A great education—with MS
Learning the law
Kathleen recommends that parents learn all they can about the full range of legal protections their children have. “The standard line I get all the time, even from medical professionals, is, ‘We didn’t realize kids could get MS,’” she says. That means she has to raise awareness across the board—from confirming that, yes, children do get MS, to how symptoms may affect school performance.
Any student with physical, cognitive or other disabilities is protected by federal laws, including the Americans with Disabilities Act, which prohibits discrimination on the basis of disability, and Section 504 of the Rehabilitation Act of 1973, which protects the rights of individuals with disabilities in programs that receive federal funding from the U.S. Department of Education.
Section 504 contains the Individuals with Disabilities Education Act (IDEA), which ensures that every child with a disability is entitled to a “free and appropriate public education.”
Under IDEA, school districts must establish standards and procedures to evaluate and appropriately place students who need special education or services and aids. The school district must then develop a documented plan, such as an Individualized Education Program (IEP), to provide what the student needs to fully access a learning environment.
College and the law
“It’s important that the child have documentation of a 504 Plan or IEP before they finish high school; otherwise it will be extremely difficult to get the right services in college,” says Laurie Lou Smith, EdS, a nationally certified school psychologist who works with the Center for Pediatric Onset Demyelinating Disease in the Department of Pediatrics at the University of Alabama in Birmingham.
Once at college, Smith recommends that the student contact the college’s office of disability services to request accommodations. She says it’s best to visit the office in person, which will help develop an ongoing relationship.
Reyne Mullins learned this firsthand. After a tough first semester, he visited his college’s office of disability services, which now provides him with test accommodation slips each semester. The slips detail his need for a private testing room and twice the allotted time for testing. He was also able to move into a single dorm room, where he could rest any time of day. While schools may be required by law to identify students with disabilities and provide what they need for an equal education, that doesn’t mean they will capture every turn of a complicated and unpredictable disease like MS. There’s a whole range of accommodations that schools could offer that they’re not necessarily obliged to provide by law.
Therefore, it’s essential for students and their families to identify symptoms that affect attendance, studying and participation, and to stay aware of how symptoms may change over time. A frank discussion with a neurologist is a good place to start. Your doctor can also provide referrals to other healthcare providers, such as physical or speech therapists.
Ways to manage
Emily Blosberg has permission to wear a baseball cap or sunglasses in the classroom, due to vision difficulties created by artificial lighting. She also has a volunteer reading buddy because even five to 10 minutes of reading can give her headaches and fatigue. She downloads free audio textbooks from the Library of Congress, and utilizes Learning Ally, which offers audio textbooks for a small charge. “I don’t take a full class load. Instead, I have an hour break during the day after lunch,” she says. “It helps me get through the rest of the day.” She has taken several independent study classes and plans to do the same in college.