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 Life
and Death and the Battle to Save IDEA
Calvin & Tricia Luker, September
4, 2003
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visit
https://www.bridges4kids.org.
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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