In various regions of the United States and other countries where the academic year runs from autumn through spring, school is just starting for most students, whether they are young children beginning preschool or grade school through adults attending a college, university or other postsecondary program. Thus, it is a good time to review some of the laws and resources related to education, primarily in the U.S., but a few in other countries, as they relate to students with disabilities or chronic medical conditions like irritable bowel syndrome. Some are specific to children and teens and their families and others specific to college or university students. Some information applies to all ages.
In the United States, a combination of several laws, the earliest of which were enacted in the 1970s, protect access by students with disabilities to an education. There is no single law that applies in all situations, and sometimes more than one such law may overlap, so it is important to be clear on the differences among those most likely to apply in regard to IBS.
To summarize briefly, Section 504 of the Rehabilitation Act of 1973 prohibits discrimination against people with disabilities in any situation where an entity receives any federal government funds or has a contract with an entity that receives any federal funds. This law is not specific to education, but as most public school districts, as well as public and private colleges and universities do receive such funds or maintain such contracts, they are covered and are required to make “reasonable accommodations” to the needs of individuals with disabilities, including students. Disability is broadly defined by three categories “a physical or mental impairment that substantially limits one or more major life activities,” “a record of such an impairment,” such as a previous history of a disabling medical condition, even if one is not currently impaired, or “regarded as having an impairment,” even if one does not have one, or experiences discrimination because of association with someone who is disabled. Very similar wording was used two decades later in the Americans With Disabilities Act of 1990. This blog’s previous post on the ADA was published on July 30. 2012. Both the Rehabilitation Act and the ADA are written broadly to encompass many disabilities and potential accommodations depending on an individual person’s own circumstances as long as there is not “undue hardship” to the entity from which accommodations are requested. This means, generally speaking, a larger school district or one with more resources will be expected to do more than a small one without such resources. However, the laws do not contain specific lists of qualifying disabilities, acceptable accommodations or dollar amounts. As amended in 2008, however, the ADA added wording to clarify that it also was intended to apply to disabilities of major bodily functions and disabilities that may come and go episodically, both of which can describe IBS.
For a student with IBS, depending on the individual situation, examples of possible accommodations might include unrestricted access to the bathroom, extended time for exams if interrupted for a long time by restroom visits, modified policies for make-up work if there are frequent absences, or food substitutions or permission to bring food from home if the school usually provides meals. For a child or teenager in preschool through high school, the parent or guardian, as well as the student if old enough to formally participate, would work with the school to create a 504 plan outlining how the student’s needs will be met in school. This is a legal document. For an adult student in post-secondary education, most campuses have a disability services office or program, or at least a designated 504/ADA coordinator who will review the request for accommodations and any relevant medical or educational documentation, and provide a letter for the student to give faculty members that verifies the appropriate accommodations. Depending on the resources of a particular educational institution, some may provide additional disability-related services, support or advocacy, but both Section 504 and the ADA are designed to protect the disabled person’s privacy and right to disclose or not to disclose, so a college or university student will be expected to take the lead in communicating his or her own needs. Some choose not to document a medical condition or disability officially with the college or university, but are able to make arrangements with understanding professors regarding relatively minor needs. While one is free to choose not to disclose a disabling condition, obviously, some degree of disclosure is necessary in order to claim the protection of any disability rights laws.
For most children and youth with IBS in public schools in the United States, a 504 plan is sufficient. However, if they have additional apparent or identified disabilities or complex needs that require special education or services beyond relatively minor adaptations to the typical school program, they may qualify for an Individualized Education Plan (IEP) under the Individuals With Disabilities Education Act (IDEA). IDEA was first signed into law under a different name in 1975 and has been reauthorized and revised since. It mandates a “free and appropriate education in the least restrictive environment” for children with disabilities. There is a Committee on Special Education in every school district, as well as often a Committee on Preschool Special Education for children receiving early intervention and, frequently, parent groups either within the school district structure or in families’ local community, county or region. The IDEA includes several categories of disabilities including “Other Health Impaired,” but the legal processes, timelines, and the disabilities and services are generally more specific, detailed and complex than under Section 504, and not all students with all disabilities will need and/or be qualified to receive an IEP under IDEA rather than a 504 plan under the Rehabilitation Act.
Also, please note that the IDEA and IEPs apply only to public schools, not independent, non-public schools. The student’s public school district is legally and financially responsible for meeting his or her disability-related needs For some students with complex disabilities this may include enrollment in a private school if neither the student’s own public school district nor another nearby public school district with which it can arrange to accept the student, can provide an appropriate education. There are also situations in which the public school district provides only specific disability-related services, while the family has chosen a private or parochial school or homeschooling for unrelated reasons. However, these circumstances would probably not apply to the needs of a typical student whose only disability is IBS. An independent school itself would have no responsibilities under the IDEA. Private schools are expected, under the Americans With Disabilities Act public accommodations provisions, which are not specific to education, to provide reasonable accommodations to “otherwise qualified individuals” if they would not cause “undue hardship” or substantially change the nature of the educational program. Depending on any federal funding or contracts, they might be held to a similar requirement under Section 504, and that might be sufficient for many students with IBS. However, the ADA and Section 504 leave enough room for interpretation that legal protections and precedents are generally stronger in public schools. IDEA also does not apply to students beyond high school. They will not receive IEPs, nor are past IEPs valid in a post-secondary setting, although they may be used to document the disability to the educational institution. College and university students are accommodated under Section 504 and/or the ADA as appropriate.
Please see the following additional resources on this topic. While several members of IBS Impact, including the founder, have extensive personal and professional experience in disability advocacy and can knowledgeably discuss the issues and answer general questions on this blog, and point readers in appropriate directions, keep in mind that none of these resources are legal advice for a specific situation. As always, we encourage readers to inform themselves fully from reputable sources so they can make the best decisions for themselves or their family member with IBS.
“Work, School and Disability Benefits and IBS”, for the U.S. a brief article on the IBS Impact advocacy page authored by an IBS Impact member. Scroll down on the page to find it.
“Back to School with IBS” by About.com IBS Guide Barbara Bradley Bolen, PhD, overview on 504 plans and updated on August 26, 2013
National Dissemination Center for Children with Disabilities (also known as NICHCY, the acronym for a former name) a comprehensive U.S. clearinghouse on the education of children and youth with disabilities. The NICHCY Disability and Education Laws page provides detailed information on all relevant laws, links to the actual text and other resources. The site includes audio accessibility for site visitors who might have visual or reading disabilities.
Many countries other than the U.S. also have their own national or state/provincial laws protecting the rights of students with disabilities to an education. Various disability-related resources in Canada, the United Kingdom, Ireland, Australia and New Zealand are listed on the links page of the IBS Impact website. We especially encourage readers in those countries, as well as other nations where English is a primary or major secondary language, to share in the comments of this blog their experiences and additional reputable information and resources specific to their countries that may be of help to other readers. Of particular interest to college and university students in Canada is InvisAbilities, a support and awareness organization for students with many different kinds of hidden chronic illnesses and disabilities. IBS Impact first wrote about it on this blog on February 7, 2012, and it has apparently added several chapters at additional Canadian universities since then. For parents of children and teens with IBS, particularly in the U.K., Abominable Abdominal, a thoughtful, relatively new blog by a parent of a preteen recently diagnosed with functional abdominal pain (similar to IBS but without the bowel disturbances) and coeliac disease provides a window into one family’s experience and many U.K. and pediatric-centered links.
Finally, parents of children and youth with functional gastrointestinal disorders may find IBS Impact’s IBS & Children page or the April 11, 2012 post helpful in locating support from other parents or medical or research resources specific to children and youth. Once again, we encourage readers to comment on their experiences and helpful resources so that IBS Impact can better reach this subset of the IBS community.