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.
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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. “We see schools that say, ‘We can’t serve you because you have a disability.’
”What an ugly message to send to a family.”
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. School employees follow individual plans written by a doctor or a nurse.
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.
In 2011, after Kristin Hayles’ daughter, Brynn, then 5, developed Type 1 diabetes, officials at her private school, the Post Oak School, said no one would help test the girl’s blood sugar or administer glucagon, even if her blood sugar were dangerously low. “My understanding was they don’t have to do anything for her,” said Hayles, a geophysicist in Houston.
Hayles left her office to inject Brynn’s insulin before lunch at school and taught her to test her own blood sugar. Concerned that the setup was unworkable and that Brynn might suffer harm, Hayles eventually pulled her daughter out of class.
“They were totally ignorant of the disease,” Hayles said. “It was just a unsafe situation.” Brynn, 9, is now home-schooled.
The Post Oak School did not respond to several requests for comment.
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.
The Department of Education’s Office of Civil Rights enforces so-called 504 plans, which detail the accommodations a student with a disability requires. Since 2011, the office has handled 60 to 100 complaints annually related to diabetes.
Those cases probably understate the problem: The Justice Department said it mostly depends on parents to report suspected discrimination by schools, but parents often do not know that the enforcement mechanism exists. For her part, Lhamon of the Education Department said, “The families who don’t know they can come to us to safeguard their rights keep me up at night.”
In the last five years, the Justice Department has pursued a handful of cases of discrimination against diabetic children, most notably in Alabama.
In 2010, school officials in Birmingham, Alabama, told LaTonya Monroe-Terry that her son Quintarius, then 12, could no longer attend his local school because he depended on insulin injections. Instead, he was forced to go to a nurse-staffed school further away, leaving behind teachers and friends in the middle of sixth grade.
No bus would shuttle him. So, Monroe-Terry put her job at a finance company in jeopardy, picking up Quintarius at 2:30 p.m. then hurrying back to her desk. “I didn’t know that wasn’t right,” she said.
In 2012, officials forbade Quintarius from attending his local high school and said a transfer to a school with a nurse was mandatory. The family refused. After school officials threatened Monroe-Terry with criminal charges she complained to the Justice Department.
Their case became part of a far-reaching investigation into three school districts and Alabama’s education department. The Justice Department found that forced transfers happened routinely.
“This is a matter of straightforward, impermissible differential treatment,” a department report concluded, citing three other students with Type 1 diabetes who, like Quintarius, were unnecessarily transferred. The investigation also found that some parents had given up jobs to provide at-school care a few times a day.
In 2014, a new state law prohibited the transfers of diabetic children and authorized trained school personnel to administer insulin and glucagon to diabetic students, including those like Quintarius who play football for the school. But officials at the DOJ suspect the rights of diabetic pupils are regularly disregarded in other states, as well.
“There could be other Alabamas we don’t know about,” said Eve Hill, a deputy assistant attorney general for civil rights at the Justice Department.
“There are so many examples of situations you’d think school districts would know better, and they don’t,” said Alan L. Yatvin, a civil rights lawyer in Philadelphia who is a former chair of legal advocacy for the American Diabetes Association.
Last year, Yatvin filed suit on behalf of a 4-year-old forced out of a Head Start program in Philadelphia after a Type 1 diabetes diagnosis, and intervened in another instance in which a high-school athlete with Type 1 diabetes was barred from sports unless one of his parents was present.
In both cases, schools were required to hire nurses to tend to the pupils. “You can’t require parents to do what a school is supposed to do under the law,” Yatvin said, adding that the 4-year-old missed nearly five months of education because of her exclusion.
Outside hospitals, most diabetes care is handled by laypeople like parents. Nonetheless, critics say overworked school employees are ill-equipped to assist diabetic students. In 2013, before the California Supreme Court, the American Nurses Association argued that allowing unlicensed nonnurses to give insulin would put children at risk. (The court ruled otherwise, and the state now permits trained school employees to assist diabetic students.)
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.
“As long as they are acting in good faith, they can’t be sued,” said Laura Keller, the director of state government relations for the Northwest region for the American Diabetes Association.
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 Owen. “It was a community of well-educated, knowledgeable people saying, ‘You’re not welcome,’” Jessica Pollard said.
For a month, the Pollards took turns spending entire days at Owen’s school. On one occasion, Jason Pollard, an anesthesiologist, went to get a haircut only to receive a phone call from a school official demanding he immediately return. “It became a requirement that we had to stay,” he said. Eventually they paid their nanny to tend to Owen at school.
Outraged, the Pollards filed a complaint with the Department of Justice and Washington’s Department of Early Learning.
In a statement to The New York Times, Paula Smith, the head of UCDS, denied that school had discriminated against Owen, calling the safety of students the school’s “first priority.”
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.”
In other instances where no volunteer wanted to help, schools have hired nurses, said Kayla C. Stahman, an assistant U.S. attorney who investigated the Pollards complaint.
After extensive negotiations, the school repaid the Pollards more than $20,000 for Owen’s care. Exasperated, the couple uprooted to Falmouth, Maine. Their move ended the investigation.
A nurse now monitors Owen at a public school, and thus far, there have been no administrative hiccups. “It’s awesome,” Jason Pollard said. “It’s 180 degrees the opposite of what we had in Seattle.”