July 26, 2008

Law Ensures Children’s Health-Care Management at School: For More

By Kim Archer, Tulsa World, Okla.

Jul. 26--Radious Guess thought her son's school administrators knew that he had sickle cell disease and what that meant for his education.

But they didn't.

She found that out when she got a letter after her son's first-grade year. Despite the fact that little Paul was an excellent student, school officials wanted to hold him back.

The reason? Pain crises and hospitalizations from sickle cell anemia had caused him to miss too much school.

"I thought they knew," Guess said. "I had always kept the school informed and brought in doctors' excuses when he was sick."

But she didn't let her son get held back a grade because of absences outside his control. Instead, Guess began researching and discovered something many parents don't know.

Paul was eligible for a "Section 504" plan, a federal law that ensures that a child with a disability has equal access to education. It generally covers children with health issues, such as sickle cell disease or diabetes. Many parents have heard about plans for children with learning disabilities, but not for kids with medical conditions.

"A lot of parents don't know what's out there," said Darlene Nsien-Reynolds, education and resource coordinator

for the Sickle Cell Disease Association of Oklahoma and a sickle cell nurse at St. Francis Hospital.

"One thing is, you're bringing all the school personnel together at one time," she said. "They're going to hear about this child's condition. So when this child is absent and in the hospital, they have to accommodate that child."

By approaching the school counselor and asking for this plan, Guess found that Paul got a blueprint designed just for him. He was allowed to carry a water bottle in school and go on bathroom breaks as needed. And he wasn't allowed to get too hot or too cold.

"Children with sickle cell need to drink more fluids and have more bathroom breaks," said Cheryl Freeman, executive director of the state sickle cell organization. "Sometimes children with sickle cell have to take some pain meds that make them drowsy. And sickle cell kids don't do so well in the heat."

Children with sickle cell disease can be vulnerable to pain crises without allowances to avert thirst, heat and other needs. Many of the crises require hospitalization or blood transfusions, she said.

After an absence because of health reasons, these children should be given the chance to make up homework or to have tutors, Freeman said.

Children with other conditions, such as diabetes or cancer, also are protected by the law. Each child's Section 504 plan is customized for his or her needs.

Guess has another son, 5-year-old Seth, who has Type 1 diabetes. He already has a Section 504 in place for when he starts kindergarten.

"I thought that by filling out eight forms of health information in the nurse's office at the beginning of the school year, everyone at the school would know what he needed," she said. "I was wrong. I discovered that information was just between the nurse and myself."

Lori Holmquist-Day, a neuropsychiatrist at Children's Hospital in Oklahoma City, said some school districts are unaware of children's right to have their health-care needs managed at school.

"Children with cancer, sickle cell and others have medical needs that are something we can't ignore while they're in school," she said.

Holmquist-Day noted one patient's mother who said the school told her that her child could go to school only a half day because he was diabetic and needed injections.

"Not many parents are aware of their rights," she said. "Ask. And if you don't get an answer you're looking for, ask somebody else."

Start with the child's physician or school counselor, Holmquist-Day said. If that doesn't work, contact the state Education Department.

"They are so open to parents, and they want something to be done," she said.

Now entering third grade, Radious Guess' son Paul is better able to reach his academic goals despite his disease.

"I thought that I was by myself," Guess said. "But I didn't have to be."

Kim Archer 581-8315 [email protected]


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