Children with special health needs hit especially hard by shortage

Each school day, about a fifth of the children in California schools attend class without a nurse in the building. If they get sick during the day, the schools call parents, or in an emergency, 911. But if emergency medication needs to be administered — an epinephrine shot for allergies, for example, or other kinds of medication injections — there may or may not be someone qualified or trained to provide the treatment.

Researchers conducting a large-scale study from the California State University-Sacramento School of Nursing have released preliminary findings showing that 57 percent of California public school districts have no school nurses whatsoever. Those districts serve about 20 percent of the students in California public schools, or about 1.2 million children. In districts that do have nurses, many of them are not working full time, or move between multiple schools and cover thousands of students. The average number of schools per nurse, according to the study, is six.

Gabriella Dominguez carries an iPod with her at all times throughout her day as a kindergartner at Willow Glen Elementary school in San Jose. Her iPod doesn’t have the latest kid-friendly hits — it keeps track of her detailed and highly specific feeding schedule. Gabriella, who is 5 years old, has Hirschsprung’s disease, which means she cannot digest food normally, and has had her colon and half of her large intestine removed. About half of her diet consists of specialized baby formula, and the other half is simple foods such as rice, bananas, bread and deli meats. To get enough calories, she needs to eat every hour, which she does in the back of her classroom with the help of an aide who is with her at all times. The aide also makes sure she doesn’t drink any water, which she cannot do, and doesn’t run around too much and get dehydrated.

While Gabriella’s daily needs are now taken care of, her father, Chris Dominguez, worries about contingency situations, and says the school has no backup plan in place, and no one qualified to assess what’s happening if Gabriella says she doesn’t feel well.

“There should be someone who’s professionally trained with blockages, with a little bit more health background as opposed to a health aide who can give you an ice cube or a band-aid,” Dominguez says.

Kelly Shepherd is that person — she’s a credentialed school nurse, and Willow Glen is one of the schools she covers — but she’s only there one day a week, and struggles to keep up with the needs of all the students she needs to manage. This year, in addition to Gabriella, she has four other students at Willow Glen with serious health needs that require detailed plans and constant management.

“Our cases have become more intense,” Shepherd says. “Many more medical procedures needing to be set up and monitored, and a great deal of my time this year has gone into training people.”

Though Shepherd says she relies heavily on the less skilled health aides at the schools she works in, she doesn’t believe the coverage they provide is an adequate substitute for a trained professional.

“When dealing with unlicensed people, they’re not necessarily as astute at looking for things and linking things, and ‘ooh, I should have my nurse check this out,’” she says.

The Dominguez family has run into issues when Gabriella’s aide is late or unable to make it to school. The only option they feel they have in that situation is to take her home, because no one else who has been trained to care for Gabriella is available. They also had trouble at the beginning of the school year with putting Gabriella’s current plan into place. The first two days of school in August, Gabriella was underfed and then overfed, her father says, and so they took her out of school until October, when they were confident a more reliable plan had been developed.

In the last decade or two, medical technology has advanced, and more and more parents of children with special needs have pushed to exercise their right to have their children attend public school. The federal Free Appropriate Public Education provision of the Rehabilitation Act was enacted in the early 1970s, which gives all children, regardless of their needs, the right to attend school and have their needs met. In addition, instances of chronic conditions such as asthma and diabetes have risen during that time, according to the Centers for Disease Control and recent research funded by the CDC, meaning more children are in school with complex health issues that need regular attention.

Larene Pare’s daughter Niara, 17, has cerebral palsy, and attends Oakland High School. Niara has a tracheotomy, and needs to have a nurse with her at all times.

“If something happened to our one-to-one nurse, I would be very, very concerned,” Pare says. In her family’s experience, it is often difficult to find a substitute. “There are never enough nurses to go around — enough competent nurses.”

Niara has been in public school her whole life, and Pare has fought hard to make that happen. She works for a family resource center that provides support for families with disabilities, so she also sees the effects of these situations on other families.

“If the parent doesn’t understand what their rights are, they will of course do whatever they can,” to make up for the shortfall in care, she says. “The school will make the parents feel guilty for not doing it themselves.”

In addition to better nursing care from the schools, Pare says she would also like to see better collaboration between the school district and third party agencies such as the one that provides Niara with her one-to-one nurse. The Pare family has also had trouble with transportation. Niara rides a bus to school that is equipped to accommodate her wheelchair, and if the bus doesn’t show up, which sometimes happens, they have to find a way to take her themselves.

Dian Baker is one of the lead researchers on the school nursing study, and she says she would like to see more comprehensive data collection on children’s health needs in schools.

“There’s no systematic way and no requirement in California for schools to gather systematic data on health-care needs,” Baker says.

She and the other researchers are also pushing for more regulation around what are called Medi-Cal Administrative Activities funds. This is money the schools get from the state, ostensibly to reimburse the districts for health-related spending. But Baker says that in some districts, the funds are not restricted, and go back into the school’s general fund, where they could be used for any purpose, not just health needs.

“Guaranteeing that [the money] gets back to where it should be would go a long way for health,” Baker says.