The Shaping of Seizure Safe Schools Across the Country: An Exploration of Grassroots Advocacy, Legislative Action, and the Future for Students with Epilepsy and Other Seizure Disorders.

By Mallie Brocato

Introduction

Epilepsy is one of the most common neurological disorders in the world.[1] School-aged children are among the most affected, with about six in every thousand students across the country developing epilepsy at some point in their lifetime.[2] Like any other disorder, it is imperative that schools—who see these children for eight hours per day, five days per week, nine months of the year—are properly trained to care for affected students if there is an emergency. The push for proper training centers on a campaign for Seizure Safe Schools nationwide.

This paper examines the development and significance of such Seizure Safe School laws, which aim to create a standardized approach to managing seizures in educational settings. It delves into the role of local advocates, whose personal experiences and grassroots efforts have been pivotal in driving legislative change. By analyzing the key components of Seizure Safe School laws and evaluating their implementation and impact, this paper underscores the ongoing need for comprehensive protections for students with epilepsy and ensures that the movement's momentum translates into meaningful, widespread change.

I.         Local Advocacy at the Heart of the Seizure Safe Schools Movement

           While an epilepsy diagnosis does not generally affect a child’s ability to function in school,[3]it is imperative that protocol exists in the event that a child has a seizure. Without proper training and procedures, school personnel may struggle to respond effectively. Concerns over training have fueled the grassroots movement for Seizure Safe School laws.

Local advocates, many of whom have epilepsy themselves or are parents of children with epilepsy, have long been the driving force behind this movement. For years, they have fought to protect children in school environments, recognizing that proper training for staff and clear emergency action plans are essential for preventing tragedies.

In Texas, Samantha Watkins' story served as a key driver for change. Sam, an 18-year-old high school student from Kilgore, Texas, tragically lost her life after having a seizure.[4] After learning of Sam’s story, Shari Dudo, who herself has epilepsy, knew something had to change.[5] As a lifelong teacher, Shari knew that teachers in Texas public schools did not receive seizure response training, and that if a student were to have a seizure, most would not recognize the signs nor know how to respond.[6] This fostered a passion for advocacy, which led her to work closely with Sam’s mother to campaign for the passage of Texas’s Seizure Safe Schools law.[7] Sam’s Law passed in Texas in 2019.[8]

However, Texas was not the first state to pass legislation for seizure safety in schools; Kentucky enacted the Lyndsey Crunk Act in 2018.[9] Lyndsey herself advocated for the law, including testifying before Kentucky’s House Education Committee.[10]

II.        The Epilepsy Foundation’s Role in Going Nationwide

With local advocates laying the groundwork for Seizure Safe School laws, the Epilepsy Foundation entered the arena to push the initiative nationwide.[11] The Foundation’s advocacy culminates in a model bill. There are generally five components to the bill: (1) school personnel must complete seizure recognition and first-aid response training; (2) Seizure Action Plans must be made part of a student’s file and made available for school personnel and volunteers responsible for the student; (3) language requiring any FDA-approved medication prescribed by the treating physician to be administered to the student living with epilepsy when needed; (4) student education and training on epilepsy and first-aid response; and (5) a Good Samaritan clause.[12] These five components aim to provide ample protection to students with epilepsy as well as those who may be in a position of assistance.

According to the Foundation, these laws allow “students living with epilepsy or a seizure disorder [to] feel safe in school, reach their full academic potential, and build meaningful friendships without fear of being stigmatized.”[13] The language of the model bill mandates training so that school personnel can “recognize and respond appropriately and efficiently to the student experiencing a seizure,” including “allowing students to access necessary and oftentimes life-saving medication.[14]

However, it is important to acknowledge the timeline of the model bill and its effectiveness. The Epilepsy Foundation launched its nationwide initiative, including the model bill, in late 2019.[15] At that time, four states had already passed seizure safety legislation: Kentucky, Indiana, Texas, and Illinois.[16] None of these laws incorporate all five components of the model bill. As of today, almost thirty states have enacted legislation–yet Arkansas remains the only state whose law contains all five components.[17]

This is likely the result of these grassroots advocates helping communities apart from their own. Take Shari Dudo, for instance, who has been instrumental in helping others advocate for the legislation in their respective states.[18] Because of such advocacy, state legislatures model the bill after the local advocacy movement rather than what the Foundation pushes for nationally. For example, Colleen Quinn, whose son Paul St. Pierre had recently received an epilepsy diagnosis, was so empowered by Sam’s Law and the story behind it, that she presented a comparable proposal to the New Jersey legislature.[19] Paul’s Law was signed into New Jersey law in January 2020.[20] This also suggests that local advocates may be more successful in influencing state legislation than relying solely on national efforts by the Epilepsy Foundation. 

III.      Looking at Post-Passage Practical Issues

Despite the comprehensive protections outlined in the state legislation, the process of implementation poses a variety of practical challenges. Most of these challenges stem from a lack of accountability measures. A heartbreaking example of this is the death of Jaxson Mendoza, who, despite the passage of Sam’s Law in Texas, did not receive the proper response when he had a seizure.

A.        The Stark Reality that Legislation is Only the First Step

Jaxson, a 14-year-old from Amarillo, Texas, tragically lost his life after suffering a prolonged seizure at school. The seizure lasted approximately 17 minutes[21]; according to his Seizure Action Plan, Jaxson should have been given seizure medication for any seizure lasting longer than five minutes.[22] Under Sam’s Law, school personnel should have been trained to know how and when to act in response to Jaxson’s seizure.[23] Jaxson’s parents have now filed a lawsuit against the school district.[24]

Jaxson’s story highlights the gap between the legal protections afforded by these seizure safety laws and the practical realities of their implementation. While these laws are obviously intended to protect children with epilepsy, their effectiveness hinges on proper training, accountability, and timely action by school staff.

Thus, it is important to address this disconnect between policy and practice. An analysis of Alabama's approach sheds light on the post-passage challenges that often emerge when translating legislation into real-world protections.

B.    Practical Gaps in Alabama’s Seizure Safe Schools Act and How Regulations are Used to Address the Issues

            While accountability concerns are often the easiest to recognize, the language of these laws often comes with underlying issues that may be hard to spot for those unfamiliar with seizure disorders.

Alabama’s Seizure Safe School Act, Ala. Code §§ 16-30C-1-5, became effective in the 2022-2023 school year.[25]Similar to Kentucky’s legislation, Alabama mandates training for school personnel (as well as school nurses), allows the delegation of rescue medication administration, and incorporates a Good Samaritan clause.[26] 

A key provision of the Act is the requirement for students with epilepsy or other seizure disorders to have an individualized Seizure Action Plan. The Plan must be developed by the student’s healthcare provider and submitted to the school[27]; this ensures that school personnel have clear instructions on how to respond to a seizure. However, issues often arise in ensuring that these plans are actually created[28] and effectively communicated across school staff.[29]

However, there are no accountability measures included in the legislation. Thus, the implementation of these requirements may vary widely across school districts. In under-resourced districts, finding the time and personnel to complete this training can present challenges. In an effort of uniformity, the Alabama State Department of Education created the Alabama Health Services Seizure Safe Schools Curriculum, a comprehensive “framework for local school districts to implement the Alabama Seizure Safe Schools Act.”[30]

The Curriculum focuses on the portion of the Act governing Unlicensed Seizure Medication Assistants (USMAs)[31]; its stated purpose is “to provide a standardized, evidence-based training program for the school registered nurse to utilize in training seizure management and medication administration to unlicensed personnel in schools.”[32] USMAs are volunteer school employees who receive specific training to administer seizure medications when delegated by the school nurse.[33] Each school district is required to publish an annual list of their respective USMAs.[34]

However, since USMAs are not mandatory,[35] it is possible that certain schools or districts could have too few or no USMAs available. Is there a way to balance the number? What are schools doing to make sure there are USMAs in schools where there are students with seizure disorders? The concept of USMAs is certainly beneficial, but the idea comes with practical concerns about the adequacy and consistency of its volunteer-based system. How can we bolster the concept to be more beneficial for students?

Another practical issue is whether students are allowed to carry their own seizure rescue medication. Controlled substance laws complicate this matter,[36]as well as state laws and school policies on drug possession. In Alabama, students cannot carry their own medicine unless they have a doctor’s order to self-medicate.[37] The balance between ensuring safety through controlled substance regulations and enabling timely access to life-saving medication is a delicate one that often leaves students and their families navigating complex and potentially restrictive policies.

An additional gap is created by the provision stating “[u]nder no circumstance shall rectal or vaginal suppositories be administered by anyone other than a licensed nurse.”[38] While rectal administration of emergency seizure medication is a standard treatment,[39] the reference to “vaginal suppositories” seems unnecessary, as such is virtually non-existent in the field of epilepsy treatment.[40]

Alabama’s law does not completely prohibit the use of rectal administration but rather prohibits such administration by anyone other than a licensed nurse. What happens if the school nurse is not there? Must nurses prioritize students with the potential for seizure emergencies whose action plans require rectal medication? It is important to recognize that epilepsy is a highly individualized condition and that an administration or medication may not typically be arbitrarily substituted for another.[41]That is why the physician’s seizure response plan, crated based on their experience with the individual patient, is so important. Should physicians be encouraged to prescribe nasally or orally administered medications? What if rectal administration is the only administration that works for the student? The law leaves these questions unanswered. Ultimately, the legislation should defer to the plan that is best suited for the student rather than creating arbitrary barriers that may, in a particular situation, prove to be anything but safe. 

State regulations seemingly fill some of the gaps left in the legislation. In addition to providing comprehensive definitions and time and place requirements for Seizure Action Plans,[42] the regulations govern the tier system for seizure safety training,[43] outlined in the Alabama Health Services Seizure Safe Schools Curriculum.[44] Tier 1 training requires that all school personnel receive annual online training covering the basics of seizure recognition, response, and emergency contacts.[45] Tier 2 focuses on classroom teachers and key staff who “need to know”—these personnel likely work directly with students with epilepsy and receive additional training from school nurses, including training on Seizure Action Plans..[46] In Tier 3, at least one volunteer school staff member must receive specialized training from a licensed nurse on seizure care and administering emergency medications; the training incorporates video instruction, testing, and skill competency assessments.[47]

Beyond these regulations, the Act grants the Alabama Board of Nursing sole authority to adopt rules on the “delegation of limited nursing tasks by licensed nurses to trained, unlicensed assistive personnel and to implement this chapter.”[48]Ultimately, Alabama’s legal framework for seizure safety in schools, while not perfect, is comprehensive in its protections for both students and school staff. The unique elements, such as USMAs, ensure that more personnel are available and trained to respond effectively if a student experiences a seizure at school.

IV.       Continuing a Movement of Necessity

The Seizure Safe Schools movement is not simply a matter of advocacy but a matter of necessity. Reality illustrates the life-and-death consequences of inadequate seizure emergency preparation in schools. That being said, the movement has already made a significant impact, as more than half of U.S. states have now passed some form of Seizure Safe School legislation. While there is no doubt that the Epilepsy Foundation is an important national partner, the heart of the advocacy remains with the local supporters who understand the real-world impact of these laws the most. Moving forward, such advocacy requires a two-pronged approach: enacting the legislation and ensuring effective implementation.

Recently introduced legislation would accomplish just that. U.S. Senator Cory Booker introduced the Seizure Awareness and Preparedness Act on September 17, 2024.[49] While there is a long way to go before passage, the federal legislation builds upon the momentum of the last few years.

Specifically, the Seizure Awareness and Preparedness Act would establish a grant program supporting students with epilepsy and seizure disorders.[50]The grants would be used for funding local educational agencies to train school personnel, creating individualized health care and emergency plans, and for ‘‘recruiting, hiring, and retaining dedicated compliance staff who are responsible for ensuring that all training and program requirements . . . are consistently met.”[51]Key provisions include mandatory training every two years, specific training for bus drivers, and legal protections for school employees.[52] With $34.5 million allocated for 2024 through 2028,[53] this Act would take the Seizure Safe Schools movement national.

Conclusion

Thus, as more states advocate for and pass seizure safe school laws, it is essential to learn from existing legislation to develop the most effective and inclusive policies possible. Balancing legislative success with practical application is key to ensuring safety and comfort at school for students with epilepsy.

[1] Epilepsy, World Health Org. [WHO] (Feb. 7, 2024),  https://www.who.int/news-room/fact-sheets/detail/epilepsy (last visited Sep. 28, 2024).

[2] Epilepsy, CDC Healthy Schs. (Oct. 23, 2023), https://www.cdc.gov/healthyschools/npao/epilepsy.htm (last visited Sep. 28, 2024).

[3] Id.

[4] See Alex Leroux, Bill Honoring Kilgore Student Would Provide Epileptic Response Training in Schools, KLTV (Jan. 7, 2019, 8:45 PM), https://www.kltv.com/2019/01/08/seizure-education-bill-filing-new-legislature/?fbclid=IwY2xjawFau0VleHRuA2FlbQIxMQABHUKBZdZGLIEb_FWN9AjpX0LwPxFKLlp5H9oYYDnoSjjaVFh46dzIvHPcIA_aem_f50ZRkETSeDavzBJlx2u7w(last visited Sept. 28, 2024).

[5] Telephone Interview with Shari Dudo (Aug. 20, 2024).

[6] Id.

[7] Id.

[8] See Alex Leroux & Jeff Wright, Governor Signs ‘Sam’s Law’, Bill Named for Kilgore Student who Suffered Fatal Seizure, KLTV (Jun. 11, 2019, 2:18 PM), https://www.kltv.com/2019/06/11/gov-greg-abbott-signs-sams-law-honor-kilgore-student-who-died-following-seizure/ (last visited Sept. 28, 2024).

[9] See H.B. 147, (Ky. 2018).

[10] Epilepsy Foundation Rolls Out Seizure Safe Schools Initiative Nationwide, Epilepsy Found. (Sept. 14, 2019), https://www.epilepsy.com/stories/epilepsy-foundation-rolls-out-seizure-safe-schools-initiative-nationwide#:~:text=For%20more%20than%20five%20decades,%2D800%2D332%2D1000 (last visited Sept. 28, 2024).

[11] See id. (“As a result of the Lyndsey Crunk Act, the Epilepsy Foundation began working with its network of partners to pilot the initiative in other states.”). Indiana, Texas, and Illinois passed their respective state laws in 2019, and “[t]he Epilepsy Foundation is in the process of working with legislators in many states to draft and introduce bills for 2020 legislative sessions.” Id.

[12] Seizure Safe Schools Position Statement, Epilepsy Found. (2022), https://www.epilepsy.com/sites/default/files/2022-10/Seizure_Safe_Schools_Position_Statement_October2022.pdf.

[13] Seizure Safe School Act: About the Seizure Safe School Legislation, Epilepsy Found., https://samslaw.org/wp-content/uploads/2019/12/Seizure-Safe-School-Stakeholder-PDF-final.pdf.

[14] Id.

[15] See Epilepsy Foundation Rolls Out Seizure Safe Schools Initiative Nationwide, supra note 10.

[16] Id.

[17] See Ark. Code Ann. § 6-18-720; see also Arkansas, Seizure Safe School Act – Status, Epilepsy Found., https://www.epilepsy.com/advocacy/priorities/seizure-safe-schools/arkansas (last visited Sept. 12, 2024) (last visited Sept. 28, 2024).

[18] Telephone Interview, supra note 5.

[19] See Alex Leroux & Jeff Wright, New Jersey Passes ‘Paul’s Law’, Inspired by Similar Texas Law Named After Kilgore Student, KLTV (Jan. 9, 2020, 11:00 PM), https://www.kltv.com/2020/01/09/new-jersey-passes-pauls-law-inspired-by-similar-texas-law-named-after-kilgore-student/ (last visited Sept. 28, 2024).

[20] Id.

[21] See Complaint at 4, ¶ 14, Mendoza v. Amarillo Indep. Sch. Dist., No. 2:24-cv-00169-Z (N.D. Tex. Aug. 9, 2024) (indicating that the information provided in the complaint are factual allegations).

[22] Id. at 13 (Ex. B) (indicating that the information provided in the complaint are factual allegations).

[23] See id. at 4, ¶ 16 (alleging that “the Amarillo ISD refused to implement policies, procedures and practices required to keep Jaxson Mendoza safe . . .”).

[24] See Jamie Burch, Parents Sue Amarillo ISD after School 'Refused' to Give Their Son Seizure Meds, Son Dies, ABC 7 News (Aug. 12, 2024, 3:34 PM), https://abc7amarillo.com/news/local/parents-sue-aisd-after-school-refused-to-give-their-son-seizure-medication-he-died-jaxson-mendoza-amarillo-high-school-epilepsy-504-action-plan-nasal-midazolam (last visited Sept. 28, 2024).

[25] See Ala. Code § 16-30C-2(a).

[26] Id. §§ 16-30C-1-5; Alabama, Seizure Safe Schools – Status, Epilepsy Found., https://www.epilepsy.com/advocacy/priorities/seizure-safe-schools/alabama-hb-76 (last visited Sept. 12, 2024).

[27] Id. § 16-30C-2(b) (last visited Sept. 28, 2024).

[28] Lucretia Long, Epilepsy All. Am., https://www.epilepsyallianceamerica.org/seizure-safety/seizure-action-plan/ (last visited Sept. 28, 2024) (“Seizure Action Plans are meant to guide care in emergencies but are underused. Approximately 70% of persons with epilepsy do not have a Seizure Action Plan.”).  

[29] Seizure Management in Schools, Am. Acad. Ped., https://www.aap.org/en/patient-care/school-health/management-of-chronic-conditions-in-schools/seizure-management-in-schools/ (last updated Apr. 21, 2023) (Schools should “consider school-sponsored activities, field trips, before- and after-school care, and times when a school nurse is not present.”).

[30] Alabama Health Services Safe Schools Seizure Curriculum, Ala. State Dept. Educ. (2022), https://www.alabamaachieves.org/wp-content/uploads/2022/06/PS_2022617_SeizureCurriculum2022_V1.0.pdf at 5 (last visited Sept. 28, 2024) [hereinafter Curriculum]. 

[31] See Ala. Code § 16-30C-3.

[32] See Curriculum, supra note 30.

[33] Id.

[34] See Ala. Code § 16-30C-4(c)(2).

[35] Id. § 16-30C-4(d) (“A school employee shall not be required to serve as an unlicensed medication assistant, nor be subject to any penalty or disciplinary action for refusing to serve as an unlicensed medication assistant.”).

[36] The New Role of the DEA in Epilepsy: Prolonged Evaluation of Anti-Seizure Medications at the DEA, Epilepsy Found. (Mar. 18, 2015), https://www.epilepsy.com/stories/new-role-dea-epilepsy (last visited Sept. 28, 2024) (“Drugs approved by the FDA to treat epilepsy in recent years have often been controlled substances including Lyrica, Vimpat, and Fycompa. When the FDA determines that a drug has a potential for abuse, then it is sent to the DEA for "scheduling" before it is available for use.”).

[37] Medications at School, Baldwin Cnty. Pub. Schs. (2018), https://www.bcbe.org/cms/lib/AL01901374/Centricity/Domain/3526/MedicationsAtSchool.pdf (last visited Sept. 28, 2024) (“To protect all children from taking medication belonging to another child, no child may carry their own medication at school, unless they have been authorized by the physician, parent, and nurse to self-medicate.”).

[38] Ala. Code § 16-30C-4(f).

[39] Diazepam Rectal, Epilepsy Found. (Apr. 4, 2024), https://www.epilepsy.com/tools-resources/seizure-medication-list/diazepam-rectal (last visited Sept. 28, 2024) (“Diazepam rectal gel is approved for use as a rescue medicine in people who have refractory seizures on stable doses of seizure medicines and need intermittent use of diazepam to control bouts of seizures.”).

[40] Currently, the FDA-approved seizure rescue medications are nasal midazolam (Nayzilam), nasal diazepam (Valtoco), and rectal diazepam gel (Diastat). See Patty Obsorne Shafer & Elaine Wirrell, Seizure Rescue Medications, Epilepsy Found. (Aug. 11, 2023), https://www.epilepsy.com/recognition/rescue-medications (last visited Sept. 28, 2024).

[41] Muhammad Atif, Muhammad Azeem & Muhammad Rehan Sarwar, Potential Problems and Recommendations Regarding Substitution of Generic Antiepileptic Drugs: A Systematic Review of Literature 5 SpringerPlus (2016) (“[T]he available literature on epilepsy indicate that substitution of AEDs is problematic . . .”).

[42] See Ala. Admin. Code r. 290-4-5-.05

[43] See id. r. 290-4-5-.06(4).

[44] See generally Curriculum, supra note 30.

[45] Id. at 7.

[46] Id.

[47] Id. at 8.

[48] Ala. Code § 16-30C-4(e).

[49] See Seizure Awareness and Protection Act, S.5065, 118th Cong. (2024).

[50] Id.

[51] Id.

[52] See id.

[53] Id. § 2(f).