Monday, June 21, 2010

NY Times writes Sunday cover story about educational issues for children with multiple serious disabilities

The intro to the very long NY Times story:


Donovan Forde (pictured) was dozing when the teacher came around to his end of the table. Pale winter light filtered in through the grated classroom window, and the warm room filled softly with jazz. It fell to his teacher’s aide to wake him up from his mid-morning nap.

She shined a small flashlight back and forth in his eyes like a dockworker signaling a ship, and called his name. Then she put her hand on his cheek, steering his head forward as he focused his eyes.

The teacher, Ricardo Torres, placed a red apple against Donovan’s closed left hand, and then held it near his nose so he could smell it. “Donovan, the fruit holds the seeds of the plant,” he said.

Then Mr. Torres held a plastic container of apple seeds to Donovan’s ear, shaking it, and placed Donovan’s hand inside so he could feel them. “And these are the seeds,” Mr. Torres said.

He watched Donovan’s eyes and face for a sign he had understood, a smile, nod, a noise. Donovan gently pulled his hand away. No one knew if he had grasped it.

At a time when his peers are enrolled in college or earning money at jobs, Donovan, a handsome 20-year-old with a sliver of a mustache, is still in public school, being taught the most basic of facts. His vocabulary for this science unit, which lasted about two weeks, was three words: seeds, fruit and juice.

And yet, because of his cognitive disabilities brought on by a traumatic brain injury at nearly 6 months old, it is almost impossible to know what he comprehends and retains. After 15 years in the New York City school system, he is less reserved and more social, but otherwise has shown almost no progress, his mother said.

Once predominantly isolated in institutions, severely disabled students have been guaranteed a free, appropriate public education like all children since the passage of federal legislation in 1975. In the years since, school districts across the country have struggled to find a balance between instruction in functional skills and academics while providing basic custodial care.

Donovan is part of a fraction of a fraction, classified as having “multiple disabilities,” a broad category under the federal Individuals With Disabilities Education Act that refers to children who have at least two disabilities and severe educational needs.

There are 132,000 such students in the United States, out of more than 6.5 million now receiving some kind of special education service at an estimated cost of $74 billion a year.

Students with multiple disabilities, like Donovan and his schoolmates, can have a wide range of diagnoses, including cerebral palsy, rare genetic disorders and problems that stem from conditions in utero or at birth, some of which have no name.

For many of these students, the post-school future holds day residential programs, nursing facilities or group homes, not college or jobs. The concepts of educational reform and standardized assessment have little meaning for them; they are among the most costly to educate and the least understood.

Donovan recognizes familiar voices, and can mimic their intonations. He communicates some needs; at lunch, he pulls off his bib to show when he is finished. When happy, he sings fragmented notes, his scratchy voice rising in triplets and quads.

But he cannot walk, does not speak and cannot feed himself or see much beyond shapes and shadows. On standardized assessments, he has trouble with tasks most children master in infancy, like opening and closing his eyes on command. Occupied much of the time by his own inner world, he does not respond consistently to his own name.

One year before he is to leave the school system, educating Donovan remains a search for ways to reach him.