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Diabetes Forecast

The Healthy Living Magazine

504 Plans: A Guide for Parents

How to protect your child's right to an equal education

Teaching Schools About Children's Rights

In a perfect world, students with diabetes would attend school without worrying whether someone in the building knows how to inject glucagon in a low blood sugar emergency. They wouldn't be left behind on field trips because the nurse took a vacation day or be told they couldn't try out for the football team because it's too risky. While many children get through school without an issue, too many run into obstacles simply because of their diabetes.

The good news: The law is on the students' side. By setting up a 504 plan, parents can make sure the school takes responsibility not only for their children's education but their care, too. Read on for the 411 on 504 plans.

Q. What is a 504 plan?
Section 504 of the Rehabilitation Act of 1973 is a civil rights law that prohibits discrimination based on disability. A 504 plan, then, is a legal document designed to ensure that students with a disability such as diabetes can manage their condition at school and receive the same education as other kids. The plan, which applies to all public schools and any private schools that receive federal funds, uses diabetes management goals developed by a student's health care provider to spell out for the school exactly how the child's diabetes should be managed during the day.

Q.Does my child need a 504 plan?
All children with diabetes should qualify for services under Section 504, although individual assessment is required. And, according to Crystal Jackson, director of the American Diabetes Association's Safe at School® campaign, all qualifying students with diabetes should have a 504 plan in place.

Q. When should I set up a plan?
Consider a 504 plan like insurance—something you have for peace of mind, in case of a natural disaster or car accident. It's a good idea to set up a 504 plan as soon as your child is diagnosed with diabetes, even if all is well with the school. "Be proactive and put everything in writing to be safe while it's working well," says Jackson. It's better to be prepared in case of the unexpected—say, cutbacks that take the nurse away from the school too often or a new principal joining the staff—than scrambling to set up a plan while your child's safety is in question. If your child has had diabetes for a while but you have never established a 504 plan, now is the time to pursue it.

Q. How do I put a 504 plan in place?
Before you approach the school about a 504 plan, do your homework. First, ask your child's doctor for a Diabetes Medical Management Plan (DMMP), which will detail the diabetes care needed at school, including your child's target blood glucose levels, when or how often he or she should check blood glucose, symptoms of high and low blood glucose, how to treat hypoglycemia, insulin-to-carb ratios, and more. Some pediatric endocrinologists have their own DMMP forms, but you can also bring the American Diabetes Association's template with you for guidance. (Find it at diabetes.org/DMMP.)

For more information about keeping your child safe at school, go to diabetes.org/safeatschool.

Discuss your child's DMMP with the school nurse, then talk to the principal or 504 coordinator about setting up a 504 plan. (Some schools may have a 504 coordinator on staff while others may share a 504 coordinator with the rest of the school district or have designated someone—a guidance counselor or special education director—to serve that function.) From there, you'll meet with a team of school officials—it differs from one school district to the next, but the group typically consists of a 504 coordinator, principal or vice principal, guidance counselor, school nurse, school social worker, and the child's teachers—first to establish your child's eligibility and then to write the plan.

Determine eligibility. The school will first need to establish whether your child qualifies. This step in the process should be painless: A 504 team will determine which disability permits your child to receive services under Section 504. A letter from your doctor explaining your child's diabetes may be needed as proof of disability.
Set up the plan. Armed with your child's DMMP, you'll meet with the 504 team to write the plan. (This might occur at the same time as the eligibility meeting or at a later date.) The school's 504 coordinator should be familiar enough with a plan to guide the writing, but even if your school has its own template, it's a good idea to know ahead of time some provisions you may want to include. The ADA has a sample plan (go to diabetes.org/504plan) that you can use as a guide, but yours may be longer or shorter.

How comprehensive your child's plan should be is based on his or her needs. That said, there are certain provisions all plans should address:

Trained diabetes personnel Don't assume a school nurse will be on the premises at all times. Many school districts have made major cutbacks that stretch a single nurse over multiple schools. To make sure your child has help, specify in your plan the number of staffers who should be trained in diabetes management, such as how to recognize high or low blood glucose and administer insulin and glucagon. The plan should require a school nurse or a trained staff member to be available during school hours, on field trips, and for any school-sponsored extracurricular activities your child participates in.
Other trained staff Anyone who cares for your child during the day—such as teachers, coaches, extracurricular activity advisors, even the bus driver—needs to have a basic understanding of diabetes. They should be trained to spot highs and lows and advised on what to do in case the student needs help.
Needs and abilities A DMMP will guide the 504 team in outlining a student's self-care abilities (can he or she inject insulin?) and requirements (does a trained adult need to calculate an insulin dose for the child?). You'll also want to establish that your child has the ability to care for his or her diabetes anywhere, anytime—including in the classroom.
The right to carry Some schools require kids to see the nurse for any diabetes-related activity, which can lead to lots of missed class time. If your child can manage his or her own diabetes, your plan should make certain that he or she can carry diabetes supplies at all times. And be specific. Some schools consider needles to be weapons, so your plan will need to note that insulin syringes, a glucagon kit, and lancets are to be accessible to your child at all times.
Tests and injections A good 504 plan outlines the specifics of diabetes care: When will the student check blood glucose? Who will give insulin and how (pump, pen, syringe)? What are the child's typical symptoms of high or low blood glucose—and how should the school treat them? Don't assume the school will know the best practices. For instance, your child should be able to check and treat blood glucose on the spot instead of walking alone—which is unsafe—to the nurse's office.
Snack time Even if drinks and food aren't allowed in the classroom, children with diabetes have the right to treat low blood glucose as needed. A section of your 504 plan should deal with hypoglycemia treatments as well as meals, snacks, and classroom parties. Include when the student will eat, whether you will supply carb counts for foods, and if an adult needs to verify your child has eaten his or her snack or lunch.
Fitness Kids with diabetes shouldn't be banned from gym or sports, and your 504 plan can make sure they get to participate. You'll also want to specify that gym teachers and coaches have fast-acting glucose available, are aware of the signs and symptoms of highs and lows ("Know the Low," p. 35), and know how to help in cases of hypoglycemia.
Extracurricular activities Make sure your child is able to participate in before- and after-school activities, field trips, and other school-sponsored events (such as dances) by including a provision in the 504 plan. Not only that, but state the school's responsibility: A nurse or personnel trained in diabetes care should be available for such activities.
Education Children with diabetes are entitled to a fair education, but that doesn't always happen. High or low blood glucose can affect a child's ability to perform well on tests, and proctors may not allow children to eat or drink during an exam. Many parents stipulate in the 504 plan that if their child experiences high or low blood glucose before or during an exam, he or she will be able to take a test at a later date, and that teachers need to help the student make up any missed class time. The plan may also specify that the student can take breaks as often as needed—during an exam or regular class time—to use the bathroom, check blood glucose, or otherwise treat his or her diabetes. Finally, make sure your child won't be penalized for missed classes or absences related to diabetes.
Communication Parents should state how they wish to be informed about diabetes care that happens at school. Should the nurse or trained staff person alert you each time your child's blood glucose is low? Do you want a weekly report instead? The frequency of communication between you and the nurse needs to be spelled out in the plan.

School rights for the college set: Learn more at forecast.diabetes.org/college-aug2009.

Chances are, your 504 meeting will go smoothly, but it's best to be prepared in case you run into problems. Because of this, any communication you have with the school should be in writing—either by e-mail or letter. Also get a copy of the documents after you and the school staff have signed the plan.

Q. What happens once I sign?
When you and representatives from the school sign the 504 plan, it becomes official. Yet, it's not set in stone. You can update it at any time by alerting the school to any changes—for example, if your child becomes able to give his or her own insulin midway through the year. Though not always required, it's a good idea to have 504 plan team members sign the updated document.

A 504 plan should be updated annually. Of course, that doesn't necessarily mean you need to start from scratch every year. "If the accommodations are working and the child's needs in the school haven't changed at all, then everyone can re-sign the same plan," says Sarah Blenner, JD, MPH, a lawyer and director of the Center for Diabetes Research and Policy at the Illinois Institute of Technology.

If you move to a new school district, though, you'll need to broach the topic of a 504 plan with the school. The new administration may agree to the same plan your child had in place at his or her previous school or you may need to rework it entirely. Even after high school, students have rights under Section 504 (through college, grad school, and beyond). Your son or daughter should work with the institution's disability office to create a plan for managing diabetes and academics together.

Q. What's the difference between a 504 plan and an Individualized Education Program?
Under the Individuals with Disabilities Education Act, students with mental, physical, and learning disabilities are guaranteed the help needed to have equal access to education. Individualized Education Programs (IEPs) specify many of the same health needs and goals as 504 plans, but go a step further by detailing academic services for the student. Most of the time, students with diabetes need only a 504 plan. If a child needs an IEP, a 504 plan won't be necessary.

Q. What should I do if the school won't comply?
There are many reasons schools fail to recognize 504 plans, the most common being ignorance. "I do believe there are school districts that are not familiar with the 504 process, but these tend to be smaller or rural schools," says Ed Kraus, JD, a law professor at the Illinois Institute of Technology Chicago-Kent College of Law, who helped pass Safe at School® legislation in Illinois.

That's where education comes in. According to Blenner, some districts may not realize that diabetes is covered under the "disabilities" umbrella in Section 504. With a little clarification, the school may alter its stance. "It's important for the family to know that they know their child best," says Blenner. "The school might need additional educating."

If your child is being discriminated against at school because of diabetes, call 1-800-DIABETES (1-800-342-2383) for free information and to ask to speak with an ADA legal advocate.

Whether a school maintains children with diabetes don't qualify (false), says the district doesn't "do" 504 plans (also false), fails to meet certain terms specified by parents, or simply disregards the 504 plan it signed, you can challenge it. Many parents begin by talking with the 504 coordinator and raising concerns. "Make sure you know the reasons behind the school's objections," says Jackson. "Most likely it's some miscommunication."

If you and the school are disagreeing about a few issues, Jackson suggests signing part of the plan so your child has at least some protection in place and then continuing negotiations on the rest of the issues. "The first time I worked with a school to write a 504 plan for my daughter, it took me a year," she says. "We kept negotiating the other provisions, which were quite significant, actually."

A common objection from schools is that state law prohibits anyone but nurses from managing a child's diabetes. While that may be the case in some states, it doesn't leave your child unprotected. "If state law allows only a nurse to provide care, then it's the school's responsibility to have a nurse available at all times," says Jackson. If the school district allows only nurses to treat diabetes but doesn't provide one at all times or refuses to allow school staff to volunteer to be trained to provide care, you may need to enlist help.

The ADA has legal advocacy staff and a national network of attorneys and volunteers experienced in school rights for students with diabetes. For help, call 1-800-DIABETES (1-800-342-2383).

Q. How can I protect my child who attends a private or religious school?
Public-school children are undeniably eligible for services under Section 504. Things get tricky from there. Some private schools receive federal funds, but not all. Students who attend nonreligious, privately funded schools aren't protected under Section 504, but they do have rights under the Americans with Disabilities Act. In that case, parents or guardians will need to talk with the school administration about setting up a written plan for their child's diabetes care. (You can model it after the ADA's sample 504 plan.)

Religious schools, unless they receive federal funds, are not required by law to follow either Section 504 or the Americans with Disabilities Act. Some religious schools do receive federal funding, though, such as through provision of books, a school lunch program, or a reading assistance program. If a religious school receives no federal funding, parents might consider approaching the school about its antidiscrimination policy and asking the administration to sign a written diabetes education plan.

"It's one of those things parents need to consider when they're thinking about where to send their child to school," Jackson says. That said, states may have their own legislation, such as the Illinois law that protects the rights of students with diabetes, including those attending religious institutions. Plus, says Kraus, the majority of school discrimination cases he sees take place in public schools.

 
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