As your child prepares to begin the new school year, it is important to make sure that his or her educational needs are met. Demyelinating diseases, like TM, NMO, or ADEM, often present unique challenges to students and schools alike. Because of the rare nature of these conditions, most school personnel will not be familiar with your child’s medical condition or understand his or her unique needs.
What does the law say about students with disabilities?
The Individuals with Disabilities Education Act (IDEA) is a federal law designed to ensure that public schools serve the educational needs of students with disabilities. IDEA requires that every eligible student receive a “free appropriate public education,” which means that schools must:
- Identify and evaluate students with educational disabilities
- Develop individual education programs (IEPs) for these students and provide them with special instruction and services
- Maintain records, resolve complaints, and involve parents in decision-making processes.
Some examples of disabilities covered under IDEA include: autism; visual impairment; emotional, intellectual, or learning disability; or other health impairment (OHI) such as traumatic brain injury, epilepsy, or demyelinating diseases. Students with TM, NMO, or ADEM may qualify under the OHI designation.
Section 504 is a portion of the Federal Rehabilitation Act of 1973 designed to ensure that children with disabilities have equal access to an education. While Section 504 does not require the school to provide a plan as comprehensive as an IEP, it may still grant the child access to accommodations. In order to qualify under Section 504, the child must have a record of physical or mental impairment which “substantially limits” at least one major life activity (e.g., learning). Determining qualification for services is completed by the school. Please see resources list below for more information on special education and Section 504.
What types of services may assist my child in the classroom?
Given difficulties associated with cognitive, physical, and fatigue-related symptoms, students with demyelinating diseases may require support in a classroom setting. Examples of academic support services include preferential seating, assistance with note-taking, extended time for assignments and/or exams, regular breaks, vision assessment/intervention (e.g., enlarged print), and assistive technology (e.g., laptop, dictation software). Services to address physical needs may include providing an extra set of books (one for home and one for school), utilizing an elevator pass to avoid stairs, allowing extra time to travel between classes, providing a permanent bathroom pass, and adapting physical education activities. Social-emotional supports may also be needed in the school setting. Such services may include counseling and/or in-service training for staff.
Guides summarizing information on TM and ADEM have been provided by Linda McCowen (blog post author), teacher and educational consultant from the Children’s Medical Center Dallas School Services Department. She has created individual “School Guides” for TM and ADEM, which provide a brief summary of the medical condition and importantly, how it may impact a student in the classroom. Of course, we know that every student is different and theses guides are not meant to suggest a one-size-fits-all approach. Rather, this information often provides a useful starting place for families to share about their child’s medical condition and his or her needs. From there, parents and the students themselves must advocate for the student’s individual needs. Links to these guides are provided below.
How can I advocate for my child?
Partnering with your child’s school early in the school year will be important when advocating for your child. Regularly communicating with teachers and other school personnel is recommended to establish services as well as to monitor progress and the ongoing (possibly changing) needs of your child. If needed, consider enlisting the support of your child’s medical team including physicians, therapists, psychologists, and/or educational consultants. This can be very helpful for conveying information about your child’s medical condition. It is likely that the school will require medical documentation so it will be important to collect this information and/or arrange to have it sent directly to the school.
What if my student is in college?
College students with disabilities are also protected under the federal law but there are some differences in accessing services between high school and college. The Americans with Disabilities Act (ADA) extends coverage of Section 504 to the higher education setting. Students with disabilities may qualify for academic accommodations (e.g., extended time for exams); however, unlike the K-12 setting, modifications (e.g., modifying exams) are not offered in higher education, as the student is expected to meet the same academic standards as his or her non-disabled peers. Another key difference for students moving from high school to college is that the student, who is now most likely an adult, is expected to serve as his or her own advocate. This means learning to articulate information about the disability and its functional impact. In other words, the student must be able to understand and describe how TM or ADEM impacts learning and academic performance. This information, in addition to documentation provided by the student’s medical team, will serve as the basis for accommodations provided to the student. A common concern is related to confidentiality so it should be noted that disability records are protected by the Family Educational Rights and Privacy Act (FERPA) and are in no way linked to the student’s transcript. For more information on ADA, see the resource list below.
For more information on special education services and the law, visit: https://www.wrightslaw.com
For more information on Section 504, visit the website for the Office for Civil Rights: https://www2.ed.gov/about/offices/list/ocr/504faq.html
For more information on ADA, visit: https://www.ada.gov
Visit the website of your state education agency
Lana Harder, PhD, ABPP is a clinical neuropsychologist at Children’s Medical Center Dallas and Assistant Professor of Psychiatry and Neurology and Neurotherapeutics at University of Texas Southwestern Medical Center
Linda McCowen, BA is certified in Special Education and is a teacher at Children’s Medical Center Dallas. She provides educational consultation to medical teams, patient families, and schools.
Nicholas Wignall, MA has a masters in Social Sciences and is a clinical psychology doctoral student at University of Texas Southwestern Medical Center