Who's Caring for Our Food Allergic Kids?
A shortage of school nurses means trouble for sick children
When you call Debita Graham’s voice mail at work, you’re instructed to leave a message only after listening to her list the many schools she serves: Tappan Middle School, Lawton Elementary, Burns Park Elementary, Patengill Elementary and Community High School.
Graham, a school nurse in Ann Arbor, Michigan, logs dozens of miles on her car and sees 10 to 50 students and staff daily, assisting with blood-glucose levels, double-checking insulin doses, distributing medications and training teachers and secretaries who play “nurse” in her absence. She is also in charge of making sure student’s immunizations are updated and medications are current. She coordinates hearing and vision screenings. She helps families obtain health insurance, trains parents to manage their children’s diabetes and asthma care and helps kids get their first pair of glasses. Keeping up with the paperwork takes hours. She says she rarely has time just to sit and talk with students about their specific health concerns.
“Kids who are newly diagnosed with diabetes, for example, are in the hospital for only a short time so they come to school looking shell-shocked, holding a baggie full of meds and no idea what to do with it,” says Graham.
She oversees the care of over 3,000 children.
Times Have Changed
Today's school nurses may spend their days rushing between many schools,
being responsible for thousands of children, many of whom have life-threatening illnesses like asthma, diabetes, seizure disorders and cancers, as well as mental health problems like depression and attention deficit hyperactivity disorder (ADHD).
In addition, nurses also tend the many school-aged children with life-threatening allergies whose numbers have doubled in five years and continue to
“Unfortunately, children with life-threatening allergies are the ones falling through the cracks,” says Dale Parent, president of the California School Nurses Organization.
She’s seen it happen in California, where teachers and other non-medically trained personnel are often put in charge of overseeing illnesses and emergencies. There’s typically no one on staff with the medical knowledge and experience to set policy and procedure at school to make sure it’s a safe environment for a child with severe allergies.
“There’s no one to determine if there needs to be a peanut-free classroom or a peanut-free table in the cafeteria or to establish protocol that there’s a separate sponge and bucket for cleaning the table or to coordinate with the doctor to get the orders needed so that the child can carry life-saving epinephrine or to train an unlicensed person to give that child his Epipen or tell them under what conditions the medication should be given. There is no one to send alerts to the teachers to let them know the child in their classroom has an allergy and here are the symptoms and if that happens, this is what you do about it. There’s no one to coordinate the necessary logistics for field trips or for overnights to make sure this highly allergic child has someone with them who knows all about his allergies,” Parent says.
Although there are no precise figures, experts say that at least 16 percent of school children suffer a chronic health condition and many require treatment during the school day.
“Kids with food allergies are the least of my worries,” said Jayketa Singleton, director of health services for the Atlanta Public Schools. Forty nurses are responsible for 51,000 students placed throughout Atlanta’s 82 school buildings.
Singleton says that Atlanta’s public school system has put certain safeguards in place to protect children and extend a nurse’s reach, like making sure emergency services are close by and readily accessible to work around Atlanta’s bumper-to-bumper traffic.
“We’re doing the best we can,” Singleton says. “Even so, I’m overwhelmed by my job. I pray every day that there’s no loss of life or limb on my watch.”
Singleton, who has been in school nursing for over 24 years, says when she first began her job, her day consisted mostly of covering skinned knees with Band-Aids. Now, she oversees children who are coming to school with feeding tubes or breathing through trachea tubes.
“I feel like I’m back in critical care nursing,” she says.
A Time of Need
Nurses are necessary, experts contend, not only in medical emergencies—but to prevent them. Someone without medical expertise might not recognize an emergency situation until it’s too late.
“In the very beginning, some anaphylactic reactions can look a lot like a coughing fit. Eventually, the student is going to start turning blue or stop breathing. The longer it goes on, the harder it is to turn that process around,” says Parent. She serves as health services coordinator in California’s Chula Vista school district, where 27 nurses look after 27,000 students in 44 schools. “The lack of full-time nurses in our schools is a disaster waiting to happen.”
“As we all know, emergencies are not planned,” says Marian Smithey, director of the National Association of School Nurses’ nursing education.
Yet no one can point to a single incident where a child died from an allergic reaction at a school because there was no nurse around.
“I don’t think we want to wait until there is a tragedy to do something about the shortfall of nurses in our schools,” says Anne Munoz-Furlong, founder and president of the Food Allergy and Anaphylaxis Network (FAAN).
Harvey Leo, M.D., pediatric allergist and assistant research scientist at the Center for Managing Chronic Disease at the University of Michigan, agrees.
“As much as we try to use avoidance techniques, at some time a tragedy is going to happen,” Leo says. “And I think the risk that we may lose one child is too high a price to pay in relying on lay people who might not know what to look for.”
The alarming results of a recent survey conducted by the California School Nurses Association were presented at the American Academy of Asthma, Allergy and Immunology’s conference in November 2007:
• Life-threatening asthma and anaphylaxis occur frequently in California schools—in children with and without a prior diagnosis.
• Often medications are not readily available.
• Frequently, children are being treated with other children’s medications and without protocol.
• Despite legislation in California to stock epinephrine in schools, it is not available in many schools.
It’s the Law
In some states, children with severe chronic health conditions and those with learning disabilities are covered under Section 504, a provision of the federal Rehabilitation Act intended to prevent discrimination. Other states allow a child’s chronic health condition to be covered under Section 504 only if that child also has a learning disability.
“These children have a disability—a life-threatening allergy—and cannot be discriminated against,” says Parent. She calls her district’s lack of services to students with severe food allergies “a violation of the child’s civil rights.”
Even so, budgets for school nurses continue to be cut across the nation. Parent believes that cuts are taking place because many administrators don’t understand the critical life-saving role that modern-day nurses play.
Unlike other areas of health care, there doesn’t appear to be a shortage of nurses who want to work in the schools, at least not in Atlanta, according to Singleton. She says she fields dozens of phone calls a week from people looking for a school nursing position. It’s not the lack of qualified workers but the lack of money that prevents her from hiring anyone, she says. Atlanta Public Schools is currently under a hiring freeze.
Atlanta isn’t the only district with budgetary woes. The problem is nationwide, including California.
“The school nursing situation in California is a disaster right now,” says Spradling. The school district in Chula Vista, California, recently cut over $11 million from its budget. Thousands of teachers and more than a dozen nurses received lay-off notices. But even before the cuts, only 50 percent of the schools in California’s 1,000 school districts had a school nurse.
Many districts across the nation now rely on the families of allergic children to pick up the slack, expecting parents to be accessible in school, such as being in the cafeteria at lunchtime, and to be available to go on field trips and overnights.
Budgetary concerns mean that health care services in the schools are far from guaranteed. What is guaranteed is that law and regulations on this issue are a tangled mess. They differ from state to state and often from district to district.
Only Delaware and the District of Columbia require that there be at least one nurse for every 750 students, the ratio recommended by the National Association of School Nurses, The National Parent Teacher Association, the Academy of American Pediatrics and U.S. Department of Health and Human Services. Yet given the overall poor health of many children, one nurse for 750 students may not be enough.
“In most schools today, you won’t find 750 ‘well’ kids,” says Amy Garcia, executive director of the National Association of School Nurses.
To address this, the U.S Department of Health further honed the ratios to reflect a changing student population in its Healthy People 2010, a published set of health objectives for this country to achieve over the first decade of the new century. For children with complex health problems, it recommends one school nurse for 125 students. For children on ventilators, the recommendation is one on one. In most states, one-on-one care for critically ill children is being met, according to Garcia. Not so for many children with lesser problems.
States interpret federal mandates differently. In Utah, it’s not uncommon to find one nurse caring for over 5,000 children. In Michigan, one nurse per 4,200 students is the norm. Children in North Dakota fare no better, with one nurse tasked to look after over 3,800 students.
Youngsters in some regions of the Mid-Atlantic and the Northeast seem to fare better. Baltimore County, Maryland, known to have the preeminent school nursing program in the state, has a full-time nurse in every school. Even so, in a school in Baltimore, 1,100 middle-school children depend on one nurse, Rebecca Colt-Ferguson.
“My walkie-talkie’s going off every minute,” Colt-Ferguson says.
In Vermont, there are 298 children per school nurse. In New Hampshire, it’s typical for one nurse to look after only 376 kids.
In Georgia, schools are required to provide nursing coverage to students with a 504 plan on file—but it’s an unfunded mandate, just as it is in most states.
“The government says ‘Just do it!’ and then leaves it up to us to figure out how to pay for it,” says Atlanta Public Schools’ Singleton. It’s not a surprise that the states with the best nurse coverage are those where state-level mandates are funded.
Yet schools lose funding if students aren’t in school and enrollment dips. Garcia cites multiple studies that found that kids with chronic health problems—like allergies, asthma and diabetes—who aren’t monitored by a nurse during the day miss school more often. Plus nurses aren’t being utilized to promote good health habits that might stave off illness.
“Unfortunately, I don’t have time to teach basic health preventative measures—like nutrition and how to avoid obesity—which might help our students be healthier in the long run,” says Ann Arbor nurse Debita Graham.
Garcia says if schools look at school nursing strictly from a financial standpoint, it doesn’t make sense that states aren’t funding a nursing position in each school. Kids who skip school or who are constantly home sick are likely to cost us more in the end.
“As a society, we should be extending the safety net and making it a priority that kids stay in school,” Garcia says.
Dr. Harvey Leo contends that private schools are the “wild, wild West” when it comes to whether or not there is a school nurse on staff.
Jill Langella, a mother of three who lives in Atlanta, Georgia, found that to be true. Five years ago, before she enrolled her child in school, she felt strongly that there needed to be a full-time nurse on site. Her daughter, Grace, is severely allergic to peanuts, tree nuts and soy. The school that Langella preferred, Whitefield Academy in Mableton, Georgia, sympathized with her and agreed to hire a part-time nurse.
That wasn’t good enough for Langella.
“I told them that a part-time nurse would not help me at all because you never know when a reaction is going to happen. What if the nurse is not there when it does?” she says.
Langella spent hours researching the topic, compiling a thick folder of relevant information. Then she lobbied the school’s board and administration for a full-time nurse. Walking into the meeting, Langella admits she felt a pang of fear that she would be perceived as a “loony, overprotective mother.” But then she thought better of it.
“If I’m not like that, my daughter’s life is at stake,” she says. Her pitch worked and the school hired a full-time nurse.
Parents should get involved and hold their school districts accountable and be aware of what the law in their particular state requires, Garcia says. If parents don’t like the law, they can lobby to change it. If your school doesn’t have a school nurse, Garcia recommends going to see the principal and asking him or her point blank, “Why not?”
“Technically, a school reports to its parents,” Garcia says. “Parents should remember that they have a very powerful voice in what takes place in the schools.” LW