Jonathan's Law: Too Little, Too Late, for Disabled Teen

by Patricia Walling

On a February afternoon in 2007, Jonathan Carey, a slender, non-verbal 13-year-old boy with autism, was crushed to death inside an institutional van by one of his caretakers, while another made only the most feeble gestures toward intervening. Jonathan's autopsy showed that he had died of compressive asphyxia, meaning that pressure on his chest had prevented him from drawing breath. The other disabled teen in the van that fatal day reported that aide Edwin Tirado had put Jonathan face-down on the seat and sat on him.

On Jun. 5, 2011, The New York Times published an in-depth report on the circumstances surrounding Jonathan's death. The report included an expose of conditions at Oswald D. Heck Developmental Center near Albany that evoked images of Willowbrook State School, where revelations of appalling conditions drew the attention of health care authorities -- from psychologists to even those in medical coding – through out the country and sparked the 40-year drive for deinstitutionalization.

Tirado, who had been working an average of over 13 hours per day for 15 successive days, admitted to police that he had restrained Jonathan to control him after the boy had removed his seat belt and gotten out of his seat. However Tirado and the driver, Nadeem Mall, continued on their personal errands for around an hour with the dead child in the van before returning to the facility, making no attempt to resuscitate Jonathan or to call 911.

The investigation by the Times revealed a pattern of abuse of residents by overworked, underpaid staff, including high school drop-outs with criminal records and employees who had been fired from similar jobs for abuse of residents. In fact, once a worker showed up so staggeringly drunk that he had to be hospitalized.

These employees were entrusted with the care of people whose disabilities could lead to challenging, sometimes even violent, behavior. A State Health Department inspection of O.D. Heck, the Times said, found that in just five months, the 57 residents suffered no fewer than 18 serious injuries, including five broken bones. The inspectors noted, “There was no evidence that the facility examined the nature of all reportable injuries systematically in an effort to prevent further injuries in the future.”

The Times noted that whistle-blowers found their complaints disappearing into a swirling eddy of bureaucracy, all the way up to the New York Office for People with Developmental Disabilities. Likewise, if concerned staff elicited any reaction at all, they told the Times, it was retaliation.

Only when the Times started uncovering these problems did Gov. Andrew Cuomo take action, forcing the resignation of the agency's commissioner and promising a state investigation of care for people with developmental disabilities. Courtney Burke, the new commissioner, fired two top officials and took steps to set up independent investigations. However, her new responsibilities may be overwhelming for a woman who had previously overseen no more than seven employees and who is now faced with setting to rights an agency with over 23,000.

According to the Times, between state and federal funding, O.D. Heck was supposed to be provided with $1.4 million annually to care for each resident the year Jonathan died. However, because of other allocations, only $430,000 per year was devoted to each institutionalized person's care. This allocation of funds, the Times pointed out, is currently under federal investigation.

State Inspector General Joseph Fisch first looked into abuse of disabled residents in New York institutions following allegations of abuse of Jonathan Carey at Anderson Center for Autism in 2004, including withholding of Jonathan's food and leaving the child naked on a urine-soaked mattress. The report, announced in a press release in 2008, faulted the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities (CQC) and the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD) for “providing misleading or inadequate information” to Jonathan's parents and the governor’s office.

This investigation led to the drafting of Jonathan's Law by Assemblyman Harvey Weisenberg, which expands the rights of parents to be notified of abuse, neglect, injuries and use of restraints involving their children, said Weisenberg in his announcement of the law's passage.

It was Jonathan's mistreatment at Anderson that reportedly had led his parents, Michael and Lisa Carey, to withdraw him from the center, said the Times. When, due to his symptoms of post-traumatic stress disorder, they were no longer able to manage his difficult behaviors or keep him safe at home, they placed Jonathan at O.D. Heck; believing that a state-run facility would be safer for their son.

Feb. 15, 2007, proved how sadly mistaken they had been. Michael and Lisa Carey were together when they got the call that their son was dead. Both collapsed on the sidewalk, sobbing uncontrollably. In a bitter twist of fate, the caregivers at the very facility they had placed their son in to avoid abuse had caused his death by abuse. Only after their child had died at the hands of caretakers was Jonathan's Law, the bill intended to protect disabled children like him, finally enacted by the state that had looked the other way all those years.

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Patricia Walling is a pen name. MindFreedom published this article, but the author is responsible for the content and views expressed.