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Article of Interest - IDEA

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Bridges4Kids LogoLife and Death and the Battle to Save IDEA

Calvin & Tricia Luker, September 4, 2003

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On Monday, August 25, 2003 Michael Renner-Lewis III, a 15-year-old who had autism, went to school at Parchment High School in Kalamazoo, Michigan. Neither he nor his parents had any idea that he never would come home. News accounts say that Michael, who had no history of seizures, evidently had one and became “combative” at some point after the seizure. Four teachers restrained him on the floor. He never got up.

This week Congress returned to Washington. We suspect they returned to find messages from school administrators and school board lobbyists wanting to check in with them to be sure that they are clear on the administrator’s [and Administration’s] current IDEA reauthorization position. We suspect most members of Congress will return their calls and listen to them stress again the need for streamlined school bureaucracy, more discipline and less due process for parents and students. We suspect none of them will be crying out for Congressional action so that school deaths such as Michael Renner Lewis’ can be understood and prevented. What a tragedy.

Here we are, fighting to save a law, IDEA ’97, that encourages school-parent collaboration and effective programming for 6.5 million students who have disabilities. We are fighting because the powers that be, and the current Administration, have their ear cocked to the needs of the administrators, rather than those of the parents and students. “We don’t need to understand challenging behavior,” they say. “We just need to be free to punish it.” For them, the challenge is to make it easier for them to deal with and dismiss students with disabilities, rather than sitting down and figuring out what they need.

Special education law finally became part of the American fabric in 1975 when Congress realized that ALL students have a constitutional right to a free appropriate public education. Implicit in that right is the right for ALL students, including students with disabilities, to be educated in a safe and secure environment.

Up to this point we have thought about the battle to save IDEA as one focused on politics and our children’s right to learn along with students who don’t have disabilities. Today we realized that this isn’t just about our children’s right to learn, it is about our children’s right to LIVE. We are outraged that Congress can pay such close attention to paperwork and administrative concerns, and so little attention to the lives of the children who depend on Congress both to keep them in school and to keep them safe while they are in school.

Look again at the new disciplinary provisions in HR 1350 and S 1248. Picture frantic families sending their children who have autism or other behavior challenges off to school, having to worry about school-imposed plans and practices that permit four or more teachers or other school personnel to pile on to their children if they engage in behavior that is caused by their disability and occurs as a direct result of their response to a circumstance their disability does not permit them to process in the same way we expect other students would.

We did that today. A mother called us to report that her son, who also has autism, has been being restrained at his school when he physically reacts to over-stimulation. We drafted a letter for the mother to the district’s special education director informing the director that the family would not authorize nor consent to the use of physical management and restraint on their child, who also is named Michael. Acknowledging Michael’s behavior challenges, the family asked the school to conduct a functional assessment of behavior and develop a positive behavior support plan to address Michael’s behavior in a way that does not require or include physical management or restraint. It was an easy letter to write because Michael’s life is at stake. It also was easy to write because IDEA ‘97’s behavior provisions give parents the right to make such requests.

HR 1350 and S 1248, caring more about administrative convenience than about Michael’s life, would take that right away from Michael’s parents. Sure, we might still be able to request some form of intervention on Michael’s behalf without IDEA ’97, but it would be up to the school to decide whether to honor the request, and if they chose not to, Michael’s family would be without recourse.

We all need a wake up call. This is not about politics anymore. This is about LIFE. One can only imagine the pain Michael Renner-Lewis’ family is experiencing now. He did not have to die. Two other children with autism also have died in recent weeks due to improper use of physical management and restraint. Will we hear a chorus of concern from school administrators that will equal the concern they expressed about their need for administrative convenience and streamlined disciplinary procedures? Will we hear them cry out for Congressional intervention so that the number of deaths caused by physical management and restraint as responses to behavior challenges is eliminated? We think not.

Michael Renner-Lewis III probably would not want to be the topic of this homepage – certainly not in this way. We did not know him even though we, too, are from Michigan. Our hearts go out to his family and friends. We cannot imagine their pain. But even in death, people teach us to look at things in new and different ways. Michael’s death helps us to understand even more why this battle is so important, and why we must fight so hard to win it.

We cannot imagine that Michael would want to be exploited, but we cannot ignore the fact and circumstances of his death. 6.5 million students with disabilities share the same risks Michael encountered when he went to Parchment High School on the last day of his life. We finally understand that risk. We need to help Congress understand it as well. Michael’s memory deserves that, and our children need that.

Tricia and Calvin Luker

 
Copyright 2003 by Tricia and Calvin Luker. Permission to forward, copy and post this article is granted so long as it is attributed to the authors and www.ourchildrenleftbehind.com.  

   

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