The Dilemma of Diabetes

Since January, Colroy Gordon’s second-grade education has consisted of a few hours each week with a visiting teacher at his home. Colroy’s mother is too fearful to send the Hawthorne boy to a school with no full-time nurse.

Nikki Marquez attends morning kindergarten in Los Angeles, but her mother hovers within five minutes of the classroom in case of an emergency.

Both Colroy and Nikki have Type 1 diabetes. Their survival depends on daily injections of insulin and, if they should pass out because of low blood sugar, a dose of another hormone called glucagon. Without these treatments, the children could suffer seizures or slip into a coma, possibly suffering long-term brain damage or even death.

The mothers, like many parents nationwide whose children have diabetes, contend that district officials are failing to meet children’s medical needs in violation of federal laws. School systems have stymied families’ efforts to manage this life-threatening condition in the safest, least disruptive way, parents assert.

The disputes reflect the patchwork of policies that govern how schools across the country deal with such conditions as diabetes, asthma and food allergies among children--all of which appear to be on the increase in recent years.

In one recent case, a child with diabetes in Downey passed out at school. Rather than administer glucagon, school officials called 911 and waited several minutes for paramedics to arrive--an action that one prominent endocrinologist said needlessly endangered the child.

Some parents have challenged uncooperative schools. In Connecticut and Virginia, complaints filed in federal court were recently settled in parents’ favor. The districts were ordered to train staff to inject glucagon and to provide other services.

In the Connecticut case, which dragged through the courts for years before reaching a settlement, the parents of Katelyn Cross said school officials told them they could not allow the child to prick her finger to test her blood sugar level because other students might be offended by the sight. People with diabetes must test themselves several times daily to determine whether they need a snack or fruit juice to bring their glucose levels into line.

In addition to fights over such blood tests, parents and school districts have tangled over whether children should be allowed to wear insulin pumps--devices that eliminate the need for injections. Some school officials have banned them because they look like pagers. Other schools limit how many times children can go to the bathroom, although frequent urination is a symptom of the disease.

Parents want their children to have immediate access to measures they need to control their disease--needles to inject insulin, for example. School officials, on the other hand, have become leery of procedures that involve blood and syringes because of the spread of AIDS and hepatitis and the fear of liability.

Ignorance, Fear Compound Problem

Educators blame the problems primarily on a shortage of school nurses. But patient advocates say ignorance of the disease and fear of liability on the part of school administrators have compounded their difficulties.

“We hear horror story after horror story,” said Shereen Arent, the American Diabetes Assn.’s national director of legal advocacy.

Supported by many doctors and school nurse groups, the association is pushing for nationwide standards.

The group hopes to move more quickly in California. At the association’s urging, state Sen. Martha Escutia (D-Whittier) expects soon to toughen legislation that would guarantee what activists have long sought: the ability of children to test blood in the classroom and to receive glucagon and insulin injections as and where needed.

The legislation also would clarify that nurses can train unlicensed school personnel to administer insulin and glucagon.

Now, most school nurses have not felt it safe to train unlicensed people to give insulin because of the risks. A faulty dose of insulin could lower the blood sugar to a lethally low level, a situation that can lead to brain damage or death. Training is less of a problem with glucagon injections because the risks are negligible, nurses say.

“Some schools have a hard time finding a person on staff who’s willing to learn,” said Karlyn Bock, a school nurse in Ventura County. “However, when school nurses have an opportunity to educate the staff, then that can alleviate all the irrational fears and concerns.”

Diabetes, which is incurable, affects the body’s ability to produce or respond properly to insulin, a hormone that allows blood sugar to enter the cells of the body and be used for energy.

Most affected students have Type 1 diabetes, also known as insulin-dependent diabetes, which involves a daily balancing act. The daily multiple insulin injections can cause too much sugar to cross cell membranes, resulting in abnormally low blood sugar levels.

Diabetes affects almost two of every 1,000 people less than 20 years old. In California, about 15,000 school-age children have Type 1 diabetes, with about 1,500 of them in Los Angeles Unified. Only asthma is more prevalent in the school-age population.

Like many other systems, the Los Angeles district, where Nikki Marquez and Colroy Gordon go to school, has no set policy about diabetes, leaving it to parents to work out each child’s program with the principal.

“In our district, the policy is really individual from child to child,” said Karen Maiorca, the district’s director for nursing services. “We’ll accommodate a kindergartner differently from a 17-year-old.”

Dr. Shobha Naimpally, who directs student medical services for the district, said she knows that parents have concerns, but notes that the district has only 550 full-time nurses to serve nearly 900 schools, including children’s centers and continuation schools. Some schools see a nurse just once a month.

In the absence of a school nurse, everything can depend on the willingness of a principal, a teacher, a secretary or a health clerk to give injections.

As a result, many parents, like Nikki’s mother, Julie Marquez, keep their pagers at the ready.

Even a walk to the nurse’s office for testing or injections can be risky. Leah Mullin, an Atlanta resident active in the Juvenile Diabetes Foundation International, recalls getting frantic calls when her son was in school.

“I can remember many times when my child would leave the classroom and call from a pay phone and say, ‘I don’t know if I’m going to make it to the nurse’s office,’ ” Mullin said. “I would drop everything and race hellbent to the school.”

In extreme cases, parents say, schools without a full-time nurse deny enrollment or insist that a child be bused to a school that is better staffed.

When Colroy Gordon was diagnosed as having Type 1 diabetes last fall, his mother, Shonta Cotten, visited Cimarron Avenue School in Hawthorne.

At the school’s urging, she approved the boy’s transfer by bus to another school with a nurse. Cotten changed her mind after realizing that the early morning ride would force a shift in Colroy’s insulin regimen and separate him from friends and siblings--not to mention leave him in the charge of a medically untrained bus driver.

Since then, Cotten said, she and the school have been at odds. Cotten declines to send him to Cimarron, which has a nurse only three times a month.

Colroy is being taught at home by a visiting teacher--but for just five hours a week.

“There’s not a whole lot I can do,” said Phyllis Bradford, Cimarron’s principal. “I can’t just make a phone call to get a full-time nurse.”

Predicaments for Educators

Special medical needs for children clearly pose serious predicaments for educators. In life-threatening situations, teachers and administrators can be called on to give injections.

Some educators balk, however, fearing that they could be held liable if anything went amiss; they also maintain that it is not their job to perform medical duties with life-or-death consequences, and unions often back them up.

So parents often seek out volunteers and train them, as Julie Marquez has done at Nikki’s school.

She would prefer a more formal arrangement, however.

“I want someone to be trained, and not just trained for an hour,” Marquez said. “And it shouldn’t be volunteers.”

By contrast, Kathy Lugo has nothing but praise for the staff at the Rancho Cucamonga school her 13-year-old daughter, Erin, attends. Not once, Lugo said, has a teacher declined to help Erin. District personnel have even administered glucagon.

The California Department of Education is revising guidelines for meeting the needs of students with diabetes and asthma.

Francine R. Kaufman, director of the Comprehensive Childhood Diabetes Center at Childrens Hospital Los Angeles, said a statewide protocol would benefit children academically as well as physically. “A healthy child is a child who can learn,” she said. “A child who is not getting his needs met is not a child who can learn.”

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How to Get Help

Parents seeking assistance for a child with diabetes can turn to their local school district’s director of medical services or the director of nursing services.

In the Los Angeles Unified School District, the contacts are Dr. Shobha Naimpally, director of student medical services, at (213) 763-8342, and Karen Maiorca, director of district nursing services, at (213) 763-8374.

State officials can also help with difficult cases. Call the Procedural Safeguards and Referral Service at (800) 926-0648.