A 504 plan is a blueprint for how the school will support a student with a disability and remove barriers to learning. The goal is to give the student equal access at school, learn amongst their peers in a regular classroom and prevent discrimination by providing them with the services, accommodations, or educational aids they might need.

Students with autoimmune encephalitis can face social and academic hurdles due to the wide range of symptoms and impairments they experience.  Parents can take advantage of a federal civil rights law, Section 504 of the Rehabilitation Act to help ensure their children’s special needs are met.

Section 504 of the U.S. Rehabilitation Act of 1973 is designed to help parents of students with physical or mental impairments in public schools, or publicly funded private schools, work with educators to design customized educational plans. These 504 plans legally ensure that students will be treated fairly and thrive at school. 504 plans aren’t part of special education. So, they’re different from IEPs. 504 plans and IEPs are covered by different laws and work in different ways.

Students can qualify for 504 plans if they have physical or mental impairments that affect or limit any of their abilities to:

• walk, breathe, eat, or sleep
• communicate, see, hear, or speak
• read, concentrate, think, or learn
• stand, bend, lift, or work

One way 504 plans address challenges is through accommodations. Accommodations address specific challenges. Accommodations don’t change what students learn, just how they learn it. The goal is to remove barriers and give students access to learning.

Examples of accommodations in 504 plans include:

• preferential seating
• extended time on tests and assignments
• reduced homework or classwork
• verbal, visual, or technology aids
• modified textbooks or audio-video materials
• behavior management support
• adjusted class schedules or grading
• verbal testing
• excused lateness, absence, or missed classwork
• pre-approved nurse’s office visits and accompaniment to visits
• occupational or physical therapy

When a student isn’t benefiting from instruction due to a physical and/or cognitive impairment from autoimmune encephalitis, a 504 plan should be considered. The issue can be raised by a parent or legal guardian, teacher, physician, or therapist.

A 504 plan can help when a student returns to school after their hospitalization and onset from autoimmune encephalitis and needs extra services to succeed academically. Once an educational concern is raised, the school principal or other academic advisor sets up a meeting for the 504-planning team. The team usually consists of parents, the principal, classroom teachers, and other school personnel (such as the school nurse, guidance counselor, psychologist, or social worker).

After reviewing academic and medical records and interviewing the student and parents, the 504 team determines if the child is eligible to have a 504-plan put in place.

The 504-plan should be reviewed at least once a year to determine if the accommodations are up to date and appropriate, based on the student’s needs. Any 504-plan team member, including the parent, may call for a 504-plan review meeting at any time if there is an educational concern or change in the student’s needs.

General Template Letter Requesting a 504-planning Meeting

To whom it may concern:

This letter is regarding (insert name and DOB here.) I am requesting a 504-planning meeting be scheduled at your team’s earliest opportunity. As you know (name) has been diagnosed with autoimmune encephalitis (AE). Encephalitis is inflammation of the brain. Autoimmune encephalitis is when a child’s own body creates antibodies that attack the brain and cause inflammation. While AE is treatable, treatment can last for a long time and recovery is often slow. Children can be left with cognitive deficits that can affect their ability to function in school without appropriate accommodations.

Common symptoms of AE can include: anxiety, agitation, difficulty forming memories, difficulty processing and retrieving information, uncontrolled body movements or tics, and decreased language output and comprehension. They can also suffer from difficulty concentrating, maintaining prolonged attention, executive function deficits, impulsivity, and other potentially disruptive behaviors. It is critical that teachers and school administrators understand that the above symptoms are not the child’s fault and that the child has little control over these behaviors. These deficits can be extremely troubling for students and appropriate accommodations and reassurance can help prevent long-term effects of decreased self-esteem. We know that neuroplasticity can occur throughout childhood. Proper emotional support can create the most optimal learning environment for children with AE or in recovery from AE. Each case of AE is unique and individualized learning is critical to maximizing the educational and developmental potential of each child.

(Name) was diagnosed with (type example anti-NMDA, sero-negative) AE in DATE. He/She/They received treatment with (insert past treatment or current treatment plan) from DATES. He/She/Their is closely followed by her pediatric neurologist, (Insert MD here and/or other supportive services) with his/her/their most recent appointment being on DATE. NAME is currently continuing to struggle with (insert symptoms here) He/Her/Theirs family has been working closely with him/her/they and will require support and accommodations from the school to help maximize NAME’S recovery and his/her/their educational potential. It is essential that all of NAME’S teachers understand his/her/their current deficits are not his/her/their fault and are not something he/she/they has/have control over. He/She/They does/do not intentionally forget assignments or not follow directions immediately. These behaviors are indicative of residual deficits from AE. We are hopeful that we will continue to see clinical improvement, however, NAME must be supported during this time. It is crucial to provide a supportive environment where he/she/they can grow and flourish without negative effects on self-efficacy and self-esteem. Children with AE can have fluctuations in their abilities. There will be good days and more challenging days or perhaps even hours. Fatigability is common, and classes taught later in the day may be more challenging, 

1. General recommended Accommodations:

Limit assignments to single-sided papers

A separate and quiet space to take tests or written graded assignments

Extended time on all exams

Frequent prompts and cues to help redirect attention when needed

Short breaks (3-5 minutes) as needed throughout the day or for test taking in a safe and calm space

Preferential seating away from noise and distracting stimuli. She/He/They should also be towards the front of the classroom within the visual field of any learning materials.

Previewing classroom materials in advance of the lesson plan.

2. Teacher check-ins: Teacher check-ins where (name) is taught to show his/her/their work at set intervals throughout the lesson. NAME can be asked to do a few problems and then bring his/her/their work to the teacher, which will help him/her/them learn to approach the work in a step-wise fashion. NAME’S teachers should be encouraged to provide immediate reinforcement of completed work (not limited to correct answers) and then reinforce what the next task is. By providing direct instructions to work for short periods of time, and then reinforcing them with NAME with the completion of each block of work, he/she/they will be able to better handle the classroom demands and stay more on task efficiently.
3. Repetition and/or clarification and/or demonstration of directions as needed. When giving NAME verbal instructions, asking him/her/they to repeat what he/she/they have heard will be a helpful way to ensure that the information presented was both attended to and comprehended appropriately. Teaching him/her/they to check what he/she/they understand will assist with learning strategies to better manage difficulties with attention and comprehension. The goal is that with time these “checks” will become more automatic.
4. Separate test taking. Ensure NAME has a quiet environment in which to take exams. Children with AE and in recovery from AE are more susceptible to noise distraction or other sensory distractions and this can impede their ability to perform at their best level. A quiet setting can help filter out these distracting sensory inputs.
5. Extended time on tests. Allowing NAME double time on tests is recommended to help him/her/they complete the assignment in the allotted time. NAME is at risk for slow response time and “drifting off” without ongoing oversight and may have difficulty working quickly to complete the assignment.
6. Breaks during testing. NAME’S attention difficulties may interfere with his/her/their ability to sustain attention over the course of examinations. As such, offering a break or breaks during the test administration is recommended.

These services and accommodations are critical to helping (NAME) meet his/her/their developmental and educational milestones. Please feel free to reach out with questions or need for clarification.

*IAES is grateful to Pediatrician, Dr. Deena Blanchard, for writing this very helpful general template letter requesting a 504 planning meeting.