Guest Blog: Making Reasonable Accommodations for ME/CFS Students

By Michael E. Ottlinger, PhD, DABT

Michael Ottlinger PicAs part of the Americans with Disabilities Act, Reasonable Accommodations must be made for individuals with a disability. This includes students at colleges, universities, secondary schools, etc., who no doubt encounter problems stemming from their ME/CFS and related disorders. Such assistance is intended to safeguard their (YOUR) civil rights by allowing them (YOU) to pursue jobs and other life activities, including education, from which they (YOU) might otherwise be excluded. The Act seeks to provide greater opportunities by lowering barriers to participation and eliminating discrimination, whether intentional or not. This Act has been in existence since 1990 and has been a great success, achieving very broad acceptance. (See ADA.gov for more details, including changes that took effect on Jan. 1, 2009.)

A process was created under this Act that requires what are called “Reasonable Accommodations” (RAs). Reasonable Accommodations involve finding ways to enable someone to, say, work a job successfully, by being given assistive technology or some other modification to the environment or, perhaps, a procedure that removes a barrier. Such accommodations must be doable, that is, they cannot place an “undue burden” on the employer or other party. And, the person requesting the accommodation still has to be able to do the thing, whatever it is, when given this help.

A point to highlight here in big bold letters is that where public institutions and education are concerned, there is a companion law that may be extremely relevant for ME/CFS students: The Americans with Disabilities Act Title II Technical Assistance Manual Covering State and Local Government Programs and Services. This holds that qualified individuals with a disability must be provided: “1) Reasonable modifications to a public entity’s rules, policies, or practices; 2) Removal of architectural, communication, or transportation barriers; or 3) Provision of auxiliary aids and services.”

These words open up a wide range of possibilities that can be pursued, but which have not been exploited fully by ME/CFS students. Universities, as an example, have all kind of “rules, policies, or practices” that are not handed down from heaven and will not cause the university to be swallowed up by the earth if they are modified. Also, in an era in which we have so much technology available and, in fact, already being used, it is astonishing that we haven’t been taking better advantage of it to help ME/CFS students progress and succeed.

For example, to address issues like fatigue, including mental and cognitive impairment, some ideas for RAs might include:

  • Reduced credit loads for full-time status. This will make the workloads more acceptable.
  • Reasonable flexibility and delays in deadlines. Exercising flexibility to accommodate periodic flares and worsening of symptoms is reasonable.
  • Providing class video recordings. On those days when a student is too tired to travel to class, or too tired during the actual class period to concentrate, supplemental video might help them continue and, crucially, avoid falling behind as they otherwise would have had they missed these classes.
  • Limitations on class lengths. This also helps limit the amount of time that a student with a condition like Postural Orthostatic Tachycardia Syndrome would have to stand or sit upright.
  • Allowing longer time periods for testing. Since mental as well as physical fatigue occurs. Possibly even adapting to more and shorter tests.
  • Creatively reducing the energy demands of laboratory classes. This is something that probably has never even been considered, but I am optimistic that we could find ways to do this and still achieve the aims of these activities.

ME/CFS students should be expected to have such problems, and they should be proactively handled. Also, the commonly heard statement: “If I make an exception for you then…” may violate the law.

I hope that we might be able to look more fully at some of these ideas and create a helpful set of RAs for students who need this kind of help as well as for physicians or others asked to provide documentation of these disabilities to do so in an effective manner. Most do not know how to write these letters as required and don’t have the time to research it on their own. This effort does not break radically new ground. The law as written, and as expanded every day on a case-by-case basis, is there to be rightfully applied.

To share your suggestions for Reasonable Accommodations for students with Michael, email: ottlingerme@gmail.com.

Tags: , , , , , , December 18, 2015
  • Kona Rose

    It would be grand if education would accommodate our challenges. It would even be grander if physicians believe this is a real disease.

  • Carollynn

    Thank you for this blog entry. It’s something I’ve circled around for several years now, hoping for helpful change that would allow me to pursue a graduate degree. After my first year of illness when I was mostly home-bound I had enough improvement to be able to take one class a semester at a nearby university if it met just twice a week, though I’d have to take the enxt terms off in order to recover enough to go back again, but I have not been well enough to do this since 2008. And yet I still dream and hope that I’ll be able to not just try again, but succeed. Here are specific things that make it difficult for all of us with ME:

    Many universities require continuous enrollment (no semesters off) once accepted into a program. They also require graduate degrees to be completed within seven years. It would help us if we could extend terms (with incompletes), take terms off to recover from the last one, and allow more than seven years to complete studies.

    Graduate programs also often require GRE’s for admission. Studying for GRE’s is prohibitive with cognitive dysfunction—I’d never then have the stamina to make it to real classes or do the work that would lead to a degree if I had to study for and complete these exams first, and receive a worthy score. For students with our cognitive dysfunction, waive the requirement for GRE’s if the student can show proficiency adequate to the area of study they want to pursue.

    Graduate programs (in the humanities at least) also often require fluency in at least one foreign language, sometimes two, and proficiency in another. I have tried learning another language “since I’m just home laying around all the time,” and while I have enjoyed joyful learning on a good day, the PEM it causes has been prohibitive to any substantial learning process. After one joyful learning/crash it may take two weeks to recover enough for a good day to try again, and by then the lag time mostly kills what the PEM has not. Of course I’d prefer being able to learn another language well enough to read texts in the original, yet without that ability I still believe I can patch together enough mental power to do research and writing with the time allowances above to achieve something competitive with other students and for which a unversity would be proud.

    Graduate programs also often require oral exams, defending a thesis or dissertation to a committee/jury of professors. If I could plan not just a good day but a rare great day, I might be able to accomplish this for an hour or two, but even good days can turn with no apparent rhyme or reason (despite my twelve years of trial and error at perfecting this). This thinking/performing on the spot may be more of an exhibit of the impairment of ME/CFS than an exhibit of what we indeed know and have mastered. I appreciate that creating flexibility for exam duration, perhaps multiple short oral exams, for disabled students would be difficult for a group of busy faculty. Perhaps oral exams could be replaced with multiple shorter written tests and the ability for the student to postpone them until having relatively good days.

    Being able to take a class from home through Skype or other face-time-like participation would help. Often, just the drive to school, parking, walking to the class is an hour or more each way, so the two or more hours of simply getting there and back might be a student’s whole window of ability for many days, not allowing us to be relatively healthfully present for the class itself. Other things that would help facilitate class participation are accessible parking, classes early in the day, ability to extend library loan times, to have inter-library loan books sent to one’s house rather than having to pick them up in person–again sapping all of energy available to the student for what might have been used for learning.

    I can’t imagine trying to patch together a graduate program if I have to swim upstream without the support of advisors, faculty, departments, and administration—but all of us with ME know how scarce support can be even from those closest to us. I do believe that our community has momentum right now that might lead to a change in this in some years, though it may be too late by then for me. When our government policies toward this illness shift, doctors, insurers, and media will follow. When they do, friends, family, and schools will have information that may lead to more compassion and support for how difficult these dreams and goals are for us to achieve—but how we still might with their help. Compassionate understanding, allowances, and encouragement from universities could help a whole lot of us to still “do something” with our lives, participate and contribute to our world, rather than simply languish.

    • Hi Carollynn,

      I’m sorry to be so slow in responding, but I’m not part of the blogging generation. I guess I can still learn though.

      The issues you ticked off are classic CFS-patient problems and exactly the type of impediments that need to be addressed. It isn’t just CFS patients who have these barriers either, so the effort to assist people and to advance the awareness and appreciation of how these can be tackled will be of even broader benefit.

      You mentioned:

      “Continuous Enrollment” – Here’s an example of a rule or practice that is arguably dispensable in appropriate circumstances. It exists for some reason, likely to weed out people whom the college sees as not serious about pursuing a program. Who knows. However, the question is, in the face of someone presenting a reasonable, medically well-supported (disability-related and documented) reason, is the college’s need for that [arbitrary] rule, of such importance that it must be preserved? That’s the EEO question, I think. [This is from a person who is not a lawyer, so I invite any lawyers with greater expertise to jump in.]

      “Time Limits” – This requirement is comparable to the first issue of continuous enrollment. I think it would need to be approached on much the same basis. The question of how long would surely come up.

      “Incomplete Grades,” “Languages,” Oral Exams [anxiety and ways to reduce that, length, sitting or standing, all part of the discussion]- Same kind of things. What is essential to preserving the integrity of the program. Arguing the essential nature of a requirement legally is more demanding for the institutions to do than it is for them in casual conversation.

      “Skype and Videos” – The technology is there and should be used.

      Now, however, we have to look at it from the college’s perspective, knowing what concerns them and what kinds of objections they might raise. One good reason for this is so you might be equipped to more effectively respond. Barring that, there are advocates. Your State Representative of State Senator might be a good go-to persons. It’s just a phone call and people have to get past the fear of calling people and just talking to them. [No help? Say, “thank you,” and move on to try someone else who might know more and / or care more.] It may require a lawyer. [That’s just fine. But, it can cost money however if you are on your own.]

      But, here are some issues:

      The premise is that the person asking for an accommodation should be able to succeed if they are given the assistance. Hard one for us because we don’t always know and it depends upon how flexible they are willing to be. Getting these things put in place might be a piecemeal process.

      The accommodations asked for cannot place an undue burden on the institution. EEO laws have gone a long way towards mandating things that handicapped people should receive, like ramps and elevators. So, a few things like, possibly, reclining chairs, wouldn’t seem to be unreasonable. Skype and other remote video as well as making the videos available on the web uses technology that is here and now pretty inexpensive. It wouldn’t seem like a great burden. Colleges are going in that direction anyway.

      Remember, there are “rules and practices” and then “physical accommodations or facility modification” types of accommodations.

      I’m hoping that a template might be developed to give better assistance on a symptom by symptom, need by need, basis. Doctors need help writing these things effectively, some efficiency is gained when they have a clearer idea as to what they need to say. That would be a good first step because each accommodation has to be explained – of course – and then justified. The request need not be written, although some institutions may have forms they use; I don’t know. You certainly are not limited to their forms insofar as what you want to include.

      The request can be made verbally. It will begin with a conversation, certainly. One advantage of writing it out however is that you organize your list of needs better and prepare yourself better to answer their questions. It doesn’t have to be a treatise. Try one page if that’s all you can manage. More answers can be provided as the process evolves. [Fact sheets, if they were available, would be terrific because they could just be included.] Also, it’s legally invaluable, to have written records with dates and specifics.

      Don’t expect everything. Try to work with them in good faith. But, if that proves fruitless, you do have recourse available. Share your experiences if you are comfortable with that and look for help. You may just need to explain it better.

      I appreciate that this all sounds like an incredible burden, that it is unfamiliar, and that it would be hard for most people to know where to even start. It’s been that way for everyone with disabilities, and still is for many groups. But there has also been huge progress over the years.

      Your problems are now and pressing, so this isn’t going to sound entirely adequate. I know. But, I hope that help is on the way for you and millions of others in similar situations. Try not to be discouraged. Slow progress is something you can be proud of and it can be an important aspect of your struggle to recovery.

      -Michael Ottlinger