Parental Preparation for Securing Accommodations at K-12 School for Children with the Ehlers-Danlos Syndromes

Please note: the author is based in the United States, so these are resources available in the US. Check with your school or local government education office or website for processes available in your country.

The Individuals with Disabilities Education Act (IDEA) is the law in the United States that ensures every child in public schools receives an education to help them achieve academically at the highest level possible. Section 504 of the Rehabilitation Act of 1971 prohibits discrimination against those with disabilities by any program or activity that receives federal funding. When a student needs accommodations at school to achieve the highest level of learning possible, parents are often relied upon to provide information regarding their child’s struggles and what might best help their child. Usually, there will be some kind of meeting between the parents and school to document what kind of accommodations the student needs. Parents can help contribute to the meeting by coming prepared with information regarding their child, the child’s struggles, and what accommodations would be ideal. 

At the accommodations meeting, the school personnel may refer to an individualized education plan, or IEP, or a 504 plan. Click here for a chart defining the difference between the two. These services and accommodations are provided to students in public schools at no cost to the families.

Identifying Struggles

The first step is identifying the struggles a student experiences in relation to the school day. The questions below will help parents and others identify the particular parts of the school day–even those that happen outside of school and those that happen infrequently–that cause their child to struggle. Consider discussing these questions with the child, if appropriate. Sharing these questions with family members, babysitters, coaches, activity advisors and leaders, and any others who may have insight into what causes problems for the student at school may be of help. Writing out answers to these questions may help to identify patterns or themes that can then perhaps be addressed by one accommodation. Not all of these areas may be troublesome for a particular student, but it’s good to identify struggles, even if they don’t require a formal accommodation from the school. 

1. 1. What does my child struggle with before getting to school? Consider things like waking up, dressing, eating, transportation, getting to their locker and/or classroom, and other things that can occur before the school day even starts. 
   2. What does my child struggle with during regular classroom instruction? Consider things like seating, writing, reading–both close up and far away, taking notes, tests and exams, deadlines, long-term projects, computer work,  sensory issues, individual work, group work, quiet time, subject-specific issues, and anything else that may happen during regular classroom instruction.
   3. What does my child struggle with during special classroom instruction, like music classes, art classes, physical education classes, foreign language classes, drama or choir classes, or other classes where classroom set-up and instruction may be different? Consider things like traveling to and from these classes, bracing, uniforms, specific activities, access to stages, risers, and other structures, use of tools, use of instruments, sensory issues, fatigue (overall and specific body parts), and anything else that could occur when the student is in special or elective classes.
   4. What does my child struggle with during lunch, recess, study hall or other free periods, and bathroom breaks? Consider food sensitivities and allergies, seating options, weather-related issues, play structures & safety, timing of bathroom breaks, assistance needs, and other activities that may require accommodation.
   5. What does my child struggle with during all-school presentations or gatherings, field trips, celebrations days, standardized testing and other special school days? Consider seating options, traveling to and from, chosen activities, food choices, weather exposure, socialization, extra time or assistance, the need to move or fidget, or other accommodations that may help during special days at school.
   6. What does my child struggle with after the school day has ended? Consider the weight of the backpack or other bag, fatigue, transportation, after-school activities, jobs, babysitting or other supervision, homework completion, hunger, aching body parts, the need for rest, and other struggles that could occur after the school day has ended.
   7. What does my child struggle with when it comes to interacting with other people? Consider interactions with peers, teachers, administrators, supervisors, other adults (such as parents), group interactions, one-on-one interactions, body language and other interactions that may be difficult.
   8. What are my child’s medical needs throughout the school day, both planned and unplanned? Consider regular needs (medications, snacks, etc.), minor incidents, major accidents or injuries, transportation, emergency contact, when parents or guardians should be contacted, equipment or supplies to have on hand, information needed by school personnel, and other medically-based needs to be accommodated. 

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Identify possible solutions

1. What specific intervention(s) can help with the areas we’ve identified as a struggle? See the list below for accommodations that could help with difficult areas.
2. Which of these interventions will I (as the parent or guardian) need to be responsible for doing or providing? While the school is required to provide accommodations free of charge, it is sometimes easier or preferred (by the child or parent) for the parent to provide certain equipment or items that are seen as an accommodation. Some items, like snacks, medication, adaptive clothing, and more will need to be provided by the parent or family. There are resources at some schools that can help find ways to pay for these items. Consider involving the school social worker, if one exists.
3. Which of these interventions will the school need to be responsible for doing or providing? This might be something the school provides to the student–equipment or special access, for example–or something a certain person, like the classroom teacher or the school nurse, is prepared to do daily or in an emergency. 
4. What roles might my child play in these accommodations? Will they need to ask for anything or have anything, like equipment or instructions, with them? There will be some accommodations students need to ask for, especially as they grow older and begin to advocate for themselves. They may be responsible for going to the school nurse to take medication at a certain time or for telling the teacher when a certain symptom is acting up, for example. 

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Suggested Accommodations for Students with EDS

The following is a list of possible accommodations for school-aged children with the Ehlers-Danlos syndromes. Not all will be applicable in every situation or every age group, and some schools may not be able to offer some of these accommodations. Work with your child’s school personnel to come up with a plan that will be the most helpful for your child. Oftentimes, the school has accommodated other students and may have equipment and ideas to offer. 

Attendance

1. Virtual schooling options for students unable to attend each day:
   • Synchronous learning with the rest of the class
   • Asynchronous learning–student accesses lectures and material on their own time
   • Combination of the above
2. Waive attendance policies, if possible. Consider both classroom attendance policies and school-wide attendance policies.

Mobility and Getting Around

1. Use of the elevator at school
2. Use of a school wheelchair or other assistive equipment
3. Permission to leave class early to:
   • Avoid crowded hallways and jostling
   • Have more time to get to the next place
   • Be at the front of lines (such as at lunch) to minimize standing
   • Access preferential seating at an assembly or other gathering
   • For other reasons agreed on between parent, student, and school
4. Allow the student to leave class without a pass for common or emergency needs (medications, emergency bathroom, or other needs.) This should be discussed and decided upon with the classroom teacher(s) ahead of time.

Carrying, Reaching, and Other Difficult Movements 

1. A set of books or other materials to keep in the classroom and one set to keep at home 
2. A wheeled bag instead of a backpack 
3. Cubbies, lockers, and other items at eye level to minimize reaching or stooping
4. Adaptive writing utensils or adding grips to writing utensils for comfort

Seating

1. Provide options for regular classroom seating other than a standard desk:
   • A table with a chair or a desk with a detached chair 
   • A way to elevate the student’s feet
   • Cushions for a standard desk
   • Bean bags or other supportive seating
   • The ability to stand, if needed
   • Adjustable seating 
2. Proper back support on chairs and benches (or options for a different place to sit)
3. Allow the student to choose whether to sit on the floor or in a chair if students are asked to gather on the floor. 
4. Allow the student to sit in a different position on the floor if “criss-cross applesauce” causes pain.
5. Allow the student to arrive at assemblies and gatherings early to select the best seating for them, whether that is wheelchair accessible, on the front row of the bleachers, on the aisle, or in another place. 

In The Classroom

1. Extra time on in-class written tests and assessments to allow for hand pain and arm strain
2. Extensions of deadlines due to the unpredictability of EDS symptoms and flares
3. Provide wide-ruled paper. Narrow or college-ruled paper can cause difficulty for writers who have hand pain or are susceptible to cramping.
4. Waive the student from being graded on penmanship.
5. Allow the student to use a computer or tablet to complete assignments.
6. Allow alternate ways of answering questions. For example, a student may have great difficulty writing, so they may need to answer their spelling test orally. Consider what is easiest for the student and still meets the lesson objectives.
7. Adjust for sensory input and sensory processing issues: 
   • Reduce background noise as much as possible.
   • Consider allowing use of music, earbuds, or earplugs at appropriate times.
   • Adjust lighting if the student needs it and it is possible.
   • Consider avoiding heavily scented items, perfumes, and cleaners.
   • Change seating to be closer to or further away from heating and cooling vents.
8. Provide a printout of presentations ahead of time. 
9. When students are expected to take notes from a presentation, provide the student with a copy of the notes or provide them with a “fill-in-the-blank” format to follow along with.
10. Understand and allow fidgeting behaviors.
11. Encourage physical or occupational therapy exercises or rest when tasks become difficult or painful.

Physical Education

1. Make sure the student wears braces, splints, and other supports during physical education and recess, even if they aren’t required the rest of the day. 
2. Consider enrolling the student in an adaptive physical education class.
3. If an adaptive physical education class isn’t available or feasible, provide adaptive physical education activities to all students, so those who need the adaptive activities don’t feel singled out. 
4. Liaise with physical or occupational therapists the student sees to understand the strengths and struggles the student has and how physical education activities can support therapy goals.
5. Replace the general physical education class with:
   • Physical or occupational therapy prescribed to the student.
   • An out-of-school activity the student can do safely and that is logged by the student and/or parent.
   • A different class or study hall.
6. Waive the physical education credit. This may require communication from the student’s doctor.

Food 

1. Allow extra portions of items from the school lunch if the student cannot tolerate something being served.
2. Bring a lunch from home or bring snacks to supplement what the student can eat of the school lunch.
3. Allow access to snacks and beverages when needed.
4. Communicate food intolerances or allergies to the school nurse as well as the classroom teacher(s).
5. Consider non-food-based rewards and prizes.

Clothing

1. Consider easy on-off shoes if they struggle with laces or other closures.
2. Provide assistance when changing clothing:
   • Coats and other winter/snow gear
   • Gym uniforms and bathing suits
   • Lab coats and protective glasses
   • Art smocks
   • Play costumes pieces or costume pieces for plays/musicals 
   • Sports uniforms or other required clothing
3. Allow for adjustments to clothes required for uniforms, physical education, or other activities:
   • For comfort: some clothing items, such as elastics and closures, can cause harm to the skin.
   • To assist with walking: students may need special shoes to provide support and balance.
   • For braces, pumps, and other medical equipment that is worn on the body
   • For injuries and related bandages or casts

Bathroom

1. Use of an ADA-accessible toilet with grab bars, even if the student isn’t in a wheelchair. Give the student a written pass to allow them in a restricted area, if necessary.
2. Assist children in the bathroom, if necessary/asked. Even children who seem like they should be “old enough” may need help.
3. Allow longer time for bathroom use if the student struggles with current time expectations. Create a new, acceptable time expectation and/or how to communicate if a longer time is needed.
4. Allow emergency bathroom use. An agreed-upon hand signal or phrase can save a classroom teacher from all of the rest of the students needing to use the bathroom, too.

Care Needs

1. Make sure there are well-stocked classroom and school first aid kits. Inform the school if there are special items it would be helpful to have on hand. Provide them to the school, if possible. 
2. Allow the student access to the first-aid kit(s), ice and ice packs, or an adult who can get these items, as is needed and is reasonable.
3. Have a pain management plan in place with classroom teachers, principals, and school nurse(s). This may include:
   • Access to ice and ice packs as needed
   • Access to over-the-counter pain medication as described by a parent or medical provider
   • Access to prescription pain medication as indicated by a medical provider
   • Ability to do therapy exercises as needed
   • Ability to leave the classroom and access to a place to lie down
   • Other items as needed or required
4. Allow students to leave class to take medications. Classroom teachers should be informed when or under what circumstance this will happen.

Fatigue 

1. Access to a place to lie down when the student is fatigued, in pain, or overstimulated. Ideally, this would be a quiet, dim place.
2. Allow the student to arrive at school late without penalty. This may be an accommodation that occurs every day or something set up for when needed.
3. Build in a rest time in the middle of the day–or whenever fatigue is the most likely. There are a variety of ways to make this work, from a nap time for younger children to purposefully scheduling empty periods at a certain time of day for older students. Try not to let the need for a rest time supersede the student’s need for time with their peers or other non-required classes (such as electives, art, music, tech, and others.)

Assistance from Others

1. Some schools have the ability to provide an aide for the student. This aide could be a personal aide with them throughout the day or an aide in certain classes where extra help is needed. 
2. Allow a friend or buddy (or multiple friends or buddies) to assist with carrying things from room to room, during a symptom flare, or for other tasks that may require help. Allow the student to have a say in who the buddy is, if possible. 
3. Provide help with writing:
   • Missing notes from a lecture can be filled in using a copy of a peer’s notes or the teacher’s notes. Make sure the student knows they will have this help ahead of time. 
   • Provide a scribe to write answers during tests or on homework assignments. 

Helpful Information for the School

Parents can–but are not required to–provide the following information to the school to help school personnel assist the student:

1. Basic information on EDS and symptoms
2. Instructions for classroom teachers and school nurse(s) regarding symptoms the student might experience. This may include signs and symptoms to watch for, behaviors that may not seem like obvious indicators something is wrong, what to do when there is a symptom flare or other issue, when to contact parents or other emergency contacts, if an ambulance should be called, preferred clinics and hospitals, and other information deemed necessary and appropriate.
3. Instructions on various treatments that may help during the school day, including medication frequency and doses
4. Basic medical information, such as allergies or other issues in addition to EDS
5. Directions or user manuals for medical and assistive devices
6. Education regarding service and support animals
7. Contact information for a “point-person” medical provider (often the primary care provider) as well as any physical or occupational therapists and when to contact these people.
8. Other information deemed important by the parents or medical providers. 

Other Ideas

1. Provide a safe area outdoors or an area indoors where the student (and friends) can spend recess time if they feel unsafe outdoors.
2. Provide assistance on the playground or other outdoor areas when ice, snow, or uneven terrain is present. This is another instance when indoor recesses may be an option.
3. Consider areas of pain or instability when choosing a musical instrument, especially if the student wishes to play long-term.
4. If the student doesn’t attend school in person, social activities, such as field trips, assemblies, class activities, guest speakers, and extracurriculars should be available and accessible to students with EDS. Social interactions are just as important as classroom learning.
5. When planning activities for students, make sure they are accessible for all students. Field trip locations should be accessible and “fun days” should provide options for a wide variety of interests and abilities. 

For more EDS- & HSD-specific school accommodations, click here.

The Job Accommodation Network (JAN) offers accommodation ideas for job sites based on disability type, diagnosis, limitations, and job duties. While some of these suggestions may help at school as well, they also provide detailed lists of where specialized equipment can be purchased or rented. For example, here is their page for All-Terrain Scooters. Here is a link to their Ehlers-Danlos Syndrome page. 

Revisit and modify the accommodations as often as necessary. Do not be afraid to try something else. Take the feedback of your child, teachers, administrators, counselors, and other trusted sources into consideration. This can be a long and frustrating process, but the outcomes–a child in less pain, a child who likes school, a child who can achieve more–are worth it.

 

Cover image by Jerry Wang (Unsplash)

 

Kate Schultz

April 2023