FARE Files Amicus Brief in Food Allergy Discrimination Case

tealgavel200x125A case involving a kindergarten student with a tree nut allergy has the potential to set a precedent for food-allergy-related accommodations in a federal appellate court. FARE, joined by the Council of Parent Attorneys and Advocates, filed an amicus (friend of the court) brief Friday in the civil rights case, T.F. vs. Fox Chapel Area School District, in the Third U.S. Circuit Court of Appeals, one step below the U.S. Supreme Court. 

A federal judge previously ruled that the school district did not discriminate against the child in violation of Section 504 of the Rehabilitation Act, and that the school offered reasonable accommodations, and had not retaliated against the student’s parents when it filed a truancy petition after the parents withdrew their child from school. Among the accommodations that the school offered was special lunch seating at a nut-free table that was actually a single desk in the cafeteria. 

The amicus brief outlines the critical importance of school-wide food allergy management policies, as well as detailed individualized student accommodation plans that not only note policies, but specifically explain how they will be carried out and by whom. We will keep you posted on the outcome of this case.

The Promise of the School Access to Emergency Epinephrine Act

George-800By: George Dahlman, Vice President of Advocacy & Government Relations

Parents of children with food allergies across the country celebrated when President Obama signed into law the School Access to Emergency Epinephrine Act in November. They did so with good reason. Here was a federal recognition and remedy for the risks that children with food allergies face in our schools.

To be sure, the successful passage of the legislation was a landmark achievement for the food allergy community, raising awareness and sensitivity to the issue, and for FARE, which had been working on it for over two years. But it’s also important to recognize what the Act does — and what it doesn’t do.

The law provides a financial incentive to states that require their schools to (a) stock non-designated epinephrine (i.e., epinephrine not prescribed to a specific student) and (b) provide training for staff in how to use an epinephrine auto-injector. It does not require schools to stock epinephrine. The governance of schools has traditionally been a state and local issue, and so Congress is reluctant to mandate requirements. This incentive approach (rather than a mandate) is used commonly in Congress in other laws affecting state and local issues.

So what does the federal legislation mean for your school? It means that the presence of stock epinephrine in your school is still determined by your state legislature and your local school authorities. The federal government has simply offered a financial incentive for these entities to require the measures noted above.

Currently, only four states – Maryland, Nebraska, Nevada and Virginia – require their schools to stock epinephrine. They are the only states that are eligible for the federal incentive. While another 26 states have laws or guidelines in place allowing schools to stock epinephrine, they are not eligible for the federal incentive. In those states, the burden is on local school authorities.  They have been given permission to stock epinephrine. They now need to acquire the epinephrine and train personnel on administration. Frequently, that means the burden is on food allergy advocates to educate, motivate and assist their local schools in making it happen.

Certainly it’s FARE’s hope that the Act will serve as the catalyst for states to recognize the need, not only to allow schools to stock epinephrine, but to require that this important medication be available to all students, and to ensure that a variety of personnel are trained to administer it.

At the end of the day, it is parents and supportive school staff that will make sure our kids have the protection they need – but this new federal law and sound state and local policies will strengthen their hands and safeguard even more children.

Common Questions & Answers

Does the passage of this law mean that schools will now be required to have “stock” epinephrine?
No. The School Access to Emergency Epinephrine Act only provides an incentive to states that require their schools to provide stock epinephrine. It is up to the individual states to determine if they require or simply allow their schools to stock epinephrine. Only states that require it will be eligible for the federal incentive.

What is the incentive?
States that require their schools to stock epinephrine will be given a preference in the eligibility for asthma education grants. These grants were funded at about $22 million nationally in 2013.

How many states require their schools have stock epinephrine?
Currently, there are 30 states that have laws or guidelines that allow schools to stock epinephrine. But only four of these – Maryland, Nebraska, Nevada and Virginia – require their schools to have stock epinephrine. The other 26 are permissive, allowing or authorizing local school districts to acquire and stock epinephrine.

Couldn’t the federal government just require that all states have stock epinephrine?
Schools are generally governed at the state and local level, and “unfunded mandates” by the federal government are unlikely to win much support in Congress. The strategy of this Act is to provide an incentive to states by providing additional federal funding.

Does the bill provide for incentives for training?
In order to be eligible for the federal incentive, states have to require their schools to stock epinephrine and authorize trained personnel to administer it.

Is there liability protection for school personnel who might administer the stock epinephrine in an emergency?
Liability law is most often governed at the state and local level.  Accordingly, the Act requires that the state Attorney General certify that there are sufficient liability protections for school personnel in those circumstances.

What is the next step in making sure that schools have stock epinephrine?
For those 20 states that currently do not have any stock epinephrine law on their books, the federal Act offers a powerful incentive to pass their own legislation.

For those 26 states that “allow” for the stocking of epinephrine – but don’t require it – it offers an incentive to revisit the question and give parents, children and school personnel the reassurance of safety. In the meantime, school districts and authorities in those states should take advantage of their state authorization to adopt policies to acquire, stock and train appropriate school personnel on epinephrine.

If stock epinephrine is allowed in my state, what are the next steps?

Since most state statutes authorizing stock epinephrine defer to local education authorities, the policy and process of acquiring, maintaining and training is left to local school boards or individual schools. The first step for a parent or advocate would be to alert school authorities to their ability to provide this security. They may need help developing procedures, identifying a physician who can write a prescription, identifying training resources and securing the epinephrine auto-injectors, which can currently be secured free in the first year through the EpiPen4Schools program.

How do I get a physician to write the prescription?
Each state has its own policy guidance for allowing physicians to write a script for a non-designated epinephrine prescription. The schools’ authorities should be familiar with that provision and the guidance it provides. Allergists who can write a prescription can be found through the American Academy of Allergy Asthma & Immunology – Find An Allergist service.

FARE Kids Who Care: Charlie Porter

charlieOne of our key advocacy initiatives this year involves expanding the availability of epinephrine auto-injectors in schools. More than 20 states already have laws or guidelines in place allowing schools to have on hand “stock” epinephrine, which is not prescribed to a specific student, but can be used for any student or staff member in an anaphylactic emergency.

Washington state joined that group in April with the help of Charlie Porter and his mother Sally.

Charlie is allergic to peanuts, soy and peas; Sally is the Food Allergy Chair of her school’s PTA and a tireless food allergy advocate. Sally worked with State Sen. Mark Mullet to help pass the new legislation in Washington, which will greatly increase schools’ ability to provide life-saving medication for students.

Charlie did his part by bravely testifying before the state legislature, talking to the legislators about food allergies and demonstrating how to use an auto-injector. On May 16, 2013, Gov. Jay Inslee signed the bill into law at a ceremony at his office in Olympia.

We talked to Charlie about what it was like to advocate for this law:

What’s it like having food allergies?

It can be hard because people say I am missing out on peanut candy like Snickers.

How did you get involved with the stock epinephrine law in Washington? Why was it was important to you?

Because my mom was one of the people who helped make this law. My mom thought I should get involved. I heard stories about how kids died from food allergies and I didn’t want that to happen anymore. Everyone should be safe in school.

What was it like to talk in front of the state legislature?

I was very nervous. I didn’t know if I was saying the right things. It was my first time speaking in front of very important people. They were all very nice and they clapped for me. When they talked about it on the House Floor, one representative said, “If a nine-year-old can do it, anyone can.”

I really like the law we worked on – we worked hard. It was really fun to be there and see the governor sign it into law.  He even said my name to the cameras. It is a moment I will never forget.

Do you think other kids could do the same thing? What would your advice be to them?

Yes, I think other kids could do it easily. I would tell them, “Don’t be nervous – It’ll be great! Practice with someone you trust and remember what you practice.”

Thank you to Charlie and Sally for their hard work in passing this important bill in Washington!

Just two weeks ago on May 22, 2013, the federal School Access to Emergency Epinephrine Act (H.R. 2094) was reintroduced into Congress. This bill encourages states to adopt laws requiring schools to have on hand “stock” epinephrine auto-injectors. It’s now critical to build support for federal legislation, whether or not your state has already passed a bill. Please contact your U.S. Representative and urge them to support this important legislation!

For information on how to contact your U.S. representative about the H.R. 2094 bill, please visit our website.