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Innovative Program Aids Chronically Ill Students in Baltimore

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Baltimore--It is a surprisingly cold day for late March, the kind of day that causes problems for 14-year-old Theresa Torrence, who suffers from juvenile rheumatoid arthritis.

So today, Theresa will stay home from West Baltimore Middle School, as she frequently does on the cold, rainy, or damp days that make her condition worse.

But school will go on for Theresa. A special teacher will go to her house in the afternoon with the assignments Theresa has missed and help her. She will be marked "present" in school, and once the weather warms up and she returns to West Baltimore Middle, she will have caught up with her classmates.

Theresa is one of about 500 children in the Baltimore school district who are benefiting from a special program offered by the city's public-school system to address the special educational needs of chronically ill children whose medical problems keep them out of school intermittently.

The Chronic Health Impaired Program, known as chip, was the first such program in the country developed by a public-school system to address the special needs of this population, according to Baltimore school officials. The program, started in 1974 with a federal grant to help sickle-cell anemia patients keep up with their schoolwork, was expanded the next year to include children with any chronic health problem.

Chronic, Not Long, Illness

The program is not intended for children who will be out of school for long periods of time--those children participate in a formal home-instruction program. It is for those whose chronic health problems bring unpredictable and intermittent absences of a few days at a time, according to Sylvia Matthews, the program's coordinator. Ms. Matthews noted that between 20 and 25 pupils each year develop prolonged problems that necessitate their joining the home-instruction program.

The students in chip, however, are usually absent between 30 and 60 days over the course of a year, Ms. Matthews said. The average cost of the program per pupil during the 1982-83 school year was $364. Each of the 11 full-time and four part-time teachers works with about four students daily; because of time constraints, they are unable to work with more than five each day. The teachers, who are certified in a variety of areas but who are essentially generalists, spend about one hour with each student.

Today, the 10-year-old program is still one of the few of its kind in the country--and one of the best, according to a new four-year study of chronically ill children in America by Vanderbilt University's Institute for Public Policy Studies.

"The chip program came out as a shining example," said May W. Shayne, research associate and liaison officer for the Vanderbilt project, which is summarized in a two-volume report that is to be published this year. "Unfortunately, there are really few school systems that have attended to the special needs of these families."

Despite its success, chip found itself threatened with deep budget cuts last year by the financially strapped Baltimore school board. In its proposed budget for the 1983-84 school year, the board suggested cutting the budget for the schools' entire Home and Hospital Service Program in half, a move that would have reduced the total staff from 59 to 29. For chip, it would have meant halving the size of the instructional staff to one part-time and five full-time teachers.

But parents, teachers, and health-care professionals waged a campaign in the media and among board members to save what they called an essential and inexpensive service to children. And in the most emotional appeal, Sean Gray, an 8th grader with cystic fibrosis, attended a school-board meeting to urge the board to let him continue to learn.

"If we don't have the services, next year I will fail," Sean told the board.

"You have been a brave young man," the board's president, David Daneker, told the youngster. "You have succeeded in educating us."

The program was spared any cuts for this school year. Sean Gray died March 7, but his only brother, Brian, 10 years old, who also suffers from cystic fibrosis, will continue to benefit from the program.

The number of chronically ill children has grown with the dramatic medical advances of the past few decades. According to the Vanderbilt study, about 10 to 15 percent of all American children have a chronic illness. Of those, about 10 percent (or 1 to 2 percent of the total childhood population) have severe illnesses, the study estimates.

"To some degree, the kids are a product of our new capacity to lengthen life," Ms. Shayne said. "Before, a lot of these kids had not been appearing in schools" because they had not survived their illness. "The social institutions' arrangements haven't caught up with the technological advances."

States' Rules Stringent

Many states and school districts, for example, will allow students to be eligible for home teaching only after they have been absent for a certain number of consecutive days or weeks. In Maryland, a child has to have been absent for four consecutive weeks before home instruction is permitted.

Because it is not a full home-instruction program, however, the chip program does not have to comply with that rule.

'Periods of Crisis'

The same medical advances that prolong the children's lives have also, in some cases, eliminated the extended periods of incapacity that once were part of chronic childhood illness.

"These children go through periods of crisis--such as chemotherapy and kidney dialysis--when they miss school intermittently, but not four weeks in a row," said Ms. Matthews.

"Various studies have shown that these children were falling behind in their work and dropping out of school," because of the disruptions caused by the short, repeated, unpredictable illnesses, the coordinator said.

The Vanderbilt study's findings bear out the seriousness of that problem, Ms. Shayne agreed, as well as others that affect such children's educational success.

"Their illnesses are basically discouraging. They mean a shortened life span and a lot of pain," Ms. Shayne said. "There are a lot of misconceptions about their illness and a lot of things that contribute to a social isolation. And for many, [falling behind in] school can be the straw that broke their back."

Baltimore school officials, chip students, and their parents say the program helps alleviate many of those problems for the children, who, for the most part, have no unusual learning problems.

"Without it, she wouldn't have made it this far," said Sarah Torrence, pointing with pride to her daughter Theresa's acceptance by Baltimore Polytechnic Institute, the city school system's well-regarded special high school for mathematics, science, and engineering.

"I do well in math," said Theresa, who is now wheelchair-bound despite surgery last year that gave her artificial hip joints. "I want to be a nurse because I want to help people like they've helped me."

According to Ms. Matthews, the program has increased the number of chronically ill students who are able to move on to the next grade level to the point that they now progress better than their healthy counterparts. chip students have a 2.9-percent nonpromotion rate, compared with a 12-percent rate for the school district as a whole.

Lung Disease

Dean Storm, 10, and his brother, Damien, 8, both of whom suffer from cystic fibrosis, an incurable lung disease, have been in the program since they entered school.

"It's a fantastic program," said Joan Storm, the boys' mother. "When they go back to school, they are right along with their classes."

George LeVanis, who teaches both boys in a gifted-and-talented class at Woodhome Elementary School, said the chip program "is an integral part of the education system."

"These two boys give so much in the regular classroom, and it would be a shame for them not to be able to continue that," he said.

The Vanderbilt study, which also examined other services that should be improved for the special population, said chronically ill children should remain involved in their studies to the greatest degree possible. "Schooling is the main occupation of young people, and the interference of illness and its treatment with educational activities should be diminished," the study's authors wrote in a preliminary article.

The study also found that in many instances, teachers' attitudes and expectations of academic achievement by chronically ill children result in exaggerated deference to the handicap.

"So many people put labels on children with diseases," said Lorene Massey, whose son Dillard, 13, has sickle-cell anemia. "They think they can't achieve as normal children. But they can. Their mental capacity is the same."

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