Having a chronic, debilitating illness like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can severely impact a young person’s ability to attend school. Your child’s right to a free and appropriate public education (FAPE) is protected by two laws, Section 504 of the Federal Rehabilitation Act of 1973, and the Individuals with Disabilities Act (IDEA, 2004).
The first is a broad civil rights law that protects the rights of individuals with handicaps to participate in programs and activities that receive funding from the US Department of Education. ME/CFS is a physical impairment under Section 504 and schools must provide accommodations so that your child has access to an education. Typical accommodations include reduced schedules, waiver of attendance policies, waiver of PE requirements, extra time for exams and projects, access to tutors or online classes, and access to a place to rest at school as needed. Section 504 requires a written Plan which should be developed jointly by the school and the parents. It is helpful to have a doctor write a letter giving the diagnosis, describing the symptoms and defining the accommodations needed.
IDEA also requires a free and appropriate public education for children with disabilities and may apply when ME/CFS causes learning difficulties, as opposed to difficulty with physically attending school. Children with ME/CFS fall in the category of “other health impaired.”
Eligibility under IDEA is determined by an evaluation which tests academic and cognitive performance. The evaluation may include a psychological assessment. Be wary if the school seems intent on proving that your child is not really sick, but suffering from a psychological problem.
Parents have the right to an independent evaluation if they disagree with the school’s conclusions.
IDEA requires the development of an Individual Education Plan (IEP) that outlines special education services for the child. The IEP may also include the accommodations listed above for a 504 Plan. A doctor’s letter is very helpful with the IEP process, especially if it describes the specific services needed.
If your child is too sick to attend school for more than 14 school days (not necessarily consecutive), they are eligible for Educational Services in the Home or Hospital. This usually includes tutoring in the home or hospital so that your child can keep up with their classes. These services are accessed by having your child’s medical provider fill out a form (28R/3) and submit it to the school principal or to the office of special education. Please see the Massachusetts Department of Elementary and Secondary Education website for more details.
Online classes are an option if physically attending school is too difficult. There are two virtual public schools (K-12) in Massachusetts that are tuition free for state residents. The TEC Connections Academy Commonwealth Virtual School (TECCA) is an independent virtual school that uses the Connections Academy online educational software.
The Massachusetts Virtual Academy (MAVA) is run by the Greenfield, MA school district and uses the K12 online educational software.
The Massachusetts Department of Elementary and Secondary Education website has a Frequently Asked Questions page for virtual schools.
Some school districts offer online classes at the high school level as an alternative to the traditional school program. Attending a private online school is also a possibility. These have tuition and materials costs and the student is considered to be homeschooled by their local school district.
“Example of 504 Plan Accommodations” is a list of some possibilities from the Massachusetts CFIDS/ME & FM Association (2012).
“IDEA vs 504” fact sheet from the New Jersey Chronic Fatigue Syndrome Association provides a table comparing the two laws (2010).
“Presentation to the Chronic Fatigue Syndrome Advisory Committee” has a summary of laws, suggestions for accommodations, and a sample letter from a doctor to a school (Comerford, 2008).
Sample letter from doctor to school is from Appendix E of the Pediatric Primer (Rowe et al., 2017).
Sample letter from doctor to school developed by Dr. Faith Newton, Delware State University (2017).
“School Accommodations for Kids with CFS and Related Illnesses,” blog by Sue Jackson (2012).
“Example School Accommodations for Kids with CFS,” blog by Sue Jackson (2012).