How to Get 504 Accommodations for Children With PANDAS
If your child’s PANDAS symptoms are impacting their ability to succeed in school, a 504 accommodations plan may help. We break down everything you need to know to set up accommodations with your child’s school.
One of the chief challenges of PANDAS is how it affects children’s ability to manage during the school day. That includes completing school work both in and out of the classroom. If your child has recently been diagnosed with PANDAS/PANS, you may be overwhelmed caring for their health and medical needs. However, it can be crucial to inform school staff about your child’s illness early on. That way, you can arrange accommodations to help them keep up on their education. Below, we walk through the steps of getting 504 accommodations to help take out some of the stress and confusion.
Many PANDAS symptoms make it incredibly difficult for children to focus throughout the school day. It can also make sitting in a classroom uncomfortable. Anxiety, OCD, tics, irritability and other PANDAS symptoms can create difficulties when it comes to:
- Attendance (due to lack of sleep and fatigue)
- Sensory overload
- Academic performance (including reading, writing and math)
- Fine motor skills (handwriting and task completion)
- Urinary frequency and control
- Appetite and ability to eat throughout the day
- Social issues with peers
It’s important that educators and administrators at your child’s school are aware of and understand the challenges of PANDAS. They will need to work with you to establish appropriate accommodations to support your child’s learning experience. Remember, you are not alone in navigating these challenges. PANDAS Network will help you understand what accommodations your child is entitled to. We’ll also discuss how to be their advocate in the classroom.
Below we cover how to determine if your child needs a 504 plan or an Individualized Education Plan (IEP) for school accommodations. Learn how to decide which plan works best for your child. You’ll also learn how to make the necessary arrangements to put accommodations in place. Feel free to share this Education Toolkit with your child’s teachers and school administrators to help keep them informed and prepared to work with you to address your child’s learning needs.
Section 504 of the Rehabilitation Act of 1973 is a federal civil rights law created to prevent discrimination by protecting children with disabilities in school. Under this law, a 504 accommodations plan provides supplemental services and adjustments to the learning environment. This helps students with physical or mental impairments continue to learn alongside their peers in a general education setting. 504 plans are good for students who only need accommodations to participate in a classroom setting and follow the curriculum. They don’t need changes to the curriculum or setting.
Typical 504 accommodations may address:
- Instruction – This may include additional check-ins or 1-on-1 time to assess a student’s understanding.
- Presentation of Curriculum – This includes accommodations like providing class notes and written outlines. It can also include dividing long assignments into multiple smaller, manageable parts.
- Environment – Accommodations may include a pass to visit a designated safe space and support person as needed to calm OCD, anxiety or aggression. Students can also arrange for private testing spaces, movement breaks and adjustments to attendance policies; this can mean excused absences, early dismissals, or late arrivals.
Accommodations do not alter the content or expectations of the established curriculum or who provides instruction. Instead, accommodations provide support by changing certain learning conditions to adjust to the student’s specific needs.
To qualify for a 504 plan, the student must have a physical or mental impairment that affects or limits their ability to complete school work or learn in a classroom setting.
For children with PANDAS, this may include:
- Tics and issues with movement that affect walking or speech patterns
- Restricted food intake (a major PANS symptom)
- Lack of REM sleep
- Separation anxiety
- Inability to concentrate or significant brain fog
- Inability to think clearly and rationally (due to symptoms of OCD)
- Delayed learning processes
- Impaired executive functioning skills
- Developmental regression
- Dysgraphia, which can hinder a student’s ability to write
It may be time to look into creating a 504 plan for your child if you begin noticing:
- Your child’s basic needs are not being met at school. This could include not eating, frequently needing to leave class to use the bathroom, or not going outside for recess.
- School staff are calling or emailing home more than usual.
- Your child is overly stressed and struggling to manage homework, or consistently bringing home unfinished schoolwork.
- Getting your child to school is a challenge. This could mean morning stomach aches, crying, or refusing to leave the house. It can also be other incidents that don’t happen in other circumstances.
- Your child is struggling in subjects they previously did well in.
- Your child has difficulties waking up to get to school on time.
- When your child gets home from school they unravel, even if the school states there are no issues. Some children are able to hold back anxiety during the day but it unfolds when they get home.
- Other signs that indicate your child needs extra support.
Parents, guardians, doctors, therapists or teachers can request that the school assess a student for a 504 plan. Once you decide to start the process of requesting a plan for your child, you will need to write determination and evaluation requests. You can use these sample determination request and request for evaluation letters as guides. Don’t forget to keep a copy of each for yourself. It is also important to hand deliver each letter and ask for a date stamp. You can also mail them with a return receipt request to establish a timeline. You can also email the letters as an attachment. Documentation is very important and will help make the process run smoothly.
Once you submit your request, an academic advisor, guidance counselor or principal sets a meeting with the 504 planning team. The steps to starting that process are:
- First, educate yourself about the process and requirements for both 504s and IEPs. It can also be helpful to get support and advice from other families dealing with PANDAS who have gone through the process. You can join groups like the ASPIRE Facebook Group. You can also find PANDAS support groups in your area, whether on Facebook or in person.
- Assemble copies of all medical reports, academic assessments and other documentation of your child’s symptoms prior to meeting with the 504 planning team. This can include official diagnoses. Review these documents and make a list of any useful accommodations the school could make before your first meeting.
- Keep a list of behaviors and symptoms for which your child may require additional accommodations or support. Use this information to request updates to their 504 or IEP plans throughout the year or at the annual review meeting.
- Put all communication in writing. This is so you have a documented paper trail you can refer to in the future if necessary. Any time you have a conversation with a school official, follow up with an email to document what you discussed.
Remember that 504 and IEP plans are fluid. If your child needs new types of accommodations, you can call a meeting to request adjustments. You may be able to request certain smaller changes without a formal meeting, so don’t hesitate to contact your school administrators. Changes that are made without a formal meeting should still be documented.
Most children diagnosed with PANDAS/PANS will qualify for a 504 plan. A 504 plan may provide certain services to help a child access general education, including assistive technology to work around learning barriers. For example, a child with PANDAS may be allowed to type responses or speak them into a recording device instead of writing, due to difficulties with fine motor skills.
Accommodations must give the student meaningful equal opportunities, consider their functional limitations and offer different opportunities to demonstrate knowledge and learned skills. Students who qualify for assistive technology through a 504 plan may benefit from:
- Fidget tools
- Lined paper
- Recording devices
- Math manipulatives
- Graphic organizers
A 504 accommodations plan will also document any additional school services available to assist the student in accessing general education. These services may include occupational therapy, transportation services, tutoring services and more.
It is important to remember that an accommodation plan includes tools to assist the child’s ability to learn but can also address environmental factors that may trigger their symptoms. For example, if a child cannot handle loud noises, an environmental accommodation could be allowing the child to leave school 5 minutes early to avoid the loud noise in the hallways at the end of the day. For more examples of accommodations and services that may be available through a 504 plan, see this comprehensive list of 504 accommodations and general education accommodations.
There are more options available for children who need educational accommodations than just a 504 plan. A 504 plan provides help for students who will be able to make progress in a general education setting with accommodations and additional support. Students whose symptoms are disabling enough to hinder their ability to achieve academically in a general educational setting may qualify for an Individualized Education Plan (IEP) instead.
Below are some key differences between an IEP plan and 504 accommodations:
- An IEP is for students who require modifications to the curriculum, expectations or learning setting in order to make progress. A 504 plan helps students achieve standard learning goals and progress through an unmodified curriculum.
- An IEP can be used for students in grades K–12, while a 504 plan can serve students at K–12 and college levels.
- An IEP is a written plan that includes goals, tracks progress and lists services to be provided from specialists.
Getting 504 accommodations for your child can be overwhelming, but we are committed to providing resources to help you navigate all parts of this process. If you feel that your child’s school life and learning ability have been impacted by their diagnosis, take some time going through the resources above to determine what kind of accommodations plan they may benefit from the most. We’re here to help you be your child’s advocate in the classroom and beyond.