Working with Schools

It can be hard figuring out how to approach meeting your child’s need in a school environment, when they have dysautonomia. Since so many people do not know what these disorders are or how to accomodate students with them, it falls onto parents and caregivers to advocate for what their children need.

Team DAF member Renee Hedges offers some very helpful insight into what you can do when working with your child’s school. Renee lives with POTS, NMS and Autonomic Neuropathy and has more than 18 years experience working with students an Intervention and Learning Specialist. She is now an advocate for dysautonomia patients, especially children and their caregivers.


Having any form of dysautonomia can negatively impact your child‟s educational performance. Symptoms range on a spectrum, and everyone is unique in their needs. Some of these symptoms might fluctuate from time to time or even hour by hour.

There is no doubt that many children are high functioning and strive to succeed at high levels even if they are suffering with this illness. As a result, schools might not recognize the needs of your child. It is important for you to listen to your child‟s changing needs and advocate accordingly.

If dysautonomia is interfering with your child‟s ability to perform academically, he/she would most likely be eligible for services, accommodations, and modifications to help them succeed in school.

It is important to contact the school principal, guidance counselor, psychologist, or learning specialist to let them know you would like to request a 504 Plan or Individual Education Plan (IEP) for your child.

It is vital to do this sooner rather than later, as the process can take time. It is also important that you put your request in a formal letter.

It is very helpful if you provide a handout about your child’s condition with your letter. Also, putting your request in writing starts the clock ticking for the district. Once the request has been put in writing, public schools have to respond in a certain time frame according to rules and regulations.


Section 504 plan of the Rehabilitation Act of 1973 is a civil rights law that requires schools to remove barriers and allow students with disabilities including illnesses to participate freely in public education.

Nobody can be excluded from participating in a federal funded establishment. Under this act, “any physical or mental impairment which substantially limits one or major life activities,” such as thinking, learning and walking are protected under this law. Every dysautonomia illness meets law requirements.

A 504 plan can be written and implemented to provide accommodations for your child during the school day. Even if your child has good grades, having such a plan ensures allowances when needed, so they can succeed daily. As you know, days can be unpredictable for those with dysautonomia.

504 plans can look different for each school district.  If you run into trouble, request the school advocate to help you. You can also file a due process complaint. Some districts will only provide accommodations, which is perfectly acceptable according to the law. Other districts will provide modifications or simple services, but they are not required to.

504 plans are a blueprint for how your child will have access to learning at school. It provides changes to the learning environment to meet the unique needs of your child. It also provides accommodations for state testing.

The plan should be drafted with you present. If your child is in middle or high school, encourage your child to participate in the drafting process, as well.

Prior to the meeting, write down your child’s daily struggles and needs to help make a conducive plan. Even if they are younger, get your child’s input before the meeting.

Typically, for dysautonomia all you need is a doctor‟s note explaining your child‟s illness to get a plan in place. I suggest you have your doctor denote how the illness negatively impacts educational performances as well as some accommodations that would benefit your child at school. 504 plans should be updated annually or earlier at your request.

It is important to understand that 504 plans will not cover home instruction for your child. If your child has problems with dizziness, fainting, or has to stay in bed for days, an IEP would be a better fit for your child. It has more protections. A child can move from a 504 plan to an IEP if the disability adversely impacts educational performance.


An IEP provides individualized special education services to meet the unique needs of your child. Your child is protected under the Individuals with Disabilities Act. This guarantees your child access to free and appropriate public education despite the severity of their illness. An IEP provides a child more direct services, so it‟s a much longer process in obtaining eligibility for an IEP. The district has up to sixty days to complete the process. A child with dysautonomia would qualify for an IEP under the “Other Health

Impaired” educational diagnosis criteria if the illness is negatively impacting educational performance. Examples of negative impacts would include: focus, standing, sitting, walking, lifting, bending, thinking. eating, fatigue, and pain. An IEP requires the school district to do a full evaluation looking at cognitive ability and academic achievement. Even if your child is high functioning, they still can qualify, so don‟t let the testing requirements deter you. If your child fatigues easy, let the School Psychologist know, so the testing can be broken into small sections. An IEP provides more support, specialty designed instruction, and can establish a change of placement for home instruction should your child be unable to attend due to dysautonomia flares or other co-morbidity illnesses. An IEP is updated yearly and testing is updated every three years. An IEP provides services, curriculum accommodation and modifications.

**It is important to remember that an IEP doesn’t mean your child is placed in specialized classes per say. Many children remain in the general education classroom with a Learning Specialist overseeing the IEP and supporting teachers for implementation purposes. It depends on the specific needs of your child. All teachers, including art, gym, music, and other special classes are required by law to give these allowances. Many times a Learning Specialist will assist teachers

with the modification and accommodation process and inform them of your child’s needs.


You might be surprised to know that many private and parochial schools have a Learning Specialist to assist students with mild disabilities. Even the most elite private schools have changed programming over the years. Private schools that get any kind of federal funding are required to provide some form of accommodations or service learning plans to families. However, they do not have to provide an IEP.

Private schools that do not obtain federal funding, are not required to provide any accommodations for your child. If your child attends private school, talk to the principal, director, or dean to find out if a program is in place.

Even if a program is not in place, see if the school will work with you. If your child acquired dysautonomia after acceptance, is considered to still have average intelligence, and can use critical thinking skills or fulfill program requirements, many schools will be happy to work with you.


General accommodations are part of all 504 plans and Individual Education Plans. Accommodations should be individualized for each child and created with parental and student input. Accommodations are intended to put a student with an illness at the same starting point as those without an illness.

Accommodations are supports that help a student with dysautonomia access the general curriculum and state testing requirements with equality.

Examples of accommodations for individuals with Dysautonomia could include:

-Extended time

-Quiet space

-No penalty for spelling errors unless spelling is being assessed.

-Repetition of directions

-Thinking time

-Use of highlighter

-Word banks

-Buddy for dizzy days

-Test read aloud

-Directions read aloud and clarified


-Assignments or tests broken into segments

-Assistive technology permitted including audio books and spelling aids

-Frequent breaks

-Low lighting, wearing of sunglasses and ear plugs for sensitivities as well as breaks from computer screens.

-Unlimited bathroom breaks

-Ability to have drinks during class

-Elevation of feet, squatting, standing, crossing of legs

-Nurse visit to lay flat or vital checks

-Alternative physical education

-Attendance adjustments

-Special schedule or flexible scheduling

-Extra meal/snack break

-Elevator Pass

-Organizational support

-Visual instructions

-Leaving class two minutes early to get to the next class.

-Use of a wheelchair or other mobility devices including special chairs.

-Preferential seating in the front class to maintain focus.

-Sitting away from heater or air conditioner if temperature regulation is an issue.

-Templates for note taking

-Use of calculator

-Formula Banks

-Ability to wear HR monitor during the day or in gym.

-Wear compression hose for gym

-Ability to meet with teachers to clarify content

-Service dog provision

-Videotaping a lesson

-No penalty for tardiness as long as work is maintained.

-Ability to wear braces and other special equipment.


Modifications are not required for a 504 plan, but some districts will include this as an option. However, modifications are part of the IEP process. If you feel your child would benefit from both accommodations and modifications, an IEP would be your best option. A modification is a change in what the child is expected to learn or demonstrate. Modifications can also alter grading and curriculum.

Examples Include:

-Reduced work load or shorter assignments

-Half school days with partial requirements

-Alternative testing formats

-Different curriculum pace

-Alternative projects or ways to assess progress

-Pass/Fail grading

-Redoing assignments for full credit

-Allow take-home tests

-Omitting assignments/grades

Please Note: Some students with dysautonomia may need modifications while others will not. You can still have an IEP for your child without any modifications and agree to accommodations only. Some parents choose an IEP because their child needs special services.


Your child would be eligible for specific direct, indirect and related services with an Individual Education plan only. This is not part of a 504 plan. The frequency, duration, and location of the service should be stated clearly on the IEP. Services for students with Dysautonomia could include:

  1. Specialized Instruction
  2. Executive Functioning Coaching
  3. Tutoring/Small Group Instruction
  4. Counseling Support
  5. Occupational Therapy
  6. Speech Therapy
  7. Change of Placement to Home Instruction
  8. Nursing Services
  9.  Nurse consults with teachers/ staff regarding illness and syncope training or plans for safety
  10. Intervention Specialist assists teachers and communicates plan and any changes to
  11. Special Transportation Services
  12. Transition Services at age 16
  13. Physical therapy
  14. Assistive technology

Most colleges have an Office of Student Accessibility Services or Disability Services Center. Each college does things a bit differently, but generally your doctor has to complete a Disability Verification Form for eligibility. Your child‟s high school may also provide documentation to facilitate post-secondary supports. There are strict deadlines for these, so you would need to check with the particular college.

Some require students to complete paperwork at the beginning of each semester. Your child should work closely with this department and make a connection with the academic coordinator to find out what is available to them. In addition, it is the student‟s responsibility to have a discussion with each professor concerning the needed accommodations at the beginning of each course.

The Faces of Dysautonomia


Rachel Blevins



Copyright 2018 Dysautonomia Advocacy Foundation

No information found on this site should be construed as medical advice or diagnosis. Always consult a medical professional for questions about your health.