Kids caught in the middle

Seven-year-old Kiley Rechs is starting second grade this week. She’s got new school clothes and a new backpack stuffed with school supplies. But she will also be armed with an insulin pump and a blood test kit.

Kiley has Type 1 diabetes, and keeping her safe and healthy at school is her parents’ primary concern. Lindsay Rechs, Kiley’s mother, is grateful to the Chico Unified School District for how it handles Kiley’s diabetes.

Kiley needs blood glucose checks at snack time, lunch time, before PE and at school parties. “We are very fortunate in our school district. The school nurses are there when we need them. I know other districts don’t have that,” Rechs said.

And that’s the rub. In 2007, the American Diabetes Association and the California Department of Education reached a landmark agreement that detailed the rights of students with diabetes to receive care. The agreement included a controversial provision that, when licensed medical personnel were not available, other school professionals who volunteered to be trained could administer insulin.

This did not sit well with nurses’ groups, and they sued.

In its ruling on the case, the trial court agreed that unlicensed but trained school personnel should be able to administer insulin to diabetic students. But it also found they were not authorized to do so under current law. The Appellate Court affirmed this ruling. The ADA is asking the California Supreme Court to review the decision.

School nurses in Chico and elsewhere applaud the ruling, as do parents of diabetic children in districts with sufficient nurses. But in districts whose nursing staffs have been hit by budget cuts, it’s put a burden on the schools, forced parents to come to school frequently to administer insulin or otherwise assist their children, and put children at risk of receiving inadequate care.

As far as the ADA is concerned, the nurses are interested primarily in protecting their jobs. The nurses and their backers insist it’s a matter of safety. Diabetic children are caught in the middle.

A person with Type 1 diabetes, also called juvenile diabetes, doesn’t produce any insulin, a hormone generated by the pancreas to change glucose in the blood into energy. Without insulin, glucose builds up in the blood, causing high blood sugar that over time can lead to serious medical conditions, including coma and even death.

People with Type 1 diabetes need insulin to survive. Many—like my son Ryan, who’s 15—use insulin pumps. The pumps are attached to the body through an infusion site, a tiny catheter inserted subcutaneously that allows insulin to be delivered as needed.

Complicating diabetes care is the ever-changing need for insulin. In addition to carbohydrates eaten, other factors that affect blood glucose levels are exercise, adrenaline, stress, illness and hormones, things that are hard to anticipate. People with diabetes, especially Type 1 diabetes, must check blood glucose levels throughout the day and frequently adjust their insulin.

Keeping children with diabetes safe at school is at the heart of the 2007 ADA-CDE agreement.

“The ADA began negotiating with the state of California to try to ensure that kids with diabetes had their health needs met,” recounted Lisa Murdock, director of government affairs in California for the ADA. “We have been working on this issue for more than a decade. We had legislation passed that any school employee can be trained to administer glucagon [emergency treatment for low blood sugar]. We had legislation passed that children with diabetes can self-manage their disease and carry supplies anywhere they want and anywhere they need.

“The one holdout piece of legislation is the kids’ access to insulin. We had legislation passed that would allow trained school employees to administer it. [Former Gov.] Gray Davis vetoed it.”

The ADA-CDE agreement attempted to rectify that lack, but the nurses didn’t favor it.

“The agreement [between the ADA and the CDE] is very frightening,” said Julie Parker, a school nurse for the Chico Unified School District. “According to the agreement anybody can be trained. You cannot train the secretary to give insulin. It would be a very dangerous situation to allow a secretary to administer insulin.”

The issue is personal for Parker. Her nephew, 8-year-old Morrison Parker, has diabetes. “We do not want someone not medically trained administering insulin to Morrison,” said Ursula Parker, Morrison’s mother.

Morrison, who was diagnosed at 18 months, needs his blood glucose levels tested multiple times a day. This is done at school by a licensed vocational nurse who communicates with Morrison’s parents to receive instructions on how his insulin should be dosed or how many carbohydrates he should eat in his snacks.

There are about 65 students with diabetes in CUSD and 5.4 school nurses for the approximately 12,000 students in the district.

“Diabetes has increased substantially over the last 10 years,” said Dave Scott, director of education services at CUSD. “Diabetes care in school is a big part of what the school nurses and health aides do. CUSD is very fortunate to have an excellent team of nurses.”

Not all school districts in California are so lucky.

“School districts have said that parents have to come administer insulin during the school day,” said Murdock. “That is not always feasible. Kids have had to go without insulin. Kids who have high blood glucose levels have been sent home. Kids have been told they can’t eat lunch because their blood glucose level was high.

“The group of kids we are trying to protect is a fairly young group,” Murdock continued. “It is the kindergarten through fourth- or fifth-grade kids who need assistance. Thousands of kids are going back to school with no one to administer insulin. There is less money for the schools. There have been cuts across the board.

“It is an issue of job protection [on the part of the nurses],” Murdock insisted. “The ADA thinks there should be more school nurses. But we don’t think kids should be held hostage.”

Murdock points out 99 percent of insulin is safely administered by laypeople. Indeed, parents can designate surrogates to come in and administer insulin, people who are not medically licensed and are not relatives. The nurses are fine with that, Murdock says.

“We can train a secretary to watch a 7-year-old girl give herself insulin,” said Julie Parker, “but we can’t train the secretaries to administer the insulin themselves. It’s different for parents that live and breathe diabetes every day. The secretary is not qualified to make the choices necessary to dose insulin.”

“I can’t imagine how we would take care of Morrison if we didn’t have flexible jobs to take off and give his injections when medically trained staff is not available,” said Ursula Parker. “But I can see a situation where [the school] would be putting pressure on kids and parents to have the kids self-manage their injections and insulin delivery before they are ready to.”