Families navigating life with Charcot-Marie-Tooth disease have a great deal to manage: therapeutic interventions, orthotics and adaptive equipment, and the social and emotional realities of growing up with CMT. Education is another area that often demands attention and strong advocacy to ensure that children receive the accommodations and services they need to succeed academically.

This article offers a general overview of the legal framework for special education in the United States. It is intended as a starting point, not as legal advice. Many parents across the country have had to advocate extensively, sometimes through legal representatives, to obtain what their child is entitled to by law. We hope this overview helps you understand the system and feel more prepared to act.

The Foundation: Free and Appropriate Public Education (FAPE)

Every child in the United States is entitled to a “free and appropriate public education,” commonly known as FAPE. Two main federal laws provide for this right.

Individuals with Disabilities Education Improvement Act (IDEIA)

The IDEIA traces its roots to the Education for All Handicapped Children Act of 1975. The law establishes that children with disabilities are entitled to FAPE and, where necessary, to special education services and accommodations delivered through an Individualized Education Plan (IEP) designed to provide educational benefit to each child.

Key provisions of the IDEIA include:

  • Least Restrictive Environment (LRE): Children must be educated in the setting least restrictive to their participation, which typically means the general education classroom whenever appropriate.
  • Evaluation and eligibility: Schools are required to identify and evaluate students who may qualify for services.
  • IEP development: A team of professionals and parents collaborates to develop, implement, and regularly review an individualized plan with specific annual goals. Parents may include outside professionals, advocates, and educational consultants in this process.
  • Transition services: Support continues through age 21 as students grow into adulthood.
  • Procedural safeguards: Extensive protections for parents are built into the process.

For families of children with CMT, assistive technology and adaptive equipment are worth researching carefully. School personnel may evaluate appropriateness for some technologies, but parents are encouraged to research options independently and bring ideas to the school. Physical therapy, occupational therapy, and adaptive physical education are also services to explore under the IDEIA.

Section 504 of the Rehabilitation Act of 1973

Section 504 is a civil rights law stating that no one may be denied access to, or discriminated against within, any program receiving federal funding solely on the basis of disability. In education, this means children with disabilities have a right to access FAPE. When a student needs specific accommodations or modifications to have the same access to education as their non-disabled peers, those must be provided and documented in a “504 Plan,” which is reviewed and updated periodically.

A common misconception is that children with 504 Plans are in mainstream settings while children with IEPs are in separate settings. This is not the case. The IDEIA requires education in the least restrictive environment regardless of whether a child has an IEP. The key distinction is typically whether a child needs specialized services to benefit from education (IDEIA and an IEP) or needs only accommodations to access education (Section 504).

Section 504 does not carry the same procedural safeguards as the IDEIA, but it can be a powerful advocacy tool. Complaints of 504 violations are handled by different agencies, and the possible remedies differ from those under the IDEIA.

Worth noting: Section 504 includes language stating that disability is “a natural part of the human experience” (29 U.S.C. Section 701(a)(3)). This framing is meaningful in the disability rights community and is a reminder that disability could affect any person at any time.

No Child Left Behind (NCLB)

NCLB was designed to ensure all children receive a high-quality education and reach proficiency on state academic assessments. For children with disabilities, NCLB has several implications:

  • All students are assessed annually in core subjects, providing data on academic progress that can be relevant to IEP review.
  • Special education teachers are required to meet “highly qualified” standards (specific requirements vary by state).
  • Children are entitled to testing accommodations, such as extended time or a scribe, when their disability affects their ability to perform on tests.

Americans with Disabilities Act, Titles II and III (ADA)

The ADA is an anti-discrimination law passed in 1990 that protects people with disabilities from discrimination across a wide range of settings, not only in programs receiving federal money. Title II covers public accommodations, which includes public schools. Title III covers private facilities, including private schools. Like Section 504, the ADA addresses access and is a civil rights law. Complaints of ADA violations in educational settings are handled by the federal Office of Civil Rights within the U.S. Department of Education.

Family Educational Rights and Privacy Act (FERPA)

FERPA protects the privacy of parents and students regarding educational records. In practice, this means:

  • Records cannot be disclosed without parental consent.
  • Parents have the right to review their child’s records and obtain copies.
  • Parents may request corrections to inaccurate information, with a hearing process available if there is disagreement.

For families of children with disabilities, access to educational records is especially important because special education services are based on documentation and data. Always put records requests in writing to ensure the school responds in a timely manner.

A Note on Advocacy

The law provides for a wide range of services and accommodations for children with disabilities. School systems are responsible for delivering FAPE, but they are also managing tight budgets, and those interests are sometimes in conflict. As a parent, your focus is singular: making sure your child receives the education and support they are legally entitled to. Knowledge of the law is your most important tool.