[Editor's note: This is part two of a two-part series on food allergies in the Corridor. Read part one here.]
Sandra Fischer’s daughter can’t have milk. It’s not as simple as the 11-year-old gets a stomach ache when she has too much ice cream or that she doesn’t like cottage cheese.
For Fischer’s daughter, Mercedes Turek, avoiding dairy is a necessity.
“Part of the difficulty is that it’s a milk allergy. When people hear it, they assume she’s lactose intolerant,” Fischer said. "Really, if she consumes it she could die.”
Mercedes, a sixth-grader at Excelsior Middle School in the Linn-Mar Community School District, isn’t alone. May 2013 data from the Centers for Disease Control and Prevention’s National Center for Health Statistics show that 5.1 percent of people aged 17 and younger had a reported food allergy in 2009-2011.
That's a 57.4 percent increase from 1997-99, when 3.4 percent of children reported food allergies.
That rise has made educators take note.
“The more that allergies have become prevalent has made us realize we need to be a little more aware of that and offer good accommodations in our buildings,” said Julie Jensen, Linn-Mar’s executive director of student services.
Iowa Department of Education officials recommend Iowa administrators follow guidelines from the Food Allergy and Anaphylaxis Network or from the National School Boards Association.
Federal law requires school food service programs to accommodate students whose food allergies qualify as disabilities, a determination a licensed medical practitioner makes. But “in terms of how those accommodations are made, that’s left up to schools,” said Staci Hupp, communications director for the Education Department.
“It all depends on what they decide and what they work out with parents,” she said.
For Suzy Ketelsen, food and nutrition manager for the Cedar Rapids Community School District, collaboration is key.
“One of the pieces that is most critical is that we take this as a team approach,” she said of her district colleagues. “What also becomes critical is the parents’ involvement.”
Just as with educators, parents’ approaches to dealing with their children’s food allergies vary. Fischer opted to obtain for her daughter a Section 504 Accommodation Plan, named for the part of the Rehabilitation Act of 1973, which protects public school students with disabilities from discrimination. It outlined procedures and precautions staff members should take in order to avoid triggering Mercedes’ milk allergy.
“One thing schools have to understand is the severity of the allergen and what they need to do themselves to protect the child,” Fischer said. “School officials need to be able to listen to a parent and listen to the child and understand what it’s like for that parent and for that child to manage that allergy.”
Kelly Williamson, does not have a 504 plan for her 7-year-old son who is allergic to peas and peanuts and who attends second grade at Southeast Elementary School in the Ankeny Community School District.
“It’s a great thing for people from a liability standpoint, but I am on the side of preventing. I don’t want anything to happen. I don’t care who’s liable,” said Williamson, who lives in Ankeny and founded the advocacy group Food Allergy of Iowa.
“My focus has been on education and preventative processes and systems so they know exactly what to do in those situations, what he should and shouldn’t have on his plate. … I want to nix it on the front end instead of the aftermath.”
Fischer filed a complaint with the U.S. Department of Education’s Office of Civil Rights in May 2013 when she believed that some staff at Arthur Elementary School in Cedar Rapids, where Mercedes attended fifth grade at the time, was not properly implementing the 504 plan.
The district denied the allegations but resolved the issue through a voluntary agreement with the Office of Civil Rights, according to documents from the office and correspondence with Jim Bradshaw in the department’s press office. Under the agreement Arthur Elementary administrators, teachers and staff have received training about 504 plans and the district now provides information to all district substitute teachers about students in their classes who have 504 plans.
Fischer wanted to send Mercedes to the Linn-Mar district prior to the issue at Arthur – which Fischer said only accelerated the change – and her mother said she’s been pleased with how administrators have accommodated her daughter since she began attending Excelsior in fall 2013.
“I have nothing but wonderful things to say about how the school has handled her allergy in Linn-Mar,” Fischer said. “I felt that was the best decision I could’ve made for my daughter.”
Jensen said that Linn-Mar schools all have at least one table set aside for students who have food allergies – though they can have friends sit with them, so as not to stigmatize the children – and the surfaces are cleaned with a separate cleaning solution from that used to sanitize the other tables. Some buildings have wipes available for students to clean up before and after they eat to reduce the possibility students with allergies may come into skin contact with allergens.
Both Linn-Mar and Cedar Rapids convene building teams, comprised of staff members, administrators and family members when students indicate that they have food allergies.
“It’s not what will the school do, it’s what will we do together to make sure the school is a safe and healthful environment,” Ketelsen said.
Brown recommended packing lunches from home, instead of buying meals from the cafeteria, as a way that families can be sure students avoid allergens at school. Ketelsen said district food and nutrition staff members work to provide multiple meal options and alternatives for students who have food allergies while striving not to isolate or draw excess attention to them.
“We still want to not single that child out on the line,” Ketelsen said, stating that cafeteria staff actually have a system that allows them see students’ pictures and their reported allergies or dietary restrictions when they go through the lunch line, so they can guide nutrition decisions.
“We want their tray to look as similar if not the same as the tray before and after them. … Otherwise you may find students not wanting to stick with their dietary plan.”
All of this accommodation does come at a cost, and though administrators in Linn-Mar and Cedar Rapids were not able to quantify it they mentioned a desire to get assistance to meet those needs.
“It involves labor, the purchase of special diet food, the management, the education piece,” said Ketelsen, who added that she’d like to see the National School Lunch Program reimburse allergen-free meals at a higher rate. “For a district like ours, it can be very taxing.”
Jensen also said that she would welcome additional financial support, as food allergies become more prevalent.
“There is an additional cost to that that is not part of general school budgets,” she said. “There’s a lot of unfunded parameters that we need to follow. When you look at accommodations under the (Americans with Disabilities Act), there’s a lot of pieces in there that school districts are asked to follow but it is funded through our general fund budget.”
Change on the horizon?
In November 2013, President Barack Obama signed the School Access to Emergency Epinephrine Act. The law favors states where schools have emergency epinephrine, commonly available in the form of an EpiPen injection used to treat anaphylaxis, on hand as well as trained individuals to administer it, for asthma-treatment grants.
Iowa schools cannot keep EpiPens unless they are prescribed to specific students and staff members are prohibited from using those devices on anyone other than to whom they are prescribed. In March 2013, a bill to allow schools to keep and use emergency EpiPens was introduced in the Iowa House, but aside from being referred to the Human Resources Committee, nothing else happened with it in 2013.
“I wouldn’t be surprised if that was coming this year,” said Sally Immerfall, president of the Iowa School Nurse Organization and nurse facilitator in the Cedar Rapids district, about another legislative try.
Jensen said Linn-Mar health services personnel would support changing the law to allow that emergency doses be widely available.
Businesses begin to respond to food allergies
-Chelsea Keenan, The Gazette
As little as eight years ago, the Federal Drug Administration didn't even require the food industry to include common allergens on food labels. But as the number of Americans suffering from a food allergy continues to rise, grocery stores, restaurants and other organizations are starting to increase efforts to deal with these 15 million people.
"We want to help families who have recently been diagnosed with a food allergy transition through phases from infancy, to school, to college, to dating," said John Lehr, CEO of Food Allergy Research & Education, a Virginia-based organization.
That's because food touches so many aspects on an individual's life, whether it's eating in a college dining hall, out at a restaurant, going to a party or shopping for groceries.
Judy Fitzgibbons, a dietitian at the Hy-Vee on 1843 Johnson Ave. NW, said product choices certainly have increased for those with celiac disease, an autoimmune deficiency in which the body is unable to process gluten, but allergy-free products are not as big.
"Gluten free is the current concern," she said. "I've been a dietitian long enough to see multiple food concerns go in and out of fashion."
Even with the increase in gluten-free products and the improvement in textures and flavors, Fitzgibbons said the food still has some improvements to make.
"We're still missing the nutritional value," she said. "These highly refined starches are not enriched and are low fiber."
In addition to the food industry pointing out if the top nine allergens are in a product — peanuts, tree nuts, milk, egg, wheat, soy, fish and shellfish — it has taken further precautions in recent years, adding statements to labels, such as, “may contain," “processed in a facility,” or “made on shared equipment” to labels.
The National Restaurant Association worked with FARE to put together an online education course to train food servers about food allergies, so they can better answer concerned patrons' questions.
FARE also works with federal, state and local governments to pass legislation, such as the School Access to Emergency Epinephrine Act, which encourage states to adopt laws allowing schools to have on hand “stock” epinephrine auto-injectors."I think people still dismiss allergies," he said. "They get caught up on the word allergy and think it's like seasonal or pet allergies."