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Disability-rights advocates take on insulin battle

Published:
13-Dec-2004

Debate over how kids with diabetes are taken care of heats up

By Jeanine Benca

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- An embroiled, national controversy over who should be allowed to give insulin shots to diabetic students in schools may be playing out in the San Ramon Valley.

The leading civil rights organization, Disability Rights Education & Defense Fund -- a Berkeley-based advocacy center that represents the disabled, including people with diabetes, has launched a formal complaint against San Ramon Valley Unified School District.

"We are looking for findings that the district's policy prohibiting any (non-medical) personnel from administering insulin to students is discriminatory," said disability rights attorney Larisa Cummings.

According to the grievance filed last month with the California Department of Education, San Ramon Valley's fairly common rules governing insulin injections encroach on federal civil rights laws for special needs students.

Cummings said she hopes scrutiny of the district -- ignited by a complaint from an un-

named parent of a diabetic child -- will set a widespread legal debate in motion and force California lawmakers to take a stand.

No assistance provided

"Many districts do not provide any insulin assistance -- others do provide some. It's a patchwork across the country," Cummings said. "We are seeking clarification on this question in the hope that it will be readdressed statewide."

She argues that as budget cuts force an increasing number of nurses out of schools, districts should train more lay personnel to give students shots so that the task isn't left entirely to their overburdened parents.

The problem is especially prevalent in poorer districts, where working mothers are unable to visit their sick kids every day, Cummings added.

"It's very, very hard on families. We're seeing people who have had to quit their jobs."

Fires have been ignited on both sides of the issue.

DREDF's position is backed by the American Diabetes Association, which in October launched a national "Safe at School" campaign to train teachers to give insulin shots and combat opposing state laws.

Countering those efforts are teachers unions and nurses organizations that claim less restrictive policies would be unsafe and leave non-medical personnel open to liability.

Parents form support group

In the San Ramon Valley, where a dozen or so families of children with Type I diabetes have formed a support group, many mothers say caring for their ill kids is a full-time job.

"I don't think anybody really understands how difficult the maintenance is," said Nancy Riley of Alamo, mother of a 10-year-old diabetic son.

The disease formerly known as juvenile or childhood diabetes is hardly new, but the medical approach to it has changed somewhat.

Nowadays, parents are advised to micromanage their diabetic children from the time they wake up until the moment they go to sleep at night, with multiple insulin injections and blood tests.

This represents a dramatic shift from the past, when Type I kids were prescribed just one insulin injection per day, usually before they left for school in the morning.

New views on treatment

The current view is that diabetic patients can live longer and reduce their chances of blindness and other complications if they receive insulin shots nearly every time they eat -- not once but three or four times a day. Physicians also recommend a steady stream of "finger prick" tests, in which small amounts of blood are drawn from the patient every few hours to monitor their blood sugar.

Moreover, the amount and type of insulin patients receive should be adjusted daily based on their physical, mental, even emotional exertions.

"It's not a science, it's an art," said Riley, a stay-at-home mom. "I've gotten it wrong, and I'm the one who is most interested in my child's well-being."

Not surprisingly, an untold number of school districts forbid all but parents of diabetic students and district nurses to give shots or perform finger prick tests on their campuses.

In San Ramon Valley Unified, where at least 55 children have been diagnosed with Type I diabetes, the policy is rooted in concerns about safety and liability, said district spokesman Terry Koehne.

"What we have done is worked with families around empowering students to self-administer their own (medication)," Koehne said.

Limited number of nurses

Due to fiscal constraints, the 22,000-student district staffs just four full-time nurses, who circulate among San Ramon Valley's 30 campuses. In addition, each school has an office clerk, teacher or administrator who has been trained to "monitor" students' diabetic conditions, Koehne said.

More students are using self-administering, electronic insulin "pumps," which have helped cut down on the amount of assistance needed, he added.

"The district's nurses are never more than five or six minutes away. We've never had an incident," Koehne said.

Until now, few complaints have surfaced in the mostly affluent district, where non-working mothers can come to school and test their children's blood sugar as needed.

But several months ago, one San Ramon Valley parent of a diabetic child -- a working mom who has asked to remain anonymous -- said she felt compelled to answer an e-mail that DREDF had been circulating in the Bay Area.

Group sought out parents

The organization was searching for parents who were dissatisfied with the current amount of diabetic care available in their districts and would be willing to go public if necessary, she said.

The mother, who is not named in the complaint, spoke mostly off the record about the details of her situation. She acknowledged, however, that her e-mail response provoked DREDF's formal action against the district.

On Nov. 17, a four-page document was sent to the Department of Education. It does not include specific incidents of wrong-doing in San Ramon Valley Unified, but argues that the district's insulin prohibitions as a whole are unsafe and violate diabetic students' rights to a free and appropriate public education.

"Caring for a child's diabetes at school is necessary for the child's immediate safety and critical in preventing long-term complications," the complaint reads.

"The administration of insulin is a procedure that can be performed by properly trained and supervised non-licensed personnel."

In California, nursing codes prohibit any non-medical personnel from administering shots in health care facilities, but make no mention of insulin injections in schools. Nor is the topic addressed in the state's education code.

As a result, insulin policies have largely been left to the discretion of California school districts.

Cummings explains DREDF's decision to name San Ramon Valley Unified in the complaint as a forced reaction to the state's administrative procedure.

Previously, the Department of Education said it would not respond to a widespread policy complaint about insulin and would only address grievances within individual school districts, she said.

Other parents voice concerns

Under state law, the department now has 60 days to respond to the grievance with San Ramon Valley Unified. Meanwhile, parents at a number of other Bay Area school districts -- including Mount Diablo and Fremont Unified -- also have been voicing concerns, and similar complaints may be filed on their behalf, Cummings said.

Nancy Spradling, executive director of the non-unionized California School Nurses organization, believes the solution to problems plaguing diabetic children and their parents is "more school nurses" -- not lay person training.

In recent times, the state's student-to-school-nurse ratio has hit frightening lows, Spradling argued.

Last year, Alameda County had one nurse to every 2,710 students. Contra Costa County's numbers were even worse -- one nurse to every 4,730 students.

"It's appalling," said Spradling, who contends that policy makers need to do more to address the school nurse shortage.

Nurses seek legislation

Her organization is drafting legislation, due to be presented in January, that would strictly bar all non-medical personnel from giving shots in California schools.

In California, hospitals actually require two certified nurses to sign off on insulin injections, Spradling pointed out. Proper medical training cannot be duplicated in a school setting and is "not what teachers signed up for," she said.

Dr. Fran Kaufman, a past president of the American Diabetes Association, disagrees.

"We would love to see enough school nurses, but the reality is that there aren't enough and it's unlikely that there ever will be again," said Kaufman, head of the pediatric endocrinology unit at Children's Hospital in Los Angeles.

"More people need to be trained in the school environment under the supervision of a nurse to help these children."

Giving shots, Kaufman argued, "is not rocket science."

In 1996, the American Diabetes Association teamed up with DREDF and won a landmark legal battle against KinderCare Learning Centers. A settlement forced the national chain of day cares to change its policy prohibiting staff members from performing finger prick blood tests on diabetic children.

But parents of diabetic children voice mixed feelings on the subject of insulin injections in schools.

Working parents' dilemma

"There's just so much to know about diabetes," said Sandee Kakures, a San Ramon Valley parent of a diabetic teen. "I don't think I would have ever expected a teacher to do that."

Her daughter is older now, and needs less assistance from Kakures than she did years ago.

Still, Kakures admitted, "For me, I was blessed that I didn't have to work, and I could be there."

Riley also expressed concerns about the prospect of non-medical school staff doling out insulin injections to students.

"Do I want any Tom, Dick and Harry giving my son an injection? Absolutely not. But a lot of people in our district have the luxury of not having to work," she pointed out.

In other areas, where fewer options are available to working parents, more flexibility may be needed, she said.

"With the advent of cell phones so that parents are in calling distance, I do think a trained office administrator or a trained teacher could give injections if you establish enough controls."

Jeanine Benca is a STAFF WRITER for the Oakland Tribune
Published: Monday, December 13, 2004

 


 
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