Living with Diabetes

For over six years, the American Diabetes Association has been fighting in the courts to ensure that children with diabetes in California’s public schools have access to the insulin they need to be safe at school. This fight has led us through two lawsuits, and involved one landmark settlement, disappointing and frustrating decisions from a trial and appellate court, and a trip to the California Supreme Court. And we’re still fighting.

Why are we fighting? Because several nursing organizations insist that school employees who are not nurses or other licensed health care professionals cannot safely administer insulin to a student with diabetes at school (no one disputes that parents, and family members or friends that they designate, can come to school to administer insulin, but they cannot be forced to do so). The families of children with diabetes and diabetes health care experts not only disagree with the idea that you need a health care license to administer insulin, but know that this position puts students with diabetes at risk. There is only one school nurse for every 2200 students in California and a budget crisis with school personnel being laid off across the state. And even if there was a full-time school nurse in every school, the nurse wouldn’t be available for all extra-curricular activities and field trips. 

We know that there is a better way: School employees who aren’t nurses can raise their hand and offer to help.  We know this works. Every day millions of doses of insulin are safely given by parents, siblings, family friends and babysitters – and by school employees in states from Washington to Florida. Diabetes experts including patient advocacy groups like ADA, JDRF, and Children with Diabetes; government entities like the National Institutes of Health, Centers for Disease Control, and Department of Education; and health care professional societies all agree that insulin can – and should – be safely administered by trained non-medical school personnel when a nurse isn’t available. What’s standing in the way of safety and good sense? 

It’s a long story. Six years ago the American Diabetes Association, represented by Disability Rights Education and Defense Fund (DREDF) and Reed Smith LLP, sued the California Department of Education and several school districts because kids with diabetes weren’t getting the care they needed. We successfully settled that case and the provisions included allowing a school employee who wasn’t a nurse to volunteer to be trained to administer insulin when a nurse wasn’t available.

So far so good.

Unfortunately, after the settlement was announced several nursing organizations (none of which specializes in diabetes) sued the California Department of Education arguing that under their interpretation of state law no one but a licensed health care professional can help a child with diabetes in need of insulin. ADA stepped in to fight for our kids. 

The trial court and Court of Appeal disagreed with us, saying that state law ties their hands. They ruled that state law prohibits school employees who are not nurses from volunteering to help children with diabetes by administering needed insulin. It’s worth noting that the judges haven’t said that allowing school personnel to help out isn’t safe. In fact, two of the judges have gone out of their way to say that they think it’s the right thing to do.

The American Diabetes Association asked the California Supreme Court to review this decision and, on September 29, 2010, the Court announced it will do so. This is great news for California children with diabetes!  The Court takes only about 2% of the cases submitted to it and all seven justices voted to take our case. This is a positive sign that the California Supreme Court is concerned with the appellate court decision, but is not an assurance that the decision will be reversed. We have asked the Court to reverse the decision of the lower court and hold that state law permits non-medical school staff to administer insulin and that federal law requires it where, as here, a nurse who isn’t there can’t provide the needed care. In May 2011, a number of groups, including the U. S. Department of Justice, and medical groups including the American Academy of Pediatrics - Section on Endocrinology, the Amercian Association of Clinical Endocrinologists, and the American Association of Diabetes Educators, filed friend of the court briefs supporting the Association's position.

We know the stakes are high because we know what the appeals court ruling would mean for kids with diabetes.  If that ruling stands, their health and ability to learn will suffer. Some will be sick at school; others will go on outdated treatment plans to minimize how often they will need insulin at school; still others will be pushed into self-administering insulin when they just aren’t ready yet. Some parents will lose their jobs in order to be on constant call to come to school to care for their child.

The bottom line is that ADA will continue to fight for our kids. In addition to the court battle described above, we’ve made many attempts to pass state legislation to protect kids with diabetes in schools. We were successful in getting a law passed in 2003 that ensures kids have access to glucagon for a low blood sugar emergency and those who were able to self-manage their disease are allowed to do so. However, special interest groups have successfully fought our efforts to make sure students with diabetes have a realistic way of getting insulin in schools. They seem to be worried that if someone other than a nurse administers insulin then school districts will say they need even fewer nurses. While we support their fight for more nurses – which will benefit all children-- we disagree that making young children with diabetes wait for a nurse who isn’t there is the way to reach that end.

The families who love kids with diabetes and the health care providers who have dedicated their lives to caring for these kids are outraged that the best interest of these young children isn’t everyone’s top priority. And as Diabetes Advocates we will continue to fight for safety and fairness for all of California’s children.

For more information about diabetes care in California schools click here.