Autistic Kids in Danger?

updated 08/27/2007 at 01:00 AM EDT

originally published 08/27/2007 01:00AM

On May 23, Martha Quesada picked up the phone to talk to her 12-year-old autistic son Denis on his daily call from his group home for disabled children in Miami. "I love you," he told her before chatting with his sister Dayana, 10, about the Powerpuff Girls. Denis hung up and headed out to a flea market with staff members. Two and a half hours later, Quesada's phone rang again—only now an aide was explaining that her boy was having problems breathing and was on his way to the hospital. "I fainted when I saw him," recalls Quesada, 29, who rushed to be with him but arrived too late. "He was already dead."

Quesada is awaiting autopsy results to determine the exact cause of death of her son, who was placed in the group home, Rainbow Ranch, after his violent behavior made it impossible for her to care for him. Florida's Agency for Persons with Disabilities has reported that Denis was restrained on the day he died—placed on his stomach in a van with his arms behind his back—and that six times the state's Department of Children and Families was called in to investigate allegations that staffers had abused him. All the allegations were dismissed, and a lawyer for Rainbow Ranch denies wrongdoing in his death. But the home has since been closed by the state.

Although Denis's death has yet to be fully explained, the basic facts are becoming sadly familiar. In the past six months alone, at least four autistic children have died while under the supervision of aides—a warning, say experts in autism, of what may lie ahead as thousands of adolescents with severe cases and highly disruptive behavior enter institutions that are not prepared to deal with them. In addition to high costs and long waiting lists at residential facilities for autistic children, "I don't feel there's adequate training in many homes," says Jane Hudson of the National Disability Rights Network. Adds Dennis Debbaudt, an autism safety consultant: "This is an overlooked issue. The pay at group homes isn't good enough to attract workers educated [about autism], so people who need it the most may be getting the worst care."

Mike and Lisa Carey never doubted it would take a patient and committed staff to tend to their son, Jonathan, who could speak only a few words yet sometimes became aggressive when not understood. For nine years Lisa, 42, a homemaker, raised him and younger brother Joshua while her husband, Mike, sold used cars. But after countless failed attempts at toilet training, the couple sent their son to live at the Anderson School in Staatsburg, N.Y. Though initially impressed with his progress, Mike Carey, 45, was horrified to visit his son in October of 2004 and find him "naked, covered in bruises and lying in his own urine."

The couple brought Jonathan back home to live but his violent outbursts—hitting or pulling his mom's hair—soon proved too much for the Careys. "It's like this oversize 2-year-old having a tantrum," says Lisa. After calling a crisis hotline in 2005, the couple found a place at the O.D. Heck center. Mike and Lisa's hopes were rekindled. "He was doing pretty well there," recalls Mike.

Just exactly how 13-year-old Jonathan Carey died one cold February evening is still unclear. While en route to a shopping center with workers from the center, the boy threw a tantrum, causing aide Edwin Tirado to physically restrain him—allegedly pinning the child down on the seat of a van and continued to run errands—picking up beverages and a video game—before returning to the center an hour and a half later. Nadeem Mall, the driver of the van, pleaded guilty to criminally negligent homicide, while Edwin Tirado denies any wrongdoing. Says Tirado's lawyer: "He loved Jonathan. He thought he was asleep."

As the couple await Tirado's trial this fall, they find some comfort knowing their son's death may not be in vain. In May, the New York state legislature passed Jonathan's Law, requiring parents to be notified of reported abuse at facilities within 24 hours. "These children are the most vulnerable people in society," says Mike Carey. "There's no way we're going to stop fighting for them."

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