One year after the death of Jonathan Carey, an autistic 13-year-old who died while in the care of two O. D. Heck employees, his parents have come back to the capitol in Albany.
Jonathan’s parents, Michael and Lisa Carey, held a press conference last Friday, Feb. 15, on the anniversary of their son’s death and called on the governor and state legislature to toughen Jonathan’s Law and make children’s medical records more accessible.
Jonathan’s Law is named after Carey and was signed into law by Gov. Eliot Spitzer in May of 2007. The law entitles parents and legal guardians to access records of child abuse investigations and medical records.
The bill opened up four years worth of records for parents of children with disabilities, but an amendment to the law effectively closed the window of opportunity to access past records at the end of the 2007 calendar year.
Michael Carey said he believes that all records should be accessible at all times and asked the governor to extend access for another year.
Eliot Spitzer has failed his responsibility as governor, Michael Carey said of the governor not extending the records deadline. `It takes a leader to stand up and he has not done that. Shame on him for that.`
Two O.D. Heck employees, Edwin Tirado, 35, and Nadeem Mall, 32, both of Schenectady, were convicted on separate charges in Jonathan’s death. The two men were transporting Jonathan, along with another teenage resident, to Crossgates Mall in Guilderland when Tirado restrained Jonathan, who was reportedly being unruly at the time, according to court records.
Police said Jonathan stopped breathing as a result of being restrained, and the two men continued running errands in the O. D. Heck transportation van. The two men reported the incident two hours after Jonathan stopped breathing.
Mall pleaded guilty to criminally negligent homicide in Carey’s death and was sentenced to six months in prison and five years of probation in a plea agreement that required him to testify against his former co-worker, Tirado.
Tirado was later convicted of manslaughter and sentenced to the maximum of 5-to-15 years in state prison.
`Today is a memorial to Jonathan,` Michael Carey said at Friday’s press conference, before telling a room full of reporters that reform was needed to raise the rights of abused institutional residents `above the standards of animals.`
`There’s less protection for the disabled than animals, currently. We’re talking reform that will make lives better and safer,` Michael Carey said. `This is not only for our son, who is in heaven, but for all the children.`
During the press conference, the Carey’s were flanked by parents of abused, institutionalized children, former caregiver employees and supervisors, Assembly Minority Leader James Tedisco, R,C,I-Schenectady, and Assemblyman Tim Gordon, D, I-Bethlehem.
Drawing upon the personal experience of having a brother with Down Syndrome who died of leukemia, Tedisco spoke on behalf of the Careys saying that Jonathan’s Law needs to be strengthened to better protect the disabled.
`There has to be a full and complete care system for this Jonathan’s Law is not enough,` Tedisco said. `Jonathan is in heaven, but there are other children here on earth.`
Although they are from opposite sides of the aisle, Assemblyman Gordon echoed Tedisco’s sentiment.
`The standard of abuse for a person in residential care should be the same for a person not in residential care. There shouldn’t be two standards of abuse,` Gordon said. The first term assemblyman added that the use of food as a reward and a punishment should be considered a form of torture.
`It’s a horrible thought,` Gordon said. `It harkens to something you’d see in Guantanamo Bay.`
Several others spoke about residential abuse on behalf of the Careys, and letters from others and anonymous supporters were also read. Some of the letters were from parents who discovered abuses of their children and want more accessible records, others were from people employed as caregivers who witnessed abuses themselves.
`I was the supervisor of two residential group homes in upstate New York. I encountered direct care staff that neglected the consumers, used alcohol or drugs while on the job, stole from the residences, many that did not properly care for the consumers, and many who were not emotionally fit for caring for the disabled,` Marie Haley wrote.
Another parent wrote to the Careys about the frustration of finding help for abuses she discovered.
`I have found no local agency to be helpful, or I was told ‘We’re looking into the matter,’ and once I told the school I would go to the state police, they said my own behavior was becoming erratic,` wrote Debbie Long.
Long has a son who went to a private facility in downstate New York between 1998 and 2000. She said her son began coming home with large black and blue marks on his body and that the facility conducted its own internal investigation.
She wrote that her requests for injury reports were ignored.
Michael Carey said he hopes the tragedy of his son’s death will spur more changes in what he described as a broken system.
He also added that he and his wife are not against caregivers at large, but they believe that low pay, poor management and pre-screening, and hasty employment practices lead to many of the problems facing residential facilities in the state.
`Lisa and I know there are a lot of wonderful caregivers, and we’re not speaking about them,` Michael Carey said. `You have to have a lot of control if a child comes up and bites you. Let’s face it; even the best of parents in tough times will do things they regret. They [the caregivers] deserve better pay. Especially in the private sector.“