Feature article: A brief overview and discussion about the administration of epilepsy "rescue medication" in schools, colleges, camps and other public settings
If you have a child who is attending school, college or camps or you are an adult attending college, it is important to read this article. For our March newsletter issue we are very fortunate to have invited writer, Cindy Fine, who generously agreed to research and write up an overview of what can be a very concerning, confusing, and frustrating topic. Cindy Fine is the mother of a 27-year-old daughter who experienced frequent seizures as a young child and is at risk of prolonged seizures in the event of illness. She was a tax attorney for 15 years after finishing law school, took a decade off from work to care for her daughter, and returned to part-time work doing legal research and writing for the Education Law Center, a nonprofit organization in Newark, NJ
Epilepsy "rescue medications" are designed to stop an ongoing seizure that has lasted for an extended period of time (usually more than five minutes) or an episode of acute repetitive seizures (known as seizure clusters). While these medications are designed to be used by laypersons such as family members, the exact instructions for use of these medications in a given person is prescribed by the person’s doctor.
The best-known rescue medication is Diastat (and its generic equivalents), a rectally administered medication approved by the FDA in the 1990s. Two additional rescue medications were approved by the FDA in recent years: Nayzilam in 2019, and Valtoco in 2020. These newer medications have the advantage of nasal, as opposed to rectal, administration. All three medications are designed to allow non-medical persons to provide potentially lifesaving assistance to a person experiencing a seizure without the dangerous delays that may occur when emergency ("911") assistance is called. As such, these medications are critical to the safety of individuals prone to severe seizures and to the quality of life of these individuals and their loved ones. Some complications may arise, however, when in a public setting or institution.
Rescue Medications in Public Schools
In the public-school setting, an important question is who may administer rescue medications for seizures: must these medications be administered by a licensed nurse, or may nonmedical school staff be trained to administer these medications? The answer to this question varies by state. While some states, such as California, have enacted specific legislation allowing trained volunteers within the school to administer emergency seizure medication (including rectal Diastat (when the school lacks a nurse, or the nurse is not available), current practice within other states is to allow administration only by a nurse. In some rural areas where a nurse is not present in every school, practicalities dictate that non-medical staff be trained to administer emergency seizure medications.
As of the date of this Newsletter, a bill is pending In New York State which would allow trained individuals other than a nurse to administer nasal emergency seizure medications. Similar legislation has been recently proposed in the New Jersey, allowing unlicensed individuals to administer the nasal forms of rescue medication, plus oxygen, when the nurse is not available at the scene of a seizure emergency. Advocates for allowing nonmedical staff to administer emergency seizure medications argue that student safety is compromised without immediate access to these potentially life-saving medications. They also argue that allowing nonmedical staff to administer emergency seizure medications would, moreover, make these rules consistent with existing rules allowing nonmedical staff to administer potentially lifesaving medications to students with diabetes and severe allergies. The Epilepsy Foundation is actively engaged in advocacy in this area.
Note: the above discussion pertains to students in public school through high school (some students with more severe disabilities may remain in high school through age 21 under the Individuals with Disabilities Education Act, or "IDEA.")
Rescue Medications in Colleges and Universities
In the college and university setting, students with disabilities are entitled to accommodations, but the robust supports (such as 1:1 aides or nurses) mandated by IDEA through high school do not apply. The sheer size of college and university campuses also calls for a different analysis when considering the administration of rescue medications.
On a practical level, it is important for college and university students to develop a plan for administration of emergency seizure medications. Nasal medications are intended to be carried with the person to whom the medication was prescribed so that they are readily available in case of emergency. The college or university office serving students with disabilities should be contacted in advance to discuss this issue, possibly even before a student makes a decision about which school to attend.
Rescue Medications in other Public Settings
While the issue in public schools is who will administer rescue medications to a student having a seizure emergency, the issue in public settings such as private daycare centers, camps, and recreational programs is whether the staff at such a setting will administer emergency seizure medications at all or will resort to calling "911." The refusal to administer rescue medications may make it too dangerous for a person prone to extended seizures to participate.
In a 2016 case, United States v. Northern Illinois Special Recreation Association, a public recreational program for people with disabilities changed its policy so that program staff could no longer administer Diastat to participants. (The program did allow a family member or personal aide to administer Diastat and offered discounted fees if this option were selected.) Attorneys from the US Justice Department, Civil Rights Division, among others, took the position that the failure of the program to administer Diastat constituted illegal discrimination against a participant with epilepsy under the Americans with Disabilities Act (ADA), arguing that the administration of Diastat was a "reasonable accommodation" required by the ADA. The Justice Department argued that the administration of Diastat was equivalent to the use of Epi-pens and gastro-feeding tubes, two functions which program staff did provide to participants. The court disagreed and refused to order program staff to administer Diastat. Factors which influenced the court’s decision were: (1) the fact that most staff at the program were "part-time time high school and college aged students," (2) the difficulty of administering Diastat compared with gastro-feeding (in which time is not of the essence) and administration of Epi-pens (which can be injected through clothing), and (3) the manufacturer’s cautionary instructions for Diastat, which indicate direct communication and agreement between prescribing physician and caregiver. While court’s decision was disappointing, the opinion states that the outcome might have been different "had the government presented statistics on how a Diastat program under similar circumstances has been successful," leaving open the door to future favorable rulings.
Importantly, the 2016 decision in United States v. Northern Illinois Special Recreation Association was issued before nasal rescue medications were approved by the FDA. Reading the decision carefully, one can imagine that a favorable result will occur in a future case analyzing a request to administer nasal rescue medications for seizures. As noted above, proposed New York and New Jersey legislation allowing nonmedical personnel to administer rescue medications in public schools apply to nasal, but not rectal, rescue medications. It may be that the advances in science which led to the approval of nasal rescue medications will eventually produce positive outcomes in both litigation and legislation.
References and Resources:
Rescue Medications in Public Schools:
California Seizure Safe Schools Act, Cal. Educ. Code § 49468- 49468.5.
Proposed New York legislation allowing administration of nasal rescue medications by trained, unlicensed school personnel where a licensed health professional is not available: https://www.nysenate.gov/legislation/bills/2023/S3129 (2023-2024 legislative session).
Proposed New Jersey legislation allowing administration of nasal rescue medications and oxygen by trained nonmedical staff in schools: Assembly Bill 4290 (introduced June 16, 2022) - https://pub.njleg.state.nj.us/Bills/2022/A4500/4290_I1.PDF (2022-2023 regular session).
Letter of Opposition from New York Association of School Nurses: https://nysasn.org/index.php/act-now-letter-of-opposition/.
Discussion of Diastat Delegation: https://allnurses.com/diastat-delegation-t592879/#:~:text=in%20NY%20Schools%20Diastat%20can%20only%20be%20administered,Diastat%20is%20kept%20locked%20in%20my%20office.%20schooldistrictnurse.
Epilepsy Foundation Advocacy: Seizure Safe Schools: https://www.epilepsy.com/advocacy/priorities/seizure-safe-schools.
Rescue Medications in Colleges and Universities:
Personal services not required under Americans with Disabilities Act (ADA) Titles ll and lll or Rehabilitation Act of 1973:
Auxiliary Aids and Services for Postsecondary Students with Disabilities, https://www2.ed.gov/about/offices/list/ocr/docs/auxaids.html.
28 C.F.R. §§ 35.135 and 36.306 (Regulations under ADA).
45 C.F.R. § 84.44 (Regulations under Section 504).
Rescue Medications in other Public Settings:
United States v. Northern Illinois Special Recreation Association (March 2, 2016).
Epilepsy Foundation Resources for Attorneys – Administration of Rescue Medications in Child Care/ Camps/ Recreation Programs: https://www.epilepsy.com/legal-help/attorney-resources/child-care-programs (Note: these materials have apparently not been updated since 2012 but are still of use).
Legal Rights of Children with Epilepsy in School and Child Care: An Advocate’s Manual (2011), https://www.epilepsy.com/sites/default/files/atoms/files/Legal%20Rights%20of%20Children%20with%20Epilepsy%20in%20School%20and%20Child%20Care.pdf.
* Image courtesy of Neurelis
