Jim Stone knows all too well what it's like to navigate a diabetic child through the school system in California.
"When my son Andrew was in first grade, we started to run into problems," said Stone, who works in Modesto. "The school refused to treat him while he was at school, and my wife had to go to there, sometimes several times per day, and give the care he needed."
Fortunately for the Stones, they were able to cope. For some, however, caring for a diabetic child has meant changing careers or quitting jobs.
But a new legal settlement in California may make it easier for parents. On Wednesday, the state agreed to a new policy requiring that a staff member trained to help diabetic children with their medical needs be available at all times of the school day.
The families of four students who were denied proper diabetes treatment brought suit against the California Department of Education, and settled out of court.
And while the settlement has immediate implications for the state, it could well set a precedent for the rest of the country in the years to come.
"This will make a huge difference for children in California, and eventually the nation," said Dr. Francine Kaufman, director of the comprehensive childhood diabetes center at the Children's Hospital of Los Angeles.
"With intensification of diabetes management, which requires shots in school and glucose monitoring, this will enable children to be appropriately cared for as outlined by their diabetes health care providers," Kaufman said.
The U.S. Centers for Disease Control and Prevention (CDC) estimates that one in 523 people under age 20 has diabetes, and most of them have the juvenile, or type I, form of the disease.
Though treatment has gotten easier, with insulin pumps replacing shots and easier-to-read blood sugar monitors, many schools would not allow nonmedical staff to help kids. And with one school nurse per 950 students in U.S. public schools, many schools have no full-time medical staff on site.
"This ruling is very important for children with diabetes," said Ann Albright, president of health care and education for the American Diabetes Association, who joined the lawsuit.
"We have made advances in new tools and technology to manage diabetes, but you don't get a vacation from the disease during the school day. What these kids need is help and access to these tools."
First California and Then the Nation?
California joins a handful of other states that have passed legislation allowing or requiring schools' nonmedical staff members to be trained to administer insulin and help children monitor their blood-sugar levels.
Doctors agree that the new settlement will bring some much-needed relief to families with diabetic children.
"Children with diabetes spend more than half their waking hours in school or under the supervision of the school system," said Dr. William Clarke, professor of pediatrics at the University of Virginia Children's Hospital.
"To not control their diabetes during those school hours is to commit them to a life of poor glucose control and possible long-term complications."
Some school districts have rules about letting students check their own blood sugar levels, while others follow state or federal rules. California's new ruling is supposed to smooth out the patchwork of overlapping jurisdiction.
"Right now there needs to be a change in consciousness for the parents of kids with diabetes; some of them know that their kids have rights," said Arlene Mayerson, an attorney with the Disability Rights Education and Defense fund, which represented the families.
"Some families go through the school system begging for services. But they should know that their kids have a right to be safe at school."
For Laura Wolfe, the consequences of not having a system in place can be dangerous. Her 5-year-old daughter Elizabeth was a kindergarten student in Upland, Calif.
"The rule for care at Elizabeth's school was, either mom comes and does it, or no one does it," Wolfe said. "For a young or newly diagnosed diabetics, that just doesn't work."
Elizabeth couldn't recognize the difference between high blood sugar and low blood sugar, according to Wolfe. One day when she was feeling shaky, she asked the teacher to check her blood sugar, and the teacher refused. Instead, she was given fast-acting sugar and sent outside.
"I showed up a little early that day to check on her, and found her outside on the playground, barely conscious," said Wolfe. "No adults were around -- there was no nurse, and the health technician had gone to lunch."
Though her daughter is now fine, Wolfe worries about other kids and said she is elated about the new ruling.
"It's not rocket science; all that is needed is for people to follow instructions and read a chart. Now, it's actually very clear that someone is going to be responsible for doing that," said Wolfe.
Jim Stone agrees that diabetes needs to be more in the spotlight.
"We tend to think of disabilities in terms of visible disabilities," he said. "But there are lots of kids with hidden disabilities, like diabetes or asthma or ADD, and they also deserve a free and appropriate public education."