Understanding MDA Advocacy’s Education Policy Efforts

At MDA, we believe that students in the neuromuscular community deserve to pursue their own education, career goals, and dreams just like their peers do. To do this, we know that we must equip students and their families with the tools to advocate for their needs in the classroom. There are several developments related to education policy that may impact the MDA community, and we are closely monitoring new developments. Continue reading for updates on our country’s education policy and our advocacy efforts to date.

Why is MDA involved in education policy?

Education is vital to the empowerment and independence of the neuromuscular community, which is at the heart of MDA’s mission. Students living with neuromuscular disease may have different needs in the classroom, such as accommodations to manage symptoms like muscle weakness and fatigue, and may need support to fully participate in classroom activities. As an organization, MDA advocates for the services and supports that our community needs to achieve their educational goals. A set of principles guides our work in this area.

MDA’s principles

• MDA advocates for strong enforcement and funding of the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act, which guarantee students with disabilities – including many students in the neuromuscular community – receive access to appropriate in-school accommodations, individualized supports, and individualized education plans (IEPs).
• The U.S. Department of Education (ED) is the only agency with the authority to enforce the IDEA and that holds appropriate expertise on the education of students with disabilities. The IDEA serves more than 8 million students, and Section 504 of the Rehabilitation Act (Section 504) serves nearly 1.5 million students. Without oversight, public education funding intended for students with disabilities could be diverted to other education priorities. This could mean diverting funds away from supports for children and young adults with neuromuscular diseases, including those mandated by individualized education plans (IEPs) or 504 education plans – supports like physical accommodations, assistive technology and equipment, mental health services, occupational therapy and physical therapy – that enable equal access. Adequate federal funding ensures schools can obtain the staff needed to support students with IEPs and under Section 504 plans. While states are entitled by law to play a role in implementing the IDEA and direct where their IDEA funding goes, they often do not have the capacity to enforce its provisions and provide a similar level of guidance and technical assistance provided by ED. IDEA protections may not be enforced consistently in all states, for example. Further, without the necessary school personnel, such as occupational therapists and speech language therapists, students’ needs may not be met.
• MDA opposes cuts to ED, including within the Office for Civil Rights (OCR), which threatens to worsen an already-deep backlog of civil rights investigations that fall under Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act (ADA).The OCR and its data are key to ensuring access and opportunity for students living with disabilities.
• Access to specialized support services, such as physical and occupational therapy, assistive technology, and more, help students participate in the least-restrictive classroom environment (LRE), a core component of the IDEA. The LRE means that students with disabilities receive education alongside their peers to the maximum extent possible in the regular classroom environment and are supported through any necessary accommodations. This is critical for equal access.

Legislative activities

As we shared above, MDA advocates for strong federal funding for ED and full funding for the IDEA. Since 1975, IDEA has promised students with disabilities – including members of the neuromuscular disease community – access to a free and appropriate public education (FAPE). However, today, the federal government contributes less than 15% of the total costs related to educating students with disabilities, far below the 40% promised in 1975.

To address this shortfall, Congressmen Don Bacon (R-NE) and Jared Huffman (D-CA), along with Senator Chris Van Hollen (D-MD), introduced the IDEA Full Funding Act (S.1277/ H.R. 2598) to ensure that schools have the resources they need to support all students with disabilities, including those living with neuromuscular diseases. For the neuromuscular community, these resources are vital to obtaining IEPs, classroom accommodations, and much more. Below, we share how you can help us support this bill.

Legal developments

AJT v. Osseo:

A recent ruling by the U.S. Supreme Court (SCOTUS) held that plaintiffs bringing a lawsuit alleging discrimination under Section 504 of the Rehabilitation Act and Title II of the ADA in educational settings do not have to meet a legal standard that requires them to prove that they were discriminated against intentionally in order to receive relief.

Prior to AJT v. Osseo, several federal Circuit Courts of Appeal had determined that a plaintiff seeking relief under ADA or 504 claims must prove that someone acted with “bad faith” or “gross misjudgment.” This standard would have made it far harder for children and families to pursue a lawsuit within educational contexts. Outside of educational settings, for injunctive relief, plaintiffs can obtain relief without proving intent to discriminate. For compensatory damages, the plaintiff must show intentional discrimination.

SCOTUS ruled in AJT v. Osseo that ADA and 504 claims based on educational services should be subject to the same standards that apply in other disability discrimination contexts.

• Join us in urging Congress to cosponsor and pass the IDEA Full Funding Act! You can share your experiences and urge Congress to pass this bill and support students with disabilities by sending a letter today.
• Are you a member of the neuromuscular community passionate about strengthening access to education for students with disabilities? If so, MDA wants to hear from you! To help us make the greatest impact, please share your education experiences and stories with us so that we can share perspectives with Congress.
• To hear when MDA Advocacy shares new opportunities to support policies that strengthen educational access and disability rights, join us!