What Jonathan Carey Endured

Jonathan Carey was a 13-year-old non-verbal boy with autism. He died on the evening of February 15th, 2007 while on an outing with another child from the O.D. Heck Developmental Center in Schenectady, New York. Jonathan was improperly restrained by the health worker Edwin Tirado, 35; the driver of the van, Nadeem Mall, 32, the continued driving around Colonie to run errands instead of seeking medical attention for Jonathan. Both men were charged with second-degree manslaughter and have been convicted in his death.

Previous to this, Jonathan had been at a residential school, the Anderson School, in Dutchess County, New York. In September 2004, a year and eight months since his entrance there, “school staff did things like withholding meals because of poor behavior and covering his window so he couldn’t look out.” A report released by the New York State Inspector yesterday said that two state agencies had neglected to do their duties in investigating alleged abuses at the Anderson School, according to the Ithaca Journal:

Inspector General Joseph Fisch faulted the state Commission on Quality of Care and Advocacy for Persons with Disabilities for conducting a “shoddy child-abuse investigation, failing to fully address allegations that Jonathan (Carey) was neglected, inadequately fed and left to lie naked on a urine-soaked bed” while at the Anderson Center for Autism in Staatsburg. Further, the probe “did not adequately determine whether Jonathan experienced serious emotional injury.” [Fisch's investigation did not cover the circumstances of Jonathan's death.]

After Jonathan’s death, in March 5, 2007, Jonathan’s parents, Michael and Lisa Carey, testified before the Senate Committee on Mental Health and Developmental Disabilities in Albany, New York and proposed “Jonathan’s Law” which “calls for stiffer penalties for those who endanger the welfare of the disabled and will provide parents and guardians access to all records pertaining to their children.”

I’ve worried that my son might have to be placed in a residential placement and I’ve worried a lot about the kinds of abuses that Jonathan endured. Charlie can talk a little, but not enough to tell me if something happened—that he wasn’t being fed; that no one was changing the sheets on his bed. (And how he loves to look out of windows……) So far, we’ve done well with Charlie at home and I hope that he’ll live with us until he is an adult—-what happened to Jonathan makes it very clear to me that we have to start working now to ensure that staff are properly trained and supervised; that non-violent methods are used; that kids like Charlie and Jonathan are treated in ways that seek to understand why they might get upset, and with dignity and compassion,

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    • http://gfcfexperience.blogspot.com Thomas

      Hey Kristina,

      I completely agree with you – now is the time to start.

      You would think that the horrors of this place and the one in Massachusetts (I believe that’s right) would bring about change and a greater awareness. You would also think that the media attention to cases like Alex Barton’s would bring about changes in schools about how autistic children are treated. Sadly, I don’t think it will happen in either case anytime soon…

    • http://www.autismvox.com Kristina Chew, PhD

      Sometimes I feel we can go on and on talking about “curing autism” and what’s in vaccines or not and meanwhile what happened to Jonathan keeps happening.

    • Synesthesia

      I has to.I am so enraged over the practices of JRC and this horrible attitude the people who run the place (or a specific person) has about the people who live there. That there’s no other way to deal with these kids but tormenting them with pain.
      It’s like they are not even human beings to be respected in their eyes, but something even lower than animals and I just can’t stand that.

      Plus JRC has such a high turnover rate. I see so many ads for jobs for them in the papers. If a staff has that sort of turnover rate, then how are they supposed to get to know the people they are being paid to help?

    • Regan

      Sometimes I feel we can go on and on talking about “curing autism” and what’s in vaccines or not and meanwhile what happened to Jonathan keeps happening.
      ——————————-
      Speaks volumes doesn’t it?

    • Synesthesia

      I’m not even sure if Autism Speaks speaks out against stuff like this.
      I was on their site trying to find out if they do.

    • Regan

      While extremely painful to me to read about these deaths and mistreatments (because the possibility is closer to our family than others’, as well), we need to know.
      I think it is a mistake to mentally fixate too much on one or two schools, as if these are the only bad programs and once they are fixed or shut down, that’s that. I would willing to bet hard money that there will be someone, and more than one, today in the residential system who is being treated badly or neglected. I believe that it’s a systematic problem of what we think of people who are “different”, what they are entitled to, and whether the expenditures are sufficient or allocated wisely. Not just the staff of these facilities, but society at large.

      Besides these terrible stories, there needs to be recognition and headcounts of which programs WORK, which ones are doing a GOOD job–to show examples and demonstrate that it is possible to have a humane, respectful and useful program. (If these are by far the exception, then there’s a lot of change that needs to happen.)

    • http://club166.blogspot.com/ Club 166

      With the recent death of Harriet McBryde Johnson, this reminds me of her great article, The Disability Gulag.

      Joe

    • Regan

      I am really sorry to hear about Harriet McBryde Johnson–a great advocate and a great writer.

      In that article, this summed up a lot for me,
      “…The nondisabled world sees powerlessness as the natural product of dependence and dependence as the natural product of our needs. However, for nondisabled people, needs are met routinely without restricting your freedom. In the gulag, you have no power. The gulag swallows your money, separates you from your friends, makes you fearful, robs you of your capacity to say — or even know — what you want…”

    • http://www.marlabaltes.blogspot.com Marla

      Terrible. We have had bad experiences with hospitals and our daughter. I could never trust a home like that. We were encouraged at one point to go in that direction. Luckily, we have managed well at home and things have improved a great deal.

      What a sad sad story.

    • Regan

      Brian Kent died in 2002, but the thing that unnerves me is that the circumstances that led to his death are similar to that of many others in the report and of other stories that I have read over the past few years, and illustrates that there exist facilities accepting taxpayer money do not know how to provide compassionate and enriched facilities for those in their care. None of these people deserved the treatment that they received. Imagine yourself or your family member living in these circumstances, or in a situation of life-threatening illness. Whatever the reason for the deficits, they need to be addressed.

      “Life and Death in State-Operated Developmental Disability Institutions”
      Equip for Equality
      http://www.equipforequality.org/news/state-operated-dev-disability-institutions.php