Clark County School District Procedures/Guidelines for Managing Potentially Life-Threatening Allergies

Thank you to Dana and Duane Gordin, Principal Paula Naegle, and other parties that put so much hard work into making the CCSD Guidelines for Potentially Life-Threatening Allergies a reality.  These guidelines were 2 years in the making and made possible with support from the Food Allergy Guidelines Committee Members, key leaders of CCSD including the Board of Trustees and Superintendent, Food Allergy Research & Education (FARE), and those who participated in the Nevada FAAN/FARE walk in previous years.  The guidelines I’ve linked to below are the product of a FAAN/FARE walk grant and with Dana’s permission, I wanted to make the resource available here for download:

2014 CCSD Food Allergy Manual (pdf download) “Clark County School District Procedures/Guidelines for Managing Potentially Life-Threatening Allergies”

A copy has been sent to schools in Clark County (the district was ranked the 5th largest in the nation in 2012) as well as to local allergists.  The guidelines are 79 pages and cover everything from classroom activities to food service and laws of note.

Some highlights as I look through the document and am encouraged about the guidance Southern Nevada teachers, nurses, and other school employees receive:

  • “The emotional, as well as the physical, needs of the child must be respected.” – pg. 7
  • “Avoidance is the key to preventing a reaction.” – pg. 9
  • “Remember, students with food allergies are children, first and foremost. Do not ask them if it is acceptable to deviate from any of their individual plans. Be aware of signs of anxiety or bullying.” – pg. 11
  • Avoidance Measures for Insect Venom/Stings Allergic Reactions – pg. 13 (tips new to me included avoiding wearing blue and yellow or floral clothing and ensuring garbage is properly covered and away from play areas)
  • CCSD Regulation 5150 covers self carrying medications while CCSD Regulation 5157 covers nutrition concerns.
  • Page 24 has a school nurse checklist that would be handy for any parent meeting with a school’s nurse at the start of the school year.
  • Page 32 has a parent checklist for a school nurse to provide to a parent
  • “Every single person plays an important role in preventing food-allergic reactions, including the child with the food allergies.” – pg. 34
  • Page 35 has a teacher checklist.
  • “The student must not be required to wipe down his/her own area prior to eating to avoid accidental exposure to or ingestion of allergens.” – pg. 37
  • Page 43 includes the recommendation that cleaning supplies be marked specifically so that, say, a mop bucket used when mopping up peanut butter is not later used to clean an area meant to be free of a given student’s allergen. (A great detail I would not have considered.)
peanutfreesanitizer
Photo taken at Principal Naegle’s school in Clark County and included in the Guideline packet
  • Page 57 includes a bus driver checklist.  CCSD guidelines also prohibit eating on the bus (with a diabetes exception of course).
  • Page 62 has a resource regarding reading food labels.
  • Page 63 discusses “Constructive Classroom Rewards” and begins: “Rewarding children in the classroom need not involve candy or other foods that can undermine children’s diets and health and reinforce unhealthful eating habits.”  It concludes with two pages of suggestions of alternative rewards, including everything from privileges to trinkets/tokens.  The recommendations are taken from the Healthy Schools Campaign and adapted from the Center for Science in the Public Interest.
  • Page 73 references epinephrine auto-injectors Adrenaclick, Auvi-Q, and Epi-Pen, which is helpful since school employees may be familiar with one and not others as they go through the process of assisting families and students.

Dana and Duane Gordin are Southern Nevada food allergy advocates that for 5 years worked to direct local food allergy walks (first through FAAN, the Food Allergy Anaphylaxis Network, and then through FARE, Food Allergy Research and Education) in addition to testifying regarding stock epinephrine in Nevada and more.  One thing I didn’t know until I met Dana was that money raised by the national FAAN/FARE organization didn’t just go to funding walk operations and research activities, a small portion is used for local walk grants.  The Gordin family saw the need for training and education here in Clark County and worked hours upon hours to help make it happen.  Their eldest son graduated high school last month and their younger son is in high school so the impact of these guidelines is a wonderful parting gift!

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Updated July 15, 2014 – Debbie Bornilla, who first brought the then-FAAN walk to Las Vegas as a director and co-leader of our local Food Allergy Parent Education Group (FAPE) provided me with the full list of people that contributed to these guidelines.  Thank you all!

Cynthia Alamshaw, Principal
DeAnn Baker, Nurse
Virginia Beck, Director of Food Services
Abby Berhe, Operations Coordinator
Debbie Bornilla, Parent & FAPE Co-Leader
Gina Clowes, Director of Education FARE
Betsy Fuentes, Food Services Coordinator
Eleanor Garrow, VP Ed & Outreach FARE
Doug Geller, Director I of Transportation
Duane & Dana Gordin, Parents & FARE Walk Directors
Michael Harley, Chief Officer Compliance
Vicki Herman, Related Services Coordinator
Sally Jost, Director of Related Services (Committee Lead)
Rod Knowles, Principal
Connie Kratky, Eq. & Diversity Coordinator
Kimberly Krumland, Risk Management Coordinator
Gwen LaFond, Director of Guidance
June Likourinnou, Nurse
Karie Mulkowsky, FARE Grants
Paula Naegle, Principal
Daniel O’Brien, Attorney CCSD Legal
Greta Peay, Director of Eq. & Diversity
Irma Pumphrey, Health Services Coordinator
Roseanne Richards, Instruction Coordinator
Lynn Row, Director of Health Services
Bevelyn Smothers, Principal
Denise Thistlewaite, Director of Instruction
Linnea Westwood, Principal

A Brief in (Semi) Brief – Understanding the Amicus Brief of FARE and COPAA in T.F. vs. Fox Chapel Area School District

I was excited to see that FARE (Food Allergy Research and Education) posted their Amicus Brief recently filed in TF and DF and TSF v. Fox Chapel Area School District for download on their blog.  Speaking with other allergy advocates, many had seen the brief go up but had not had time to read through.  I found it to be a great overview of food allergy accommodations in federally funded schools and had the idea to try to distill the brief into a post in honor of Food Allergy Awareness Week (starting tomorrow, May 11, 2014) here in the United States.  I tried to also cover some questions people may have, like what an Amicus Brief is, and why there are citations to cases as well as parts of the US Code in the brief.

Remember that briefs and settlements are not binding precedent (I see some people cite the Lesley University settlement as binding in other cases) and analysis of food allergies as a disability are a very individualized thing even if we can all agree that food allergies are a disability.  For example, in a private daycare, you could use the Americans With Disabilities Act to seek accommodations for your child but the factors and balancing at play could very well leave you having to look elsewhere for services.  With federal money involved, however, your chances get significantly better.

Generic policy does not meet the requirements for a free, appropriate public education under the law. The major theme is individualized planning, from inputs to process, to outcome. As an aside, for most lawyers there are three answers to any question: Yes, No, and It Depends – individualized case by case planning falls in the third category. As a parent of a child with multiple food allergies and also one aware of the co-existence of other issues unique to each child, I think the brief is a great resource.

Amicus Brief re: TF and DF and TSF v. Fox Chapel Area School District (download the original brief here)

From the caption we can tell the case was initiated by a minor and his parents against a school district. It is on appeal by the parents & child so we can guess that there was an unfavorable aspect of the decision below.  From the FARE Blog:

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. 

Amici Curiae

An “Amicus Brief” is one filed in a case not by anyone that is a party to the dispute but usually by organizations that have a vested interest in the outcome of the case. They can highlight unique impacts on their organization depending on the outcome of the case or just show support. Here, we have FARE (Food Allergy Research and Education) joining with the Council of Parent Attorneys and Advocates to support TF, DF, and TSF.

Table of Contents and Other Introductory Material

If you’ve had experience with your local court system, you may notice the greater formality in a federal brief. Ideally, we should all be well organized in our writing (headings, etc.) but you simply don’t always have time to draft the perfect document in regular motion practice. In other words, don’t hold your divorce attorney to the standard you see when you’re reading a brief like this.

Relevant Statutes and Regulations

They start off with 29 USC (s) 794. This citation tells you the title of the United States Code and the section where the provision quoted is located. The ellipses let you know portions that were perhaps not relevant have been removed. This provision of the US Code states that if you otherwise qualify (so subject to any exceptions that may apply from other laws), if you have a disability in the US, you can’t only because of your disability be excluded from, denied benefits of, or be discriminated against by/through a program or activity that receives federal financial assistance. It goes on to define what a program or activity would be, including educational agencies or a school system. Note that it specifically says in this provision that they have to receive Federal financial assistance. If you’re looking at this brief to apply broadly then you’re out of luck because a private school system would require you to find a different provision, if one exists, to apply to your circumstances.

Many times, the key here is knowing how the court gets jurisdiction on an issue, that is, how do they have the “right to speak” on the topic and bind the parties that come before them. For things to hit Federal Court, one great way is for an issue to be one of Federal Law.

Next up is 34 CFR (s) 104.33. We see that under Title 34 of the Code of Federal Regulations, Section 104.33 we can find the provision cited. Title 34 of the CFR is titled “Education” so that would also clue you in that you could look under that title for related subjects.

When laws are passed, they often set into motion a framework to make rules to apply those laws. So these are rules that are also binding under the law. This particular portion of the CFR states that a recipient of federal assistance operating an education program has to provide “free appropriate public education to each qualified handicapped person” in their area, “regardless of the nature or severity of the person’s handicap.” So we see from this that a school getting federal money can’t turn away a student even if they are handicapped and the accommodation for that handicap may be great. This is different than the American’s With Disabilities Act provision that a private entity that is classed as a “public accommodation,” such as a daycare, won’t have to accommodate a disabled individual if, among other things, it would be unduly burdensome or change the nature of the service they offer. Here, if you’ve got a school that is getting federal assistance they have to take a student on and figure out how to make it work so that their education is still free to the family and appropriate.

A subsection goes on to point out that “appropriate education” is defined to include any special services and aids to meet the person’s needs “as adequately as…” the needs of people non-handicapped person. There are more provisions about how to determine the placement procedures for a handicapped individual.

Title 34 of the Code of Federal Regulations, section 104.36 is an additional rule that provides for procedural safeguards, notice, opportunity for parents to examine records, a review procedure, and an impartial hearing with participation of the child’s parents.

Statements of Interest

This section details the resume of FARE and their focus on research and allergy education and is interested in the case because of a belief that “students with the disability of a severe food allergy have the right to individualized plans that ensures their access to education and safety while in schools.”

The Council of Parent Attorneys and Advocates is described as a nonprofit organization for parents of children with disability and those that advocate for them. They assist counsel for families on disability law.

Argument

The Importance of Protecting Students with the Hidden Disability of a Severe Food Allergy

Pretty much general statistics here, ones advocates are all too familiar with. Some that were new to me:
– Over 160 foods can cause severe food allergy reactions
– The Food Allergen Labeling and Consumer Protection Act also requires federal agencies like the CDC to monitor and research “the growing prevalence of food allergy.”
– Peanuts and Tree Nuts account for 50-62% of reactions and 15-30% of the fatal/near fatal reactions in emergency rooms.

Schools are Required to Develop Individualized (s) 504 Plans to Ensure a FAPE for Students with Disabilities

Before section 504 of the Rehabilitation Act of 1973, discrimination regarding disability was viewed by Congress as careless, not intentional. Now, under a section 504 claim, a student has to prove:

“(1) he is ‘disabled’ under the meaning of this Act;
(2) he is ‘otherwise qualified’ to participate in school activities;
(3) the school or the board of education receives federal financial assistance; and
(4) he was excluded from participation in, denied the benefits of, or subject to discrimination at, the school.”

Ridgewood Bd. Of Educ. v. N.E. ex rel., 172 F.3d 238, 253 (3rd Cir. 1999).

FAPE, or “free appropriate public education” (and individualized needs) to students with a disability so that they can participate in education. The protections of section 504 are procedural and include extracurricular activities as well with a mind to meaningfulness for the student with a disability.

The two procedural safeguards are that a person that is “knowledgeable about the child” to be part of the group evaluating their placement and that guardians have notice and opportunity to see the records informing decisions about placement.

An IEP may be needed, or a 504 plan, depending on the circumstances and even if other provisions are in place for the student.

The Court Should Require Schools to Develop Individualized 504 Plans for Students With the Hidden Disability of a Severe Food Allergy

A school can’t simply decide on a policy for all students with food allergy, they have to adjust to each unique circumstance with parental and expert involvement.

In 2011 the Food Allergy & Anaphylaxis Management Act (FAAMA) was passed by Congress to require national guidelines to assist implementation of plans for individuals to manage food allergy and anaphylaxis risks in schools. The individualized mandate appears again and again.

The brief is requesting that the court rule that 504 and IEP plans be individualized based on the regulations, case law, and United States Code. Schools can’t bypass families and administer a generalized policy if the court rules that individualization is the “minimal bright line rule.”

Components would include individualized accommodation for meaningful participation at school as well as an emergency care plan specific to the student. The factors requested for consideration are (1) medical history, (2) type and severity of allergy, (3) number of allergies, (4) atopic conditions, (5) mental health, age, and maturity, (6) any developmental or learning disabilities, (7) past bullying and harassment, (8) school nurse presence or absence, and (9) transportation needs.

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Special thanks to Laurel Francoeur and Kim Pebley for the encouragement to drive this post forward.  I hope it is of use.  Special thanks also to my daughter’s teacher and her school, she is wrapping up her kindergarten year in the next month and we are truly lucky for the support and compassion of the staff, students, and other families when it comes to keeping her safe.

Also, check out our latest post over at FABlogCon.com, our Mother’s Day gift/Food Allergy Awareness Week contribution of a video session from last year’s conference entitled “Facing Adversity With a Smile.”  I make a teary appearance but to those that know me that isn’t a surprise.  I can argue cases just fine but when it comes to food allergies I get very emotional!   

Starting School in Earnest, Earnestly

I’ve never felt like I’ve particularly “held it together” but some friends were remarking this weekend that I had to have a cape at home and to that I would say appearances are deceiving.  Especially in the blog world where we pick the best picture from several or edit and curate and edit some more.  I don’t think that in each specific circumstance what one writes is inauthentic as a blogger, just that our lives can appear outwardly like the best of ourselves.

I love the online food allergy community and the support we all give one another but it makes an already constant presence (food allergies) infuse even more into my daily life.  Reading labels has become second nature so it takes up less time but the time I spend online thinking about food allergies remains the same.  I guess I’m mentioning this because I have increasingly written about advocacy on this blog and I don’t want it to seem like I know what I’m doing.  I’m muddling along and this new phase, kindergarten, is putting me to the test.

On Monday I was invited to my daughter’s school to give a presentation to 25 or so staff members about food allergies.  The school nurse introduced me and mentioned Nevada’s epinephrine mandate.  Then it was my turn to speak.  I was asked how to make other students a part of the team, so to speak, in keeping students safe that have food allergies.  I was asked what my daughter thinks of “all of this.”  I was asked about airborne allergen risks.  And “may contain” warnings.

I speak in public all the time professionally but am finding that food allergies are so intensely personal that my near constant anxiety feeds into even positive advocacy experiences.  While I waited for my scheduled presentation I heard my phone chime again and again as it does during the workday with emails from parties, opposing counsel, clients, and more.  I knew that I would rather focus on reviewing the FARE action plans (FARE FAAECP August 2013) I had printed off to distribute to my audience but I felt the dread creeping in about the unfinished work and snuck outside to return a phone call.  I didn’t want to, and yet I thought it might calm my nerves about my presentation.  It didn’t, but as usual once I started I think I did fine.

As I went up to speak, my daughter’s kindergarten teacher smiled encouragingly at me.  It meant a lot that she and the school nurse are on the frontline of our support network at school because the fact that their kindness and goodness are directed to my daughter means that I am a part of something kind and good.

As an aside, it makes me wonder if there’s a self serving component to service.  Do I help because of someone I aspire to be?  Is it all just a part of my tendency to mediate and accommodate at every turn?

I told the audience that my daughter thinks food allergies suck (my word, not hers).  I told them that she just wants to be like other children.  I told them I have never explicitly told her that one can die from an allergic reaction but that she knows it can affect breathing and that we need to breathe to live so she probably already knows what that means.

I also told them that kids are compassionate.  That classmates will want to help keep friends safe and that in my experience I find adults are the resistant ones.  I by no means was up there advocating food bans, just how to recognize a reaction and what to do, as well as hidden allergens such as those that remain on surfaces or that hand sanitizer has no effect on.  I mentioned the remarks of adults online that were harsh and cruel to kids with food allergies and there was a collective gasp.  I usually try to stay positive but I wanted them to know that there was a negative side.

I think I scared them a little with the idea that even adults can suddenly experience an allergic reaction where there was none before.  I also spoke about some of the more recent deaths.  I just wanted to drive home that safeguards and protective measures are for the benefit of all.  That knowing what to do in an emergency will help.  And I also spoke of my responsibilities as a parent.  How parents I know of attend lunch with their children at school to help monitor them.  That I was happy to buy safe snacks for classes, to provide idea lists, to answer their questions.

Cartoon Courtesy of FoodAllergyFun.com
Cartoon Courtesy of FoodAllergyFun.com

I also shared the cartoon above and the whole room erupted in laughter.  Thank you so much to Tiffany Glass Ferreira for the awesome resource she provides with her insightful work.

Speaking of saying thank you, my sister in law teaches third grade and I asked her how to approach this particular group of teachers.  She gave me some wonderful advice that I wanted to share in part here as the school year starts around the country:

I had a parent train me in using her kindergarten daughter’s epi-pen […s]he was very calm and matter-of-fact. She showed me how to use it and we talked about when to use it. She told me that even though there could be side effects it was best to err on the side of injecting vs. not injecting if [the student] started having trouble breathing (and a few other signs [the student] had). It was sort of a “you’ll know it when you see it and don’t hesitate” sort of thing. She told me that overthinking whether or not to inject was a waste of valuable time and it was better to inject and find out it wasn’t necessary than to NOT inject and have [the student] become unconscious, it was better to get the medicine in her and the sooner the better. […]

So l guess just stick to the facts. What are the signs that something’s wrong, how to use the epi properly, and what to do next (call 911, call family). It might also be a good idea to give the staff permission to give the other kids a heads-up or at least let them know what to do if something happens on the playground. […] a general sort of “If something happens or someone falls down on the playground make sure you tell a teacher”. There is always playground supervision, but I know too well (and I’ve done it myself), that when you get 5-6 teachers on duty they tend to drift together to chat instead of keeping an eagle eye on the kids. […]

Their ultimate goal is to keep her safe and happy and learning at school, so I don’t think you’re going to meet much resistance or have anybody be disrespectful or anything. A lot of them are probably parents, too. Make sure you thank them for their time…if you’re doing a whole staff training then they are most likely staying after school or losing prep time of some sort.

Remember that while you have one baby going to school, they have hundreds of babies. See if you can phrase things in a way that suggests setting things up to protect all of the students. There is bound to be at least one other child with food allergies on campus, maybe undiagnosed. Knowing what signs to look for might save another child’s life, too.

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Re-reading my sister in law’s advice reminded me that after my presentation I had an audience member come up and tell me she wanted to give me a little hope for the future.  She certainly had my attention at this point and she told me about how her children, now young adults, had grown out of multiple food allergies and that it was possible.  Connecting with people on that level gives me a boost I need to forge along and continue sharing.

This is my 250th post!  I wanted to share a link to my fundraising efforts for the Las Vegas 2013 FARE walk (click here to donate).  FARE has been instrumental in so much involving schools in Southern Nevada and around the country.  I’ll be at the walk and at the Food Allergy Bloggers Conference that weekend as well.