Home » Rare Diseases » Advocating for Your Child’s Needs in School
Rare Diseases

Advocating for Your Child’s Needs in School

Countless students across the country suffer from conditions that impact their access to education. Often invisible and misunderstood, these conditions include everything from dyslexia and attention deficit disorder to narcolepsy and seizure disorders. Fortunately, students and their families can look to state and federal laws as they seek individualized accommodations.

“I think some people don’t know they have a lot of rights.,” says Piper Paul, J.D., an attorney who represents students with disabilities. “My goal is to work with the families … to educate them on these laws, to empower them.”

What rights do I have?

Key civil rights legislation for students with disabilities stem from Section 504 of the Rehabilitation Act, the Americans with Disabilities Act and the Individuals with Disabilities Education Act (IDEA). Together, these laws outline protections for people with disabilities, with IDEA specifically applying through high school graduation or through age 21. These laws can be complicated as they relate to education, and since each state may have other statutes in place, it is important to be as informed as possible.

Where do I start?​​​​​​​

Families can find many resources online when seeking accommodations for their students. Advocacy organizations such as Global Genes, for example, have easy-to-understand, comprehensive toolkits to help families understand how to work with schools. Parents should also be sure to read up on the federal laws and look up their state department of education website.

Then, when parents wish to seek accommodations for their student, it is imperative they call a formal meeting with their school and get a letter from their doctor stating their child’s needs. Throughout this process, Paul urges parents to keep the child in mind and to form a collaborative relationship with the school.

“Ultimately, it is about the child, and you want the quickest resolution possible for the child.”

Next article