By: Daniel Trecroci
In 1999, Crystal Jackson feared for the life of her daughter, Devin, who has type 1 diabetes.
At the time, Devin was a 9-year-old student at a federally funded school in Loudoun County, Virginia. School officials refused to accept responsibility for administering lifesaving glucagon injections to students in cases of severe hypoglycemia (low blood glucose)—arguing that only registered nurses could administer the emergency injections.
Nurses, however, were not available at all Loudoun County schools. Instead, the school district adopted a policy that called for dialing 911 rather than having nonmedical personnel administer glucagon.
Jackson and another mother, Sandi Pope, responded by explaining that their children could die or suffer brain damage in the seven to ten minutes it might take for emergency personnel to arrive. They cited the school district’s refusal to administer glucagon as a violation of section 504 of the federal Rehabilitation Act of 1973.
The Office of Civil Rights of the U.S. Department of Education agreed to take on the issue. In October 1999, the office’s investigation ended with the signing of a formal Commitment to Resolve. This document required the Loudoun County school district to take the following actions:
- Provide trained school personnel to accompany children with diabetes on field trips, during extra-curricular activities and on the bus
- Provide basic training in diabetes care for all school staff who have immediate custodial care of children with diabetes at school
- Develop and implement a healthcare plan (usually referred to as a ‘504’ plan) for each student with diabetes, setting out the reasonable accommodations needed for that specific child
Today, Devin is 13 years old and an honors student at Simpson Middle School in Leesburg, Virginia (another Loudoun County public school). In a discussion with Diabetes Health, Crystal Jackson—who today is a member of the American Diabetes Association’s legal advocacy team—reports that Loudoun County public schools are now doing an excellent job in meeting the needs of children with diabetes.
Section 504: Protecting Your Child’s Rights
According to the U.S. Department of Education, section 504 protects the rights of people with handicaps in programs and activities that receive financial assistance from the federal government.
Section 504 addresses the rights ‘not only of individuals with visible disabilities but also those with disabilities that may not be apparent’. This includes people with diabetes. According to the Department of Education, diabetes is regarded as a hidden disability or an impairment that is ‘not readily apparent to others’.
Schools can lose federal funding if they do not comply with section 504.
Lisa Shenson of Marin County, California, is another mother of a school-age daughter with type 1. When talking to other parents of children with diabetes, Shenson emphasizes the importance of a 504 plan.
Among parents who do not have a 504 for their child, she typically encounters remarks such as these:
“I’ve never heard of a 504. What’s that?”
“I don’t want to have my kid labeled.”
“The school district says that this is the way they do it. I am afraid to make waves.”
Shenson’s response is to begin by explaining the positive benefits of a 504.
“A 504 protects your child’s safety through mutual understanding and education [about] your childs medical needs,” she says, adding that a 504 plan:
- Protects your child’s legal rights to free appropriate public education
- Clearly defines responsibilities and expectations related to daily diabetes management
- Is an effective way to build a positive and enduring partnership between the school and your family
- Protects the school by clearly stating in writing the needs and expectations of its involvement in providing care for your child
A Written Agreement
Peter Chase, MD, is a professor of pediatrics at the University of Colorado Health Sciences Center and the author of ‘Understanding Diabetes’ (Children’s Diabetes Foundation at Denver, 2002). Often referred to as the ‘Pink Panther book’, the volume is now in its 10th edition.
Chase says that a 504 plan “outlines reasonable accommodations which will be made in the least restrictive manner to ensure the child with diabetes is allowed the same educational opportunities as other students and at the same time provide a plan for the child’s medical needs”. He describes a 504 plan as a written agreement between the parents and the school based on the recommendations of the child’s healthcare provider.
Protecting the rights of a child with diabetes means that the school cannot refuse to allow a child to be on a committee, cannot deny credit to a student whose absenteeism is related to diabetes, cannot refuse to administer medication and cannot determine sports and extracurricular participation based on the student’s diabetes.
“[A 504 plan] can also make provisions for the child to test, snack and/or medicate in a fashion which least intrudes on daily class time,” says Chase.
He adds that a school cannot require parents to waive liability as a condition of giving medicine to a child with diabetes. In addition, he states that once the 504 plan is in place, federal law mandates that it be followed.
“For instance, if a noon insulin injection has been ordered by the child’s physician, once [this is] stated in the 504, the school is obligated to see that it’s given. In the case of a child not old enough to give the injection to himself or herself, the school must make arrangements for its administration. Contrary to popular belief, it is not the parent’s responsibility to do so.”
Back to School: Is Your Plan in Place?
Shenson advises parents to insist on a 504 meeting with the school team before the first day of the school year.
“The team should [include] the school nurse, your child’s teacher(s), a top school administrator such as the principal, and the appointed coordinator of special services for your child’s school,” she recommends. “You should prepare a proposed 504 plan prior to the meeting and bring enough copies for all in attendance. This gives you the opportunity to steer the 504 planning process, and it provides a starting point to discuss accommodations.”
Shenson also points out that this meeting is a perfect opportunity to distribute a brief one- or two-page summary about diabetes for school personnel, in addition to the 504 plan. She favors a short list of emergency guidelines for the treatment of hypoglycemia as well as contact phone numbers.
“This one-page summary can be kept at the teacher’s desk and should always be given to any substitute teachers,” Shenson suggests. “Cumbersome and lengthy forms will not be read in an emergency!”
Although a meeting before the school year begins is optimal, Shenson stresses that if a parent wishes to initiate the 504 process at any time during the school year, “it is never too late!”
What If My Child Goes to Private School?
Although section 504 applies specifically to individuals in federally funded programs, it can also provide protection for children with diabetes who are attending private schools.
“Remember that if the private school receives even one dollar of federal support, it too is obligated to follow the law,” explains Chase. “Many private schools participate in federal lunch programs, for example, which would obligate them under the law.”
He adds that even if section 504 is not applicable to your child’s school, it is still wise to have a written individualized student health plan prepared and presented to the staff before the school year begins. Chase outlines such a plan in chapter 23 of his book, which is available to be read online at www.barbaradaviscenter.org.
Barriers to Wider Adoption of 504 Plans
Opinions as to why parents of children with diabetes do not widely embrace 504 plans run the gamut.
Shenson believes that a “lack of information on all levels” is a primary barrier.
“Parents of children with diabetes need to be better informed and educated about the 504 plan and the process for establishing one. . . . Schools often view diabetes management as ‘cookie cutter.’ Knowing that diabetes management needs to be tailored to the specific needs of each child, it can be quite frustrating and confusing to navigate the path of advocacy. But you are the expert on how to best care for your child.”
William Cross, parent of Katelyn (see below), believes that most parents are unaware of section 504 and that few schools are forthcoming about it.
Crystal Jackson argues that the schools’ lack of education about the requirements of section 504 is the primary barrier to increased use of 504 plans. She also cites a lack of personnel to be trained to provide diabetes care and services to students with other disabilities.
Chase calls fear the biggest barrier to wider adoption of 504 plans—“the school’s fear of being obligated to allow or perform necessary medical tasks and fear of not having the potential school funding to support the staff to carry the tasks out safely.”
Shenson advises parents of children with diabetes to “never sign a 504 plan they can’t live with.” She also cautions against assuming that the school nurse is philosophically in sync with your family’s individual style of diabetes management just because he or she claims to know about diabetes.
“You know your child best,” Shenson emphasizes. “Creating a seamless transition from home life to school life for your child ensures [that] your hard work in teaching your child positive values and attitudes about diabetes is supported no matter where your child is!”
Not All Schools Play by the 504 Rules
Although developing a 504 plan is highly recommended, it may not always ensure that a child with diabetes is protected. There is always the possibility that the school will not agree to the proposed accommodations.
“Sadly, it does happen,” says Lisa Shenson.
It did happen to William Cross and his daughter Katelyn.
Cross is a board member and cochair of the government relations committee of the Greater New Haven chapter of the Juvenile Diabetes Research Foundation, in Hamden, Connecticut.
In 1996, Katelyn’s physician at Yale University School of Medicine created a 504 plan for her, mandating blood-glucose testing and snack breaks.
The school, however, did not agree to Katelyn’s 504 plan. Instead, teachers sent her to the nurse’s office every time she had to test.
Cross spent months going back and forth with the school system, asking why the 504 plan had been denied. The reasons for denial, he notes, kept changing,
Cross ultimately filed a lawsuit under the Americans With Disabilities Act of 1990. In 1999, an agreement was reached that specified reasonable accommodations for Katelyn.
Today, Katelyn is attending a different school, which seems to have no problems with her diabetes plan.
“Most school districts understand what section 504 is. However, they also know most parents don’t have the fortitude to spend lots of money and time battling over its enforcement,” Cross observes.
Shenson admits that it is sometimes a staring contest and that schools know the parents will either knuckle under at the beginning or stand tall.
“Many schools may be familiar with 504 but don’t know diabetes is covered under it,” she says. “Parents just need to yell back.”
If you do create a 504 plan and the school does not adhere to its rules, Crystal Jackson advises documenting everything in writing and working your way up the chain of command.
“Education and negotiation are the critical first steps. Many times, it is lack of information that causes misunderstandings and difficulty. If resolution still is not reached, then parents may consider filing an administrative complaint with the U.S. Department of Education/Office of Civil Rights or instituting a lawsuit.”
With or without a 504 plan, excellent communication between family and school personnel is essential, says Alyne Ricker, MD, a pediatric endocrinologist at the Joslin Diabetes Center in Boston.
Shenson advises parents who run into a 504 predicament to stay calm.
“Remember that your goal is to establish a positive long-term relationship,” she says. “Enlist the help of your medical care provider. Get things in writing. If necessary, arrange to bring your certified diabetes educator to school for further education. This can do wonders!”
Peter Chase, MD, notes that if the school refuses to work with the parents, the next step is to go to the school district and even obtain legal counsel.
“The American Diabetes Association advocacy arm can also be useful,” he adds.
Off to College
Once your child with diabetes becomes an adult with diabetes and heads off to college, section 504 does not become moot. Different requirements come into play, however.
According to the U.S. Department of Education, a nonreligious, federally funded college has no obligation to identify students with handicaps. However, the college is “required to inform applicants and other interested parties of the availability of auxiliary aids, services, and academic adjustments, and the name of the person designated to coordinate the college’s efforts to carry out the requirements of section 504.”
At the college level, it is the student’s responsibility to make his or her condition known and to request academic adjustments. A student may choose to make his or her needs known to the section 504 coordinator, an appropriate dean, a faculty adviser or professors on an individual basis.
504 in the Workplace
If you have diabetes and leave the confines of school to enter the ‘real world,’ 504 is still there to protect you.
If you work in a government office or for an employer who receives federal money, your employer must make available the same accommodations afforded to schoolchildren and college students with diabetes. If your employer refuses, you can file a complaint under section 504.
Prohibits recipients of federal funds from discriminating against people on the basis of a disability.
Individualized Education Program (IEP)
Addresses the needs of students with learning disabilities that impede academic functioning and progress.
Individuals With Disabilities Act (IDEA)
Provides federal funds to assist schools in making special education programs and related services available to students with disabilities. For a student to qualify under IDEA, the student’s diabetes must have an adverse impact on his or her academic performance, to the point where the student requires special education.
Americans With Disabilities Act of 1990
Prohibits discrimination against a qualified person with a disability.