Tuesday, November 13, 2001

Six-year-old TJ Colby, left, got help with his schoolwork
Aug. 29 from his mom, Jennifer Colby. She says TJ's
sisters, Elizabeth, 2, and Lauryn, 1, always make
homework a group effort as they crowd around
her looking for attention. TJ has leukemia
and is getting chemotherapy.

Parents urge better tutoring
for kids with cancer

The state's services leave the students
behind in school, parents say

By Pat Gee

Brandon Emley did not want to get out of the car. He felt weak, was pale and had lost his hair after weeks of cancer treatments. He could not face his classmates looking and feeling so bad.

After 45 minutes his mother, Sue Emley, coaxed him out of the car and walked him to his classroom. When the kids saw him, they welcomed him: "Brandon! You're here!"

"That big smile on Brandon's face is what kept me going," Sue Emley said. "This is what he needed. I saw how much it meant to him just to be a regular kid and go back to school and still be accepted by his friends."

Brandon died of leukemia at the age of 10 in 1998, but Sue Emley has continued to fight for educational services for children suffering from cancer so they can keep up with their classmates.

Emley and other parents of sick children said the state Department of Education is not providing enough tutoring for them. The department provides three to seven hours of tutoring a week for each student, depending on the grade level, but Emley said that is "nowhere the equivalent of spending six hours a day of regular school."

Emley also noted that tutors hired now are required only to have a high school diploma. She said the children should have qualified teachers.

Former cancer patient Coreen Oshiro, now 20, agreed the tutoring service is lacking.

"To be real honest, the tutors weren't helpful. ... I know we (Oshiro and her mother) both agreed the quality was lacking," she said. "Many oncology children had similar problems. They (the tutors) didn't help me in areas I was struggling with. I remember my mom doing a lot of supplemental stuff. She bought extra books and took a lot of time to explain the (basic) concepts to me."

Brandon's father, David Emley, said his son would feel upset about falling behind in his class work.

"He wanted to go to school and keep up with his friends," David Emley said. "Luckily, he was a smart kid. We'd go out of our way (to help him).

"It was very tough to get help. My wife was very persistent" in getting tutors for Brandon, but the hours were never enough, he said, adding, "It was a struggle to get what we got."

Sue Emley said it would take weeks of absence from school before Brandon was assigned a tutor. And when he got out of the hospital, he would lose the tutor, even if he still needed one to catch up with schoolwork, she added. She said kids who survive their illnesses often return to school woefully behind their peers.

Jennifer Colby, the parent of a 6-year-old boy with cancer, also had "to jump through all these hoops first before getting anything useful," she said. A tutor assigned to her son, TJ, was terrible because he was ill trained, she said.

"It took the state forever to get us services," Colby said.

Even after her son became classified as a special-education student, which would entitle him to more services, it took more than a year to get the brain therapy started and a therapeutic aide to help her son keep up in school, she said.

Gracie Matsuo, coordinator for the state Department of Education's Home/Hospitals Instruction program, said each district is responsible for hiring tutors who are sent to hospitals in the respective district to serve all cancer patients. In 1995, 732 students were served by 324 tutors, she said.

"It's safe to say that there are twice as many students as there were tutors available on the average," Matsuo said.

"I wish we could give more, but we're so restricted by what we have," she said. "Money is always an issue. It must be difficult for parents. ... I can understand they want the best for their children."

Tutorial services are very costly, she said. For the current school year, the DOE has allocated $1,441,756 to serve all seven school districts in the state, based on the needs of the preceding three years. In the 1998-99 school year, 666 were served; in 1999-2000, 924.

But if a student's parents and teacher feel the student needs more than the three to seven hours a week allowed, they may go to the school's district office to get more hours, Matsuo said.

She said students who need tutors have access to only state funds. However, special-education students have access to both federal and state funds and more intensive services, recently mandated by the Felix consent decree, which was the result of a class-action lawsuit requiring educational reform for disabled children.

Emley said she realizes funds for "home/hospital services are very, very small," and that's why "we need a whole new system of delivering services to these kids."

She and others belonging to the Oncology-Hematology Task Force are putting together a proposal for Dennis Arakaki, chairman of the state House Health Committee, with specific data concerning all children with chronic health problems, not just ones with cancer. (Oncology is a branch of medicine dealing with abnormal tissue growth, such as a tumor. Hematology deals with blood and its diseases.)

Carol Katsubo, a Kapiolani Medical Center clinical nurse specialist who serves on the task force, said: "We weren't doing a good job of communicating with the schools. (Now) by officially notifying the schools as soon as a child is diagnosed, it's improved immensely in the last two years."

The hospital staff now knows what forms need to be filled out to get a school to provide the right accommodations as soon as possible. Another improvement has been to provide a tutor even when students go back to school to help them catch up. In the past, students would either go to school or have a tutor, not both, Katsubo said.

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