Federal laws

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.