Education Laws and Resources for Students with Irritable Bowel Syndrome (IBS)

August 27, 2013

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 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.

Gut Week 2013 in the United Kingdom and Ireland is August 19-25, 2013

August 19, 2013

UPDATE: 08/03/2014 The most recent version of this post can be found at August 3, 2014.

This week is National Gut Week in the U.K. and neighboring Ireland, and a good time to update readers in those countries on some of the available resources for irritable bowel syndrome and other gastrointestinal conditions in that region of the world.

The official site for Gut Week, sponsored by various charities, organizations and companies relevant to a range of digestive health conditions provides some general information on the website and links to other gastrointestinal resources It also offers information packets, including some articles from leading professionals in the U.K. and Ireland, available in hard copy by request or by download to people who provide contact information from within the U.K. or Ireland. There are also contests on the site in which to participate during this week.

One sponsor of Gut Week is The IBS Network, formerly The Gut Trust, is in Sheffield and is the national charity for irritable bowel syndrome in the U.K. For a modest annual fee, members get access to a telephone helpline, support groups, a magazine and other written information, news about advocacy and research, an online self-care tool, and a “Can’t Wait” card meant to assist people with IBS in quickly communicating to others the need for access to a public toilet. The IBS Network also has an online community available to members.

As noted previously on this blog, some people with IBS in the U.K. have found RADAR keys, meant to unlock disability-accessible public toilets, useful. They are so named for the Royal Association for Disability Rights, which has now merged with other organizations to form Disability U.K., located in London.  In addition to selling RADAR keys and guides and smartphone apps of locations where they can be used, Disability U.K. provides a wide range of information and resources for people with all types of disabilities and medical conditions, including general advice on legal protections, benefits and other disability advocacy within the U.K. Many of these apply to IBS.

It is IBS Impact’s understanding that experiences with people with IBS receiving disability benefits within the U.K. or Ireland vary greatly. Some people are able to successfully obtain them, but others not. The following government websites have useful information on benefits and other disability-related topics: disability information in the U.K. and Citizens Information Board disability information in Ireland.

For evidence-based guidelines on treatment of IBS, see the British Society of Gastroenterology (2007), the National Institute for Health and Clinical Excellence (2008)  and the British Dietetic Association (2012). The South Manchester Functional Bowel Service, headed by Peter Whorwell, MD also has a website of information on IBS, gut-directed hypnotherapy, on which Dr. Whorwell is an international authority and pioneer, and the research studies and clinical care offered at his service.

Michael Mahoney, clinical hypnotherapist in Cheshire, has different, home-based CD/MP3  hypnotherapy protocols from Dr. Whorwell’s, which many adults and children with IBS or functional abdominal pain (also known as recurrent abdominal pain)  in various countries have found helpful, as well as an audio CD designed to explain IBS to family and friends. An article by Mike can be found on the family and friends page of the IBS Impact main site. A link to details on his IBS Audio 100 program for adults can be found on the links page, and a link to details on the IBS Audio 60 program for children on the children’s page.

Also on IBS Impact’s family and friends page is an an article by Sophie Lee, an adult with IBS in the U.K. who has had IBS since childhood. Sophie offered this excerpt from her published memoir to IBS Impact in the hope of increasing awareness of IBS. Some readers may be aware that she also owns IBS Tales, a website and support forum for people with IBS to share their successes and disappointments. It draws readers internationally, but as a site originating in the U.K., has more of a U.K. focus. Please be aware that because the site is composed of personal experiences with conventional, complementary and self-help treatment approaches contributed by many people, certain information may or may not be scientifically accurate, and in any case, individual experiences will vary. IBS Impact strongly encourages positive peer support and sharing of reputable information and personal experiences by people with IBS, but does not focus on treatment advice. We urge readers to also consult the evidence-based resources given in this post and the individual advice of their own health care providers so that they can make the fully informed choices best for their own situations.

A newer online forum has just started recently at the Talk HealthPartnership, sponsored by NHS Choices, as discussed on this blog on July 7, 2013. Earlier in 2013, a new West Midlands support group created downloadable awareness posters. the founders can be contacted through IBS West Midlands.

Julie Thompson, a registered dietician who works in the National Health Service and is an advisor to the IBS Network, has a blog, Clinical Alimentary, that addresses digestive health and nutrition and the scientific evidence behind various topics of interest. Finally, readers may be interested in this December 24, 2011 post by IBS Impact on fascinating research supported by the Wellcome Trust on the history of IBS in the U.K.

This post is not intended to be an exhaustive list of every resource available in the United Kingdom or Ireland for IBS, but a starting point. Readers are encouraged to comment on this post or through the contact links on the IBS Impact main website if there are suggestions of topics or resources or advocacy concerns that might be addressed in the future. IBS Impact draws many site visitors from the U.K, and Ireland, is pleased to have developed positive contacts with several of the resources listed in this post. We hope that most U.K. and Irish readers will find some useful information and direction, and that constructive dialogue and cooperation with other organizations, forums and individuals will continue in the interests of all people with IBS in those countries.

Representative Perlmutter of Colorado Co-Sponsors HR 842 for Functional Gastrointestinal and Motility Disorders

August 13, 2013

UPDATE: 06/13/2015: HR 842 did not pass, but a similar bill, HR 2311, is currently in the House of Representatives for 2015-2016. Please click on the HR 2311 sub-category on the right sidebar of this blog to see the relevant posts.

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, Representative Ed Perlmutter (D-CO-7) has recently signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Perlmutter is serving his fourth term as a member of the House of Representatives. He represents Colorado’s 7th district which encompasses the northern and western suburbs of Denver in Adams and Jefferson Counties. He was also a co-sponsor of the previous version of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act,  HR 2239, in the 112th Congress during 2011-2012. Representative Perlmutter’s official House website is linked here.

If you are a constituent of Representative Perlmutter, please take a few minutes to write or call him with your thanks for his continuing support of HR 842 and the functional gastrointestinal and motility disorders community.

In officially supporting HR 842, Representative Perlmutter joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Julia Brownley (D-CA-26), Representative Bobby Rush (D-IL-1),  Representative Gwen Moore (D-WI-5), Representative Ron Kind (D-WI-3), Representative Susan Davis (D-CA-53),  Representative Peter Welch (D-VT), Representative James McGovern (D-MA-2), Representative Gerald Connolly (D-VA-11), Representative Louise Slaughter (D-NY-25), and Representative Bill Posey (R-FL-8). U.S. citizens residing in the districts of Representative Perlmutter’s colleagues listed here, please thank them as well.

According to the information on THOMAS, it appears that the bill is currently under consideration in the Subcommittee on Health. Click on the link above if you would like to see a list of its members.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 842 and you have not contacted him or her recently to ask for his or her support, please see the previous post from March 2, 2013  for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2012 elections, district boundaries that may have been re-drawn, or if you have moved.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics. However, even general expressions of support are helpful.

HR 842 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 842.

NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research also sometimes involves multinational teams of scientists, and in any case, study results are usually published globally, adding to the cumulative knowledge worldwide.

It is IBS Impact’s understanding that HR 842 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 113th,  the necessary number of sponsor/cosponsors must be reached by December 2014. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 842 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 842 as they occur. Links to the social media sites can be found on the right sidebar of the blog.

U.S. Food and Drug Administration (FDA) Sets Standard for “Gluten-Free” Labeling

August 7, 2013

On August 2, 2013, the U.S. Food and Drug Administration (FDA) issued a standard definition for the use of the terms “gluten-free”, “free of gluten”, “no gluten” and “without gluten” in voluntary food labeling. Gluten is a type of protein found naturally in wheat, barley, rye and hybrids using these grains. From now on, the above terms may only be used if the gluten content is less than 20 parts per million. Food manufacturers who do not already meet this standard have up to one year from this ruling to have their labels comply.

This change is most relevant to Americans with celiac disease, an autoimmune disorder also sometimes known as celiac sprue or gluten-sensitive enteropathy or GSE, who must strictly avoid gluten to avoid damage to the small intestine and other potentially serious medical complications. However, this information may also be useful to some subsets of people with irritable bowel syndrome.

Firstly, some symptoms of celiac disease are similar to some symptoms of irritable bowel syndrome and some individuals who may actually have celiac disease may currently be misdiagnosed with IBS. In 2009, the IBS Task Force of the American College of Gastroenterology recommended, as part of best practices for medical care for IBS, that patients whose symptoms are consistent with IBS with diarrhea (IBS-D) or mixed/alternating IBS (IBS-M or IBS-A) be tested for celiac disease. (See page S3.) However, this may or may not have occurred, especially in people diagnosed with IBS prior to that recommendation. According to a July 29, 2013 post by IBS Guide Barbara Bradley Bolen, PhD, a journal article in Scandinavia reported on a study in that region of Europe showing that many study participants with celiac disease were initially wrongly diagnosed with IBS, leading to a delay in proper treatment.

Secondly, some individuals, including some with IBS, who test negative for celiac disease do anecdotally report that their symptoms have improved when they have gone gluten-free. Various research studies in very recent years have acknowledged the probable existence of non-celiac wheat sensitivity in some people, but scientific evidence is still conflicting or inconclusive as to the prevalence and nature of the problem, whether the intolerance is to gluten or other components of wheat, or appropriate management of the condition.

Thirdly, the low FODMAP diet, originally developed in Australia, has received increasing interest and research internationally as a successful option for some people to manage IBS. A component of the low FODMAP strategy is to reduce or eliminate wheat because it contains fructans, a carbohydrate that may be problematic and trigger IBS symptoms for some people. As Patsy Catsos, a registered, licensed dietitian in private practice in Portland, Maine who specializes in the low FODMAP approach states on her blog linked earlier in this paragraph, gluten and fructans are not the same thing. However, for most people avoiding wheat for low FODMAP purposes, gluten-free labeling can also make selecting appropriate foods a bit easier.

It should be noted that while dietary modifications are helpful in reducing symptoms for many people with IBS, “safe” and “trigger” foods vary from individual to individual. Some people with IBS find that they are not significantly helped by diet at all.  Diet does not cause IBS and there is no single “IBS diet” that helps everyone. For more on “Diet for IBS,”please see the linked video from the University of North Carolina Center for Functional GI and Motility Disorders Expert Update on Treatments for Functional GI Disorders conference in June 2012. The presenter is Erin Slater, RD, LDN, clinical dietitian and also a person with IBS, who also shared her experiences in a PBS television program mentioned on the IBS Impact blog on December 10, 2012.

IBS Impact does not advocate any particular diet or treatment option. We do strive to provide information and resources that are  reputable, accurate and balanced to the extent of the current scientific knowledge of experienced professionals in the field of IBS and functional gastrointestinal disorders, and to encourage others with IBS and their families to make fully informed decisions that are right for their own situations. It is hoped that the new FDA ruling proves helpful to those in the IBS community who believe they benefit from avoiding gluten or wheat.