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School in works for medically-fragile children

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By Todd Cohen

CHAPEL HILL, N.C. — Planning is underway to develop an independent day school in the Triangle to serve “medically-fragile” children with severe communication disorders and significant mobility problems.

The Triangle is home to an estimated 150 to 200 medically-fragile children who typically cannot find the educational services they need in local public or private schools, says Donald J. Stedman, co-chair of a group developing plans for the new school.

The new school would serve that population, working with students for one to four years, depending on the severity of their problems, to develop individual education plans that local public schools then could use to enroll the students and provide the services they need.

The school also would be designed to help spur the development of similar schools throughout the state.

“We want to develop a model school and a model activity that could be replicated by other regions from our state,” says Stedman, a senior adviser at the Center for Psychology and Education in Chapel Hill, and a professor and dean emeritus at the School of Education at UNC-Chapel Hill.

The center has received a $100,000 grant from the John Rex Endowment in Raleigh to develop a business plan and feasibility study for the school, at trianglenewschool.com.

The center is developing the school in collaboration with the departments of pediatrics, rehabilitation medicine and allied health sciences at the School of Medicine at UNC-CH, the department of pediatrics at Duke University Medical Center, and the College of Design at N.C. State University.

While it does not expect to complete the business plan until October 2007, Stedman says, the center will conduct the feasibility study this spring and summer, and development efforts, including formation of a founding board, could begin this winter.

Planning will include working closely with parents and the public school systems serving Chatham, Durham, Orange and Wake counties and Chapel Hill-Carrboro.

The effort also will include visits to similar schools in other states, such as the Cotting School in Boston.

The new school likely would generate income through support from local school districts, mental-health and developmental-disabilities programs, tuition based on parents’ ability to pay, and fundraising, Stedman says.

Medically-fragile children often are diagnosed with cerebral palsy, head trauma, spinal-cord problems or convulsive disorders such as epilepsy or seizures, all of which affect parts of the brain that involve speech and language competencies and mobility, Stedman says.

While many of those children may be bright or gifted, he says, diagnosing them, assessing their needs and providing them with educational services can be “extremely difficult.”

Federal law requires that local school systems provide the “least-restrictive alternative” in providing educational services for every school-age child with special needs, he says, a goal that “requires some real skill in assessing their issue and developing an educational prescription.”

And in addition to educational programs, he says, the prescription often requires some form of physical rehabilitation such as physical or occupational therapy, as well as assistive technology such as “smart” wheel chairs that can be manipulated by people lacking the ability to maneuver them using their hands.

Because of the difficulty of assessing those children’s needs, Stedman says, local school systems often do not provide the services themselves, opting instead to pay for the services, and many parents use the funds to home-school their children or send them to special schools out of state.

“So the school board ends up paying for services that may be much more expensive than if they provided them themselves,” Stedman says.

The new school also will provide opportunities for clinical training for professional students in graduate programs such as pediatrics or special education.

Special-education programs in schools of education in the state prepare students to work with populations that are much larger but have problems that are mild or moderate compared to the population the new school will serve, Stedman says.

“This category of special-needs kids,” he says, “is not being well-served anywhere.”

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