Environmental accommodations for university students affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), by Lily Chu, Lynn R Fuentes, Olena M Marshall and Arthur A. Mirin in Work pp. 1-12, 2020[DOI: 10.3233/WOR-203176]

Research abstract:

Background:  Today, 24% of college and university students are affected by a chronic health condition or disability. Existing support programs, including disability services, within colleges and universities are often unaccustomed to addressing the fluctuating and unpredictable changes in health and functioning faced by students with severe chronic illnesses.

This situation is especially difficult for students with lesser-known, invisible diseases like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex disease affecting up to 2.5 million Americans which often begins in late adolescence or young adulthood.

Objective:  Educate occupational therapists (OTs) about ME/CFS and steps they can take to assist students

Methods:  This work is based on a review of the scientific literature and our collective professional/ personal experiences.

Results:  ME/CFS’ effects on multiple organ systems combined with the unusual symptom of post-exertional malaise frequently and substantially decrease function. Currently, no effective disease-modifying treatments have been established.

Nevertheless, OTs can help students maximize their participation in university life by identifying potential obstacles, formulating practical solutions and negotiating with their institutions to implement reasonable, environmental accommodations.

Conclusions:  Through understanding this disease, being aware of possible support options, and recommending them as appropriate, OTs are in unique position to greatly improve these students’ lives.

Excerpts:

1.3. The valuable role of occupational therapists

A major goal of occupational therapy is to help individual patients live life to its fullest despite injury, illness, or disability [24]. OTs possess the unique skills and experience to assess the obstacles facing students, formulate possible solutions to overcome them, and advocate for those solutions to be put in place. According to one definition of advocacy carried out by OTs,

“Advocacy is a client-centered strategy involving a variety of actions taken by the client and therapist, directed to the client’s environment to enact change for the client such that engagement in occupation is enhanced through meeting basic human rights or improving quality of life” [25].

OTs also bring professional authority that students, families, and caregivers may not possess when advocating for and negotiating accommodations with professional staff and faculty of higher education institutions. This document is intended to serve as a brief, practical resource for OTs working with adult students afflicted by ME/CFS. We will describe what ME/CFS is, basic principles of medical treatment, and how OTs can help. This document is also relevant and helpful for university staff and faculty members.

3. Recommended accommodations

3.1. Maintain overall awareness of the fluctuating nature of ME/CFS

(A) Maintain awareness of the waxing and waning nature of ME/CFS and its unpredictability

3.2 Advise students to negotiate accommodations in advance

(B) Ensure that affected students are aware of the need to register with the disability office as early as possible.

(C) Advise students to schedule an appointment with an academic adviser/consultant early in their university years.

(D) Encourage students to communicate with instructors prior to beginning a class.

(E) Encourage students to request assignment flexibility when possible, emphasizing mastery over quantity of work

(F) Help students to minimize travel

3.3. Requests directed to disability and other university offices

(G) Request lecture notes and/or recordings when lectures are not online or otherwise available for review. If no recordings are available, allow students to record lectures on their own

(H) Request examination accommodations ahead of time.

(I) Request flexible scheduling when possible and the ability to miss or leave classes  without penalty when medically necessary.

(J) Request easily accessible rest areas on campus and the right to take opportunities for rest where and when needed.

(K) Request ergonomic furniture and devices, such as desks, chairs, computers, keyboards, computer mice, etc.

(L) Request as much flexibility as allowable for students who have a work assignment, such as a teaching assistantship, or another type of work-like experience, such as an experiential learning course requirement

(M) Facilitate the use of wheelchairs, mobility aids, and other power-driven mobility devices (OPDMDs)

3.4. Advocating for students at a systemic level

The next three accommodations are not under the direct purview of OTs. However, if asked, OTs can bring up systemic changes that universities can implement to improve the situation campus-wide for all students with ME/CFS and even students with other chronic illnesses. OTs can also offer to be a resource for the university.

(N) Provide awareness training to relevant university staff

(O) Arrange for support services,

(P) Ensure that the various university offices that serve students with ME/CFS are working synchronously and in harmony with each other.

Read full paper [uncorrected author proof]

NB Read about the law requiring ‘reasonable adjustments’ in UK education