adult. And one parent or a legal guardian has to stay at home when the therapist comes to their house for therapy sessions. Home sessions can be conducted in a separate room with the child's parent in another room, but the doors must be open. Although the SJUSD didn't demand a cancellation of ELCA's ABA programs, ELCA could no longer provide services to families whose parents or guardians could not be present during their children's therapy sessions. The parents were furious. They felt their children's educational rights were being denied. "If they are going to cut the programs or change rules, they should let the parents know," Deborah says. "They shouldn't have just sent a letter to ELCA without notifying us." She also wondered why the district didn't question the practices sooner if it had found that lack of parental supervision was a problem. "The SJUSD must have been aware of the situation—it has been paying for Alex's ABA sessions, including the therapists' mileages—for the past four years," Deborah says. "What is their problem now?" Another Willow Glen resident, Joanne Cordova, whose son, Brett, was diagnosed with autism at the age of 3, says that the requirement of parental or guardian supervision is discriminatory in nature against children of special needs. "My neighbors' children can be taught without any parental supervision," says Cordova, a single mother. "Why should my child be taught only when I am around?" Cordova says that parents with autistic children have endured many hardships to raise their children. Parents claim the school's interruption of the children's ABA sessions has caused inconvenience to the parents, and worse, regression in the children. The concerned parents have tried to negotiate with school officials, both individually and as a group, but say that the SJUSD has neither explained to the parents the reason for the policy change nor responded to their requests.
Ten families brought their autistic children to attend the June 6 SJUSD Board of Education meeting and took turns speaking about the policy's impact on their children. "Are you aware of what has happened to our children?" Deborah asked SJUSD Superintendent Linda T. Murray. In the face of the parents' anger, Murray is said to have replied, "There are legal issues involved." Parents say that this was the first time the SJUSD gave them a reason but that the reason is vague and unsatisfactory. Two weeks after the board meeting, Murray appointed her assistant, Betsy Doss, to organize a group with the parents to work out solutions. But both sides couldn't reach a consensus in the two follow-up meetings. Doss, who worked with autistic children as a certified speech therapist for seven years, says district officials were unaware of the situation until the district reviewed the contract of one-to-one aides for special needs students in late March of this year. After consulting the school's lawyers and specialists, the SJUSD decided to require that ELCA and its therapists stop ABA sessions unless a parent or legal guardian is present. "The parents should understand that parental supervision is not an unusual requirement," Doss says. "It's a common practice and necessary to protect children." ELCA is the only therapy service provider in the district that failed to meet the requirement, Doss added. Parents say they understood the school officials' concerns but that the parental or guardian supervision requirement has hindered rather than helped their children's learning. Semere W. Selassie says that Matthew, his 4-year-old son, who was diagnosed with autism in October of 2000, didn't want to play with other children or cooperate with the therapist during his community outings or playgroups when he or his wife was with him. "It's easier to play with us than with other children," Selassie says. Matthew's performance at home therapy sessions is also deteriorating. Since the door has to be open when Matthew has his therapies in his bedroom, Matthew's 2-year-old brother, Nahom, often distracts Matthew. "Nahom likes to crawl into Matthew's room to see what his brother is doing," says Selassie, who is living in a two-bedroom apartment. "We have to have a person stand at the corridor to prevent Nahom from disturbing Matthew." Selassie says he was heartbroken when Matthew started to hit the walls with his fists again. Scholars and therapists have different opinions on whether parental supervision is necessary for children's therapy sessions. In a letter to ELCA and the SJUSD, Bryan Siegel, director of Pervasive Developmental Disorders Clinic, argued that autistic children tend to depend on their parents and are more unlikely to deploy newly acquired skills when the parents are present during therapy sessions. Siegel says that when children are in the community with parents, parents often have errands, other children and an understandable desire to avoid a scene, which makes it impossible to focus on community activities as "teaching time" for their children with autism. "ELCA should be allowed to continue offering playgroups and community trips as generalization, inclusion and integration activities so that the skills autistic children have learned can become as meaningful as possible to them," Siegel says. But for some therapists, parental supervision is a liability and safety issue. Kevin Dotts, director of I Can, Too Learning Center, says he requires parents to drive their children to meet their therapists at the designated locations of community outings or playgroups. And the company policy requires the presence of a parent or another adult when the therapists work with children at home. "It is true that some children demonstrate inappropriate behaviors when they know their parents are around," says Dotts, who has worked with autistic children for eight years. "But it varies, and the therapists have to teach parents how to work with their children." The school district says it will hold more meetings to resolve the conflicts. But for Deborah and other anxious parents, their children cannot wait any longer. "I know it is impossible for Alex to be a straight-A student or an all-league golf player like his brother, Mark," Deborah says. "I just hope Alex can get the therapy he needs so that he will not end up in a mental institution." |
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