With twin boys ready for school, Jason and Jessica Pollard braced for paperwork, parent-teacher meetings and shopping trips for supplies. But they were not prepared for the reception their son, Owen, then 5, received from school administrators.
Officials at their neighborhood kindergarten and a nearby private academy said he would not be allowed to attend because he has Type 1 diabetes. The Pollards, doctors in Seattle, were flabbergasted.
One headmaster said that Owen would never be accepted because of his disability. “It took everything in me not give him the middle finger,” said Jessica Pollard, a pediatric oncologist.
The Pollards are hardly the first family to face this kind of discrimination. Too many schools are failing to provide the growing number of students who have Type 1 diabetes with the routine care they need, such as insulin shots or blood sugar monitoring federal regulators and diabetes experts say. And often, parents do not know they have the legal right to insist on it.
The incidence of Type 1 diabetes among children has increased by 21 percent in recent years. In 2009, an estimated 167,000 children had the disease, according to the latest figures from the Centers for Disease Control and Prevention. In nearly 400 cases since 2011, parents have brought complaints to federal authorities about schools that decline to care for these students.
Experts say the number vastly understates the problem in public and private education.
Many children have been barred from attending their zoned schools or abruptly transferred after diagnosis to schools with nurses, even when their doctors say nursing care is not warranted. Others are not allowed to participate in sports or extracurricular activities.
Parents have been told no school employee is willing to inject lifesaving glucagon even if their child falls unconscious.
The burden for care often falls to the students’ parents. Some jeopardize their jobs with daily trips to schools; some end up pulling their children from school altogether.
“We have principals who tell mothers, ‘Sorry, but you’ll have to home-school your kid,’ ” said Crystal C. Jackson, the director of the American Diabetes Association’s Safe at School program, which educates parents about students’ rights and provides legal aid. “It’s outrageous.”
These practices may be ingrained, but they are also largely illegal. In 2013, the federal Department of Justice found that the state of Alabama systematically discriminated against diabetic schoolchildren for years; students with Type 1 diabetes were not allowed to join field trips and sports practices, or to attend the same schools as their siblings.
“Without question, we do continue to see discrimination against students with Type 1 diabetes in schools in ways I find distressing,” said Catherine E. Lhamon, the assistant secretary in the federal Education Department’s civil rights office.
Unlike Type 2 diabetes, which is linked to obesity and inactivity, Type 1 is an autoimmune condition that leads to destruction of cells in the pancreas, which normally produce the insulin needed to regulate blood sugar.
Blood sugar levels must be monitored in these students, and insulin administered via injections or a pump before meals. Failure to do so can result in serious complications over time, including blindness, kidney damage or amputations. When blood sugar levels go very low, children with Type 1 diabetes may have seizures or die.
In the past, school nurses assisted diabetic pupils, but their ranks have dwindled with budget cuts. Now, in 29 states and the District of Columbia, trained teachers, administrators or coaches are permitted to give routine insulin and emergency glucagon, according to the American Diabetes Association.
Public and private schools are required by federal law to accommodate students with disabilities, including diabetes. Only those run by religious institutions without federal funding are exempt. But though some state laws expressly permit trained non-nurses to help children with Type 1 diabetes, not every administration is willing to allow staff to do so.
Many school officials do not realize that they are obligated to care for children with Type 1 diabetes. But federal protections, like Section 504 of the Rehabilitation Act and the Americans With Disabilities Act, largely grant children equal access to education and to extracurricular activities.
Some administrators fear that providing care with staff volunteers may expose them to legal trouble if something goes wrong. In fact, schools and their employees in many states are shielded from liability. School officials may be obligated to provide routine care to these students, but relying on staff volunteers does not always work.
The Pollards were thrilled when University Child Development School, a private school, accepted him and his twin, Miles. UCDS did not have a nurse on staff, but Dr. Craig Taplin, an endocrinologist at Seattle Children’s Hospital, was confident that a school employee could be trained to help Owen.
Just days before the beginning of school, however, UCDS told the Pollards that no staff member would help.
For a month, the Pollards took turns spending entire days at Owen’s school.
Outraged, the Pollards filed a complaint with the Department of Justice and Washington’s Department of Early Learning.
At the beginning of the school year, she said, administrators sought staff volunteers to help with Owen’s care. None stepped forward, and “the school did not require any employee to serve as a volunteer.”
After extensive negotiations, the school repaid the Pollards more than $20,000 for Owen’s care.
Exasperated, the couple uprooted to Falmouth, Maine.