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The human cost

April 22, 2011

Disconnection. That was the only way to describe “Lewis” (not his actual name) as he and his mother settled into the waiting room. A healthy, enthusiastic six year old, Lewis had been brought to my office at the recommendation of his kindergarten teacher. By secret recommendation, I should add, since an explicit “on the record” statement of concern to Lewis’ mother would have endangered the young teacher’s job. She had noticed that Lewis wasn’t playing with the other children in the way that she would expect of a bright child of his age (the school psychologist had examined Lewis and determined that he was, in fact, “bright” – at least in the way that IQ tests measure). She had also noticed some odd behaviors, some unusual use of language, observations that had resonated with the training she had received in identifying students with special needs.

The neuropsychological evaluation conclusively revealed that Lewis was a student with high functioning autism. Although a sweet, intelligent, deeply well-meaning child (who invited me to his home for game night), Lewis was profoundly unable to understand other people in an age-appropriate manner; to sustain attention and effort for any period of time; or to use language effectively to learn and to communicate.

Fortunately, decades of research have given us a clear prescription for Lewis. While there is no medical treatment to cure his condition, intensive behavioral and educational intervention can make an immense difference in building his skill base and connecting him to the world around him. We also know that it is critical that these interventions be delivered now, and that they will yield diminishing returns as he grows older.

Our state and federal government has put laws into place mandating that Lewis’ school provide these interventions. What they have not done is adequately fund these laws, leaving Lewis’ town (an attractive suburb outside of Boston), his school, and his family in an untenable situation. His teacher is reduced to giving “deniable” feedback to his parents in the parking lot, because if her concern was voiced on the record in the classroom it could trigger requirements for assessment and intervention by the school. Because these are non-negotiable legal mandates the school itself cannot plead poverty on the issue and refuse to provide services on financial grounds. Therefore, administrators are forced to construct a Kafkaesque web of red tape to limit the access of families such as Lewis’ to special education services. And finally, Lewis’ parents are watching their son’s developmental pathway increasingly diverge from that of his peers; they are watching him drift away from them during the period of time in his life when his brain will be the most receptive to intensive intervention.

Stories like Lewis’ are playing out in every school system across the state, and across the country. They are the direct result of the financial strangulation of the public education system. Officials will deny that funding cuts impact special education services because they have to maintain that fiction in order to comply with disability law, but behind a wall of Orwellian doublespeak about failing students making “effective progress” the reality of inadequate support for students like Lewis is plain.

“Disconnection” is also a word that would describe legislators who pass budget measures that have the ultimate effect of slashing funding to cities and towns. They are disconnected from the human cost of their decisions and from the message that is embedded in their votes: that we know how to help our most vulnerable children, but that we are just not willing to pay to do so.

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2 Comments leave one →
  1. Deb Carey permalink
    July 26, 2011 2:48 pm

    Brilliantly written and sadly the truth.If only for a day they could walk in our shoes.How they have so much control over the future and destiny of our children with no conscious.I cannot understand how they sleep at night. They are the murders of our childrens right to an education,pursuit of happiness and the American dream.

  2. L. DeBlois permalink
    August 19, 2011 8:20 am

    There is a little know Medicaid Waiver that allows a child to receive Medicaid without counting his parents income. If the child is diagnosed and documentation is provided to Medicaid, the school district can bill Medicaid for services. This can be a long process so the sooner one applies the better. This will also assure that the child will be provided services if needed when school is over and independence is difficult.

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